CJD Talk

If You Are Going To The CJD Family Conference

2007-06-15T14:52:00.000-07:00

If you are going to the CJD Family Conference and interested in helping me get info about it back to the masses, please e-mail me. (Hotwords AT mac dot com).

I'm looking for people to interview about their experience at the family conference, what you learned there, who you met, etc. You can be my correspondent and I'll be making a podcast out of all the audio...if I get some participation. So if you are interested, let me know. I can't make it to the conference this year, but I would still like to support it and be there "in spirit."

I am definitely NOT attending the conference next month

2007-06-09T23:17:00.000-07:00

The Bad News:

It's going to be too much of a financial burden to attend the conference next month for me, especially with Boston University's expensive tuition due. (More on that in another blog, but it's impossible to get much finaid in my program so it's all out of pocket). I seemingly can't stray far from the chiropractor these days either, which is also another story which some of you may know.

The Good News:

I don't really feel I have to attend the conference in order to make a difference. Though I'd really love to meet everyone in person, especially more E200K people, and fCJD families in general. I'm going to continue doing my thing from Phoenix for this year...and will again try for next year's family conference.

My New Project Is Beginning

2007-05-26T21:09:00.002-07:00

I'm starting a new website and a new blog dedicated to one very tailored subject -- finding the cure for CJD. Read and comment on the new blog.

I elude on the new blog to the fact that I have purchased the domain CURECJD.com. More to come on that later... Right now, I'll start with the blog. The plan right now is to post links to new info on who is finding the cure for CJD.

If you've read CJD Talk for a while, you know I come from a long line of genetic cases. How long, I am not sure. Since this is the Internet, I'm going to post some info right now I just hope someone will eventually find by Google search someday. I have tried to look online for relatives of Walter Zadzielka before and have come up empty. I did find a Vicki Lovett had posted something online somewhere years ago trying to find autopsy info on Walter Zadzielka...or is it Zadzeilka, or is it Zadel? I e-mailed her but the address no longer worked. Ms. Lovett, I have no info on Walter's autopsy. But he was my mother's uncle.

My mother came from a long line of Polish Catholics. Her family was huge and from Ohio. My mother used to tell me she had 100 cousins. There's a huge potential for many more genetic cases of CJD right there.

So if you happen upon this blog and you are related to anyone whose last name is Zadel, you may be a relative. If you are, the genetic mutation is E200K. That is the only autopsy info you would have gotten off of any Zadel autopsy. Feel free to get in touch with me, or you don't have to. It's personal; I understand.

CJD is a death sentence, but it shouldn't be. So since my deal in life is genetics I honestly don't care too much about the beef/vCJD side of things. It's horrible, yes. I'm not taking anything away from that. But I feel like I need to get a move on here if I want to see my own grandchildren someday. My mother died at age 56 and I'm 27 now, hence my extreme interest in focusing on the cure.

At the moment, the cure seems to be exploring something like PPS. It is no cure today in my opinion, but it's all we've got. There are other things being researched, and I'd like to make sure people know about those items too.

So now you know that finding the CURE for CJD is my interest and you also know why. Am I a carrier? I don't know. I won't get tested. Whether I carry it or not, the cure is still important to me. The cure is the only answer whether beef is in the equation or not. CJD is in the blood supply. It's not going away. And what if there is another wave? What if we can cure the animals first? What if we can only cure one mutation of CJD at first?

This is what the new blog will be about. Feedback welcome.

Mother's Day Sucks.

2007-05-13T17:02:00.000-07:00

It's Mother's Day and I wish you a happy one, but let's face the truth here -- this is not a happy day for a lot of us who have lost a mother to CJD. I try to make the best of it by focusing on the living, especially because I have a wonderful stepmother and her mother is a wonderful grandmother to me. But we also have to remember the dead.

My mother's name was Phyllis Larson. She was a Led Zeppelin fan. My mother liked rock n' roll. I never did figure out if she was a democrat or a republican and maybe she didn't know either. I do suppose she was republican, but I'll never know for sure. One thing was for sure; my mother was cosmopolitan. She was not a woman that enjoyed anything less than room service. No camping for her. She liked shopping and her favorite place was Stanford Shopping Center. She was a Raider fan. I think she'd be happy with this year's first-round draft pick. She went to a Suns playoff game with me a few years ago when they played the Spurs. History is repeating with the Suns right now, in case you don't follow sports. I think mom would have enjoyed the Spots 620 KTAR nose bandaids everyone wore at the game the other day. Two of her favorite stores were Sephora and Ulta. She liked comfortable shoes. She liked Anderson Cooper on CNN and "Everybody Loves Raymond." Her vice was chocolate. She'd be happy to know I'll be in Mexico this year on the anniversary of her death, having fun with my new family. She'd be absolutely fascinated with you all and to know all about the disease that killed her. Thank you for visiting my blog about CJD. Please leave a comment to tell me about your mother when you get a chance. Thank you.

--Heather Larson

Will I Make The CJD Family Conference?

2007-05-13T16:52:00.000-07:00

This one is still up in the air. There are a few question marks circling my head right now and as soon as they are answered, I will know if I am able to make the CJD Family Conference in July. It's just a month and a half away!

Get More Info on the CJD Family Conference

I am desensitized to this madness.

2007-04-14T23:37:00.000-07:00

I guess I no longer realize what a horrific disease CJD is. I'm a couple years removed from the experience and I've definitely moved on with my life. I do what I can for the cause of finding a cure whenever I have some free time, I blog, I speak, I help journalists, but I don't have time to do the kinds of things I'd like to do.

Tonight I was reminded how terrifying this disease is and how little the "normal people" know about it. I say "normal" meaning those who have yet to hear of CJD. A coworker and I were swapping stories about losing our parents. I was telling my buddy about identifying my mother's body post-autopsy after it was returned from New Mexico -- the nearest place where I could find someone to do her autopsy. We live in Phoenix. I told him how her body bag was marked "biohazard" in big black Sharpie pen letters. It blew his mind. I forgot this impact these stories have. They really need to be told more often to anyone who wants to listen.

Ouch. Over A Month Since My Last Post.

2007-04-12T19:15:00.000-07:00

Ok, I do have big ideas for the blog backing up until I get some free time. That will likely get worked on during my Boston University summer break, which cannot come soon enough! So bear with me, more is to come, I promise.

I got my invite to the CJD Foundation Family Conference in July. I swear, this year I have to make it out there. Even if I'm in school because that's the meaning of attending college online.

I almost have a better excuse for not posting -- my weekend car accident. I was very lucky; after blowing out a tire going 65 mph on the 101 in the fast lane, I ended up with mere scratches. I'm also keeping my chiropractor's office and insurance company quite busy, not to mention anyone I know with a connection to cars I may want to think about purchasing. The car, a 1999 Ford Mustang, is a total loss.

Watch this spot for more news on my future car. More importantly, watch for more info about CJD soon!

What Would I Do with a Book About CJD?

2007-03-11T21:39:00.000-07:00

Not that I have time to write a book about CJD if I don't even have time to make blog posts; Boston University keeps me busy. It's the kind of busy that made me want to lay by the pool a whole lot last week instead of keeping up my usual frenetic pace of working, schooling, and blogging. So I'm back now (and soon school will be as well) with a question: what on Earth would I do with a book about CJD?

Though it would make a good topic, how many people would really read a book about CJD? How on earth could this ever be marketed to anyone? Who would read this? What book publisher would take a risk on publishing something that only a small niche would be interested in reading? These are the questions I ask myself each day before tossing around the idea of just writing the book and then giving it a Creative Commons license.

Are there stories that need to be told? Absolutely. But how do I tell them? Which is the best way? That's what I've been thinking of this past week. Who wants to read a book on CJD? Could there be a more depressing book?

CJD Talk reaches 100 posts!

2007-02-28T15:07:00.000-07:00

Hey! That last post I made today was my 100th post! Not too shabby. Thanks to the small audience I have for checking in with the blog! My hope is to use the blog to unite CJD families all over the world for networking purposes. I also want everyone affected by CJD who stops here to leave a comment -- leave a short comment or a long one, tell your story, or memorialize your loved one.

If you have a website or a blog, please let me know so I can post a link to it here. If you have a "CURE CJD" license plate, please take a photo and send it to me so I can post it. And same thing goes for is you have a sticker, t-shirt, magnet, or bracelet for sale to raise money. Anything you're up to in the fight to cure this disease is something I want to blog about.

It is my goal to use this blog to show how many people CJD affects and how. I can't do that without your help!

For example, if mad cow disease hits the news again, if a cow tests positive for BSE in America again, then people will be online searching for terms like "CJD," "mad cow disease," "TSE," and "BSE" just to name a few. If people happen to come across this blog in a search, I want them to see how many people care about CJD.

So please, keep in touch. You may e-mail me at: heatlarson AT yahoo DOT com, or you can leave a comment.

Thought for the Day:

2007-02-28T06:28:00.000-07:00

If a tree falls in the forest does it not make a sound? Just because no one is there to hear it, doesn't mean the sound does not exist, right?

Just because CJD hasn't happened to someone you know yet doesn't mean it won't. Just because we test a few cattle a year for BSE without positive results doesn't mean the millions not tested don't have it. Just because we don't know about how to cure CJD yet doens't mean the cure doesn't exist. Just because we can't see CJD in the blood supply doesn't mean it isn't filling bag of blood waiting to be transfused into needy patients.

Prediction: CJD Talk likely on hiatus this week

2007-02-27T14:41:00.000-07:00

It's a rough week for me to do updates on CJD Talk, so I'm apologizing in advance. We got a good comment volley going last week about Pentosan Polysulphate, or PPS, and I want to keep it going!

But this week I'm hard at work on my research paper for my class at Boston University and the boyfriend is home from an extended business trip for the week leaving me very little free time to blog. CJD Talk will get much more interesting next week when he's again out of town and I have a week off from school!

Feel free to hit the comments below to keep the blog alive for a few days.

CJD Foundation Newsletter 2/25/07

2007-02-26T08:34:00.000-07:00

February 25, 2007

Dear Friends:

I have just returned from a very interesting meeting in Calgary, Alberta, Canada. It was the first international meeting of the one-year-old PrioNet Canada organization. The meeting was planned by Dr. Neil Cashman, Director of the PrioNet.

PrioNet Canada is funded by the Canadian government and has been set up to address all possible areas affected by the discovery of endemic Canadian BSE in 2003. A $35M grant has allowed Dr. Cashman and his group to set up a network of collaborations including CJD science and possible early detection tests and treatments, the affects of BSE on farmers including socio economic and psychological, Chronic Wasting Disease, as well as concerned government representatives.

Some of the speakers and attendees are good friends of the CJD Foundation and have been presenters at some of our conferences including Dr. Robert Will, Dr. Jiri Safar, Dr. Robert Rohrer, Dr. Pierluigi Gambetti and Dr. Neil Cashman.

One of the very impressive elements of the meeting was the inclusion of a large group of young research students and research assistants. Many of them were there to present their work, most of which was reaching in scope.

I was honored to have been asked to present the welcome plenary address on Sunday night. This meant that the patients and families, on whose behalf the attendees were working, were acknowledged. The title of my talk was “The Human Side of CJD, Making a Difference Together.” I focused on trying to make all of us real and relevant to the audience.

I was not only impressed but also a little jealous of this small country that seems to have learned from the tragedies of the past and is determined not to let history repeat itself within their borders. How ironic was it that I came back to work on Thursday morning only to read an article from the Seattle Times, Feb. 22, reporting that the USDA is planning to close their BSE testing lab in Pullman, Washington on March 1. “Despite increasing concerns”, the article goes on to state, the USDA “has scaled back mad cow testing by more than 90 percent and backed off plans for a mandatory animal tracking system” because testing and tracking are too costly given the rarity of the disease”.

How does the USDA know that BSE is so rare when in July they scaled back testing from 750,000 head of cattle destined for the U.S. food chain to 40,000? The real issues seem to be ignored. Issues such as:

*Sick or “downer” cattle are often buried on the farm because there is no incentive for farmers to have these animals tested for BSE.

*Downer cows are often overlooked due to overcrowded conditions in slaughter facilities.

*Too many special interest groups are exerting pressure
To name only a few

Just as a reminder, a small group of us met with Mike Johanns, Secretary of Agriculture in July, he indicated that there wasn’t much concern about BSE on the part of the USDA. We asked him to please continue BSE testing at the 750,000 level, reminding him that 35M head of cattle were slaughtered for food in the U.S. each year. Less than a week after our visit he announced the testing cutback to 40,000. The math defies imagination!

I am now asking you to help make this an issue. Please call or write your Congressmen/women and Senators and express your concerns and displeasure at the closing of a BSE testing lab (there are three more slated for closure soon). We have just elected a more independent Congress - ask them for help. Tell them that you voted them in office to work on your behalf not on the behalf of special interest groups. I feel very strongly that unless we speak out now our children and grandchildren may be the beneficiaries not only of failed policies causing unsafe meat but also of the possible tragic fallout of endemic cases of vCJD.

On another topic, we are moving the CJD Foundation office this Wednesday, February 28. We are only going down the street but are gaining more space for basically the same rent. Our phone numbers will remain the same. We hope there won’t be any lapse in phone service but just in case we have made arrangements for the calls to be diverted to another number for a few days.

Please look at the left hand index on our website homepage, www.cjdfoundation.org for information about “Captain Bills Cycle Squad Ride for CJD.” This exciting biking fundraiser is being planned by Nick and Abby Webb in memory of Abby’s father, Bill Davis, who died of CJD in 2006. It will take place on June 2, 2007 and offers a wonderful opportunity to ride around beautiful Lake Tahoe and to raise money to help us continue our work. Contact information is listed on the page.

