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.
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.
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/
If you don’t like it, be a part of the solution.
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.”
Please check this out and share this link:
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!
Talk about fundraising! My friend and CJD sister in North Caroline, Jennifer Johnson, is hosting the SK5K Race of Hope today. They’ve raised over $14,000 for CJD research at NORD. The huge payout in awareness raising is everyone involved in today’s race now is just a little more knowledgeable about CJD. Great job, Jennifer and everyone in Clemmons, North Carolina. Check out event info here: http://sk5kraceofhope.com
I am very sorry. Where we stand today, there is still no known cure for CJD. I believe one exists and we just haven’t found it yet.
Every few weeks someone finds this blog I’ve had for the last eight years, which is called “CURE CJD.” It is called that because that is the goal – to eventually cure CJD. This blog is not called that because there is a cure for CJD; there is not. Today, April 26, 2013 no cure for CJD exists.
So please understand that before you email me asking me to give you information on the cure. It is insulting to me as someone who has lost a mother and uncle to fCJD, it’s socially awkward, and shows you never read much of this blog at all. There are eight years worth of writing here. I know you won’t read more than whatever posts are currently appearing on this front page.
This blog started as a place for me to express my grief and suffering over the loss of my mother to CJD. I have been extremely open and honest. I have been transparent in every way. This blog hasn’t made me a cent. It is a labor of love.
Then my uncle died in 2008. We were not on speaking terms when he died. But what that death did to me was kickstart my life in an odd way. How can you sit by and watch family members get picked off by a dreadful disease without having it affect your every daily life choice? That’s when my bi-anual mid-life crises began (laugh) and the amazing effort to complete bucket list items began.
So if you read through all these blog posts (and the early ones from eight years ago at CJDtalk.blogspot.com) you will not find a cure (yet) but you will find my story.
People still think a neurodegenerative brain disease in younger people is something that is taboo. People still mistakenly think this is “mad cow disease” and therefore the patients are “mad” or “crazy.” People still think this only happens to one in one million people, which is erroneous as there is no current system in place to offer a clinical diagnosis of CJD in a hospital setting. There is no current system to track deaths in America by CJD. The only definitive diagnosis is given after death in an autopsy.
And I am tired of writing about this because I have written some version of that sentence a million times on here, in forums, and in emails for the past eight years.
I recently found out there is also no current system in place to track deaths in America by a similar disease, multiple sclerosis. More on that later. That’s a whole separate post!
So here is where were are at. There is no cure. Yet. I’ve been spending much of the last eight years finding my way and living a life I can be proud that I have lived. This is because I could be in danger of dying of fCJD too. I am still refocusing the efforts of this blog. I am currently doing my first Team In Training event for the Leukemia & Lymphoma Society (to avenge a friend’s suffering by blood cancer). Because of this experience, I am learning hard lessons on patient advocacy, awareness raising, and fundraising.
I am learning very good lessons and appreciate this experience so much! I’d like to take what I am learning and apply it to fundraising for a disease I find extremely difficult to make people care about — CJD. Cancer is common and, in cases like my friend April’s AML, it is curable.
But CJD is growing more common. It is insulting and wrong on many levels, but to people unlike myself who aren’t in the trenches of this disease, CJD is still honestly “rare.” It has never been something I could make people care about in eight-second sound bites. Every patient suffers different symptoms and a different length of disease. Stigmas surround CJD. It’s not media-friendly.
I am having trouble some days getting people to care about blood cancers and my LLS fundraising — and everyone knows about cancer. How do I get them to care about something that is even harder to understand?
I am closer than ever to being able to answer this question…
There are some things I have hope for and some I do not. I say this because every couple months or so I get an email from a very hopeful family who thinks there is treatment, a cure, or something they can do for a loved one who has (somehow) been “diagnosed” with CJD. If you want to be hopeful, look for clinical trials in your city/state/country. For example, in the United States, we can search for clinical trials at the ClinicalTrials.gov website.
Do a search. Go ahead, I’ll wait.
Yeah…so two quinacrene studies? Thanks but no thanks. I thought we’d given up on that long ago…
There’s also a study from 2010… Well, it’s 2013 now. You get the idea. You’re going to have to be in the right city a the right time in order to get your loved one in on any clinical trials as they suffer from CJD. Then there’s the ethical question of prolonging their life — a.k.a their misery — through a clinical trial. I am not sure I would personally want mine prolonged in that fashion. Of course, the E200K in my family kills so quickly, I’m not sure patients like ours would get more than 2 months out of a trial at most. You never know. You could be the first person saved, right? Someone had to be the first to receive FDR’s polio cure, right?
So that’s the kind of “hope” we end up having.
When I say on here that I “have hope,” it’s hope for the next generation of my family. My generation may get lucky. You never know. But if you’re coming here with a relative who is currently suffering from CJD, they are dying. I am sorry. There’s not much modern medicine can do for them.
I joined a research study at UCSF. It might help someday. This is about all I can do at this time. But I felt, out of hope, that I had to try and offer myself up to be researched. UCSF is doing a great deal of research studies and clinical trials. If you are in or near or can somehow get to UCSF in San Francisco, California, then go for it.
Take a look here:
As you can see, there are a ton more clinical trials listed than the government website lists. (Ok, two more but at least they are current). Also, UCSF is on a budget. For instance, I paid my way out there and back last year to enroll in the study. I paid for all my travel expenses. I chose not to stay overnight at the hospital so I wouldn’t cost them more money. I really want the money they have to go towards researching my brain health, not towards putting me up for a night and feeding me hospital food. I spent that night drinking with friends instead. ;) No, they didn’t pay me to participate in the UCSF study.
Hope is the place to be. But you have to be realistic about it. I hope I can enter more research studies. I hope UCSF can find something useful out of what I have given so far, and will continue to give of myself in years to come. Medical research is slow and expensive. Be patient and be realistic, but never lose hope.
Research studies to join at the UCSF Memory & Aging Center:
There are six clinical trials listed right now at UCSF, all for Alzheimer’s Disease:
As you can see, there are currently no options for a patient with CJD to undergo a clinical trial in America that I personally know of right now. Maybe there are some I am unaware of at another research institution. Please tell me in the comments and give a link if you know of one at any time. (It is Sunday, April 7, 2013, so if you comment anytime now or years from now I will still see your comment).