Cure CJD

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

CJD has been in my life for 14 years

I posted this first across my Facebook page. Each year brings growth and insight to me personally. But his year brought more hope for scientific research than I have felt since 2004. 

I haven’t blogged much here or even updated this site in ages. I plan for this to change. I thought I’d just be ready when the day came, but I did let this site go for years. It’s sat here untouched as well as my first CJD blog here.

I blogged somewhere before about the importance of letting this CJD stuff go and just being able to live my life. It’s healthy to walk away and it took me years to get to even that point. Now it’s taken years to come back and do an update. I was busy living my life, thank God. I maintain that you do have to walk away from this at some point. 

I even wanted to post this yesterday, on International CJD Awareness Day, November 12. But I opted for self-care instead. This is a rough emotional week: Mom’s birthday, the anniversary of her death, and the annual awareness day. 

Cjd

Maybe we have arrived at this magical day when we can plan what we are going to be doing for the next several years about CJD. Maybe I can plan to move to Boston now so I can take part in the the ASO drug trial Prion Alliance will be doing. (Or, preferably, any and every trial). 

Like, holy shit, we’re there — no, I man here. In 2018. 

So before I post what I wrote on my Facebook page on the 14th anniversary of my mom’s death, here’s some context. 

*In 2012, I traveled back “home” to San Francisco to participate in research at the UCSF Memory and Aging Center with Dr. Michael Geschwind. 

*In 2013, I got sober. 

*Somewhere in between, I fell down the rabbit hole of metaphysics and started practicing Reiki. 

*I got out of radio for a while. 

*I got into social work.

*I eventually got back into radio. 

*I earned my 100-hour life coaching certification from the Southwest Institute of the Healing Arts. 

*I started a coaching business. 

*I became a born-again Christian, then decided recently maybe that’s not for me after all. 

Hopefully my posting about my 14-year reflections will make more sense now. It’s real, uncensored, and was written with my thumbs on my iPhone. Curse words, emojis, and all…

Here you go: 

So much to say on the 14th anniversary of my mom’s death — she died the day after her 56th birthday. I love how a woman “who was 29” annually waited for that one last birthday…in which my dad gifted her a dozen red roses and we sat by her bed in hospice with friends and family. 

For those I don’t let in, which is most people, I live my life in a very different manner from a very different point of view. 

Because of CJD. 

I was 25 then, and at worst estimate had 31 years of life left. Now at 39, I have 17 years left (again at worst case scenario). This gives me a completely different viewpoint on life than I had 14 years ago. I have lived these 14 years as if I will die at 56 like my mother and my uncle, who died in 2008. This is how I get thrown of mopeds, yes, but that’s some surface shit people love to point out. 

Since tomorrow isn’t promised any of us, and since I’ve known this since age 25 more than most, I’ve gotten to really LIVE and CHOOSE my path. I knew I didn’t want a boring path. I knew I wanted to experience the most I possibly could! That got me into some trouble. 🤣 

Thankfully I’ve invested in over 5 years of sobriety off alcohol now and 17 years off drugs. I’ve also gone beyond and invested in a fuck-ton of personal growth — my passion. 

I’ve experienced active addiction and recovery. I survived. I know I don’t get a fucking cookie for this. No one should. I don’t get a cookie for doing what I’m supposed to do — kinda like voting. 

I’ve experienced the HELL that is living with a genetic neurodegenerative disease running in your family. It’s like having the grim reaper at every holiday. It’s like having a time bomb ticking in your own body, in the bodies of all your most loved ones. It makes your family crazier than it was to begin with. It spotlights the deep dysfunction generations of alcoholism, abuse, and, “I’ll give you something to cry about,” gives your family tree. 

I’m here to do what my mother and ancestors COULD NOT DO. I am a continual cycle breaker, spot it, break it, move on to the next. 