We will be sending out conference information soon. Please plan to join us for our fifth Annual CJD Foundation Family Conference July 6-8 in Washington D.C. We will begin with an informal reception on the evening of July 6th, and continue on Saturday and Sunday July 7th and 8th with presentations by leading researchers who will tell us about their exciting work as well as reports from representatives of families and support organizations around the world. On Monday, July 9th, we conduct our advocacy day to visit Capitol Hill and talk about our concerns to our individual representatives.

I send you all my warmest regards and hope to see you in Washington in July

Sincerely,

Florence

Hope from Pentosan Polysulphate, or PPS

2007-02-23T08:33:00.000-07:00

Martin Luther King once said all that's done in the world is done by hope and that is certainly the case with Pentosan Polysulphate, or PPS. Take for instance the story of Don Simms, a father who wouldn't take "no" for an answer when his teen son fell ill with CJD in the UK. Don fought to make sure Jonathan could receive PPS years ago and Jonathan is still alive today.

All kinds of conflicting research exists today about PPS. Does it work or doesn't it? And Jonathan Simms may be alive, but what is his quality of life? That's a heavily guarded secret to this day, one where very little information makes it to the public and that likely only happens at the yearly CJD Family Conference in DC.

I know if I started showing CJD symptoms today, I would want to receive PPS. I'm young enough that I want a chance. If noting else, it would at least keep me alive until the cure comes; at least that is one of the fantasies I have.

The CJD Foundation is pushing for PPS trails here in the U.S. and I have to agree it's the best thing we can do.

Check out Nicole's blog

2007-02-21T09:54:00.000-07:00

One of the reasons I started CJD Talk was to show whoever might stop by here just how many of us there really are who have had to deal with CJD in their lives. The goal has always been and will always be to get as many people involved with the cause as possible and to get us all communicating with each other. It's that whole "strength in numbers" theory.

I must live to see the day when this isn't treated as a "rare disease" or an "old person's disease." Because it's not.

So check out Nicole's blog. She just joined my MySpace CJD Support Group and blogs about some nutrition issues as you can see. But she also blogs about the Stop the Madness Petition, milk from infected cows, and the idea of a possible epidemmic.

So give her a read!

CJD For Dummies

2007-02-21T09:50:00.000-07:00

In interest of starting at the very beginning, I am doing a "CJD for Dummies" or "CJD For Newbies" series here on the blog, CJD Talk. If you have been affected by CJD or are curious and just want to learn more, be my guest.

Also, if you have any questions about CJD, please ask and I'll find the answer for you.

And if you have any friends in the medical profession, please pass the blog onto them as we CJD families are pushing for more disease awareness and better patient care.

Please take the poll:

Thank you!

Who is at risk for CJD? Have you ever had a surgery or received a blood transfusion? Have you ever eaten wild game such as deer or elk?

Learn more at:
CJD Foundation

Arizona Game and Fish*Remember CWD has been found in other states, such as Colorado (since 1967).

What are those jerky muscle movements called?

2007-02-21T09:27:00.000-07:00

Today's lesson in CJD is about jerky muscle movements, or myoclonus. (Pronounce that my-oh-clone-us). This was also one of my mother's CJD symptoms and I remember exactly the moment I first saw it. Prior to the major onset of her symptoms, she was very tired and would be napping by 2 or 3 p.m. each day. (She worked from home and did get up at 4:30 a.m. when my dad got ready to go to work, but the early wake up time had never bothered her before then).

My mom was sleeping in my dad's recliner and I could see her left leg moving. It was twitching and it kind of had a little bit of a bounce to it but the movements were very tiny. I thought my mother was dreaming she was running or something to that effect. What I saw was myoclonus.

Do you know how your body gets that last little jump right before falling asleep? That has scared the hell out of me for the last two years because it always makes me afraid I am having the beginnings of CJD myself -- a totally natural fear since my mom's CJD was familial.

But guess what? That's perfectly normal and everybody does it. That's according the NINDS, which has some pretty helpful information about myoclonus.

What is cerebellar ataxia?

2007-02-20T11:28:00.000-07:00

Today I'm going to share one of the CJD symptoms my mother had that I will never forget: cerebellar ataxia.

According the the Medline Plus Encyclopedia, "acute cerebellar ataxia is sudden onset of uncoordinated muscle movement."

For my mom, this meant she couldn't control her balance and gait. Her legs shook and she was very unsteady to say the least. She never fell though, I have to say. My mother complained of dizziness and vertigo and even carried around a plastic bag because she was nauseous. When she walked, her leg would jerk out in any direction imaginable. It was very hard for her to control herself as she walked.

That was October 8, 2004, the day we took her to the emergency room. She died November 10, 2004.

More on CJD from Medline Plus.

More about CJD from NORD.

New for CJD Talk

2007-02-19T09:33:00.000-07:00

I'm going to be working on sort of a "CJD for Newbies" series for this blog. I was remembering when my mom first got sick and I was looking online for anything her symptoms fit. I'd Google all her symptoms and I kept coming up with some thing called "CJD." At the time, however, I failed to realize it was a fatal disease. Once my mother was diagnosed with CJD and I began to learn about it, I discovered there was a lot to learn.

Today's tip is especially great if you've just stumbled upon this blog trying to find some information about CJD. If you don't know where to begin, let me be the first to tell you about the CJD Foundation if no one else has done so.

The first thing you can do is request information and support by calling the Foundation at 1-800-659-1991.

The Foundation also puts out an informational pamplet to help you handle your changing role as a caregiver.

In interest of beginning at the very beginning, you should download the Factsheet PDF about CJD so you can learn the very basics like what it is, what types of CJD there are, and whether this is "mad cow disease" or not. That last part is the cause of much strife, so it's good to put the myths quickly to rest!

What CJD issues are important to you?

2007-02-07T18:52:00.000-07:00

Just so I know that I'm serving this blog's audience, I'd like to do a bit of research here into what you want. What would you like to hear more about? Feel free to comment or e-mail me at length. I've made a little poll below for you to take. Thanks in advance for your time!

CJDTalk becomes B.U. widow

2007-02-07T18:47:00.000-07:00

I apologize for the infrequency of posts since Jan. 24. This blog has taken a backseat to my working on my undergrad degree in liberal arts at Boston University. (EUDCP online - that's the executive undergrad degree completion program). I haven't had much time to pursue topics to write about in regards to CJD. That's definitely not my intention, but please bear with me as I learn to balance my studies with the blog. And on that note, let's wish the blog a happy first birthday! It was born in January '06.

More CJD legal news

2007-01-24T06:16:00.000-07:00

This is a nice example of things going right. CJD needs to be reportable in every state so that we can accurately track the disease. Since CJD isn’t yet reportable in all 50 states here in America, we cannot accurately tell anyone how many people are really dying of this disease. As the article also points out, sometimes doctors aren’t well trained and miss it. They misdiagnose CJD as something else. I have noticed this is especially true in smaller cities – not so here in Phoenix where we are lucky enough to have Barrow Neurological Institute.

The link again: WTHR, Indiana

And a link to Indiana Representative David Orentlicher: Send him a note to say thanks and give encouragement.

Here's something you don't see everyday

2007-01-19T10:40:00.000-07:00

Aside from the snow in Malibu and the rain in Phoenix, a widow in the UK is suing the government because her husband died of CJD after undergoing a government-sponsored treatment with growth hormone. Children with growth hormone deficiency were targeted for treatment in the national program between 1979 and 1985 with growth hormone extracted from corpses.

You don't see this type of thing every day; seldom is a family able to find a reason to sue their government in a case of CJD. It's pretty rare when you're able to pinpoint how one acquired the disease and even more rare that it would be the government's fault. I don't know about you, but I'd rather be four feet tall and live a long life than be "normal" and die of CJD. The question is, should the UK government have known better back in the late 70s and early 80s?

Read the article in Sheffield Today.

The realities of vCJD infection via blood transfusion

2007-01-18T15:46:00.000-07:00

This was just posted in the comments section of my last post, but it's good enough to be center stage in its own post. A new, and fourth, case of vCJD via blood transfusion has been diagnosed in the UK.

Here is the link to the artcle on the Health Protection Agency website.

Makes you wonder a lot of things! It also makes you feel horrible for those other 23 people who received blood transfusions infected with vCJD. Will they get sick? When? Are these first four patients to contract vCJD from blood transfusions M/M? Are they the first wave of what will be many more?

Could two more waves of vCJD be coming?

2007-01-14T09:48:00.000-07:00

This article in The Guardian talks about how there could be two more possible waves of vCJD to come in the future. It’s a good article, pretty long, but worth reading because it’s filled with stats and facts.

I’ve been wondering about titer lately, as in how much of the infectious agent can make you sick. If I eat one infected steak, is that enough? Or must I eat infected steak a few times a week every week for years in order to get infected with BSE and thus come down with vCJD? Nobody really knows that answer to that as far as I can tell.

(My example is purely hypothetical, as I don’t eat steak and my family carries the E200K mutation. It doesn’t matter what I eat at this point, it just matters whether I carry the marker – again, as far as we know to date. I wish there were research done specifically on this).

If I get one pint of blood in a transfusion that is infected with vCJD, is that enough to infect me? Apparently, yes, according to this article. And that is just the point of this article. Who cares about steak and cattle anymore when an indeterminable amount of human beings are carrying the infectious agent and unknowingly giving blood?

It is a huge problem.

That brings me to my next point. There are two possible answers to the problem of the second wave:

1. Come up with a blood test for vCJD.
2. Cure CJD!

The blood test for vCJD would be a great advancement for blood donation. But I feel the only real answer is to just cure the damn disease. End of story. A cure for CJD would end all these issues. It would also save my life (if I carry the marker) and the lives of others like my relatives who carry the E200K mutation or any other mutation. This disease isn’t just about cattle; some of us don’t need beef to get sick. We’re the ones who will need the cure someday regardless of whatever political policy changes do or don’t get made.

Read the article here. One more item of food for thought, taken from the article:

"The fear of some researchers now is that, 20 years on, interest in answering the crucial remaining questions will wane. But leaving them unanswered would be a desperate mistake, says Professor Bird. "If that happens, we won't have all the information, and that's extremely dangerous.""

Familial CJD Support Group tonight, 8-9:30 pm EDT

2007-01-11T17:04:00.000-07:00

Please join Deana Simpson TONIGHT for the Familial CJD online support group.

Deana will guide the discussion as well as answer your questions.

As you will see when you go to the website, the CJD Foundation has a new look. To access the Support Group click on Family Support and then in the 2nd line there is a link to the Chat Room. When the next page comes up, give it a few seconds for the actual chat room to come on the screen.

You will enter the room with a Guest number. To change that to your name, just click in the little box that has Guest in it and another small window will open asking for your screen nickname.

The group runs from 8:00 p.m. to 9:30 p.m. EDT.

Grand rounds today at Barrow Neurological Institute

2007-01-05T17:20:00.000-07:00

Today went really well. I estimate there were 50-60 physicians in attendance, my dad thought it was more like 80. I definitely learned a couple things! Dr. Sejvar was wonderful. He was very nice and so well-informed that it was good to hear him speak.

He let me have a few minutes at the end to talk about the CJD Foundation, so I explained what the Foundation offers and how the folks there can help you with the dreaded autopsy – all for free.

The importance of autopsy
The key thing is you don’t have to pay for an autopsy in a suspected case of CJD. The Foundation will hook you up with the NPDPSC and they’ll take care of it for you. Not every family knows this and not every doctor does either. It’s important for the surveillance of the disease in our country.

But in my case, it gave me the genetic answer I needed so badly. So I’m very grateful we were able to get an autopsy done on my mom. It was tough to get done because she was dying so fast and we were having a hard time finding someone who would do the autopsy. The NPDPSC finally found someone in New Mexico to do it and my mom’s body made a posthumous trek there and back! But the information from the autopsy was priceless because, as far as I know, I am the first person in the family to obtain it.

What I learned today
Two things in Dr. Sejvar’s presentation really made sense. I’m sure I’ve griped here on the blog before about a lack of a clinical diagnosis with CJD. It makes you waste precious final days with your loved one as doctors try to diagnosis the problem with a million tests. If only there were a diagnostic test that could give the answer sooner so that families wouldn’t have to go through so much run-around in hospitals!

One of the tests my mom endured a couple times was the EEG. It didn’t show what we were looking for at all and, at one point, even showed improvement in her brain. That is something I have never understood because I was seeing a decline at that time but the EEG was coming back saying she was fine. Dr. Sejvar today explained that sharp waves in the EEG present at some point in the illness but are less pronounced as the disease progresses. That explains why the EEG looked fine in her final two weeks with us – it was the end of the disease’s progression.

Hey – that’s one question answered. It’s not huge, but I had an “a-ha!” moment. I’ll take them as I can get them!

The second test my mom endured as they tried to diagnose her was the spinal tap, or the 14-3-3 protein test. That test came back negative. Guess what? Sensitivity of that test decreases as the duration of the disease progresses. That makes sense now, too, because it was done towards the end of her quick battle with CJD. So another mystery was solved today in my mind.

A new point of view
I was pleasantly surprised to learn a new point of view today – that of an OR nurse. She approached me after the auditorium began to clear out and asked me if my mom had had a biopsy done at Barrow. Yes, I said. She asked when, so I told her it would have been the end of October in 2004. Her face darkened and I could tell she was mentally trying to figure out if she would have been in the OR that day.

Then she asked me how I felt about the biopsy and if it was something I chose to do. I said not really, it was more of a matter of being told by Dr. Walker that this was what we needed to do. I didn’t question it at all. I explained to the nurse that this was because we had two possible diagnoses for my mom at the time; either she had cocci meningitis (valley fever infecting the brain), or she had CJD. She was being treated for the cocci but we needed to know one way or another what we were dealing with and that’s the case for doing the biopsy. You need to know if the disease is CJD or something else that you can cure. I do believe in doing the biopsy for that reason.

