December 2009


So how does it work??????

 As things start to improve and it feels as though nerve communication to the legs is starting to wake up…………..  

I get asked the questions that I… of all people… are the least qualified to answer…..but at the same time…..convinced everyone around me w/in earshot that this stem cell procedure was going to work earlier this year.  

People ask me:  

“So how does it work again?”

Honestly….it worked, so…of coarse……  

 I forgot the answers….LOL

So…..the last few days I had some time to review my notes while resting between workouts.  I went back through my research and found the promise of Myelin re-generation. I ran into terms like: Axon, Neuron, Dendrite, Nucleus, Soma, Node, Totipotent, Pluripotent, Multipotent, Unipotent, Progenator cells, Autologous,  Embryonic, Blood cord, Blastocysts…… on… and on….and on we could go. 

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I’ve mentioned many times of how we are behind in stem cell research.  And a few days ago I ran into this:  

Link:  

http://www.freepatentsonline.com/6673606.pdf  

A U.S. Patent dated January of 2004 for: “Therapeutic uses for MSC’s” 

So what happened?????…….Why not here?…..Were there trials? 

Dunno?????????

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Anyhoo…….I emailed the Professor the other day and asked him the following: 

 Dear Professor Slavin, 

Can Mesenchymal Stromal Cells be the base foundation for Oligodendrocytes?
 
Has this been proven?
 
I think we covered this in Tel-Aviv but someone asked me the other day and I encountered the typical non-educated brain lapse.
 
And if so are Oligodendrocytes the foundation of Myelin repair?
 
Thanks and be well
Todd 

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His response: 

Dear Todd, 

Indeed, oligodendrocytes are the cells we need for repair of myelin.
Indeed, we found that MSCs can be differentiated into oligodendrocytes.  The new method to accomplish such transdifferentiation is now being filed by us as a new patent. 

Slavin 

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Wiki time: 

http://en.wikipedia.org/wiki/Oligodendrocyte 

“A single oligodendrocyte can extend its processes to 50 axons, wrapping around approximately 1 mm of myelin sheath around each axon; ” 

And here is a good drawing of a Neuron to see the Myelin surrounding axons (you’ll need to scroll down a bit) 

http://en.wikipedia.org/wiki/Neuron 

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So there you go…….It looks as though they are doing stuff a little different in that lab over in Israel….compared to the Protocol listed (U.S. patent link) above.

What is different?…….

….that…..

……is probably the billion dollar question. 

Be Well 

Todd  

   

To Friends and Family: Have a prosperous 2010 and the Small Family Thanks you for your support in 2009.

Another Great Update:

Things (nerves) are starting to turn on........and its pretty cool.....

The communication has started.   It started early last week.

It all started late 1:00a Wednesday night (morning):

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“Hey honey”……..”you got a minute?”

“What!!!???”………….waking up…she’s a little startled…… 

“Check this out”………”I can raise my leg”……”and bring my knee up towards my chest”……….I say (my bad left leg) 

“IT’S WORKING!!!!!”……………………she says 

“I told you!!!”………..she usually sees the same, old tired me.

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I’ve been having “spasms” in my hip flexors the last couple of weeks…..periodoically throughout the day.  A little discomforting to say the least.  I will then immediately break into a stretch that looks something like this: 

Hip Flexor Stretch

 And then…..after a little rest…..I have good control to raise my leg (knee up).  Muscle control that I have not had for years.  Very Exciting. 

Julie told me… once I started having the spasms last week….:

“Maybe things are starting to work?”…….she says

As usual……she was right.

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Back on November 7th….I listed some improvements post transplant.Let’s revisit what I wrote then……I will add my current thoughts in RED as of 12/26/09

Things keep on rolling........

Post Stem Cell improvements:

Less fatigue since transplant – sustained – Now…What Fatigue? I work out and run Kids everyday 

Improved left arm circulation – sustained – Now…circulation is still sustained and my once destroyed nails on my left hand are growing out nicely.

A continually improving gait – sustained – Now…thoughts of using the wheelchair for the longer distances is slowly diminishing and the wheelchair is starting to collect dust in the trunk of my car.