✅ I obtained a college degree from a top-tier college, Boston University 

✅ I learned self-care, boundaries, and how to opt out of the psychology that made me, made my family for generations. 

⚠️ My family is not going to like the new me come Christmas and I don’t care ⚠️  

✅ I got SOBER 

✅ I stayed SOBER FOR YEARS 

✅ I’m still sober 

✅ I stopped being a people pleaser and ass kisser 

✅ I followed my dreams and I followed my ancestors’ dreams 

✅ I work hard with help from good teachers to work to opt out of the systems of abuse, racism, phobia, colonization, and white supremacy that run this world. Notice I say “work hard” and “work to” because I am still working and the work won’t be done in my generation. (Read it again) 💫

✅ I’ve successfully run my own business before and will again 

✅ I’ve stayed single and I unofficially adopted my “child” to opt out of more systems that did not work for my mother, her mother, her grandmother, etc. I chose career for 20 years and I ALWAYS will. I chose education and more education. I know how my mother sacrificed for me to have this. I am not going to fuck up and throw away her hard work! 

✅ I will never give up the name LARSON. 

✅ I got some damn psychological help

✅ Life-long depression finally got treated! 

✅ Life-long digestive issues finally got treated! 

I know my views aren’t popular. You have no idea how much I enjoy this! ❤️ 

✅ did the 12 steps 

✅ grew past the 12 steps

✅ did the Christian thing

✅ grew past the Christian thing 

✅ I continue to grow 

(I mean Jesus. H. Christ! The micro-aggressions, the gaslighting, the spiritual bypassing, the old-timey stuff that no longer applies, the avoidance of science and history, the tone-policing, the cliches, the unhappy and mal-adjusted people who work the same program for over a decade and never improve! Enough!) 🙄

And I am so tired of the shit 💩 in the world today! 

I just had an experience that showed me how much I don’t have the patience for low-vibe people anymore. 

It’s dragging me down. 

I slept on it and then realized how I coach and how I live are the same: 

✅Low tolerance for bullshit

✅ I curse

✅ I’m passionate

✅I’m a hard ass

✅ I dig deep

✅I go into the shadow

✅I clean out the corners

✅ I take risks

✅I have no fear in unloading what is no longer needed or wanted

✅I believe in anger

✅I support anger

✅fuck “love and light” people LET’S GET REAL. 

That’s my style! 

And my mom would absolutely LOVE IT! 

This life I’ve lived since the second she “got sick” (aka her time bomb went off) 💣 💥 on 10/8/04 has been an insane & painful ride. I’m not going to say some cliche, Pollyanna shit here like, “I wouldn’t trade it for the world.” 

Get real! I’d trade all kinds of shit to see my mom again. I’d trade even more shit to be able to rid the earth 🌍 of CJD!!!! 

So with the rest of MY years I am: 

✅ participating in medical research whether I am the experiment or the control 

✅ raising awareness of CJD 

✅ raising money to research it and cure it

✅ supporting ALL medical research in ALL forms 

✅ working to make things better for my daughter, nieces and nephews

✅ still not caring what you think 

✅ and writing about ALL of it! 

✅ continuing to be blunt 

✅ continuing to call out stupidity 

✅ continuing to live in a way that pisses off the stupids 

This is the part I GET TO CHOOSE after what was handed to me.  

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November 14, 2018 Posted by | Uncategorized | Leave a comment

Here’s what’s coming

There’s going to be some awesome new stuff here — and in other places.

I’m still working on this. However, I will be shifting the focus of what I have been doing all theses years, which is passively blogging about CJD and CJD alone.

It’s easy to say my world has expanded since 2004.

First, I am going to ensure I make money for what I am doing. I have already put in 13 years of emotional labor. I paid my own way to San Francisco and back, I’ve spent money on domain names, etc.

Second, the name “Cure CJD” isn’t appropriate anymore. I’ll explain that in another blog post on another day.