Remember: you cannot definitively diagnose CJD without an autopsy.

How the OR nurses feel
This is brain surgery and it does have some risk to the patient. Why possibly mame a young person for life if it doesn’t turn out to be CJD? That was the point the nurse brought up. She was curious because she didn’t know what the patient or the patient’s family is dealing with outside the OR. She says sometimes in the OR they get these orders and wonder if they are really necessary. It can cost the family a significant amount of money and is extremely invasive. (My mom’s was covered by insurance). For the nurses, the risk of infection is frightening and that is an understatement.

I could see where you would question the necessity of doing such a surgery as a nurse. Your health is now on the line by being in the room. You could be infected with the fatal disease. Of course you’d be asking yourself, “how important is this? Is it really worth me risking my life for another person?”

I guess I had never thought about that before. I’m grateful to that nurse for bringing it up. That’s yet another reason why we need a clinical diagnostic test so badly! The nurses don’t want to deal with the drama any more than the doctors and patient’s family want to deal with it.

In closing...
Jeanne White was there too with my father and I and I’m glad she came. It was also nice to see the doctors we had worked with two years ago when my mom was there. It was a reunion of sorts! I am glad to see so many people care about this disease enough to spend an hour with us today. The CJD Foundation was well represented, so I’m confident patients who come to Barrow will be taken care of properly. I think they already are. Barrow sees cases from all over the Southwest all the time. Dr. Walker even told me there were once two cases in one week!

We really have it easy in Arizona because of Dr. Walker and Barrow Neurological Institute. Dr. Walker knows what she’s looking at when she sees a case, she knows all about the Foundation and about the NPDPSC. CJD is also a reportable disease here in Arizona. We’re so far ahead of other states that it makes me feel good. That means all of us here can concentrate on other things related to CJD, like Grand Rounds.

I'm very excited about tomorrow

2007-01-04T20:19:00.000-07:00

With the holidays finally past and the week nearly over, I finally get to steal a moment to blog about CJD. I haven't had a chance to read the full study yet, but scientists have found an exciting new way to make bovines resistant to BSE using genetic engineering. It's actually been big news in the mainstream, too! I was glad to see that. I got e-mails from friends asking if I'd seen it and phone calls as well -- and even from people who aren't in a CJD family like I am.

Every breakthrough counts! I think we may be entering a very optimistic age in prion science. The research is advancing quickly. There is hope.

Tomorrow, my father and I, along with Jeanne White (Jeff Schwan's aunt) will be at Barrow Neurological Institute for grand rounds on CJD facilitated by Dr. Sejvar of the CDC. Maybe this is a good place to post (once again) the links to my stories on Jeff and my mom:

Jeff Schwan

Phyllis Larson

Jeff's story resonates with me right now because a young man of age 18 is dying of this horrible disease right now in Virginia. While my mother with her age of 56 and genetic mutation didn't have much of a chance against this disease, Jeff should have at the age of 25. The young man in Virginia should have a better chance too. There is no reason why the very young should die of this disease. It boggles my mind! Not to mention Charlene Singh and the many others, some in their twenties, some in their thirties and some in their forties... Even 56 is young for CJD.

This is why we must keep searching for answers.

I wish you peace, hope, and advances in science for all of us in 2007!

Heather Larson

Florida's "CURE CJD" license plate!

2006-12-24T10:24:00.000-07:00

This one belongs to Robin in Florida, who lost her mother to CJD.

If you have a license plate with any variation of "CURE CJD" take a photo and send it to me at: heatlarson AT yahoo DOT com.

Let us not forget.

2006-12-24T09:56:00.000-07:00

On this Christmas Eve, let us not forget the ones that we've lost. For me, that is my mother, Phyllis Larson, who died of the fCJD mutation (E200K) at the age 0f 56 right before Thanksgiving 2004. I look at her photo today that I keep in my living room and cannot help but think one thought: there is no reason why she should have died. There is no reason why any of our loved ones should have died.

We must keep doing whatever we can to get the word out about CJD and to find the cure. It is a senseless disease and it is completely senseless that a cure eludes us still. The fact that people are still dying of this disease is atrocious. We must work together to increase understanding of this disease. I know if we families stay dedicated to the cause, we will find a cure. And it will be because of us and the tireless work we all do.

Our constant activism is proof that after you have witnessed the horrors of CJD, you cannot forget. You can try to act like you do, but we all know better. Sometimes, I feel I have to not think about it so that I can lead a normal life. That is sort of why the blog has been on the backburner the past few months. But in 2007, I promise you will see a renewed passion from me in regards to fighting this disease.

My father did not want to talk much about CJD after my mother died while I, on the other hand, was continually fascinated by my mother's killer. I have always been intrigued by the fact that there is a 50/50 chance it can kill me too. Obviously, my father is much less intrigued by this. He and I went out to dinner on the eve of the two-year anniversary of my mother's death this year and for once he couldn't stop talking about CJD! He's even going with me on the 5th when I go to Barrow Neurological Institute to represent the CJD Foundation.

In 2007, I hope to see you all at the family conference in DC. I will make it to DC this year! I promise! The conference is only getting bigger and better every year with so many great people from all over the world attending. I'd be heartbroken if I missed it again. Maybe I can even bring my dad.

I've been kicking around ideas for a book for the last couple years. Many of you know I'm a freelance writer, so it should come as no surprise to you that I'll be using 2007 to research said book. I'll have to start by organizing all the research I've been accumulating for the past two years...I dread the task, believe me! But I wouldn't be doing it if it weren't important.

So let us not forget the ones we've lost as we (try to) enjoy the holidays. And let us not forget the families right now who are helplessly watching a loved one battle this disease. Remember that each of us has the potential to fight this disease in our own ways. Together, we make an unstoppable team. I wish us all hope as we enter 2007. I hope this is the year we will find the breakthrough. I hope this is the year we can get our politicians to listen to us about the dangers of BSE. And I hope in this new year that we can continue to heal.

Merry Christmas from me!

2006-12-23T23:26:00.000-07:00

For once, a breather from CJD issues to wish you and yours a very Merry Christmas and a Happy New Year. Happy Hanukah too!

anotherheather

South Korea rejects beef from Iowa, breaks trade rules

2006-12-22T12:21:00.000-07:00

Senator Harkin is getting involved with South Korea's recent refusal of a shipment of beef from Iowa. Here's the story from the Harkin Ag newsletter for December 2006:

Harkin Calls on South Korea to Follow Fair Rules for Beef Trade

In a December 19 letter, Senator Harkin wrote to South Korean Ambassador Lee Tae Sik urging his government to establish clear, transparent, and fair rules regarding beef trade. Earlier this month, South Korea rejected a beef shipment from a Des Moines meat packer, Iowa Pacific Processors, Inc., claiming that periosteum, a connective tissue surrounding bone, was detected in some of the packages inspected, along with thinly sliced bone. Under international standards, and according to the terms for beef trade agreed to by the United States and South Korea in September, the presence of this connective tissue should have not been a basis for rejection. This is the most recent of three U.S. beef shipments rejected under South Korea's intensive inspections focused on detecting bone fragments in U.S. beef shipments.

"The information we have indicates that South Korea's rejection of these beef shipments was not in keeping with international trade standards," Harkin said. "In order to allow trade between the two countries, South Korea must work in good faith with the United States to set clear and reasonable standards that are fair to U.S. beef producers and exporters."

South Korea maintains that bone of any size poses a higher risk of containing the agent which causes bovine spongiform encephalopathy (BSE), a disease of the nervous system that affects cattle. The United States says that bone is not a BSE risk, and the World Organization for Animal Health has declared that it is safe to trade bone-in beef, even when shipped from a country in which BSE has been found.

The South Korean government claims bone fragments were present in all three rejected U.S. beef shipments, and has used this as a reason to reject them. In his letter, Senator Harkin urged the South Korean government to establish a tolerance for bone fragments in beef shipments, which has been an issue since the U.S. and South Korea agreed to resume beef trade in September.

"The Republic of Korea must establish clear and transparent rules. Boneless beef trade with the rest of the world includes a workable tolerance for bone fragments, and South Korea should comply with these standards," Harkin said. "It is not reasonable to reject an entire shipment based merely on the detection of bone fragments within a handful of packages, nor is it acceptable to reject shipments based on the discovery of connective tissue."

CJD Foundation Newsletter 12.12.06

2006-12-12T16:52:00.000-07:00

CJD Foundation Newsletter
December, 2006

Dear Friends,

PLEASE LOG ON TO OUR BRAND NEW WEBSITE!!! WWW.CJDFOUNDATION.ORG. This site was donated to the CJD Foundation by Rhett Daniel of Daniel IT in loving memory of his father Terry Daniel. We are deeply grateful to Rhett and his team for their dedication, generosity and patience!

I am attaching the Newsletter from the NeuroPrion 2006 meeting I spoke at in Turin, Italy. I wrote a brief article on page 2. The newsletter will give you an idea of the scope of this exciting meeting.

On Friday, December 15 I will once again be attending an FDA meeting where the topic to be discussed will be blood safety. If there were ever any doubts about the seriousness of this issue or the extent of concern for our safety on the part of the FDA this should help alleviate them. Blood safety and prion risks have been the topic of every FDA meeting for the past three years. The scientists and various affected agencies and companies making formal presentations will once againhighlight every facet of blood safety issues known today.

The CJD Foundation has been diligently looking for funding sources. Carole Laderman, our outstanding political advocacy chairman, has also taken on the role of development. She is investigating possible funding partners. If you have any connections or suggestions for her please let us know.

Our Annual Fund drive is bringing in much needed donations. In January, I will be able to give you a report on the total amount raised. We thank those of you who have replied so generously to our Annual Fund letter which in turn allows us to reach out in so many ways. I hope those of you who have not yet donated will respond soon.

Thus far we have used discretionary funds to help one family pay for short term medical expenses and we are hoping to continue to be able to offer limited “no strings attached” help to families in need.

In February I will be traveling to Alberta Canada (brrrr) to speak at the PrioNet meeting. I was invited to this Canadian scientific conference to present the same type of speech I gave in Turin. It is an honor to be able to talk about families and the work of the CJD Foundation and the new CJD International Support Alliance.

Plans are already underway for our next CJD Foundation Family Conference to be held July 6-8 with Political Advocacy Day July 9. Please mark your calendars and join us again in Washington D.C. for this outstanding event.

I want to take a moment to wish each of you a very healing and peaceful holiday season and New Year. These wishes are echoed by Ruthie, Linda and Wanda and our entire Board of Directors.

My very best to each of you,

Florence

Thanks to the watchful eyes of CJD Voice

2006-12-07T11:31:00.000-07:00

I have to say, CJD Voice misses nothing because of the great people within. That was the first place I heard about the 3rd case of vCJD here in America and I've been passing it on to a few grateful folks who didn't know about the story yet. I think the unofficial motto of CJD Voice would have to be "always watching, always counting" because it's so true. It just fits. I guess it just comes from that piece of us all that is permanently shell shocked from watching a loved one die of CJD.

vCJD in America: CIDRAP is on the ball as always

2006-12-05T16:45:00.000-07:00

Did you read the news about America's 3rd/latest vCJD patient here first? (As in was this the first place you saw it published aside from the CDC website?) CIDRAP is the next to publish the news (that I have noticed anyway). I imagine we all read it in CJD Voice first.

At any rate, CIDRAP is on the ball with the news about the case, which is live on their website right now. Go ahead and read up.

There is a vCJD patient currently dying in Virginia.

2006-12-04T10:24:00.000-07:00

This is very sad news indeed and my heart goes out to the patient's family and friends during this difficult time. The disease is suspected to have been contracted while the patient lived in Saudi Arabia. Read the details here.

Good job to the folks in Virgina for keeping it out of the media thus far, because we all know the media doesn't understand this disease, doesn't ask the right questions, doesn't give the public a fair shake and doesn't give enough time or space to stories about CJD. (I say this mostly thinking of broadcast news, which is worthless where BSE and public health are concerned. Print folks, comsider yourselves excluded).

My only hope is that the latest science is available to this family should they choose to use it, whether that's pentosan polysulphate or not. A case of vCJD (or any CJD) in a young person is horrific at best. As we're still fumbling to find our way through this disease, its triggers and someday a possible clinical diagnosis and cure, my only hope is that we use each case as a learning experience. My hope is that something will be learned from this latest case. Because the breakthrough is coming; we can never give up hope.

I say this knowing full well what my own chances are, so yes, that's my E200K biased opinion.

Today marks two years since my mom died.

2006-11-10T18:00:00.000-07:00

I can't even cry. All I can think is that I wish we could have done better for her. I wish we could have used a simple diagnostic test to tell her what was wrong with her. I wish we could have been able to do that to save time, aggravation, fear, stress and helplessness. I wish we could have explained to her that she was dying and how. I wish we could have exchanged proper goodbyes.

But we couldn't. And that's CJD for you.

I still don't have a lot of answers and that is what is on my mind the most today.

R.I.P. Phyllis Larson, 11-10-04

I never thought of the mosquito aspect before.

2006-11-05T17:58:00.000-07:00

This is truly scary to me. CWD is transmissable via saliva and blood, making even mosquitoes a danger. It is my hope that all hunters get better informed before they head out to kill a deer or elk.

Of course, the best way to protect yourself is not to hunt at all...but people will do what they will.

Live and learn, here's a good article that will make any hunter think twice (or 50 times) about safety when hunting cervids that can potentially contaminate them with CWD. It's not the way you want to die, so get informed.

