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About Heather Larson and the CureCJD Blog
My name is Heather Larson, and I live in Wichita, Kansas. My mother, uncle, and their uncle have all died of fCJD, mutation e200K. My mission is to use the Internet to raise awareness of CJD and to connect people who are interested in finding a cure for CJD. The biggest mission of all is to help find the cure in any way possible! Feel free to contact me, leave comments, and follow on twitter.com/heatherlarson.
You can also email me at hotwords [at] mac [dot] com.
More about me:
I finished my undergrad degree work at Boston University (online) in March of 2010 and graduated in May 2010. I am currently working as a morning radio personality at Power 93.9 in Wichita as one half of “Hitman and Heather in the Morning” on KDGS. My passions include music of all genres, yoga, writing and finding a cure for CJD. I was raised in both the Bay Area and Scottsdale. A career broadcaster, I’ve been in radio since 1998 and also work in online formats creating content. My latest adventure is writing about social good for HalogenTV.com.
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Thanks for your blog. I agree that it is important to raise awareness of prion disease, but also to ensure that people are given the facts, not simply scared by the sensationalistic tendencies of media. I hope to contribute to this education too, through blogging (which I am just setting up) and twitter. FYI, I am a neurologist and prion researcher just starting up my own lab in Edmonton, AB, Canada. (BTW – you mean 14-3-3, not 4-3-3)…
Hi Valerie,
I can’t wait to see your blog once it’s set up! Thanks for finding the blog and commenting. It is so great to see a neurologist and prion researcher with an online presence on blogs and twitter. I am looking forward to all your contributions, both on and offline. I did mean 14-3-3. I must have written in a rush, which is usually how this blog happens.
Pre 1968, vets in Australia successfully used a treatment for a brain wasting disease PEM – Polioencephalomalacia – in livestock, which has similar symptoms to CJD in humans.
I wonder if doctors know of this treatment, which is also for human use.
ainee.
Heather,
Great work I lost my Mom to CJD > E200K in 1997. I found out one week before my Moms death that I also carry the mutation. Im very sorry for your loss and pain > always stay strong<<<<<
Hi Robert,
So sorry to hear about your mom and that you carry the mutation. I still don’t know what my own verdict is. What a horrible time for you to find our your results. We should definitely email. Glad you found the blog.
Heather Larson
Heather,
It’s believed that prions are the cause of CJD.
From my research, I believe prions are not the initial cause of CJD and other brain wasting diseases, but lack of oxygen to the brain, due to injury and/or toxin could be.
I wonder if the medical researchers are doing any research to see if prions are anaerobic – from my research, I think they are.
In Sickel-cell anaemia, the cell changes comformation when it is exposed to oxygen. I believe the lack of oxygen causes prions to misshappen or missfold to cause the brain wasting.
I wonder if you or someone you know, would be interested in my research and findings.
Regards
ainee
I seem to very vaguely remember there may have been a bit of research about something with oxygen that was done at BYU…I’ll have to ask around and see if anyone has a hold of that article still.
Dear Heather,
I believe a treatment which was used successfully in Australia as far back as 1968 for a brain wasting disease in livestock, could well be a treatment – also for human use – for Neurological illnesses, including CJD, in humans.
In 2001, our sheep were diagnosed with a brain wasting disease. Research found the sheep symptoms are similar – give or take a few – to those of human illnesses, including CJD.
Similar symptoms – why not similar treatment?
I’m happy to share my research and findings.
Have you stopped eating Beef? I am so afraid to cook and feed my family beef after a dear family friend of ours was recently given the death sentence that is CJD. I know that not all forms of this “monster” are linked to beef consumption, however it is a drastic shift that I have been scared into to making. Anything to alleviate the potential.
My father-in-law is lying in a hospital bed right now. Mute, blind, incontinent, with a feeding tube, and unable to move except for the spasmodic jerking movements of his arms & legs. Sic weeks ago he was holding his great grandson and cracking jokes, going up to his cabin with his dog and working on the fence. He’s in the VA hospital at home now, after being flown to the Denver VA, where the doctors diagnosed him with CJD (but not definitively – of course). We’re waiting for the spinal test to come back (testing for the 14-3-3 protein). So far – they haven’t seen the indications they might see on an EEG. Basically – the only thing they are basing the diagnosis on is his symptom list, the rapid progression, and the fact that EVERY OTHER test they’ve done has come back completely normal (including a full-body CAT scan, MRIs, blood tests, etc.) I have a question for anyone who has been through this with someone: He has “woken up” about three times in the past few days, and said something completely normal (after not having said a word for over a week). The family is holding on to that fact – as a possible indication that this is NOT CJD. Has anyone ever seen momentarily lapses of apparent consciousness in patients with CJD (when symptoms are this progressed)?
