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).
All this is for me is life with certain possibilities. In my last post, I touched on all the stuff I felt compelled to do with my life once I accepted the possibility of my mortality. That’s a 50/50 shot that I carry the genetic mutation. Even then, there’s no guarantee I will die of CJD. My paternal grandfather is still alive even though two out of three of his children have died of CJD. He is one of 14 children and only one of them died of CJD. So if you’re trying to make this a numbers game, good luck. If you want a guarantee of survival or death, good luck. Neither is promised. So I live life with the possibility that anything can happen here.
But just in case life is short, I take some risks. I drove in a blinding snowstorm the other morning because I didn’t want to miss work and be shut in for the day. I’m going to run a marathon, probably not the best choice for someone (allegedly) missing an ankle ligament. But what if my life is short? I don’t want to miss out! So I accept the possibilities and live life to the fullest.
There I go with that acceptance thing again. If you’re finding this blog and CJD runs in your family, or even if you just found out your loved one who died of CJD did carry a genetic mutation you never knew your family carried before (that’s who I was in 2004), I’m going to give you some advice that has worked for me. Let go. Release. You can’t control this. All you can control is your own personal choices, so make good ones. The answer to being able to reach acceptance and find peace in my life has been to live well and try every new thing that comes along. It’s simple and it’s enough.
So why does this post have a screen shot from “Scarface” at the top that says, “The World Is Yours?” I have this passion for running that not even 14.2 inches of snow in Wichita last week could kill. I am training for the San Diego Rock N’ Roll Marathon on June 2 for the Leukemia & Lymphoma Society’s Team In Training. I am honoring my friend April, who celebrates ten years of survival this year! This is an aspect of life I am taking very seriously. I am just so happy and grateful my friend is still here. A few of my teammates are honoring those they lost, some of those children.
I felt an outpouring of love well up in my heart as I ran yesterday. Maybe it was just the runner’s high. Another neighbor entered the gym and turned on the TV as she hopped on the treadmill next to mine. She turned on “Scarface,” walked for a half hour and took off, leaving the violent flick blaring on the TV. So for two hours of my indoor, 8-mile run, I had that movie to keep me company and combat some of the treadmill boredom.
I had a lot of time to think of others I have helped, not just April or the LLS. I’m on the board of the Kansas Writers Association. I help a friend of mine with his fundraisers for AIDS patients and will probably be joining his charity’s board soon too. I ticked off in my head all the charitable stuff I’ve done or any moment I made a difference in life. How a certain broadcast interview may have helped one young girl get off the streets. Attending a human trafficking conference. Yes, I’m a do gooder. I’m a research guinea pig for UCSF and proud of it. I’ll be happy to publicize a good cause or good work done by a friend. For instance, buy my friend Samantha’s books. They’re good. And she works her ass off.
I was thinking about all these people who have become a part of my life and how we are all trying to reach the same goal here. We all want to create a better world for the next person. That’s why we create non-profts in help each other out. We’re all here together to create new possibilities, not to accept things the way they are. So when I say ‘acceptance,’ I don’t mean you lay down and die.
I have accepted that the rest of my life, whether it’s 20 or 50 years, will be awesome. I’ve had over eight years since my mom’s death and really feel suddenly like I have perspective. I’ve accomplished a lot of what I set out to do and done some things I never dreamed of a decade ago. I gave myself permission to live. I’ve chosen to live in a place where things are possible and I don’t give up.
I got a nasty virus for two weeks and didn’t run at all. I got back to training this week for the marathon and had to settle for the treadmill instead of the road. Not even 14.2 inches of snow can keep me away from living my life — that means marathon training. I’m an insane person who decided to push it to eight miles yesterday, even though I probably should have done six and called it a day. But I don’t want to get behind on miles and miss out. This is my chance to run a marathon!
