Valentine's Day gift funds SCI research

Looking for a Valentine's gift? Please consider a visit to Whim. http://www.whimdesign.blogspot.com/

Not only is the Have a Heart bracelet pretty but 50% of the proceeds go to the Reeve-Irvine Research Center where scientists WILL cure paralysis.

Have a heart, buy a bracelet.

FDA Seeks Input Re: Human Clinical Testing

The FDA is accepting electronic comments regarding human clinical testing of stem cell therapies. LINK
I beg you to ask the FDA to do everything within their power to expedite stem cell therapies for compassionate use. Your comments must be posted by close of business on March 26, 2008. Following is my submission and below that is more background on the FDA request for input.

I use some acronyms and abbreviations that are common in the SCI and research community. I put a key at the end of my submission for those of you that are unfamiliar with the terms.

I say this without hyperbole; I am dying. The complications of my spinal cord injury are killing me. I have defied my doctors’ predictions no less than 9 times in the past 3 years. There will be a time in the not so distant future that I do not recover. I have no hope that existing therapies will change this.

I have a child, a beautiful boy, who lost his childhood to my SCI. No child should have that experience. I want to see how his life unfolds. I want to meet the man that he will become. I want to meet my future grandchildren. I want to wring as much life out of this broken body as I can. I am not alone.

Hundreds of thousands of people face terminal hopelessness. Mothers watch their babies struggle in vain for air as SMA-1 steadily suffocates them. People with ALS face the same horrifying fate. Death and despair do not have to win. Stem cell treatments ready for clinical trials may effectively treat these conditions. Should we not have the opportunity to find out?

I acknowledge there are risks. All of life has risks. I have educated myself on the science of stem cells. I have met with key researchers. I believe they have reached a point where it is time to test these treatments in humans. We who know the future our afflictions hold for us are ready to face the risks posed by these treatments. Please give us a chance for life.

Approve clinical trials for hESC. Do not force us to leave our country in search of hope. In foreign clinics we risk fraud, dubious quality of care and worse. We trust in our government to see that, as US citizens, we receive the best possible treatments available in the world. That should include the potential cures made possible by hESC therapies.

Before another dies. Before another is forced to learn the rhythm of communicating while breathing on a respirator. Before another parent faces the despair of their child’s helplessness. Please approve clinical trials with hESC therapies. Thank you.

###

SCI = spinal cord injury

SMA-1 = Spinal Muscular Atrophy 1- a condition that manifests in infants around age 3 months and the mortality rate at 12 months of age is 100%.

ALS = Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease) a fatal, progressive muscle-wasting disease.

hESC = Human embryonic stem cells

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FDA Seeks Advice Re: Human Clinical Testing http://www.fda.gov/OHRMS/DOCKETS/98fr/07n-0471-nm00001.pdf

The FDA’s Cellular, Tissue and Gene Therapies Advisory Committee will meet April 10 in Gaithersburg, Md., to discuss “scientific considerations for safety testing” of such therapies, according to a notice on the FDA’s Web site yesterday.

"There’s a recognition at the FDA that stem cells are getting closer, and there needs to be some sort of guidelines on how to handle safety,”

Executives at Geron and Advanced Cell said they plan to appear at the meeting. Geron has communicated extensively with FDA reviewers over the design of the first human trial using embryonic stem cells, partly to convince the agency that putting the cells into people won’t result in the growth of abnormal cell clusters called teratomas, Thomas Okarma, Geron’s chief executive officer, said in interviews with Bloomberg.

http://www.telegram.com/article/20071219/NEWS/712190338/1002/BUSINESS

My Guilty Pleasures

Every Sunday without fail, I log on and read PostSecret I love the range and the creativity of the secrets. They remind me that everyone is fighting a great battle, some less visible than others.

The Colbert Report will be back on the ert soon. I miss my daily dose of truthiness. The Daily Show and late-night tv will be back too.

Hope

Hope. I haven’t allowed a lot of that lately. I find that spinal cord injury is best managed by keeping one’s thoughts firmly in check. Not a lot of reminiscing of life pre-injury, not a lot of wishing or dreaming about how different life would be if I were whole. At the same time, I do all I can to maintain my body so that if or when a cure comes, I’ll be eligible to participate. It’s this crazy balancing act of will, hope, acceptance and denial. I accept the dichotomy.

I expect something to come along that will result in functional gains in my lifetime. I just don’t pin a lot of hope on what that means. Will I be able to kick this chair to the curb? Will I be able to stand up and see what’s on the top shelf in the cupboard or at the grocery? Will I gain function that will improve my quality of life and perhaps even my longevity? I try to stay disciplined and not speculate too much.