CWD worrisome to Livermore hunter.

What's new

2006-11-05T16:44:00.000-07:00

I haven't posted in 34 days! I've been busy moving and not feeling well most of the time, so I'm way behind on stuff like this. I was supposed to speak at Barrow Neurological Institute last month on behalf of the CJD Foundation. But there was a last minute scheduling conflict for our CDC doctor, so the morning of CME credit for the physicians has been pushed back to January 2007. That is fine with me at the moment as free time when I feel well is in short supply.

Meanwhile, I am happy to report our CJD Support group on Myspace is slowly taking off. There have been a couple new members lately to join up, so that's nice. I figure MySpace is just another good way to meet others like me and to keep networking. Anything to raise awareness of CJD and to direct people to the help they are seeking!

I just wish our members would post and get some communication going! Here's the MySpace group. If you're into MySpace, stop in and join up, introduce yourself and we can get people talking.

That's always the goal -- CJD Talk!

The latest CJD Foundation Newsletter puts out another call to action

2006-10-01T18:24:00.000-07:00

Dear Friends,

Our fourth annual Aaron Kranitz Memorial Golf Tournament held on August
14
was our most successful one so far. We had 20 foursomes and almost
perfect
weather, a few sprinkles but they weren’t even noticed by our devoted
golfers. The evening festivities included a live auction hosted by
Doug
Dieken, a former player for the Cleveland Browns and now the voice of
the
Browns Monday Night Football. Our net profit from this event was over
$42,000. Our appreciation and gratitude goes to our golf chairperson,
Ruthie George and to her committee, Sybil Willen, Ana Betro and Pam
Goldfarb. They worked tirelessly and the results show it.

The FDA meeting held last week, September 18 and 19, was one of the
most
interesting ones I’ve ever attended. The World Health Organization has
suggested that infectious prion proteins be referred to as PrPtse
rather
than PRPsc. We heard presentations by seven researchers who are in the
process of developing a pre mortem diagnostic blood test for prion
diseases.

We were not asked to vote on any issues this time. The meeting was
held to
provide information on promising experimental TSE blood clearance
studies
and possible criteria for approval of a blood donor screening test.

One very interesting presentation was given by Dr. Claudio Soto. He
and his
group are developing methods to detect PRPtse in blood and blood
products.
The specificity of this test has been boosted to 89% with no false
positives. They are working on increasing the detection levels and
also
considering the ethical issues such a test presents. If perfected this
could hold the key to protecting our blood supply as well as provide a
critical tool for early diagnosis when a cure for prion diseases is
discovered.

Wednesday I spent the day on Capitol Hill with Dr. Gambetti. We
visited 10
offices focusing on those members of the House and Senate serving on
the
Appropriations committee as well as the Labor HHS sub committee. We
asked
those we met with to help maintain the CDC budget allocation for human
surveillance at the FY 2006 level of $5.5M instead of the projected cut
to
$5M. The president has asked for a cut in government support for
science
and research. This possible cut means that the funding for the
National
Prion Disease Pathology Surveillance Center will be affected. It was
an
exhausting but hopeful day.

PLEASE help by calling or writing a note to your state senators and
congressmen. Tell them that CJD Surveillance is very important to you,
especially in light of the USDA’S cut in BSE testing by 90%.

I was honored to be asked to give a welcome address at the Prion2006
meeting
in Turin, Italy October 4. The meeting is titled “Prion
2006-Strategies,
advances and trends toward protection of society”. It is sponsored by
the
European Network of Excellence, NeuroPrion. For the first time, they
are
inviting representatives from CJD Family Groups from European
countries.
They have asked me along with Dr. Ignazio Roiter, founder of the Fatal
Familial Disease Foundation, to help create the basis for the formation
of a
European Family Association to join our International CJD Support
Alliance.
This Alliance, you may recall, was formed at our conference this past
July.
It presently consists of support organizations from Australia, Japan,
The
United Kingdom and the United States. We are sharing information,
resources
and plan to speak out in a united global effort on behalf of patients
and
families the world over.

I am greatly looking forward to representing all of you at this very
important meeting. You can look at the program by logging on to the
website
www.prion2006.com. Look for a full report when I return in mid
October.

Again, I ask for your help in our efforts to keep human CJD
Surveillance at
the same level funding as last year. Please contact your
representatives.
In the scheme of the U.S. budget, this is a very small amount but means
a
great deal to Dr. Gambetti and the work of the NPDPSC.

Linda Gregson has been conducting our online support groups. We welcome
all
of you to join. Check our website www.cjdfoundation.org for
information and
instructions.

My best to all of you,
Florence

This is exactly what all beef-eating families should be doing. If you're not, you're playing Russian roulette.

2006-09-20T09:06:00.000-07:00

I didn't know you could do this, now that I can, I will encourage everyone I know who eats beef to do it this way! Guess what? You don't have to eat questionable beef. Well, you knew that. You knew you could go buy grass-fed beef. But now you know you're not the only one doing it. Here's an article from SFGate.com about how one family is opting out of the traditional go-to-the-grocery-store-to-buy-beef way of getting their food. Finally, consumers are wising up to the mad cow threat our nation faces because the USDA refuses the test every cow meant for human consumption for BSE. Check out this quote from the article:

"Cost-wise, we know it's really good," says Jeff Hagan. "It's great beef. And you don't have to worry about mad cow. And you're doing something environmentally better. And you don't have to worry about hormones for your kids -- so what's wrong with it?"

Certainly if an option is healthier and more economical, you would call that a no-brainer choice, no?

Read about it here!

The article also points out a website called www.EatWild.com, where you can find local farmers who will sell you a large cut of grass-fed beef.

2006-09-09T21:20:00.000-07:00

My absence from blogging

2006-09-05T18:34:00.000-07:00

I apologize for being absent from the blog for so many days! I'm pretty busy working and getting into school...but promise to update the blog soon.

Interesting blog post

2006-08-24T20:14:00.000-07:00

I am always happy to find regular people (as in non-CJD families) who are concerned with the safety of their food and whether mad cow disease is a threat in our country. This blog/podcast asks that very thing.

I tried to leave a comment but couldn't figure out where to log in to do so. But here is my comment nonetheless:

Mad cow disease is a very real threat to public health and affects society greatly every single day more than the average person knows. This is something you can only firmly comprehend after your life has been touched by something like CJD, the human form of mad cow disease and also the fatal disease that killed my mother, Phyllis Larson, nearly two years ago. Though her disease was genetic, I have learned a great deal of upsetting information about BSE in America. One thing that is very unfortunate is that the USDA tests less than one tenth of one percent of the cows Americans consume for BSE. It's a "don't look; don't find" policy. Another unfortunate side affect CJD has on society is that everyone who loses a blood relative to CJD is no longer allowed to donate blood whether the disease was found on autopsy to be genetic or not. This has a tremendous detrimental effect on our blood supply. The majority of CJD cases in the U.S. are "sporadic" meaning we supposedly don't know where it comes from...doesn't that worry you somewhat? It should.

CJD on the air in Phoenix this morning

2006-08-20T18:07:00.000-07:00

Many thanks to my friend and coworker Mini Salas, who hosts Closer Look, our public affairs program at KPKX-Phoenix. Mini interviewed me about CJD for her show this week. It aired yesterday morning on ESPN 860 and this morning on 98-7 The Peak. Mini is going to burn me a CD sometime this week so I can post a podcast of it here on the site. We also posted a link on the station website that goes to the CJD Foundation, CJD Insight, and the action page on the Foundation website. (Page down and you'll see it). Thanks, Mini!

Canada completes investigation on 6th cow found to be BSE-positive

2006-08-20T18:00:00.000-07:00

Canada's Food Inspection Agency, or the CFIA, has concluded that the country's 6th BSE-positive cow must have contracted the disease in either 1989 or 1990. At this time the cow was very young but because of the cow's age at the time of death -- 16 years -- it was difficult to track data on the cow's early years. This female cow gave birth to two female calves born in 2004 and 2005 but investigators were unable to track them down and thus they are presumed dead. That's according to CIDRAP which also points out something I didn't know; cattle are most susceptible to contracting BSE in the first year of life.

Check out the CJD Talk podcast!

2006-08-13T18:51:00.000-07:00

There's a podcast now. Check out here.

Let's remember those we lost

2006-08-13T17:32:00.000-07:00

Gerald Stubbs sent me a link to his website memorializing his wife Nelda who died of CJD. This is such a wonderful site! Now I want to make one for my mom. If you have a website where you remember a loved one you've lost to CJD, send me the link and I'll post it at the right under "links." Also send me links to a blog if you have one about CJD, mad cow disease, or any related subject. I'd love to hear from you!

My e-mail address: hotwords AT mac dot com.

Genetic testing for CJD -- there's a lot to consider

2006-08-13T16:54:00.000-07:00

I have decided not to get tested for the E200K mutation that my mother carried. This is the mutation that gave her CJD and killed her the day after her 56th birthday. I don't see a point to knowing if I am positive, though I would love to know if I am negative! Who wouldn't? But if I'm positive for the gene, there is still no cure for CJD so there is nothing I can do, no action I can take to prevent my death at this time. If this changes and there is finally an advantage to having done the test, I will have it done. Right now, I figure I have a good 25-30 years left if I am positive so there is still some time to find the answer and the cure.

I have considered having my DNA tested to find out where CJD began in our very Polish family, perhaps because I've watched a little too much Discovery Channel. But I can't do it because I need the DNA of a male related to my mother in order to find that info via a DNA test and I no longer speak to my mother's family. Yes, my mother's death by CJD tore our E200K family apart. As far as I know right now, the NPDPSC will provide genetic testing and counseling if I wish to receive it. Apparently, there's a mail order business in this now to be wary of...who knew?

Consider this when choosing a nursing home.

2006-08-13T16:49:00.000-07:00

Everyone who has to deal with CJD has to deal with this at some point. Where do I put my loved on as they are dying? Will we care for this person at home or will we choose a nursing home or hospice? My father and I chose Hospice of the Valley to care for my mother in her final days (all six of them after CJD diagnosis). But for those of you considering nursing homes, check this out. I figure it is good to know that the non-profit homes provide better care.

How do you help children cope with death?

2006-08-13T15:50:00.000-07:00

Given the fact that many people are dying of CJD in their 30's, 40's and 50's now, it's just not "an old person's disease" any longer. Not that it ever was completely! My own mother died at age 56; I was 25. I couldn't imagine losing her as a child or as a teenager and what it would have done to me. CJD has already changed my life enough in my mid-twenties and I know I will never be the person I once was. But how will caretakers of CJD patients deal with children during and after the illness? Here's a great article on CNN that explains some smart strategies for how to take care of children who are losing a parent to a terminal illness.

There really is concern in the U.S. over mad cow disease

2006-08-13T15:42:00.000-07:00

Every day, I feel as though I am one of a handful of people who care about keeping our nation's food supply safe from mad cow disease. But every so often, I get to realize I am wrong. Here's an article from MSNBC that ran in May, written by Today show food editor Phil Lempert, who is right on about the safety of Japanese beef versus the absence of safety regarding U.S. beef. He tells beef consumers to either go with organic or grass-fed beef until the USDA decides to keep the American people safe by testing every cow meant for human consumption. Thanks to Mel for finding the link and posting it on CJD Voice.

The first CJD Talk podcast is online

2006-08-10T20:52:00.000-07:00

I have just uploaded the first CJD Talk podcast for your listening pleasure. Check it out here. This inaugural podcast features a little bit about my story and what I hope to accomplish with the blog and the podcast. I also talk about the current cutback in BSE testing by the USDA and have included an interview I did on KPFT Galveston’s “Go Vegan Texas,” which aired on Monday, June 12, 2006.

Please share your podcast ideas with me by e-mail at: hotwords AT dot com. If you would like me to discuss something about CJD, please let me know. I also urge you to e-mail me any story you would like included in the podcast. E-mail me your stories about how CJD has impacted your life and I will share them on the podcast.

I was pleased to read this.

2006-08-10T14:11:00.000-07:00

I stumbled upon this MySpace blog from a young 19-year-old who has spent time in Japan and who, as such, seems quite well-informed on the dangers of mad cow disease in the U.S. As you can see when you visit his blog, I have left a lengthy reply. It is my hope that all Americans choose to become this informed and take a stand against eating untested beef just as this young man has. We need to stop playing Russian roullette and we need to begin testing every cow meant for human consumption here.

I am absolutely outraged

2006-08-05T14:30:00.000-07:00

I just learned of a suspected-CJD patient who was thrown in a psych ward for her own safety. This is an outrage and absolutely deplorable at best. The doctors who made this decision should be ashamed of themselves.

Patient care is one of the most important aspects of CJD. Most doctors are not very informed at all, especially if you end up putting your relative in a smaller hospital. This is the typical arc of what goes wrong:

A patient begins to experience all manner of symptoms from forgetfulness to vertigo. There is usually blurry eyesight, gait problems, balance problems and myoclonus (jerky muscle movements). These were the symptoms my mother had by the time my father took her to the E.R. She was also combative by this time and experienced fits of anger.

At this point, the patient gets taken to the nearest hospital, as in a smaller hospital. A multitude of tests are run to no avail and doctors shake their heads mystified because it isn’t early-onset Alzheimer’s Disease, it isn’t Parkinson’s Disease, and it isn’t multiple sclerosis. There is still no diagnostic test that can be done to prove a patient has CJD; there is no clinical diagnosis. CJD is only proven upon final autopsy.

So as a patient is in the hospital with said symptoms, imagine the following scenario. It happens each time with differing degrees of drama and stress depending on the individual variables such as symptoms and length of disease.