I’ve never seen “Scarface” all the way through. I just know it’s a gangster movie with the famous line of, “Say hello to my little friend!” So imagine me running these eight miles indoors and thinking of all this emotional stuff in my life, the level of determination I possess, listening to my favorite upbeat music, and thinking of how much my ass and feet hurt during miles six through eight. It took me 122 minutes and 40 seconds to make it to the eighth mile. Just as I got there, “Scarface” ended. The last scene of the movie ends with the camera on the indoor fountain with the globe in the middle and the pink neon letters that say, “The World Is Yours.”
It was a personally fitting moment for me. You don’t need to run eight miles to have this feeling. You don’t have to be a runner. Whatever challenge this life has given you, whatever seems impossible now that CJD has become a part of your life, know that it is not impossible. The world is yours, your life is yours. You must accept that CJD has come into your life, but you don’t have to let it beat you.
Sure, it may ultimately kill me someday. But it has not beat me. Not once.
Also: Pack up all your stuff and move to a city you’ve never even seen before. Take that job. Go run a few miles, hate it, do it again until you sign up for a marathon… Learn to cook everything. Become a human guinea pig. Fill an entire book with your bucket list. Spend time with kids. Spend time with old people. Spend time with “disadvantaged” people. (Personally, I think we’re all blessed, it’s just our perspective that is “disadvantaged.”) Take a bus ride in a big city. Repeat. (You have to get back, don’t you? Or do you…?) Make a playlist of every song you’ve ever loved wholeheartedly, who cares how cheesy it is? Buy a piece of original art to hang on a wall and admire, even if it’s just a reprint. Get a tattoo. Learn some modality of alternative healing so you can help yourself and others. Tell people what you need from them; then don’t be hurt if you find they can’t deliver. Forgive. Write a novel, even when you know what you’re starting with sucks and is out of order. Meditate. Do yoga. Get in contact with old friends. When others get mad at you for growing as they stay stuck, just release, let go, and know they’re just trying to reconcile two versions of you. Realize others will share some of your passion for…some of your passions. Read lots of books. Find beauty. Cure awkward moments with a sense of humor. Eat ice cream straight from the container at midnight in your underwear because you can’t sleep. Ignore advice. Take a walk on the Golden Gate Bridge. Go on a date with someone you never thought you’d go out with because they “aren’t your type” for whatever reason. (Unless you’re married or something like that). Adopt an animal. Win an award. Participate. Work for a boss you can prank now and then. Work for yourself. Buy a guitar for absolutely no reason one day out of the blue. Take every opportunity to dress up in a costume and act silly. Graduate from college. Be awesome at your job and make your company money.
But #1…do things that matter.
I just wrote all of the above for the people who wonder what the hell I’ve done in the past 8.5 years since I found out my family carries the E200K mutation for CJD. It doesn’t matter how you live, only that you do.
I started running last year and have really gotten into it. It didn’t even give me pause when I signed up to run the San Diego Rock N’ Roll Marathon last month. I’ve never even run a road race! But I plan to push my body and my running to new limits as a part of the Leukemia & Lymphoma Society’s Team In Training.
You can read the backstory on why this matters to me on my fundraising page here. Feel free to donate and share that link.
One of the ways in which CJD has changed my life is it has given me a strong desire to do some good while I am alive. Our lives must mean something. Funny how mortality makes us realize this, isn’t it? If you don’t like something, change it. I didn’t like seeing my friend suffer through cancer. So I’m about to raise $3,200 so someone else’s friend someday doesn’t have the same experience. It’s as simple as that.
Why else are we here if we don’t make this world a better place in any way we can? You may be facing a life of question marks like me. Will I get CJD like my mom did? Am I positive? Should I find out of I am positive or negative? What’s the point? Why care? Why not just live my life?
If you’re wondering how to sort all that out, give yourself something. Give yourself a purpose. Why are you here? What is your heart’s desire? What do you most want to do? Ask yourself some constructive questions like that. You’ll get somewhere. No pressure. Don’t force it. It will come to you.