When I slip, there is inevitably a price to be paid for allowing too much hope. Some experience will cruelly frame the limits of my current situation. An infection will fester and land me back in the hospital near-death. These episodes are followed by moments of deep despair and crushing depression. Better to stay rigidly neutral rather than ride this rollercoaster.

Then, Tucson happened and nothing will be the same.

Four days ago I crashed a private presentation by Hans Keirstead in Tucson. The hosts were very kind and welcoming. I was one of two people there in chairs and I had a chance prior to the presentation to talk to many of the members about what it meant to live with a spinal cord injury.

Meeting Hans Keirstead was the equivalent of meeting my favorite rock star. I was breathless. He is young, handsome and very charming. I saw no trace of the stereotypical stuffy academic in him. Before the presentation, he spotted me off in my little corner trying to be invisible; “Hi, I’m Hans” he smiled. I introduced myself and we chatted a bit. I told him the quick version of my attendance. The meeting was called to order and I found Hans sitting next to me as the hosts began their meeting and quickly attended to some other matters before the main presentation. The president of the organization invited every one to stand for the Pledge of Allegiance. Afterward, Hans leaned over and whispered conspiratorially, “I’m Canadian” I whispered back “that’s ok, I didn’t stand.” We shared a quiet laugh and then he was called to the stage.

In the dimmed auditorium I sat rapt as Hans lead us slide by slide through the complexities of his work. His ability to speak in every-day terms and retain the passion and scope of his work made his presentation all the more compelling. Time flew. Several times, I had to remind myself to breathe. Slide-by-slide, hope took root within me. It took all the discipline within me not to grill him on every slide for more details. I listened as he talked about how his work had progressed from acutes to chronics, how human clinical trials in a treatment for chronics were due to begin in months and how his lab was able to create the one thing my body cannot; motor neurons. I almost cried out when he showed an mpeg of muscle, grown from those laboratory motor neurons fire. Real, working muscle tissue! As if he could hear my mind screaming, he played the mpeg again. Hope fully germinated.

After the Q&A, I waited my turn to say my goodbyes. My host approached and bent down on one knee to speak to me eye-to-eye. “Would you like to join us for lunch?” My heart did the little dance of joy my paralyzed body could not. “Yes, please” I croaked. Thus, I found myself sitting next to Hans Keirstead as he talked about his work and his life. The more I learned about the man, the more confident I became that this was the researcher to back.

He talked a bit about his recent marriage, surfing, his love of flying helicopters and his time at Cambridge as the youngest person in his program in 200 years. He also talked about knowing at the age of 11 or 12 that he wanted to fix the brain and the spinal cord. Inside of Hans lives a desire to end the suffering of the many afflicted with neurological disorders. Conditions as diverse as SCI, ALS, MS, Parkinson’s and Alzheimer’s share commonalities that mean what works for one impacts other conditions as well. He runs an amazingly prolific lab. If he were not a stem cell researcher, I could easily see him as a billionaire internet entrepreneur.

I am not one prone to spiritual hyperbole. Yet, hearing Hans speak, looking into him, I feel that this man is destined to cure paralysis. Any chance that I can remain passive about the promise of stem cell research is gone. I’ve drank the Kool-aid and I am a believer; in the science and the scientist.

Lunch ended far too soon for me and it was time to part. I said my goodbyes to new friends with hugs and handshakes. Then I was in my van alone with my thoughts. The totality of the day’s events settled in and I began to sob from pure joy. On the drive home I allowed my mind to wander. Will I walk again? Maybe just stand eye-to-eye with another person? Would I hike Piestewa Peak again? Maybe one day I will feel sun and salt water on my legs and wiggle my toes in the sand. Maybe I’ll be able to physically express the joy my heart and spirit can barely contain. Maybe one day soon.

In less than 2 weeks I have the honor of visiting Hans’ lab and learning even more about his work, its progress and implications. I’ll share more then.

Just Pretend You're Dead

This advice has been proffered for two vastly different circumstances.

First, the dreaded grizzly bear attack. I first heard this when I was 6 or 7 years old and preparing for my first camping trip. “Pretend you’re dead” an older cousin counseled sagely. I of course listened breathlessly to my cousin’s crisis cookbook on dealing with everything from the boogie man to that grizzly; wisdom meant to save my life in the wilds of central Ohio. At the time, this little Buckeye girl had no idea that the odds were better that I’d meet the boogie man in those Ohio fields.