Third, the point has always been to make the rest of the world — the normal people — care about this “rare” disease that rocked my life. In years and years of telling this story, people just wring their hands, shake their heads, give me a look of pity and walk away. (In person and online). CJD is far beyond what most can comprehend and the only people who really care about it are those of us who have witnessed it.

What I will tell you at this point is I intend to flex my journalistic muscle from here on out. Blogging is great, but after 13 years, I am not sure a WordPress blog is the best way I can use my talents and experience to be of use to the world where CJD is concerned.

THIS IS MY LIFE.

This affects my family and I.

I do NOT want my young nieces and nephews to have to go through what we went through.

I left my original CJD blog up online and I will leave this one up too. But I have bigger plans to make this more interactive — and profitable in a way that will help me to not suffer a loss of energy, time, and emotional labor by doing this work.

I’m not going to be getting rich by any means, but I do desire to be able to pay my way around the globe to report on cutting edge improvements to this arena of medical research. I desire to pay for a website, hosting, etc — and not from my personal funds. (I am working two jobs, folks. See where I am coming from?)

For now, I will begin where I am. The cutting edge stuff is only beginning. I don’t need the plane ticket yet. I don’t need to put up a website yet.

But I do want to serve you, me, US. All of us. So if you would like to know something about CJD, about medical research, about my experiences — please reach out. Leave a comment. Do it! The interaction can start now!

~Heather Larson

May 9, 2018 Posted by | Uncategorized | Leave a comment

A new time has come

There is a clinical trial in the works for a preventative drug for prion diseases. It’s five years away.

Clearly there is more to this story, much more to process, and I’ve been processing this for a few days now. Clearly there is news to share.

I was on a conference call the other night hosted by the CJD Foundation — the audio of it is posted now on the CJD Foundation website here. (If you were on the call, please comment with your thoughts).

I honestly can’t say I’ve even visited the Foundation’s website in years. For some time, I didn’t know what they had to offer us — we, the victims of prion disease (genetic or not). I gave up. But I am pleased to see a revamp of the site in line with a revamp of the staff.

Of course, technology is also much better than it was 13 years ago… See the “Interviews with Experts” page now! (Seriously, when this mess began in my life in 2004, we had a Yahoo group).

I have much more to say and do about all this. This new development is one I didn’t think I’d see yet. Honestly, I didn’t think we’d get to this point in only 13 years.

Please understand the above-linked call with Sonia & Eric is a watershed moment for me. For us. For all of us.

Happy processing to all of us. These are exciting times!

~Heather Larson, E200K Family Member

April 9, 2018 Posted by | Uncategorized | Leave a comment

BSE Found In Canada

Shocker.

Here’s the latest news today from The Guardian.

I know I shouldn’t post about it or care. After all, with three deaths in my family and one autopsy from Case Western showing my mother’s case to be E200K mutation…why care? It’s genetic for us no matter what. I can’t exactly point to my mother eating infected beef as the cause of her disease and death. I can point to our DNA, our cultural background, and the fact that this woman didn’t take care of health in all the time I knew her.

It’s nice of the Canadian government to release this news. I will forever wonder how many of these cases are not caught. Until every cow meant for human consumption is tested, I will push for every cow meant for human consumption to be tested for BSE. Why? Because there are so many innocent people in this world and no known clinical diagnosis or cure for prion disease in cows or humans.

I have learned to care more about the cure for humans in the past decade than I do about BSE in cows. My chances at living longer than another 20 years are still, to this day, 50/50 as far as we know. Of all ways I can die, I do not want to die like this. I have witnessed this hell firsthand. No human being deserves this.

So let’s test all the cows until there’s a cure. Then we can put this to bed.

I pray I live to see that day.

February 14, 2015 Posted by | Uncategorized | , , , , , , , | 2 Comments

Thoughts from 2005

Thought I’d share a brief but poignant thought from 2005.