If you just found out CJD runs in your family, I know it seems pointless. It’s not pointless. You have to find reasons to live. You have to find ways to make your life rich, however long that life may be. Will you live a rich and full life? Or do you give up?
Pick living a good life. Trust me, the answers will surprise you. I know, I’ve been there. I’m still there. I’ll always be there until we find the solutions to the CJD problem.
I could probably answer this question all day long. It may take a while. This may require a few blog posts! In answer to reader Lori, I will begin to attempt to answer this question.
If you’ve found this blog and you’re reading this, then you already understand there’s a very tough thing we all must do. We all must accept CJD. It’s happening to someone you love or you wouldn’t be reading this. You have to accept that it is happening. That is hard.
To take it a step further, I have had to accept that this runs in my family. This can happen to more of my relatives than it has already happened to. My mom in 2004 dying of CJD was really just the tip of the iceberg.
But once you reach acceptance, you are able to make peace with it. You have to find a way to actually live with this possibility in your life. This is what I am trying to do each day.
How has this changed my life?
It has changed me. It has changed the person I am and the outlook I have on life. In some ways, it has been for the better. I’ve lived a lot harder than I would have if I were just the average person my age who isn’t worrying about mortality yet. But there are drawbacks too. I’m not a planner. I don’t think years ahead. I don’t even think months ahead. I took my first real vacation in years just last year because I couldn’t bring myself to plan far enough ahead. Much of what I do is spontaneous, or I just go with the flow. This can be good or bad. I live in the moment but I am learning to plan ahead. Like I’m going to be here a while.
I also take some risks now and then. Why have fear when a I’ve accepted my possible mortality? (Again, I don’t know if I am positive or negative for the E200K gene). I’m tackling the bucket list. I got that tattoo. I took that vacation last year. I walked into a car lot one day and bought that brand new car. I bought that ridiculously expensive thing because I deserve it. There are days when I worry my DNA may be screwed. Those are the days for me when I have those extra shots of whiskey or go to that party when I’m tired and make that phone call to tell someone I love them. I have perspective.
Then there are days I know no one understands. I learned CJD ran in my family when I was 25 and single. I’m in my 30s now and single again. I am still at an age where people my age haven’t buried their parents. People my age haven’t talked about their wishes with their families. How does the life insurance money get divided? Who is my benefactor? What am I leaving behind to be cleaned up? In my home? Financially? Who can I trust with my affairs? This is the stuff I think about. Having a will. An advanced directive. I think if you’re my age, married, and with kids — you’ve thought about this stuff. You should have by now. I was thinking about it at 25.
A jaded perspective
It’s hard to freak out over a lot of things now. I see people get worked up over a loved one’s medical care in a hospital and think to myself, “At least you have a diagnosis, treatment and quality of life! Stop complaining and just enjoy that you can still have a conversation with that person and they can tell you what’s wrong!” Care and treatment for CJD patients has a long way to go. I helped facilitate my mother’s autopsy between Arizona, New Mexico, and Case Western in Ohio. So don’t tell me you’re down in the dumps over _______. I’ve been through worse. It may sound harsh. And I do certainly feel a lot of empathy for what others go through. It’s just that I’ve had some experiences because of CJD that the “non-CJD” people can’t relate to at all. I try to explain and people give me blank looks. So that feeling of being understood by my peers often just isn’t there.
I have had to realize and accept that I am different. My circumstances in life are different than most people face. I’ve had to cut through the fluff to figure out what really matters to me in life just in case my time here is short. What is the absolute bare minimum I’d like to get done in my time here? What would I regret not doing? I have to make every day count! I don’t like to stay home sick from work.
What’s most important in life?
People! People are the most important aspect of life. Who are your people? Your friends, your family? Are you close to them? Are you at peace with your relationships with them? Are you leaving them money when you die? Are they your priority while you’re alive? Are you filling your life with people who enrich it or those who drain you of energy?
These are the questions I ask myself.
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:
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. =)