I’ve moved west. Black bears are more common in my part of the country than grizzlies although their numbers are dwindling. Now, in the unlikely event that I ever do find myself facing an imminent bear attack, I have that childhood strategy to rely on; curl up on the ground in a tight little ball to protect my mushy parts and lay motionless. The thinking goes that the bear will believe you to be dead and bears are not interested in eating dead food. I don’t know if it’s true or not and I hope to never find out.

The second situation in which I was advised to consider this strategy is the dreaded public “invol.” This is one of those nasty little spinal cord injury secrets that we tend to share only with those that know the secret handshake and password to the club. “Invol” is short hand for involuntary bowel movement. I am a T-10 paraplegic. That means that from my mid-chest down I have no sensation or voluntary control. Code for I can’t tell when I have to ‘go.’

The general public believes that the worst part about having a SCI is that we can’t walk. On my list of all the individual attributes of my SCI that I would change if I could, walking barely makes the top 10. Spots one and two are owned by “one” and “two;” return of voluntary bladder and bowel function. I pee through a tube (a catheter) on a rigid schedule. Pooping is an ugly ritual that I leave to your imagination. However, as the saying goes, “shit happens.” Usually it happens at the most inopportune time. Fear of “going” in public keeps a number of people with neurological injuries locked safely away at home.

It was a frank discussion with another person with a spinal cord injury where the sage advice of my childhood was resurrected. We exchanged tips and stories of life in a chair when the subject turned to the dreaded invol. I shared my one and only story and he told me his. His was more public and contained a higher embarrassment factor than mine. Then, in that way that all the more poignant because it is such a casually spoken bald truth, he said to me “I’ve learned how to deal with it though.” He winked and smiled; “just pretend you’re dead.” We laughed but it stuck with me. This handsome young man, doctor-to-be struck by fate and now learning some of life’s more bitter lessons.

“Just pretend you’re dead.” Maybe spinal cord injury and grizzly bear attacks have more in common than I’d first realized. Both are sudden, unexpected and life altering. If survived, both leave a lot of room for second-guessing and “what if’s” Both tear through any illusion that life is fair, orderly and predictable. I suspect too that there may be some commonality in the area of public invol.

Coming out

The day-to-day trials of spinal cord injury are infinate and embarrassing. Most people with SCI never speak about those details except among ourselves. I have been one of them. In an effort to maintain what little is left of my dignity, I do not speak of these things publicly. And therein lies the rub. If we don't voice these indignities then we remain the "brave little angels" in the wheelchairs.

I may regret this later but I have decided to share those details in the hopes that a greater understanding of what we go through will help move others to act politically and finanically to help end paralysis. To that end, I share the following post from my spinal cord injury group. The days following this post are the closest I've come to suicide post-injury.

I have had a commitment on my calendar for about a month to go and speak at a local high school. Even though I’m still sick, I figure I can pull it together long enough to give a rousing speech. I love doing these events and I think I’m pretty good at them too.

I get there, still feeling a little weak but I know that adrenaline will carry me through the speech. I went to transfer from the drivers seat to my wheelchair and boffed the transfer and go down. I’m all crumpled up and stuck in the back of my van so I dial 911.

It’s not a total disaster yet, I’m partially bearing my weight with my arms but when they give, I’ll fall the rest of the way in this very odd position and break more bones. I get the most annoying dispatcher in the universe. I try to explain everything to her. I asked her to please call inside the school and get someone to come out and help me stay up. This is a huge high school.

Pretty soon the campus cop shows up and the principal and vice principal in a golf cart. They all sit there and look at me. I yell at them to come help me please, I’m falling, I’m breaking my legs, please just lift me under my arms and keep me from falling. “We’re not allowed to touch you.” I’m crying, I scream in frustration, pain, fear and rage.

Finally, EMS appears. They lift me into my driver’s seat and inspect me. Not too deformed. Do I want to go to the hospital? One of the guys says, “At the very least, we should check your colostomy.” I don’t have a colostomy. But, I did have an invol all over the back the van.

Total humiliation in front of 7 men. I say the principal. “I’m supposed to be your speaker today, I’m sorry this will have to be rescheduled.” So much for a professional encounter…

The EMS guys don’t want to let me go off myself. So they followed me home, went in the house and got my shower chair and lifted me into that and helped me into the house. I also missed my interview. I thought I had a job. I was going to show up so confident and together, instead I can’t go because I pooped my pants. I called my PCA and begged her to come back and help me clean up the van and such.