I had meant to mark the decade anniversary better than I have so far. It was ten years since my mother’s death from CJD on November 10, 2014. I was hit by a red light runner on the 14th and haven’t been touching my laptop much since as my wrist was sprained in this car accident. With a lot going on, I haven’t had much time to marinate on what the last decade has really meant to me. That’s probably a good thing.

While cleaning and sorting today, I found a slip of paper marked 1/31/05. I know at that point thoughts were starting to sink in about my new reality without my mother and with my being saddled with a genetic question mark I hadn’t ever imagined before.

This is all it says:

It was horrible to lose my mother to CJD — until I realized I wasn’t alone. Then it was worse. (I met) my new friends, united in loss and in a world without answers.

I remember specifically thinking this after I discovered the Yahoo Group CJD Voice. This is all we had on the Internet at the time — they were called “newsgroups.” So much has changed and so many things have also stayed the same. I still often feel I am navigating a world without answers.

More reflections on the ten-year anniversary to come…

~Heather Larson

December 1, 2014 Posted by | Uncategorized | 2 Comments

It has been a decade.

Ten years almost to the date and I will not let it go without saying something.

October 7 will always be the day I went to bed a normal person with a job, college classes to attend, and some idea of who I was and where I was headed in life. By 11:00 am October 8, I woke up in a baffling nightmare in which my parent was suddenly my child. She lost her human-ness in the next few weeks and was taken on November 10. In a month and two days my mother was dead and my future stolen.

It’s a DECADE later tonight.

I’m actually grateful to be who I am today and where I am. Most of you don’t know the battle I faced to get here. Or that I have donated my medical info to UCSF so we can find a CURE FOR CJD and that I donated my blood to the Red Cross so we can FIND A DIAGNOSTIC TEST TO ENSURE THE SAFETY OF OUR BLOOD SUPPLY. Or that I paid my own way to get this stuff done at UCSF. I am a survivor and I made it through with no support. I have done all I could and if something else constructive comes up, I’ll do that too.

I’m surprised to say you couldn’t pay me to go back to who I was ten years ago tonight. I don’t want that person back and I don’t want that life back. I only wish I could take away what I’ve seen and what I know — of a great many things. May all those lost to CJD rest in peace and may we find a cure and may it NEVER be worse than it already is. May we make it better.

October 7, 2014 Posted by | Uncategorized | Leave a comment

Unspeakable grief is exactly the problem.

The ninth anniversary of my mom’s passing has passed — unceremoniously might I add. It’s been 9 years. we all process grief differently. This was the first year I just let it pass, just let it go. I marked the day of her birthday (November 9) by doing nothing. I spent time with friends. I was conscious of it being her birthday. I posted this message on Facebook for friends because it was where I was that day: 

“I’m thankful today, on this day that my mother would have turned 65, for the chance to set things right in my life that my mother never set right in hers. I think most of us in my age group (and more) saw our mothers sacrifice and give to us and never once take care of themselves like we as women are meant to. I am thankful I finished my college degree at BU. I am thankful I make doctor and eye appointments. I am thankful for pursuing everything I want to do or need to do to take care of myself like becoming a Reiki practitioner, making good friends, and having hobbies. I didn’t see my mother do this for herself. I’m sure it’s part of the reason for ill health at a young age. Young ladies reading this, take care of YOU. Put YOU first.  I have a piece of art my mother never finished on my desk always as a reminder.”

There are a great deal things I can do better in my life than she did in hers. This would be true for any daughter who has lost a mother. My mother did NOT take care of her health. She had worn the same pair of hard contact lenses for 20 years. I had only learned this in the months prior to her death. I am amazed to this day that a person can put her own health on the back burner for decades. I’m sure there’s some link between self-neglect and CJD but I am also certain it goes many layers deeper than that and for me to simply type these words is oversimplifying it at best. 