A very frustrated family is angry with doctors and nurses who can’t explain why their loved one is rapidly deteriorating and losing all their faculties. I went through this myself, watching my mother lose a different ability almost each day. It was shocking. One day, she didn’t understand when she had to use the bathroom anymore, holding her urine for over 12 hours. A few days after her incontinence began, she lost the ability to swallow and had to be fed through a tube.

At this point, an even more stressed and frustrated family manages to transfer their loved one to a larger hospital, a teaching hospital maybe, or at least something more equipped to handle this ‘mystery’ disease. More tests are endured, less results are delivered because CJD is so hard to diagnose, and the patient and family are both suffering horribly. Patients are not receiving drugs necessary to make them more comfortable, or they are still receiving useless physical therapy, or worse; getting thrown in a psych ward.

Here is where I am outraged. My mother was lucky enough to be under the care of Dr. Russell Walker at Barrow Neurological Institute. I have heard horror stories from others who weren’t so lucky. Nurses were unafraid to touch my mother, but I have heard of some other families who have had to deal with this fear. I have heard of families banging their heads against the wall trying to get proper medication for a loved one who is combative and hallucinating. Since CJD patients often cannot communicate as they lose the ability to speak and experience aphasia, they cannot ask for meds. They cannot tell you if/when they are in pain. They cannot tell you what is wrong and they cannot ask for help.

I always felt a severe disconnect with my mother as she was dying because she could not speak to me. We couldn’t tell what she wanted, what she saw when she hallucinated, we couldn’t understand any words that came out of her mouth; it was awful. I am sure she knew she was dying, but she didn’t know what was killing her. We weren’t able to say goodbye to her and she couldn’t say goodbye to us. It’s a bad enough situation as it is. Families have to go on FMLA and hopefully they can afford to not work for months. Many families are already caring for elderly relatives when CJD strikes, as was my mother’s case. She was a healthy, 55-year-old woman who took care of a mother with Alzheimer’s and a father with numerous health problems.

We need to make the situation easier for CJD families everywhere, and that begins with better education of doctors at all hospitals, not just the big ones. Many of us are involved in this year’s CDC-sponsored CJD Medical Education Project facilitated by the CJD Foundation. We are hitting all the big hospitals and I will be going to Barrow Neurological to see Dr. Walker and her colleagues later this year. Hopefully next year, we can go into smaller hospitals and educate the doctors and nurses who are usually the first to encounter a case of CJD. Think of them as first responders.

It does not make it easier when a family is mistreated by an uneducated hospital. I have recently learned of a family with a 55-year-old mother who has a suspected case of CJD with the most severe onset of symptoms I’ve heard of in a while. She is having severe hallucinations, is combative and is angry. The hospital in question told the family she needed to be put in a psych ward for her own safety after she fell and broke a wrist. There is no excuse for this. A CJD patient, or suspected CJD patient should never be placed in a psych ward. I feel from my own personal experience that a patient can be properly medicated and cared for at any hospital of any size without having to be demeaned by being thrown into a pysch ward. If a patient has CJD, they aren’t going to benefit from a psych ward at all. They have no control of themselves and never will again. Caretakers must concentrate their energies on making the end of life as peaceful and comfortable as possible.

My mother responded well to seizure meds when she got to BNI. I am not sure what specific drugs she was given to calm her down, but I’m hoping some other CJD families will comment on that. I have been meaning to obtain my mother’s records from BNI to find out what worked for her so I can tell other families, but life happens. The nurses at BNI were fantastic, even padding her bed because of her seizures and myoclonus. That’s all you need to do; treat the patient with respect, give the proper meds to keep the patient calm and provide some padding in the bed. My mom may have had to be tied down at one point in bed, but I can’t remember. She did have to be tied to a chair when sitting up and also had to be propped up with pillows. We all worked very hard to keep her as comfortable as possible. A psych ward never entered the equation. CJD patients need to be in the neuro ward, not the psych ward.

I can say this was frightening news as someone who has a family history of CJD. As we carry the E200K gene in my family, I have a 50% chance of developing this disease. I have yet to be tested. I am not sure if I will get tested but I do know if I am to die as my mother did that I most certainly would never want to end up mistreated in a psych ward.

Tips on meds much appreciated

2006-08-03T11:22:00.000-07:00

We have a new CJD family that needs help right now. (CJD still uncomfirmed) They've already been through hell and want to know what meds can help alleviate symptoms like myoclonus, hallucinations etc. Leave a comment and talk about what meds you thought helped your loved one, or e-mail me and I'll post for you at heatlarson AT yahoo dot com.

Your chance of eating a mad cow has increased

2006-07-31T18:00:00.000-07:00

With the BSE testing cutback just authorized by Agriculture Secretary Mike Johanns, you have a higher risk than ever of eating a cow infected with BSE, meaning your chance at living a long and healthy life has just increased significantly. Those of us who have witnessed a loved one dying of CJD never thought we were testing enough cows for BSE to begin with. My belief still stands; we should be testing every cow meant for human consumption for BSE.

The Organic Consumers Association is upset about this testing cutback. Far less than one percent of the beef you are eating has been tested for BSE. You could very well be eating diseased meat which means CJD could be incubating in your body right now. Don't you think your tax dollars would be better spent insuring your food is safe from a fatal disease?

So one asks, where can you find beef that can be trusted? Not everyone is going to go vegan or vegetarian to ensure their safety like I have. So what are you to do if you and your family still eat beef? Creekstone Farms wants to test every single one of its cows for BSE but the USDA doesn't want to allow this. Doesn't that make the USDA look pretty guilty of trying to hide a BSE problem in America?

Read about it here.

Letter from Florence Kranitz about BSE testing cutback

2006-07-25T13:49:00.000-07:00

Dear CJD Foundation Families and Friends:

I hope you are all having a good summer. We, in Ohio, are enjoying beautiful weather, for a change, and hope the sunshine we are experiencing is entering your lives as well.

Many of you (144 to be exact) attended the CJD Foundation’s Fourth Annual Family Conference. Judging by the response of those attending and from the evaluations we have received so far, this was our most successful conference yet.

Right after the Conference on July 10, Ruthie George, Dr. Gambetti, Chris Waldrop from the Consumer Federation of America, Ken Kelly from the Center for Science in the Public Interest and I met with the Secretary of Agriculture, Mike Johanns, his Under Secretary, Dr. Richard Raymond and his Chief Legislative Aide, Beth Johnson. The meeting lasted about 35 minutes. We presented a letter outlining 3 requests, one of which was to test every cow over 30 months of age, to conduct random testing on cows under 20 months and test all animals exhibiting neurological symptoms The USDA representatives were all very attentive. Secretary Johanns indicated that they were considering cutting the BSE testing back from 750,000 to 40,000 head of cattle per year and as the meeting ended we expressed our strong objections to the possible BSE testing cuts.

As most of you know, those cuts were announced last Thursday, July 20. From the upgraded number of 750,000 over the last 18 months (less that .01% of the number of cattle slaughtered for our food supply) to 40,000 per year. The Administration has decided that the cost of continued upgraded testing is not “scientifically justified”.

Needless to say, this decision appears to be based purely on economics. I submitted an Op Ed piece to the Washington Post yesterday. If it isn’t published by Friday, I’ll revise it and send it out as a press release and will also send a copy to you.

In the meantime I am asking all of you to get involved. Unless we, as a group speak loudly, publicly and take action our government will never know there are Americans who are outraged by this decision. We have no vested interest and therefore we must be the group leading the charge.

Those of you who made Capitol Hill visits should call the staff person you met with in each office and register your deep concerns and disappointment, ASAP! Ask where the member stands on this issue and if he/she would be willing to call the USDA, APHIS (Animal Plant Health Inspection Services) and/or FSIS (Food Safety Inspection Services) and the Government Accountability Office to object to this policy change. Follow your call with an email. Please remember, I am only one person but I have the ability, the right and the obligation to strongly and publicly object. I ask you to please do the same.

Thank you.

My best,

Florence

Florence Kranitz,
President
The CJD Foundation

The E200K Cough

2006-07-22T23:23:00.000-07:00

I've met a couple more E200K folks like myself via CJD Voice/friends who attended the CJD Family Conference in DC this month. I'm still struck by the dry, persistent cough seen in E200K patients. My mom had it, and the more I communicate with others who have E200K families, I am finding the cough is extremely common as is the quick death. I know I'm hardly Stanley Prusiner, but I think it's safe to coin a term here -- "The E200K Cough." Show me one E200K patient who didn't display the dry persistent cough in the months and weeks leading up to their death.

U.S. Scales Back Mad Cow Testing Even Further

2006-07-20T19:20:00.000-07:00

The USDA is aboout to scale back testing for BSE because current testing is showing what Agriculture Secretary Mike Johanns says is, "no significant BSE problem," according to CIDRAP.

Instead of testing over 1,000 cattle per day, as has been the practice since June 2004, the USDA will now test a mere 110 per week. I have to stress that you can't find BSE if you're not looking and not only that, but you can't find more atypical strains of BSE if you're not looking.

I was extremely excited when current testing proceudres recently turned up a case of atypical BSE in the U.S. -- every honest finding brings us closer to the breakthrough we are looking for in prion diseases. Not only wil decreased testing sacrifice America's progress in this area, it will also be putting every meat-eating American life at steak...pun intended.

Didn't hear about our atypcial BSE in the U.S.? You need to read the blog more often.

Texas Governor Declares CJD Awareness Week

2006-07-20T06:00:00.000-07:00

Check back later for an update on this story.

2006-07-20T05:58:00.000-07:00

Canada announces 7th mad cow

2006-07-15T12:55:00.000-07:00

Canada has indeed found it's seventh cow with BSE in what CIDRAP reports is the second finding this month. U.S. Agriculutre Secretary Mike Johanns has sent an American expert to aid in the investitation because this BSE-positive cow was four years old -- therefore born after the feed ban went into effect in 1997.

Kind of makes you wonder how many four-year-old, BSE-positive cows are making it onto dinner plates in America, considering how few cattle are tested here and considering how people like Johanns are banking on the fact that 4-year-old cows aren't supposed to get BSE...

If you were at this weekend's CJD Family Conference in DC,

2006-07-10T17:34:00.000-07:00

Feel free to leave comments here! Discuss who you saw and what you learned while there and network with others who went while informing those of us who couldn't make it.

You can always e-mail me: heatlarson AT yahoo.com.

Will Canada Check in with #7?

2006-07-10T17:10:00.000-07:00

According to CIDRAP, Canadian officials have announced that they are waiting for test results to confirm whether or not a seventh cow has been found to be carrying BSE. Samples from an Alberta cow are being tested.

For those keeping track, a 15-year-old cow from Manitoba was just discovered to be carrying BSE just six days ago.

So if Canada has found six BSE-positive cows with a possible seventh yet to be determined, why have we only found three American cows with BSE so far? Don't even get me started on the amount of cows Japan has found so far...

A quick search of the Canadian Food Inspection Agency's page says they found three BSE-positve cows in a high-risk population of 60,000. (Obviously, that stat is as of 3-4 cows ago...)

Anyone know how many cows Canadians slaughter for food per year versus how many are tested for BSE? We eat about 75 million cows per year here in the U.S., (last stat I remember seeing on the subject, that number may be higher or lower now). How many are we testing? How many BSE-positve cows are getting through to U.S. dinner tables?

We are closer to a CJD blood test

2006-07-07T10:48:00.000-07:00

Imagine being able to detect CJD in a person before they are even displaying symptoms of the disease. Imagine being able to do this to someone like me, whose family carries the E200K gene, and being able to detect CJD in my body before I am even falling ill from it. We just may be a short step closer to making this a reality.

Many have told me early detection may be the key to a patient's survival...in the future, of course, provided we have a treatment plan of some kind to rely upon. In my dream world, we would use the blood test to detect CJD in my body and then we would instate treatment to prevent me from dying from it, whatever that treatment may be. I would be able to bypass the horrible symptoms my mother suffered from such as cerebellar ataxia, incontinence, memory loss, vision loss, inability to walk and inability to swallow, just to name a few.

Another wonderful aspect of a blood test for CJD would be the protection this would offer to our blood supply. If this test becomes standard one day, I wouldn't even be able to estimate the lives it would save all over the world.

Good news about stem cell research from New Scientist

2006-07-07T10:32:00.000-07:00

Finally, we can get past bioethical considerations and move stem cell science forward. Ever hear of "virgin birth embryos?" The future of stem cell research is bright and suddenly unoffensive.

Coming soon -- the first CJDTalk Podcast

2006-07-06T23:19:00.000-07:00

I am right now working on the inaugural CJD Talk podcast! The first one will contain the interview I did on KPFT in Houston with Shirley Wilkes-Johnson on Go Vegan Texas. If there's something you want to hear about on the podcast, please let me know. If you're in DC and want to record something for the podcast, you can send me an audio file and I'll put it in the podcast. You can do the same even if you're not in DC, come to think of it. The podcast is for us, the CJD Families all over the world, so I want to make sure it serves everyone the best it can. Please send your suggestions/stories/tips/audio files to heatlarson AT yahoo.com.

Canada reports mad cow #6

2006-07-05T15:46:00.000-07:00

Canada has confirmed a sixth cow with BSE, this one reported to be over 12 years old. This cow was from Manitoba.

I will not be in DC this week

2006-07-05T09:51:00.000-07:00

I am not traveling to DC this week for the CJD Family Conference. I'm staying in Phoenix because I'm only working part time right now, so a trip to DC is out of the question. I'm a bit sad I'm missing the conference because I really wanted to go this year to meet everyone, especially since people are traveling from so far away! Next year, I promise I'll make it out there somehow.

If you are going to the conference, feel free to send me updates for the blog! Send e-mail to heatlarsonATyahoo.com.