Don’t know yet what’s broken but I've reached a point in my bone density that every fall results in a fracture of something, if only a toe. I’ll wait until there’s enough swelling and bruising to pinpoint it. Otherwise I get x-rays from T-10 to my toes. Three times in the last year is enough radation for one body thank you. I have huge abrasions on my back and butt and hip that I have to watch until they heal and it looks like I have an apple sized bruise on my hip.

Why is it that once you’re down, everything piles on? My son still hasn’t bothered to call to see if I’m still alive. Right now, I want to go to sleep and just peacefully pass on. I’m tired of fighting. I’m tired of the everyday humiliations and I’m tired of hurting and being sick. I hate being alone. Right now I never want to leave my bed again.

Wasted an up-do on this day damn it! I’m going to park myself in a safe place and drink!

My Anniversary

Today is my anniversary. Four years ago today, my life completely changed. November 15, 2003, David and I moved in together and began our fairytale life. Oh sure, there was a handsome prince, beds of roses, moonlight dancing. There were dragons too, and evil trolls. We had financial struggles as David dealt with the fallout of an extremely acrimonious divorce. We had relationship struggles as our children dealt with the implications of our relationship. But, mostly it was good. No; great.

That magic year cumulated with a dream trip to Fiji. Away from the cacophony of the day-to-day we made commitments. First, to each other; I finally agreed to marry David. Next to our futures. We both decided to earn our doctorates; David’s in toxicology, mine in Oriental Medicine.

Three years ago today, my life completely changed yet again. November 15, 2004 started with the usual hike up Piestewa Peak to watch the sunrise. Then, our first day back to work following our Fiji trip. It was a whirlwind day of catching up and dreamy recollections of that idyll in Fiji. If coming down that mountain that morning I had known how much life would change just 12 hours later, I would have lingered.

9:20 PM November 15, 2004, we closed up shop and headed out for a quick dinner at our favorite little Mexican joint. We never made it home. At 9:46 PM, 5 bullets ripped through our lives and when the smoke cleared we learned those bullets had also ripped through David’s brain and my spinal cord. I guess you can also say that November 15th is our birthday since both of us “coded” that night.

The intervening three years from there to here have been insane. David has learned to function in a world of total darkness and he copes with incapacitating pain on a daily basis. My first big victory was learning to sit upright without assistance. Since then I’ve spent a lot of time learning how to cope with gravity in a new way. I struggle with life-threatening infections on a regular basis.

Since our injury, we have learned much about the character of people. There are those who cruelly took advantage of our tragedy and those who found our situation too sad or too challenging and chose to leave us behind. But mostly there have been angels who have given of themselves to comfort and support us. I am grateful to each and every one of you for all the large and small ways you have brought joy and comfort into our lives.

In the three years since our injuries, I have learned much about the science of neurological injuries. In these three years science has learned a lot about the science of neurological injuries too. What they’ve learned is that both the brain and the spinal cord are capable of regeneration under the right circumstances. This is huge, just like there was once a belief that the world was flat. Doctors now talk about when they will be able to heal our injuries instead of “if.”

The science exists. Clinical trials are beginning here in the US and throughout the world. Very soon, I will have the honor of meeting with one of the top researchers in the US to see first-hand how his work has progressed and learn more about these exciting advances. I’m eager to tell you all about after my trip.

Year-by-year, life goes on. November 15th will come again next year and the next… That magic day when scientists announce the “cure” for my spinal cord injury and David’s brain injury moves closer and closer. The biggest hurtle to this cure is money. The NIH budget has been decimated by war spending and other governmental priorities. Thus, those of us with chronic conditions from SCI to cancer to diabetes and MS find that we must fund our own cures.

So, on this November 15th, I would like to make lemonade from these lemons that have been handed to us. Once again, I need your help to do so. Will you help us fund these cures? Will you commit to raising one thousand dollars before the next anniversary of my injury? It’s less than $20 a week. Your thousand, along with mine and that person’s and all the others will give the researchers the boost they need.

I am asking you to have a car wash, a bake sale, a whatever-a-thon. Pass the hat at your Super Bowl party. Put a donation jar at your favorite hangout. Be creative and have fun with it.

Please.

The funds you collect will be donated electronically and will go directly to the researchers. No handling fees or administration costs.

I am also asking for your public commitment to raising these funds. Please respond here and let me know that you are willing to help. I know there are a ton a questions you’ll want answered. In the coming weeks, I will supply a link for your donations and some information about the research.

Thank you for your love and support.

Jen