Cure CJD

Heather Larson's experiences in helping find the cure for CJD

Where to take this idea next?

I’ve had this blog for a long time and am unsure what to do next. I think the Internet has changed a lot since I started doing this eight years ago… The best form of online, nearly real-time support then was the CJD Voice Yahoo! group. Remember “news groups?” It was like that. Hundreds of people all exchanging emails, supporting one another, arguing, crying together — you name it. I made some great friends through that, even met some in person!

Now you can get even more real-time support on Facebook, which everyone is automatically on now anyway. I think the CJD Family group is pretty great:

http://www.facebook.com/groups/112378108841431/

Many of you have reached out through leaving comments on the blog or emailing me — and I will always answer those as quickly as I can. I admire you for reaching out. There wasn’t someone like me that I found back in 2004 in all my hours of desperate Google searching. If there was, I am not sure I would have had the presence of mind to email questions or comments. So, thank you. Thank you from the bottom of my heart. It has been over eight years now with two deaths in my family in that time. I am, and always will be, healing as well.

So what is next? I do not know. I am just trying to see what feels right.

I’m not going to stop blogging. But I want to blog in a way that can help people more.

It’s nice that this CURE CJD blog has turned into a place where we can exchange stories, network, and give one another a small amount of grief support or answers. But I am not a medical doctor. I am no neurologist, and even if I was, I couldn’t diagnose a person I’ve never seen. As time goes on, I feel less comfortable even trying to answer those types of questions. You can ask all you want, just know that I might not be able to give you the answer you seek. I can merely give you the best possible answers based on my experience of what I went through with my mom. I’m no expert; I’m just here to share.

I’m not a grief counselor. I’m not even a counselor. I can commiserate with you, we can swap stories, but as for giving you real help with your grief, I recommend you find a professional for that. I did. A grief counselor is invaluable! There’s no substitute for that.

I think what I’d like to do for now is steer this blog into a direction with more practical use for whomever comes across it. Whoever you are, wherever you are in the world, I want you to be able to come here and find things you can use.

Would you like to find some facts and information here about:

*How to find a grief counselor? How to find one that offers counseling for free?
*How to find a local grief support group?
*CJD Facts, FAQs and basics?
*How to obtain paperwork to obtain an autopsy through the national (American) surveillance program?

(The CJD Foundation covers these last two pretty well — but did you know that? Were you able to find that out on your own or does it help if a blog like mine tells you?)

Other ideas I have are more personal. Hey, I did this. I have faced the genetic possibilities for the last eight years of my life and it has certainly changed how I have lived EVERY day since October 28, 2004.

*Are you interested in how it has changed me?
*Do you want to know how someone lives with this possibility in their life?
*Do you want to know about genetic stuff, fertility, and in vitro?
*Do you want to know about adoption?
*Do you want to know how the hell I am able to wake up each day and face my life not knowing my genetic status?

It seems to me like some of the above might be more useful to a lot of people. I’m just trying to move forward here. Or, well, I have… I am just not sure I’ve made it public or danced around it.

So you tell me what you want to know more about, what you think I do best here, and if I am helping at all. =)

Thank you,

Heather Larson

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January 26, 2013 - Posted by | Uncategorized

4 Comments »

  1. Hi Heather,

    I found your blog and reached out to you from Australia, so your blog is reaching people 🙂 Here in Australia we have a fantastic support group, but unless you are able to meet up with people who are in the same situation, which is hard as the support group can not put you in touch with others due to privacy laws, it kinda makes the whole situation a lonely section of waters to charter. I was fortunate to meet another family member going through the same situation as me on the weekend, as we both went to a meeting with the CJD support Australia director, so it was nice to actually meet someone and look at them go really know I was not alone. I am currently going through grief counseling and I would recommended it totally.

    I think sharing facts and information would be a fantastic idea. People tend to get confused about the different types of CJD, education needs to be given. I know here in Australia, if the hear of CJD, they say either what is that or right away say “mad cows”. Classical, Genetic, Variant and Sporadic CJD are different, so education I think is important. If you are comfortable to share about yourself and our situation and why you have made decisions you have or have not even better, as it may help someone. For example, someone may think or feel a certain way and they may think it is not normal or maybe having trouble making a decision. They may draw from your experience to help them find their own answers.

    I think it is hard to find people to connect with who would truly understand. I know my mother in law, with the best of intentions told me she knew and understood what I was going through when my mum died. But she couldn’t, this has never affected her or her family.

    Personally, I think your blogs are great and you already are making a difference just by talking about it. Keep up the good work 🙂

    Comment by nicole | January 26, 2013

  2. I’m sure our privacy laws are similar. I’ve never been in a room with more than a few people who have been through this.

    It is my hope to persuade people to stop using the term “mad cow disease” at all. It is also my hope we can make journalists realize that using the 1/1 million “rarity” statistic is in error as not every case is reported, gets an autopsy, etc. I recently spoke to a group of high school students. I tried to explain to them what CJD is. I asked them if they knew anything about various different diseases like Parkinson’s, Alzheimer’s, A.L.S. and M.S. I found few of the kid had heard of all of these diseases. Since they were in high school, why would they? Their grandparents probably aren’t old enough to get diagnosed with any of this. I was an adult when my first grandparent was diagnosed with Alzheimer’s. I’m sure this will change in time with so many baby boomers predicted to be diagnosed with Alzheimer’s. So sad. In explaining it to the kids, I referred to the disease as “CJD” and didn’t use the weird, oddly-pronounced words Creutzfeldt and Jacob. I described what the disease did to my mom’s body and how it quickly took away what made her human.

    It was an interesting experience to be giving a speech to a small room of people to see their reactions. I think that in teaching others about CJD, there has to be somewhat of a visual medium to the explanation. I think video and television would be the best medium to explain what this disease is, what it is capable of, how it affects families, what the body goes through — everything. It’s had to explain in blogs or 8-second sound bits. This is why I feel such horror when “mad cow disease” makes the news and MCD is always mentioned but real people dying of CJD is never mentioned.

    Little by little, I think we’ll get there.

    Heather Larson

    Comment by CureCJD_Heather Larson | February 10, 2013

  3. Hi Heather, I really love your blog it has given me so much comfort to know that im not alone in my thoughts as and feelings after losing my mom to cjd. I would like to read about how I cjd has changed your life. Thanks, lori

    Comment by lori larosaa | February 11, 2013

  4. Thanks, Lori! I appreciate you reaching out and it means a lot to hear I’ve provided you with some comfort. I will definitely blog about how this has changed my life! You’ve got it!

    Comment by CureCJD_Heather Larson | February 13, 2013


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