It is nice to finally be off that bumpy road

Well it’s been one year since transplant in Athens.  I think after I returned home I was saying to myself……”What in the hell did I just do?” 

I was definitely pretty weak and in no shape to immediately return to work. Matter a fact…..It took 4 months of hard rehab and then I was still pretty weak when I returned to work in February 2010.  How these people do it (return to work right away) I do not know.  I guess everybody is different.  

It’s been awhile since my last update and I apologise.  I have been working a ton.  In the last 40 days I have only had 2 days off.  Pretty much worked all of July as well. 

I’ve been feeling very strong. Even w/ all the working I’ve been doing, I always try to get a good hour to 1.5 hour…workout in at home.  Started lifting weights again and then I’ll finish on the elliptical for 20-25 minutes that same day. 

(Yes…….my life is that boring right now…..Work, exercise, sleep, eat…..hang with family………….Goto work…and do it all over again…….day after day……. 

I have not been to “Lokomat” training sine June.  I plan on returning in October providing I can find some funds.  I think I will do alright when I return as I feel with every month that has gone by…….I seem to be getting stronger. 

I know the CCSVI is all the rage right now in the MS community and I’ve been following it a little bit.  Not as much as I could be only because I’m so caught up in my own progress, getting stronger and uping the resistance in my training schedual.  I still feel like things are slowly getting better. Any free time I have right now seems to be on getting my financial house in order and submitting insurance claims.  So sorry bout the boring report. 

I sent an email off to professor Slavin the other day (Aug. 30, 2010) and here is that exchange: 

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Dear Professor Slavin,
 
A little over 11 months since the MSC procedure….all is well….and I could not be happier.
 
This last weekend I did not work. Before that, I had worked 26 days in a row.  I used to work a lot of overtime to make extra money for the family up until the summer of 2008.  Then,…because of the MS fatigue….I was not strong enough to work weekend overtime and used my weekends to rest up for the next work week.  I missed a lot work time to MS fatigue in 2009. The Israel and then Athens trips took a lot out of me as well… last year.
 
Hindsight…I wish I could have seen more of those beautiful countries……But I was there for MSC and didn’t have a lot of energy for sightseeing.
 
Anyway….hopefully those days are behind me as I am much, much stronger now and getting stronger by the month. I’ve gained 15 pounds (muscle mass) and I now work all the weekend overtime I want.  I still have good energy after work to exercise.  I even started to lift weights again.
 
Unfortunately I have had to take a break from my “Lokomat” (gait/re-education) machine due to the cost involved.  Since my return from Athens I have used the “Lokomat” machine 110 times (between 40-50min sessions).  At $160.00/visit, you can see why I had to stop.  I have been fighting w/ my insurance company to help with some of the cost…..but so far I have got nothing out of them.  Once I get some more money…..I hope to get back to “Lokomat” training, but for now……I’m still exercising at home just about everyday and am staying strong.
 
A lot of people who I talk to on the internet, which have gone through your MSC procedure, all comment on the same thing.
 
We are all grateful for the lessened MS fatigue and everyone I talked too is so grateful to have that quality of their life back.
 
I went to a fundraising event this last weekend and ran into Dr. Jerry Nepom. I told him of how happy I was to have had the procedure done.  He again asked about the published work and I assured him that it was out there.  I have read the report but seemed to have misplaced the link on my internet browser.  Could you pass it along to me again?
 
Anything new on the horizon with your work in regards to MSC or something I may be interested in?  I know you have my cells just sitting around…..I wouldn’t mind doing this all again if you think it would be to my benefit. Of course, I would need some time to gather some money together. I think I am still making slow progress…..with the empathise on “slow”. Definitely I am much stronger than last year and I seem to be dealing with the heat better.  I even sweat now when I do my cardio exercise. Haven’t done that in a while.
 
Hope all is well with you and everyone I met at CTCI.  Say Hi to them for me.  Thank them for their hard work.
Thank you Sir as well.
Be Well
Todd Small 

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His response: 

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Dear Mr. Small, 

Thanks for your kind words. Attached please find some of our publications on the topic. 

As for the future, please note the following:
 
We have gained a lot of experience treating patients with multiple sclerosis with bone marrow derived mesenchymal stromal cells (MSC) and now also using adipose tissue derived MSCs which can be prepared from liposuction. Again, some patients benefit a lot while others do not. Rarely, patients claim disease progression but no complications thus far from the procedure itself.  When patients benefit, which seems to be the case in about 60% of cases – we know we have done some good. When patients do not report any obvious benefit, we do not know if this means failure or merely slowing or stopping the disease process. Only future will tell.
 
As you may know, we are constantly pioneering new procedures for patients with MS and other neurological diseases as well. For your information, we are making continuous progress and recently developed new future methods to improve the outcome. 

In the laboratory, we can now trans-differentiate bone marrow and adipose tissue derived mesenchymal stromal stem cells to neural stem cells, motor neurons, dopaminergic neurons, astrocytes and oligodendrocytes that can produce myelin, and therefore we believe it may be possible to use such methods to induce re-myelination in patients with multiple sclerosis and like this improve the outcome using cell therapy.

We need to do animal studies to confirm the efficacy of out new patented procedure before we can get approval to apply our new methods clinically at the patient’s bedside. This is why we always keep frozen cells in our freezers, to be able to come back and possibly provide more effective treatment in the future.

Interestingly, adipose tissue derived mesenchymal stromal stem cells seem to develop much faster and much nicer as compared with bone marrow derived stem cells but we do not yet know which source of MSCs is more effective clinically.
 
In summary, what we can suggest now is one of the following:
 
–      Try treatment with adipose tissue derived mesenchymal stromal stem cells (MSC) which can be prepared from liposuction which in the laboratory seem to be most effective in transforming into neural stem cells and other cell types of the central nervous system although no one knows which MSCs are better, bone marrow or adipose tissue derived, yet getting similar yet different type of MSCs may provide another chance in case such cells are clinically more effective.
–      Do nothing now and wait until we finish investigating our new procedures in animal models and if such experiments will show benefit, get treatment using your own bone marrow cells we keep for future procedures, using MSCs pretreated by our new biotechnology.
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Shimon Slavin, M.D.
Professor of Medicine
Scientific & Medical Director
The International Center for Cell Therapy & Cancer Immunotherapy (CTCI) 

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So there you go………..I’m feeling strong and am back to my old ways………cheating sleep,  working out hard and still………ALWAYS………tring to wriggle free from the confines of MS. 

Not cured…….but very stable…….HAPPY……..PRODUCTIVE…….and thankful for family and friends support and progressive science. 

Be Well, 

Todd 

******** Note: I had my 52nd dose of Tysabri on Teusday……I’ve enrolled in a new blood study that pertains to the J.C. virus.  I’ll be updating on that soon as I hear the results from Dr. Kita in about 3 more weeks.

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