Oops, we undershot the vCJD risk

2006-07-02T10:21:00.000-07:00

According to CIDRAP, the current estimate of how many will die of vCJD may just be too low. Honestly, I know a legion of people who could have told you that. A study in the Lancet by Collinge et al reports that the incubation period of Kuru could be several decades long and that this could very well be the case for vCJD too. In other words, we may have seen only the beginning of the death toll vCJD will cause.

A stat such as this isn't very encouraging:

"The authors state that because of the genetic basis for vCJD susceptibility, the cases identified so far may represent people who are genetically predisposed to have the shortest incubation period."

We can't prevent these deaths at this point because whoever is going to die of vCJD has already eaten tainted meat and been exposed to the infectious agent and therefore the disease is already incubating. The only solution that I see is to work as hard as we can towards treatment of prion diseases and a possible cure. I can't believe anything other than we will get there.

Possibly, we've only seen the first wave of vCJD victims.

Why I support stem cell research

2006-06-30T14:44:00.000-07:00

I support stem cell research in case CJD happens to me someday, and even if it doesn't. Stem cells may one day be a valid form of therapy for those suffering from CJD. Prions eat holes in the brain, so how do you regenerate the parts of the brain that were lost to CJD? Stem cells could be an answer. Actually, it looks like a NINDS scientist is already making brain cells regenerate. Check it out!

The EuroCJD Experience

2006-06-29T20:38:00.000-07:00

The little angel looking over my shoulder has sent me a copy of The EuroCJD Experience, a study about the E200K mutation of CJD, the mutation my mother's family carries. (It's on her paternal side; I have yet to be tested). Though I haven't sat down to read the study in its entirety, I skimmed already to get some highlights:

"A total of 10-15% of human transmissible spongiform encephalopathies (TSEs) or prion diseases are characterized by disease-specific mutations in the prion protein gene (PNRP)." I thought it was less than that, in other words, I thought it was under ten percent. I thought those affected by the genetic mutation were a rarity. Seriously, I was under the impression that fCJD happened around 5% of the time).

Knowing your mutation, according to the study, may be able to give you a fighting chance at some point -- provided someone comes up with a form of treatment enhanced by early detection. So as I've always believed, knowing whether I am positive or not will come in handy someday. But someday isn't here yet. We don't have a solid method of treatment for CJD. But as soon as one becomes available, sure, take my blood and test it. But not before then.

Here's some food for thought: Perhaps this future form of treatment is PPS, or Pentosan Polysulphate. I have been hearing rumblings in the CJD community about how it is helping Jonathan Simms in the UK. Say I go get my genetic testing done and find out I am positive for the E200K genetic mutation as my mother was. I am 26 now; my mother was 56 the day she died. According to the Canadian study below, a dry cough is a pretty strong indicator that CJD has been triggered in an E200K patient. My mother had the dry cough in the months prior to the obvious onset of her CJD symptoms. So will I be able to begin PPS treatment once I display the symptom of a dry, persistent cough? The cough shows up months before death, will that be enough time to save my life with PPS? Trust me, I long to bear the weight of survivor’s guilt when I’m 60, 70, 80, 90 years old!

One More Thing About the Atypical BSE Strain in America

2006-06-27T18:47:00.000-07:00

The most important thing to realize about this new finding of an atypical strain of BSE in America is that this wouldn’t have been found without testing animals for the disease. Imagine the power that researchers would have if every animal in America were tested for BSE! We would have all the information needed to help stop this disease at our fingertips. We would know how many cattle in the U.S. are carrying BSE and we would also know what strain they are affected by. This kind of information would help illustrate how the disease is mutating and how animals are getting infected by BSE. Hiding the BSE problem in the U.S. by refusing to test every animal meant for human consumption is helping no one. We can’t fix the problem until we know how widespread it is. Here is the link once more to the article about the new atypical BSE strain that has been found in the U.S.

heatlarson@yahoo.com

A unique conflict of interest to torment my soul

2006-06-17T20:36:00.000-07:00

Just to show you how far-reaching the beef industry's promotions are (and their budget), I am now running commercials for "American Beef" during my show on 98.7 The Peak. How irritating is this for me as someone who fights for safe beef in America and for a cure for CJD? I fight for public awareness of this disease and will with my last breath, whenever that may be.

And I go to work to play beef commercials. Each beef commercial should be followed by a CJD Foundation commercial, or a Concerned Consumers of America (if there is such an organization) commercial. Each beef commercial should be followed by something that says "Oh, and by the way, we don't test every animal for mad cow disease. So eat our beef, but it could kill you if you eat it. We don't care about your health; we just care about getting richer, we don't care at whose expense, or how many lives have to be lost."

Even more ironic, I'm scheduled to read a United Blood Services PSA right out of the American Beef spot. How funny is that? Donate blood, unless someone in your family died of CJD, which is what happened in mine and I can't donate blood at all. Ever. But I also know our CJD is genetic. Thank God I never donated blood.

Also irritating is having to give away a prize for Outback Steakhouse. I didn't do that. I left it for Monica to give away after my show was over. I cannot possibly ever promote something that I know can kill someone. There is no guarantee American Beef or Outhouse Steakhouse beef is safe. So why give it to someone? I may as well be running Marlboro commercials and giving away Camel cigarettes. That's how responsible this steak crap is.

Guess what else? My station charges big bucks for these adds, so American Beef is a big spender. We're the #1 rated radio staition in Phoenix with the highest revenue. No wonder American Beef wants a piece of us.

My interview from today's Go Vegan Texas

2006-06-12T16:23:00.000-07:00

Today's interview with Shirley Wilkes-Johnson on Go Vegan Texas went well. I'm grateful for any and every opportunity I get to educate the public about CJD and mad cow disease. Here's a link to the KPFT archives so you can listen if you missed the show:

Go Vegan Texas

Heather Larson on Go Vegan Texas Monday June 12

2006-06-11T15:00:00.000-07:00

I'll be LIVE on Go Vegan Texas from 8-8:30 am PST in Houston. You can listen live here:

http://www.govegantexas.org/index.php

Just click on the cow's ears (bottom left corner of the page).

I'll be plugging the current issues of Veg News Magazine because I'm on Page 96 (back page) talking about "How I Went Veg."

I'll also be plugging this blog.

I'll be talking about two issues close to my heart -- the danger of mad cow disease in America and Creutzfeldt-Jakob Disease, which killed my mother at age 56 in 2004.

Variant CJD can be contracted by eating contaminated meat and the US only tests one tenth of one percent of the cows meant for human consumption in this country. Please understand the risk Americans face each day just to eat a piece of beef.

And that, among other reasons, is why I'm VEGAN!

Viva la Veg News: http://www.myspace.com/Veg News Magazine

heatlarson@yahoo.com

Fascinating E200K News

2006-06-04T14:52:00.000-07:00

I think this new study from the Canadian Journal of Neurological studies is pretty interesting. When my mom was dying of CJD, a dry cough she had drove me nuts. My mom actually exhibited the cough for months before the cognitive and physical symptoms of her CJD, like cerebellar ataxia and myoclonus, showed up. My mother coughed almost non-stop sometimes. I'd get on her case about it but she'd just dismiss it as allergies. Being around someone who coughed like this was rough; it was irritating and easily got on my nerves and my father's too.

I forgot about the cough because it paled in comparison to other CJD symptons like incontinence, aphasia, ataxia, myclonus, loss of eyesight and inability to walk. I was reminded of it again by Tracy K. at the CJD Foundation when she was filling out my questionaire. Tracy told me around 10-15% of patients experienced this persistent dry cough as a symptom of CJD. (Tracy, correct me if I'm wrong).

The CJN study talks about a mother and son who suffered the 200K mutation of CJD, 20 years apart, and both exhibited the same persistent dry cough. My mother's mutation was E200K, 129M.

So does this then mean that the persistent dry cough is a hallmark of the 200K gene mutation?

Here's a link to the study:

http://cjns.metapress.com/

Now We’re Getting Somewhere!

2006-05-31T17:31:00.000-07:00

I know; upon closer inspection this is pretty bad news about the evolution of BSE in America. But that’s just the thing – this proves there is an evolution to BSE in America and it’s happening right under our noses. No news isn’t good news in regards to BSE. Anything we can learn will bring us closer to finding the key to how this disease works so we can cure it in humans and animals.

I’ve felt all along that we must have missed something in researching prion disease over the last 250 years, likely something obvious and simple. There’s certainly a missing link with TSEs, which is why I’m glad when something like this comes out to shed some light on the disease and how we approach it.

Remember the feed ban that has been in affect in the U.S. since 1997? This is the feed ban the USDA refers to when it tells you American beef is safe from mad cow disease. It’s the feed ban that supposedly means cows aren’t being fed other ground up cows. (Our fantastic system of checks and balances on this is a whole other post). Every time a cow tests positive, it’s always too old to have been affected by the feed ban, because the cows have been age 12 or age 10 and must have contracted BSE before the feed ban went into affect. This is usually the point where U.S. agriculture secretary Mike Johanns tells you that American beef is safe.

In previous posts, I’ve talked about why no one in this country can ever categorically tell you that American beef is safe to eat. Johanns ought to be ashamed of himself in much the same way Phillip Morris should be ashamed of peddling cigarettes. Because when you peddle things that can kill people, people die.

Which brings me back to this new article. The last two cows to test positive for BSE in the U.S. have been found to have carried atypical strains of BSE. This is leading scientists to believe older cows such as these are susceptible to this atypical strain, feed ban be dammed. And we’re back to the drawing board.

This is why my license plate says “CURE CJD.” The cure is the answer. That’s what we have to work for. We aren’t sure how the disease travels through the body and onto the brain once it enters. We aren’t sure if the feed ban is working now. We aren’t certain that these people in the U.S. dying of CJD aren’t in fact victims of a U.S. BSE outbreak.

I have just been contacted by a relative of a 40-year-old woman who died of CJD. Yes, 40-year-olds, 25-year-olds, and 30-year-olds are dying of CJD in America. Since our feed bans and animal testing procedures are an obvious sham, the only answer to stopping this madness is really finding the cure of this disease.

Here’s a link to the article about this latest research into atypical strains of BSE:

http://www.rapidcityjournal.com/articles
/2006/05/31/news/local/news05.txt

Before you eat that next burger, remember that America only tests less than one tenth of one percent of the cows eaten in this country. (See Vicki Sutton’s article in a previous post for more on that).

The CJD Family Conference is in July

2006-05-26T13:12:00.000-07:00

The CJD conference in Washington, DC in July will be attended by people from all over the globe and takes place from the 7th to the 9th with Capitol Hill visits set to take place on the 10th. For more information, please call the CJD Foundation at 1-800-659-1991. Registration is $150 and the conference takes place at the Washington Court Hotel.

Speakers include Dr. Pierluigi Gambetti, Dr. Robert G. Will, Dr. Claudio Soto, Dr. Gene Major, Dr. Richard Knight, Dr. Neil Cashman, Lt. Col. Terry Besch, Dr. David Kocisko, Dr. Michael Geschwind, Dr. James Sejvar, Don Simms, Dr. Muneto Ueda, Deanna Simpson RN, and more. Speakers will be representing the U.S., Canada, Japan, and the UK.

If you know of anyone who will be attending from Australia, please let me know! This blog is, after all, for networking.

As someone who has lost three family members (known) to this disease, I will be especially interested in hearing Don Simms speak about his son’s progress with pentosan polysulphate (PPS) treatment. I do not know if I carry the E200K gene, but must consider the treatment options available in the long run if I am to get this disease like my mother did. Though I wouldn’t favor PPS treatment if I were to fall ill today from CJD, I am interested in hearing more about what we do know about this drug. Maybe we can push for me research on PPS in both the UK and the U.S. Then maybe someday, it will be a consideration in my life.

I’ve been planning to attend the conference all year, but without a current full-time job, this is going to be understandably tricky. If I am able to attend, I will be interviewing as many people as possible for podcasts and articles to be posted here at CJDTalk.

Mother’s Day Is Upon Us

2006-05-11T12:56:00.000-07:00

Many people are missing their mothers this Mother’s Day, self included, because of CJD. I have no mother to buy flowers for this year because there is no cure for this disease. I have no mother to talk to when I’m sad because there is no cure for this disease.

You know what kind of woman my mother was? She took care of her family. She worked hard, even on the day we took her our of her home for the final time and off to the emergency room to find out if she had M.S. or Parkinson’s Disease. She worked that day! She could hardly walk, but was sending e-mails to her office. Her coworkers knew something wasn't right with her e-mails to them.

My mother took care of her elderly parents. Her mother had Alzheimer’s disease and her father, for reasons I can’t understand, was unable to properly care for her. My mother took them to doctor appointments, doled out their meds and drove them to doctors. She handled their finances. She was always looking for information on Alzheimer’s disease because she wanted to know everything about her mother’s medical condition.

My mother put my father through school in his late 40’s, working hard at her full-time job, looking after her high-school-age daughter and helping him with homework. That degree was hers just as much as it is his. And when my father couldn’t find work, she kept a roof over our heads.

She loved to laugh. She watched "Everybody Loves Raymond," "Frasier," and "Nick at Nite." She was a huge fan of Anderson Cooper. Her favorite foods were chocolate and coffee.

My mother was Super Woman, taken down by CJD a day after her 56th birthday. She faked it as long as she could until the ataxia (jerky muscle movements) and balance problems got the better of her. This was about a month before she died. I’ll never forget her screaming at me for no reason as her personality changed and I didn’t understand why. I’ll never forget her telling me she couldn’t recognize her own handwriting.

I most certainly will never forget one of her last sentences to my father, “I don’t want to be retarded.” She died about a week after saying that.