To mark the day of her passing (November 10), I posted my annual request for research dollars for UCSF: 

“My mother died on this day in 2004 of a genetic neurodegenerative brain disease called CJD. In 2012, I paid my own way to San Francisco and paid for my own lodging, food, transportation etc. so that all of Dr. Geschwind’s research dollars will go to a clinical diagnosis and the CURE. UCSF needs more research dollars. Help me pay it forward and donate in Phyllis Larson’s honor today! Thank you.”

Some years, someone makes a donation.

After nine years, this is what it is. The grief is past. There has been much therapy and counseling over the years. I’m past that. Nothing more than the annual “oh yeah that happened this week and what a trip” reaction to it. I am merely conscious of it. I am conscious that November 2 was the last “normal” day of my life in 2004 before the weirdness of CJD crept in for good. There are certain calendar days that stick out like that. But my mother was only in a hospital or hospice for a total of a month and two days. 

Some 32 days. That was it. 

I know most aren’t as “fortunate” as my family. Ha! 

If your loved on has died of CJD it’s hard to get over, yes. I agree with that. Unspeakable grief is the problem. If you are struggling, you need help. I think many who have dealt with CJD don’t talk about it. Many see it as a taboo. Why? It’s not. Maybe you have a cultural issue at work there. I don’t know. I’ve been fearless in talking about this (within reason) for the past nine years. Speak about it. You will get over it, through it, past it. The more we talk about CJD or our grief at having to endure such a strange loss, the more we help the next person. Until there is a cure, there will always be a next person. 

This is not something you can fix on your own. If you are sitting at the bottom of the abyss of grief over losing a loved on to CJD, get help. See a medical professional for depression. Get counseling. See a psychiatrist. Get meds if you have to. Take a trip. Many have symptoms of PTSD after going through this. Take care of yourself. I am speaking of this grief today because I remember the pain. I am grateful it is nine years later and I feel at peace with this loss to this disease that runs in my family. 

Especially if your CJD loss is a genetic one — get help. Grief doesn’t have to be unspeakable. It’s a natural part of life and it doesn’t have to beat you. 

November 12, 2013 Posted by | Uncategorized | Leave a comment

GSS study funded!

Eric & Sonia have their GSS study fully funded now. Every dollar they raise in the next two weeks will go towards researching FFI and E200K fCJD (the latter of which runs in my family so I am so excited about this). http://www.prionalliance.org/2013/09/17/gss-study-funded-now-fundraising-for-ffi-and-e200k/

September 17, 2013 Posted by | Uncategorized | Leave a comment

The exposure.

If you don’t like it, be a part of the solution.

http://www.nbcnews.com/health/13-patients-possibly-exposed-rare-fatal-brain-disease-n-h-8C11073734

So I left the following comment on Boston.com’s status:

“CJD is genetic in my family. Please allow me to make one point clear to you. Humans do not get “mad cow disease.” That is the prion disease cows get called BSE. Humans get CJD in its various forms. If any of those exposed ever develop the disease, they will display symptoms of iatrogenic CJD. If any of this upsets you, please donate to the research being done at UCSF Memory & Aging Center. It will help people like the ones exposed as well as people like myself — all of us who are at risk of developing CJD. Thank you.”

https://www.facebook.com/boston/posts/10151903060854365

September 11, 2013 Posted by | Uncategorized | 2 Comments

Important genetic research needs funding!

Please check this out and share this link: 

https://www.microryza.com/projects/can-anle138b-delay-the-onset-of-genetic-prion-disease?post_id=703220321_10153128732685322#_=_

Add some dollars to their funding if you can. Sonia & Eric are so affected by genetic prion disease, they went back to school so they could study it. They are in the trenches and their own lives hang in their balance. I would have done the same thing if only I could do math! (We suspect I have discalculia, how’s that for neuro fun?) Cheers to the smart kids who can don a labcoat and get to work. This is valuable work that may save theirs, my, or ALL our lives someday. Please pitch in if you can! 

August 19, 2013 Posted by | Uncategorized | , , | Leave a comment