For those in need of a serious dose of hope

[ActiveMSers]

I recently took part in an NIH-sponsored clinical trial for my aggressive multiple sclerosis. The risky treatment required over a month of testing, three weeks in the hospital, and intensive rehabilitation. But the end result could be groundbreaking.

I made a powerful 15-minute video of the entire experience, highlighting the importance of MS research—and that one day there will be a cure. It concludes with images of hope: fellow MSers who are doing whatever they can to stay active. These individuals motivate me. With this presentation I hope to motivate you.

The video was first shown at a National MS Society event to a standing ovation. The YouTube link is in my profile. Enjoy,

Dave Bexfield, ActiveMSers.org

p.s. For those interested, you can also track my progress at ActiveMSers.org, the nonprofit I established to inspire people with the disease to stay active physically, socially, and intellectually.

[cocogirl]

Thank you Dave for your willingness to help us all!

[CrazyCatLady]

All I can say it THANK YOU! Watching that video made me cry....with happiness. I was just dx'd this past June....WE have got to find a cure.

You are The Bomb Dave!

[tommylee]

Great video Dave!

So how do you feel now?

Your story seems to have some parallels to mine, but I went a different route to get there.

I was Dx in 1998 after a very bad spell left me with major physical problems.
(difficulty, walking, seeing,could not write my name.....like a full black-out drunk accept no euphoria only a pounding head ache.)

After starting on Avonex and taking about 6 weeks off work some of my faculties came back.
I went back to work and slowly my body would start to fail me as I became run down. It was a steady downward spiral.
In 2000 I had to quit my job because I was no longer capable of doing it and I was only getting worse.

I continued with Avonex and started taking real good care of myself.
Serious diet changes, exercise, and lots of PT.
The PT program I followed was actually made for stroke victoms but it seemed to work pretty well for me.

After 10 years of focused effort I can now walk and trot/run some, ride a bicycle, get down a mountain on a snowboard and moto to some level.
The problem is none of it is at 100%. (50% feels closer)
Also I still feel real crappy most of the time. It take lots of motivation to keep striving to get better and I seem to have plataued at this level for a couple of years.
Strength is pretty good but everything must be done visually. (I can move but I don't feel much./ life is sort of like an "out of body experiance")

When you say the strength has come back to your legs; does that include feeling and coordination? Have they come back?

I often wonder how much the Avonex helps. I know it makes me feel like poop for 18-36 hrs a week and I sometimes skip my shot because I don't want to feel sicker than I already do. But that is only a couple of times a year.

My point is ; I feel better now than I did 10 years ago. But I am a long way from feeling normal.
Are you starting to feel normal again?
Or are you like me? I can function most of the time but I feel like a stranger in my own body. Its all very detatched.

Thanks for all the information! I would love to stop the Avonex.

[phoebe.]

Wow! Thank you Dave!

That video made me laugh, cry, and filled me with hope.

phoebe.

[bluegiraffe]

dave,
great video - good to hear how much it has helped you ! was also inspired by your PT focus in such a short time to enter the trial. can you share what specifically was done to allow you to go from not walking, to walker, to forearm and then no aids ? what did your sister guide you thru to make this happen ?

i am currently in the state (over the past year) of going from 1 forearm, walker and now wheelchair with no ability to stand or walk at all due to severe spasms/contractions and spasticity in my legs. added now with weakness and atrophy. trying pt at home was not much help due to the spasms restricting what she could do with me.
rehab at johns hopkins wants me to be able to stand (and gain some weight) before i can start.

if you can please let me know what types of exercises you went through and maybe medications that got you able to start in the trial.

also - good to see the ending with photos of your .org - everyone looks to be in very good shape which surprised and delighted me at the same time. i do believe moving is a big part of staying better, i'm still not convinced that everyone can do that no matter how hard they try (maybe part of my current mindset).

thanks - and great video !

[jazzgirl]

EXCELLENT video, Dave! Stem cell transplants scare me, but if one gave me back even 1/10th of what I've lost, I'd go for it! (You're hysterical, BTW...LOVE your humor!).

Thanks for taking that plunge for us all, Dave!!

[REG53]

Dave great video! Thank you!

Awesome, thank you so much for sharing.

[tejokid]

You da man, Dave! I'm sending the video link to everybody I know, including my brother who lives in your home town. Muchisimas gracias.

[ActiveMSers]

Thanks for all the nice comments (and for spreading the word)! My weekend is super busy, but I'll get to some of your Qs on Monday. In the meantime, lots are answered on my activemsers.org website (in the forums section).

-Dave

[fishead]

Dave,
A wonderful and powerful video. Thank you for sharing with us all, who need to know there truly IS hope!!!!!!!!!!!!

Namaste,
LaTish

[ActiveMSers]

This is the post I made earlier this month on my activemsers.org website. It's pretty detailed, but does follow up on the video, which was done four months post transplant....