This blog is dedicated to all the families who don’t have a mother this Mother’s Day because of this awful disease. This blog is to encourage us all to keep their memories alive and to keep working for a cure so their deaths were not in vain. And this blog is also to encourage safer food in America, so other mothers, children, sisters, brothers, wives and husbands aren’t lost to this disease.

This weekend will not be easy for any of us.

It’s a Mad Mad World: US Pastures Threaten Human Health

2006-05-10T19:57:00.000-07:00

The following article is one of the best I have seen about mad cow disease and food safety in America. It was written by my friend, Victoria Sutton and ran in the Paradise Valley Community College Puma Press. Looking at mad cow disease in this country from the inside, especially as a member of the media, is discouraging. I always see the same general and incorrect statistics and facts cited, along with glittering generalities.

Victoria’s article doesn’t contain any of this! She doesn’t give the bogus “1 in 1 million” statistic about CJD. Every newspaper article says only one in one million people are infected by CJD, which is untrue. Once you start working the numbers and factoring in the age of the patient, it becomes one in 9,000. Then when you add more factors, it is one in 7,000 – but that is going to have to be another post for another day.

Here is Victoria’s bio:

Sutton, Victoria, AAS Environmental Health & Safety Technology, BS, Life Sciences, Ecology and Organismal Biology, Arizona State University; 8-year volunteer/rehabilitator for Arizona Game and Fish (permit under US Fish and Wildlife); has been researching and presenting general disease, radiation and management strategy information involved with Chronic Wasting Disease since 2002 and has been researching and presenting comparisons between Chronic Wasting Disease and Mad Cow disease for over a year. Also included in research and presentation interests is the management and radiation of avian disease. Presentations have been made to hunters, upper division life sciences classes at Arizona State Univeristy and at the Arizona Game and Fish Symposium.

Now for the article:

It’s a Mad Mad World: US Pastures Threaten Human Health

If you can sit down and assimilate all of the public information lately on diseases, think of how many are related to animals. Avian Influenza (Bird Flu) and West Nile virus are two major ones. However, there is another very serious animal-related threat in our midst, and it mysteriously seems to be avoiding the press like we should be avoiding it ourselves. It’s called TSE, which stands for Transmissible Spongiform Encephalopathy, and it has several closely-related forms. One form of it is scrapie, which affects sheep. Another one is chronic wasting disease, which is spreading rapidly amongst deer, elk and even moose in the wild and on game farms. It’s also been found in mink and cats. If those still don’t ring a bell, think of a more familiar form: bovine spongiform encephalopathy (BSE), or Mad Cow Disease, and think of it as a real danger that’s in the US; grazing state lands and dotting landscapes. Could it also be on our grocery store shelves?

On March 13, 2006, a cow in Alabama tested positive for Mad Cow Disease. This was the third publicly announced case in the US. The United States Department of Agriculture’s (USDA) public response is that the animal was older and ingested feed made from rendered beef, including the spine and brain tissue which is thought to harbor the infectious agent, a protein called a prion. A law was enacted in 1997, one year after the Mad Cow epidemic in England, to prohibit the brain and spine from entering cattle feed, but this Alabama animal was claimed to be older than the law and it is inferred it contracted the disease prior to 1997. The USDA stated that the animal didn’t enter the food system; rather it was buried on the farm. Routine would dictate that all the animals in the herd that shared pasture, corrals and feed with the infected cow will be tested. Now if Mad Cow is supposedly spread to cattle because they ingested infected tissues, it could be thought that the Alabama cow wasn’t the only older cow to eat the infected feed. They are social herd animals and as many as possible are contained in one area, sharing food, soil, barns and pasture. There could have been many, many more that also ate it, became infected and entered the food system.

According to the USDA, “FDA's 1997 animal feed ban rule has proven effective at keeping BSE out of the human food and animal feed supply.” The USDA also states that 652,697 cows have been tested for the disease since June 2004. The nation has about 95 million cattle. The number of cattle tested so far is less than 1%. It does not seem likely that such a low percentage of tested animals would warrant that the feed ban has ‘proven’ program effectiveness, and nothing in science is ever considered ‘proven.’ On March 14, 2006, the USDA announced plans to scale back testing, despite the fact a cow had tested positive in Alabama the day before. The new number of tested animals will be less than 1 tenth of 1 percent. It is estimated that 1 million cattle worldwide have been infected. It seems that the USDA position is that if it’s not found, it’s not a problem, and efforts are ensuring that it will not be found via decreased testing.

The TSE in cervids (deer, elk and moose), chronic wasting disease, is very similar to Mad Cow Disease and has prompted a frenzy of current research. There are some comparisons that can be made in terms of the treatment of the diseases. Cervids contract the disease without ingestion and positive cases are higher in larger groups. Cattle are intentionally kept in large groups. It has also recently been noted that the TSE in cervids has been found outside of the brain and spine and in other parts of the body, including glands, the stomach, liver, pancreas and muscle tissue. The USDA states that risky cattle body parts include the brain and spine, whereas the prion has been found in most tissues of cervids. The USDA allowed the infected Alabama animal to be buried on the farm, and the TSE in cervids is persistent in soil and may be contracted through that environmental route.

So exactly what can happen if a person is infected by a TSE? The disease is called Variant Creutzfeldt Jacob (pronounced ya-cob) Disease, or vCJD. CJD can also occur naturally and is called sporadic or genetic CJD. Like Mad Cow Disease and Chronic Wasting Disease, all CJD forms are degenerative disease of the brain, producing sponge-like holes in the tissues. Also like the TSEs in animals, it is fatal and without a cure. It causes memory loss, lack of coordination, shakiness, incontinence, muscle stiffness and the inability to speak. These symptoms are very similar to those found in a patient suffering from Alzheimer’s Disease, and it has posed great concern for many because it seems that now CJD may be misdiagnosed as Alzheimer’s.

According to Dr. Colm A. Kelleher, author of Brain Trust: The Hidden Connection Between Mad Cow and Misdiagnosed Alzheimer's Disease, reports in medical journals state that approximately 5-13% of vCJD cases were misdiagnosed by physicians as Alzheimer's disease. According to the Alzheimer’s Association, it is estimated that 4.5 million people suffer from the disease. If 5-13% of these patients have vCJD, that number amounts to between 225,000 and 585,000 potential misdiagnoses. According to the science journal, Med-Research America (2005) 64, the number is in fact higher and is thought to be 5-30%.

The USDA states that the prevalence of Mad Cow Disease and the risk of contraction is very, very small, and that there is no evidence that people in the US will or have contracted it. Why would there be evidence? If a person is under the care of a physician for an ailment and dies from it, such as Alzheimer’s Disease, autopsies are not required and if a family wants one performed, it is very expensive. How would vCJD be discovered? According to Dr. Kelleher, the CDC does not require reported numbers on Alzheimer’s Disease, sporadic CJD, or variant CJD. The possibility of vCJD existing isn’t even tabulated by our disease authority.

There are many countries that have banned US beef, including Japan. According to a Japanese news source, Asahi (February 2006), “[Japan] government officials hinted at a further delay in resuming U.S. beef imports following a disturbing report by the U.S. Department of Agriculture that 20 sickly cattle were processed for human consumption. The animals in question had difficulty walking, which is considered an indicator of bovine spongiform encephalopathy (BSE). Although such cattle, known as "downers," were processed while Japan banned imports of U.S. beef, the U.S. government's report brings into sharp focus American laxity toward BSE, sources said.”

The bottom line is that science doesn’t know yet how TSEs are spread, but science knows that it does in more than one way, not only through ingestion. Science cannot yet state that cattle absolutely contract it without ingestion, but they can’t say it can’t happen, either. The unknown would seem to be a huge risk factor for the USDA and the Beef Industries, and if it’s not a risk for the government or for corporations that stand to lose everything if Mad Cow Disease is found more often, it should be considered a huge risk for us as consumers and as people who want to live long healthy lives.

If this is a concern for you, the only current solution is to drop beef from your diet. Watch the labels on other processed foods, and buy lamb and rice for your pets. The United Kingdom is reporting that dogs are contracting degenerative brain disorders, too. Until more is known, the unknown is a risk. To reduce the risk, buy your beef and dairy from a whole foods store and make sure it is free pasture and organic. These animals are typically healthier and less crowded than large-operation beef cattle.

The USDA was questioned on the comparisons and risk research currently conducted on Mad Cow Disease and Chronic Wasting Disease. The agency was also questioned as to why there is no information on their homepage, usda.gov, about the Alabama cow. The USDA did not comment. If the agency does comment, an update will appear in the May edition.

My apologies

2006-05-09T21:33:00.000-07:00

I have been extremely sick/busy this past week. I never wanted the blog to go that long without an update!

It’s National Prime Rib Day

2006-04-27T06:58:00.000-07:00

My local Fox station says today is “Prime Rib Day,” and who decides this, I have no idea. Perhaps Rick Berman and his deep pockets are behind it, or perhaps the murderous ConAgra is behind it. ConAgra let consumers eat E. coli-tainted beef for two days while more tests were run on the suspect beef. People died because of it and others suffered permanent kidney and liver damage. Possibly some other large beef company is behind it. But at any rate, today has been declared “National Prime Rib Day.” I assume you’re supposed to celebrate it by blindly going to a supermarket to buy a cut of prime rib for dinner.

Less than one percent of beef in America is tested for BSE, therefore, you have no idea what you are eating. You have no idea if that prime rib you are about to eat was tested for BSE or not. You don’t know what you are eating when you eat beef.

Don’t ever blindly go to any store to purchase beef. Don’t just buy any cut you see. Go to a store that sells “natural,” grass-fed or organic beef if you must eat prime rib today. The problem with prime rib is that the meat is on a bone – the rib. Prions in meat hang around in nervous tissue and that means around bones. Always avoid cuts of meat exposed to bones and nervous tissue. Always! Unless you know that cow you are about to eat was raised on a small farm you can trust and fed grass it’s entire life. Organic is really best, if you must eat meat.

Personally, I will never eat meat again. Many CJD families are this way simply because we won’t give money to the beef industry so that it can keep killing its consumers. The beef industry and tobacco industry are the same in my book. Both still hock deadly products despite research proving their products are deadly. At least the tobacco industry admits to it now.

This Site Makes No Money

2006-04-24T12:53:00.000-07:00

There will be no Google AdSense, banners, mall links etc. on this blog because I am doing this blog as a public service to other people like me who have lost a loved one to CJD. I am here to simply network and exchange information with anyone interested in prion diseases. That includes CJD families, doctors, nurses, funeral homes, cattle ranchers, politicians, the news media, educators, and researchers.

You can reach me at heatlarson@yahoo.com with questions, complaints, comments and suggestions.

The other plan I have for this site is to post all original content. You may repost it with my permission. It is perfectly acceptable for you to link to my site as well. Check back frequently for updates!

Thanks,

Heather Larson
Phoenix, Arizona

What Terry and I Talked About

2006-04-24T12:47:00.000-07:00

Terry Schwan and I talked about so many things last week when we met face to face, so I’m going to be blogging about each topic individually. The thing Terry said to me that stood out the most was about the U.S. blood supply.

But first, some background on Terry and I. I lost a parent, my mother at the age of 56; Terry lost a son Jeff at the age of 26. My mother’s case was familial, while Jeff’s autopsy showed his was sporadic. Technically, a 26-year-old isn’t supposed to get sporadic CJD. When someone this young dies of CJD, it is usually the variant form, or the form caused by BSE in meat. Terry thinks Jeff could have contracted an American strain of BSE...how else could you explain how someone so young died of CJD? And there are many who have died in thier 20’s, 30’s and 40’s of this disease that no one is really safe. This disease defies all odds and acts unpredictably. With so many clusters of the disease and so many young people dying of it, I hope I can tell as many of their stories right here, at CJDTalk.

If you want to read more about Jeff Schwan, check out this story I wrote for the Paradise Valley Community College newspaper, the Puma Press:

http://www.pvc.maricopa.edu/puma/may05/cjd_schwan.html

Now, onto the blood supply issue. Terry and her husband Steve won’t be attending the family conference this year in DC as I will be, but they have attended in the past and say it keeps getting better every year. Since I plan to go this year and since it will be my first time attending the conference and going to Congress, Terry gave me some advice.

The great thing about going to the CJD Family Conference is that you get to talk to the doctors and ask questions. Everyone gets to share ideas and insight, and you get a chance to meet Dr. Gambetti from the NPDPSC. (He did my mom’s autopsy). Then you get to go to Congress so you can have a shot at making your state’s representatives care about CJD issues in America.

Terry told me there is one certain way to get the attention of doctors and politicians alike – tell them how much this disease is affecting the blood supply. That’s when their ears perk up, so this is what I will talk about. Terry said to imagine how many people are no longer allowed to donate blood in the U.S. because they lost a family member to CJD. I am not sure what the estimate would be, but it would be huge. Everyone who has lost a family member to CJD is forbidden to donate blood. I can’t donate blood, organs or tissue. Ever. Period. And I don’t even know if I carry the mutation. I don’t even know if I’d be allowed to donate blood if it were proven I didn’t carry the mutation. I just know my mom died of fCJD, confirmed by Dr. Gambetti’s autopsy at the NPDPSC.

So that will be the angle for CJD families to take, seeing as it has worked for Terry. I will be lobbying for research for a cure in humans and animals. (I know, why not shoot a little higher, right?) My state, Arizona, doesn’t have a lot of problems to contend with. CJD is a reportable disease in this state, we are overrun with hospices and care centers since our population is so grey, and we have some of the best hospitals. (Barrow, Mayo). I had no trouble arranging my mother’s cremation since I live in a big city. So my choice is to lobby for biotech and other research into CJD. I may talk to a friend about lobbying for CWD-related issues too, but then again, that may be for another time.