Hi Shelley,
My mom’s EEGs were also pretty normal and didn’t show her neurologist what she expected to see given my mother’s other CJD symptoms. As for the rapid progression of your father-in-law’s illness, that is not common in CJD unless it’s genetic (to the best of my knowledge at this time, and I say that from the bias of someone whose family goes through the rapid progression of the E200K mutation). All those same tests came back normal too with my mom, even a PET scan. She was as healthy as could be save for her CJD symptoms and a fatty liver — the latter of which no one could explain.
I’m going to have to defer to others for your question about the lapses in consciousness and the talking…that’s a very tough one to answer. I saw my mother smile and almost laugh at a joke her brother made the day or so before she died. At that point, she’d gone from akinetic mutism to being (what we thought was) completely unconscious. Her eyes weren’t opening anymore and she’d stopped reacting to us — or so I thought. This smile and laugh I thought I saw could’ve been involuntary, or it could have been her last real “interaction” with us. I’ll never know. But she wasn’t speaking to us. So it’s completely different from what you’re experiencing. With CJD, the disease affects every patient differently depending on which parts of the brain are being affected by the infectious agent. So there is no textbook case or cut and dry answer to your question in that respect because no two cases are alike.
I think what I will do is invite some friends from CJD Voice to answer your question, and see if anyone with expert knowledge may be willing to comment.
I am so sorry for what you are going through and certainly hope your father in law doesn’t have CJD. I hope you find the answers you are looking for.
Heather Larson
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Pingback by A question about consciousness & CJD « Cure CJD | August 3, 2010
I’m sorry to hear about your father.
I have often heard from family members of patients with CJD that there are occasionally moments of lucidity.
Hello again. I thought I’d update the thread since my last comment was August 2nd and we didn’t know for sure if my father-in-law had CJD. The spinal test came back positive for the 14-3-3 protein, and he died on August 8th. Very rapid progression. The autopsy results confirmed that he had an “ocular” variant of CJD. I think they call it that because his vision was the first thing to be attacked by the disease. At any rate, the realization that such a disease exists – and can take someone SO quickly, and in such a way that you often don’t get much of a chance to say goodbye – has reminded me how important it is to say everything you want to say, to everyone you love… NOW.
Its 2 days since I went to my final genetics counseling session and was delivered the news that I have the E200K mutation. I have inherited it from my father who died from CJD in September 2010.
I was told that it was likely to be sporadic becuase he lived 5 months from the initial onset of symptoms. The first symptom I noticed was memory loss.
I am absolutely terrified. After watching my father die from this disease – to now find that it is genetic has basically taken away the value of my life.
All I can think about is what happens if I develop an early onset? Who will look after my young children currently aged between 2 and 11. how will they cope without a mum?
When the doctors delivered the result and asked me did I regret finding out. I answered that I regret the result but still felt that I would want to know the result even though it is not what I wanted.
Interestingly no onw else in my family wants to be tested. Some of those people don’t have children but would rather risk passing the gene on than finding out they carry the gene.
In this day and age IVF can assist in ensuring that you only have children that dont have the gene. I wish I had this option but I have all my kids already.
Starngely I read earlier on thsi blog about copper – my dads full blood sibling (50/50 chance of having the CJD mutation) reported high blood levels of copper. I didn’t want to say to him that maybe this indicates his body is failing to process copper properly and perhaps this is a symptom of cjd.
My dad ate a high protein diet and popped many vitamins. he was fit and otherwise healthy. I do note that a few weeks before his symptoms came on he had 2 vaccines – one was the flu vaccine and one was phneumovax. The phneumovax vaccine is made from bovine materials although the manufacturere insists that the bovine material is sourced from countries that do not have vCJD. I know that vCJD and familial CJD are different but perhaps the ingrediants of these vaccines had a trigger effect some how.
What also worries me is how health professionals lead you to believe that familial and sporadic cjd are very rare but looking around the web at blogs it is not that rare – and appears to be on the increase.
Thanks for the opportunity to share!