Official Month 6 Update

Before I detail the results of my autologous (own) stem cell transplant at month six, I want to make a few things clear: 1) the purpose of HALT-MS is to stop disease progression, not reverse damage, 2) my experience may not be representative of all study participants, 3) HALT-MS included two major components: stem cell transplant and immune system ablation, meaning that one aspect or both could be responsible for my gains, and 4) MS is a disease that is unpredictable, so my gains could also, in theory, just be natural remitting. Heck, that is why this is a clinical trial, not gospel. Okay, that said, here's the latest. Sorry it's a bit long but I have lots to cover.

Disease activity. My most recent MRI showed no new or enhancing lesions. I have had no relapses (after having several relapses in the nine months prior to the SCT). Interestingly, my brain MRI at month two did show some activity, but that likely occurred in the MRI-free window prior to the treatment. I'm glad they didn't tell me until now or I would have been freaked.

Walking ability. This disease gimped me up pretty good after a January relapse. Prior to treatment, I could barely eke out 100 meters unaided. Post treatment I have done as much as 500 meters. For the official test, I logged 235 meters, still a big improvement. (It should be noted that my rehab was interrupted for a couple months with a broken leg.) My walking speed, tested over 25 feet, has also increased substantially. Currently it is about 5.5 seconds. Since I don't trust my balance (see broken leg), I still use my walker in the house and usually my forearm crutches when I'm out and about.

Dexterity. Again, there was a noticeable improvement in the "peg" test. I was in the 27 second range, better than the 33+ second range pre SCT. My handwriting, which had fallen off the cliff, is vastly better. I can write again and my signature is normal messy instead of an X.

Cognitive. Tested with the PASAT (basically oral math), I improved markedly. Even though I aced my math SATs, I've never gotten 100 percent in this relatively easy test. I missed six question (still makes me mad), but again that beat out the pre SCT of over 10 misses. And on a personal note, the quick-thinking jokes that used to come so easy to me are mostly back. I feel sorta witty again!

Fatigue. I'm a strange bird in this department. Other than a couple weeks of feeling sluggish, there's been zero. But I had almost no fatigue before the SCT, either (except for during relapses when it is crushing).

Lower Body Strength. This I did on my own and the results have been startling. Lower body strength increased more than 100% when compared to baseline. Calf, thigh, hamstring, you name it. In fact, tests that were hard immediately after my relapse, and modestly challenging pre SCT, are now too easy for me to gauge recovery more accurately than "better than 100%." I can now stand to brush my teeth, make coffee, cut veggies, mix cocktails, and shower. These were all mandatory sit jobs pre SCT.

Upper Body Strength. I didn't lose much strength due to the relapse, so prior to the SCT my baseline was pretty high. Even so, at month two I was up maybe 10%. But in a test yesterday, the gains were significant to the pre-SCT me: 25-50% across the board. Chest, biceps, shoulders, back, forearms... all were up.

Vision. When I get overheated, it used to get wonky. It still does, but recovery is much faster and hot foods don't trigger it as much, either.

Bladder. Urgency is down. Retention has decreased. I can now sleep through the night without having to get up two or three times.

Numbness. I've had this problem in spades. I'm basically fuzzy neck down. Pre transplant I couldn't tell where my feet were when I was lying in bed on my side. Was my foot on top of the other foot? In front? Behind? Now I know.

Overall. The median EDSS change for the study is zero (from early data only), but I have lost a half point, dropping from a 5.5 to a 5.0. If I had walked 500 meters, it may have dropped me to a 4.0. (For the record, a fellow study participant had a loss of 2.5 points I believe, which is super cool.) To my knowledge, no one in the 24 has seen EDSS levels go up and MRIs have been clean for the most part.

My next battery of tests will be at the one year mark, at which time I'll start to get immunizations. Also, although I am officially past the riskiest part of the SCT, I will continue to take both an anti-viral and antibiotic for the next six months.

So to sum up: so far so good! Every department has seen improvement (including, ahem, that department only my wife is privy to). I'll post more about further gains and any speed bumps as the months tick by on ActiveMSers.org.

[ewizabeth]

You're awesome Dave!! It's people like you that inspire me to keep on moving. Keep up the good work!

[tommylee]

Numbness. I've had this problem in spades. I'm basically fuzzy neck down. Pre transplant I couldn't tell where my feet were when I was lying in bed on my side. Was my foot on top of the other foot? In front? Behind? Now I know.

Thank's Dave!
That is the question I was getting at.

I can now walk and move pretty well but the lights better be on and I have to watch where and how I step. Without looking I don't know where my feet are.
Hands are not so great either but I can throw and catch a ball.
I do everything visually. Nothing flows naturally. Every movement is forced and has to be thought out.
I am greatly interested in any treatment that may restore the sense of feeling and proximity to my body.
I am still numb from the top of my head to the bottoms of my feet.
I am greatful for any report on progress or set-backs you have time to give.

Thank you for your story and encouragment.
You do a very good job of explaining what is happening to you.

Praying for your continued recovery.- t