I'm very excited!

2006-04-18T12:43:00.000-07:00

Tomorrow night, two CJD families will be getting together and meeting for the first time here in Scottsdale, Arizona. That would be my family and that of Terry Schwan. I lost a parent, Terry lost a child. I can't wait to swap stories. I also can't wait for my dad to see - live and in person - other people like us. He hasn't delved into meeting others and learning about CJD as much as I have. I'd say he's vaguely interested in the details at best. I guess that is how I take after my mother; I have to know everything about the disease. I need to know everything there is to know about what killed my mother. She was like that. She always wanted to know the facts about everything so she could tell everyone else about it. I bet she would have made a great journalist!

My license plate

2006-04-17T12:44:00.000-07:00

This is how I drive around Arizona, with my CURE CJD plates. I have to get the message across somewhow, and in every way I can possibly think of. If you have a CJD plate, llicense plate frame, t-shirt or bumper sticker, please take a photo and send it to me! I'll post a photo of how you are taking the CURE CJD message to the streets and will also tell you story. You can e-mail it to heatlarson@yahoo.com.

Share your ideas

2006-04-10T12:47:00.000-07:00

Please let me know if there is something that you want to know more about, something you'd like me to talk about or if you have any questions about CJD. I'm working on an upcoming CJD Talk podcast, not sure when it will be out, but it will be soon!

About Me:

2006-04-09T15:48:00.000-07:00

I lost my mother to fCJD on November 10, 2004. It was the day after her 56th birthday. So no, this is not a "disease just for old people." People of all ages die of CJD every day, all over the world. Since my mother's death in late 2004, I have met many other CJD families and have learned a lot about the disease. I made the personal choice to become vegan. I volunteer for the CJD Foundation.

What is CJD?

2006-04-09T15:42:00.000-07:00

CJD is a disease caused by a misfolding protein, called a prion. (PREE-on) Prion diseases are a group of rare and fatal brain diseases which occur in both humans and animals. In humans, it is known as CJD.

Cows get BSE, which stands for bovine spongiform encephalopathy. Deer and elk contract CWD, or chronic wasting disease. There is no cure or clinical diagnosis for CJD. There is no cure for any of the diseases in the prion family.

According the CJD Foundation, “The sporadic form accounts for approximately 85% of the cases, the familial form approximately 15%.” The Foundation also says, “Most of the cases are "classical" or "sporadic" CJD (sCJD), occurring for no, as yet, known reason.” When you hear people talking about vCJD, or variant CJD, they are talking about the form that affects typically younger patients and is, in fact, caused by eating beef tainted with BSE.

There is no treatment for CJD. Once it is determined that is what a patient has, doctors can only make every effort to keep the patient comfortable until death, which can come in a matter of days, weeks or months. The length of the disease depends on the mutation.

All prion disease are considered spongiform encephalopathies. Encephalopathy means “brain disease,” and “spongiform” means sponge-like. In other words, the brain becomes filled with holes and looks like a sponge under the microscope.

As the brain is being eaten by prions, the patient will shake, experience mycolonus, hallucinate, become incontinent, lose the ability to walk, lose the ability to speak, experience aphasia, and other symptoms that are very difficult for a family to watch.

My mother died one month and two days after being taken to the emergency room for what we thought were the symptoms of Parkinson’s disease or multiple sclerosis, maybe early-onset Alzheimer’s Disease. Never did we think she had a fatal disease that would kill her in weeks.

Very Inflammatory Article!

2006-04-09T15:01:00.000-07:00

Copy and paste this link into your browser for an especially inflammatory article on the NPDPSC:

http://www.sciencedaily.com/upi/index.php?feed=Science&article=UPI-1-20051021-21481300-bc-us-cjdcases.xml

I have a link to the NPDPSC to the right, by the way. I always wondered how that Patrick Hicks case was going to work out. Last I remembered hearing, the family was having trouble coordinating the lab work in France. If you read the article, well, it sounds like the trouble never ended!

The article is interesting and just another shining example of how our national surveillance system seems set up to fail most of the time. With genetic cases like my mom's, it's easy. The Center knows what it is getting in the mail when it knows it is getting tissue from a 56-year-old woman of Polish descent who already lost two relatives on her paternal side to CJD.

I'd sure hate to have to deal with a "sporadic" diagnosis in my family. I watch these sporadic families go through a lot of hell trying to get answers about how their loved ones died. I guess I have it easier since there is even actual research out there on E200K, 129M.

When it isn't CJD

2006-04-04T23:21:00.000-07:00

Part of what I hope to accomplish with this blog is networking. If someone going through the uncertainty of losing a loved one to CJD finds this blog and gets to have some questions answered, I've done something right.

CJD is extremely difficult to diagnose, and no clinical diagnosis exists. The only sure way to find out if a patient has CJD is to perform an autopsy after death. This takes forever and is done by the NPDPSC, or National Prion Disease Pathology Surveillance Center in Cleveland, Ohio at Case Western Reserve University.

But sometimes, a patient shows every possible symptom of CJD -- only it isn't CJD. Over a year ago, I met a local women whose mother in law was dying of something I was pretty sure was CJD. The woman had symptoms like myoclonus, balance problems and I can't remember what else. Whatever she had progressed fast, leading everyone to believe she had CJD. An autopsty after death showed it wasn't CJD. It was Parkinson's or something like that. At any rate, I lost touch with this woman who lost her mother in law. I don't blame her. The world of CJD is so dark, I don't blame people for running away from it. The eerie thing was that I talked to this woman over the phone and walked her through the dying process of CJD as it happened to my mother and her mother in law died exactly the same way! Step by step, she died like my mom did -- about 48 hours after the feeding tube came out.

This year though, we witnessed a sort of miracle with one family. I guess a miracle would be finding the cure, but I'll call this a miracle nonetheless. A man in South Carolina joined our support group, CJD Voice, looking for answers. Everyone in the group, self included, seemed to think the man's father in law had CJD. He had every symptom in the book. But his family kept digging for answers and battling with doctors. (I have been there!) Recently, the man's suffering was found to be caused by psychological problems. He was given meds, anti-depressants in strong doses, if I remember correclty. He's fine now. It wasn't CJD. I still talk to this man in North Carolina about his father in law.

When my mom was dying, I read somewhere that there are about 600 rare neurological conditions. It never ceases to amaze me what a mystery the human brain is.

My new friend

2006-04-02T17:54:00.000-07:00

On Saturday, April Fool's day, my boyfriend and I went to eat at an awesome restaurant in Scottsdale, called Leo. It's on Scottsdale Rd., just south of Old Scottsdale...can't remember which street, sorry. At any rate, we'd both been meaning to try it for ages. So we go in and get this waiter, Paul. I am shocked and impressed when this guy starts talking about mad cow disease! He starts rattling off information about testing cows for BSE. He asks my boyfriend how many cows get tested in Japan, and of course he doesn't know. So he asks us how many cows in the U.S. are tested? One in 90, he says. I am so surprised a regular person (as in someone who has never seen CJD) actually knows anything about BSE, much less cares. And he complained about how it is illegal for the government to tell you where the cow came from. You never get that tidbit of information when a cow tests positive for BSE. Ever notice that? It always manages to leak out somehow anyway. Rumors like that are hard to keep quiet!

Center for Consumer Freedom Is Lying

2006-04-02T17:46:00.000-07:00

Now the AdSense has placed an ad for the Center for Consumer Freedom on my page. This website is about the worst meat p.r. out there! I am having a little too much fun with the Google AdSense today, as you can tell. I'll turn off the content matching tomorrow with some help from my guru, but I can't figure it out today. Until then, I guess here's another opportunity for me to educate. The Center for Consumer Freedom is all public relations. Don't believe a word of it!

Here's a link to the REAL center for consumer freedom, the Center for Media and Democracy:

http://www.prwatch.org/taxonomy/term/107/9

Do beef companies really pay for advertising to promote their products regardless of what they will do for your health? Are you kidding me? Of course they do!

Actually, Mad Cow USA is one of the best books out there. Sheldon Rampton and John Stauber really did a lot of work to get you the truth.

Irony

2006-04-02T17:41:00.001-07:00

I guess you can take it as an April Fool's joke, but yes, I am aware that my Google AdSense has placed an ad for steaks on my page. Even I can appreciate the irony in that and have a laugh. Just make sure you're going to enjoy safe steak, like safe sex. Know where your meat came from, where it has been, what it was fed in its lifetime...etc. Make sure your steak is at least grass-fed if not organic! Hey, as long as I'm going to advertise steaks, I might as well do it right and give the disclaimer! Beef: eat at your own risk! By the way, I am a vegan. That's how much steak I eat--NONE!

The E200K, 129M Club

2006-04-02T16:50:00.000-07:00

One of my goals with this blog is to find and network with other E200K, 129M families. I found one man in Chile in the same age range as me, who lost a parent in the same age range as my mom. It's a small world when you're E200K! There's a big language barrier there, unfortunately, as my Spanish isn't great and his English isn't either. Right now, I'd like to gather as much information on the E200K mutation as I can possibly find.

I don't wish to be tested to see if I carry the mutation myself for a variety of reasons. I would only want the answer if it wasn't a death sentence. I've got a 50/50 shot. I guess those aren't terrible odds!

No one in America can categorically say "Beef is safe"

2006-03-14T12:54:00.000-07:00

I got into a nice little rant on CJD Voice today, and thought it needed to be shared with the rest of the world:

It drives me nuts to hear people say "beef is safe," and I've heard it dozens of times since yesterday. I do not think anyone in this country can give such a categorical statement that beef is safe. I think there is a proper answer to that question, which no one has yet given. It is:

You need to look for SAFE beef. You need to know where the beef you are about to eat came from. Know the age of the cow, know where it was raised and how it was fed. If that means you buy only local, grass-fed beef, so be it. If you have the money to spend and love beef that much, go to Whole Foods and get the organic stuff. Ask your butcher where the
beef came from, what it was fed and how all of that is proven/guaranteed. On top of that, think of the other sources of BSE...research has shown prions in muscle and cow's milk...other conflicting research shows it isn't there. So who is right? Right now you have a disease in the UK and the US no one can:

1) Properly track
2) Clinically diagnose
3) CURE
4) Tell you how it spreads from animal to animal and
human to human
5) Guarantee the safety of the food on shelves because
our beef labeling system is insulting. It is archaic.

So it's really something you need to take responsibility for yourself, as the consumer. Decide how much risk you can take. I did. I spend too much at Whole Foods, sometimes, yes. I went vegan, which was hard work, but fun. And I'm happy with it. But not everyone will go vegan to protect themselves. It's not practical for the majority and still doesn't cure the problem with have with prion diseases in this country with both humans and animals. And Americans know nothing about food safety, let alone nutrition, to begin with. So the public needs to be educated. The people are going to need to educate themselves. Take responsibility and start asking questions.

I see reporters reading President Bush the riot act at the White House, but I don't see any science and health reporters asking the right questions of John Clifford and Mike Johanns. Every news story that is printed is the same standard. They all say "beef is safe." They all say, "SRM never entered the food supply," or they say "the infected animal never entered the food supply." Then they talk about BSE causing vCJD, and there is a small mention of CJD and then the token (and not to mention wrong) statistic that CJD is a 1 in 1 million occurence. It's really 1 in 7,000 or 1 in 9,000 depending on who you talk to and what variables they are talking about.

So stop taking the news at face value. There is so much more going on and I'm so sick of how this story is covered. I'm also sick of the use of the phrase "mad cow disease." But I'll have to save that for another blog entry. I'm out of time at present.

Ten Year Old Cow Tests Positive for BSE

2006-03-13T21:46:00.000-07:00

Well, it shouldn't be surprising, but it is sad. What I'm waiting for is to see cows younger testing positive. If that happens, we're in trouble. If that happens, those "interlocking safeguards" the Department of Agriculture keeps talking about aren't working.

I talked to Patrick Singh today, his daughter Charlene died of vCJD in June 2004. I interviewed him last year in June (2005) at the one-year anniversary of Charlene's passing. This happened to coincide with the discovery of cow #2. Today's cow was cow #3. Cow #1 to test positive for BSE in the U.S. was December of 2003. I told my news director at the time in June 2005 there would be more cows to test positive. I passed Patrick's info on to my sister station KTAR this evening so they can interview him. I hope they do.

Patrick and I both feel the news today is sad. People who lost loved ones to sporadic CJD in this country don't need the insult added to the injury. First, no on can tell them how their loved ones contracted CJD. Second, they have to watch this cow come up positive today and wonder about the safety of what they are eating. You can tell people sporadic isn't from BSE until the cows come home, but they don't believe it. Patrick has the confirmation that his daughter died from eating infected meat. I have the confirmation that my mother did not die from infected meat because she died of a genetic mutation of CJD. But there are those who bear the frustration of not knowing why. And it has to be scary to see cow #3 pop up today for them.

Another one off to Ames....

2006-03-12T14:58:00.000-07:00

Another cow is at Ames being tested for BSE. Inconclusive test results... I've heard that before! This is the first cow since June to test positive. In a few days, we'll know whether the cow is positive or not. So let's wait. Any thoughts? Please comment. The announcement hit the news on a Saturday, of course...

New Support Group

2006-03-12T14:38:00.000-07:00

I've begun a new support group online at My Space. I know, I have a support group with CJD Voice. It did take me two months after my mom died to find it and only after copious amounts of Internet searches. So I'm starting this group on My Space. I'm thinking maybe this will attract some younger people, since we all know My Space skews pretty young. It is my goal that we all can find each other, network and share information so that we can all keep discovering how far-reaching CJD really is.

http://groups.myspace.com/CJDSupport