Improved communication with leg/core muscles – sustained – Now…so much improvement in this area…..I’m very excited….and will continue to try to go into as much detail about this as possible in future posts.

Establishing some sort of Knee flexion. (Both legs) – Now….still very slow progress here….communication w/ my hamstrings in both legs will probably be the last piece of the puzzle.  I have had moments…..but still nothing on a consistent basis.  Soon…I hope.

I’ve have also had the energy to add some more work to my work-out schedule. – Now – I continue to add more and more work load as I continue to get stronger week by week.

Lokomat is still three days a week. MWF for one hour followed by core training w/ personal trainer. – Now – “Lokomat” five days a week. I think I will up this schedule to seven sessions a week in January (2X/1 hour sessions on Teus. and Thurs. – AM/PM) and swim/walk will then be 4X’s/wk. (MWF,Sat.) 

I’ve also now added swimming on my off days: Tuesday, Thursday. Saturdays for 1 hour. – Now – I am still currently w/ this schedule.

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Each Day….something new happens……

The workouts are addicting in the fact that I’m excited to go in and see what’s going to happen.  I’m back to taking a little nap in the afternoon.  I have pushed that hard in the morning session. New evelopes are openning. And the trainers at “Pushing Boundries Gym” continue to see the improvements happen.

I have a Tysabri tratment this Teusday.  I have never been this strong going into a Tysabri treatment the week before. All-in-all…..this has been the best month in years yet.

Hoping everyone had a great holiday.  It was quiet around our house. 

And quietly…….This has been a turn around year for me.  So much to be thankful for and so much work to do……Maybe the ability to keep working hard towards my goals has been the greatest gift of all.

Happy New Year everyone….and Be Well,

Todd

It's: Soleus vs. Peroneus tertius.......guess who is winning?

Wiki time: 

http://en.wikipedia.org/wiki/Peroneus_tertius 

vs. 

http://en.wikipedia.org/wiki/Soleus
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You see…as the battle with MS takes your mobility from you… ever so slowly…..you always think to yourself……

………”tomorrow will be better”…..or

……”I’m just having a bad MS day”…..

….”or week”…..

….”or month”……

….”or”…..? 

I never really stopped and looked at the bigger picture……I usually battled w/ how I was to get through the current day w/ the new limited mobility tools that I had. 

 

As the years went by…….The mobility toolbox kept getting smaller and smaller…until earlier this year…….

it hits me…..

“you may not be walking at all this time next year”…..I say to myself.

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Enter stem cell……and time away from work to focus on the damage that had been done and what needed to happen in order to fix my walking difficulties. 

We have talked before that walking is made up of a lot of different pieces.  As you lose a piece here and a piece there…..you are all of a sudden left with bad habits. 

Bad walking form. 

And you no longer have the communication left to do anything about it.

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Now that some of my communication is being restored via stem cell…..It is very exciting to see if I can put the walking pieces back together again. 

“Foot drop”… for many of us MS’ers… is the beginning to the end of our mobility. Hip flexors and knee flexion are the other big pieces of the walking puzzle.  Loose all three of these……and you can bet….a wheelchair will soon follow. 

 

As I continue to fight off the wheelchair….I have learned something rather valuable over the years and from the trainers at “Pushing Boundaries” that is starting to make sence. I thought I would try to share what I have learned. 

My “Foot Drop” fight involves two major players: The Soleus vs. The Peroneus Tertius (“Tibbs” is what they call them at PB) 

As you can see in Wikipedia….The Soleus muscle is very large and your “Tibbs” are very small.  As you lose communication w/ your “Tibbs” in either leg…..your foot and gravity are now in a dropped state. (open angle > than 90deg.) This makes walking very difficult.  You swing your leg around to the side in order for your big toe to clear while walking.  While all this is happening…..the Soleus muscle,on that same leg begins to tighten. Your “Tibbs” (The Peroneus Tertius) on that same leg (the smaller muscle) are now so weak due to little use or no-communication…..That “foot drop” is now a life-style companion.

The “Foot drop” fight is so un-evenly matched….that it doesn’t take long to see who is the victor and “The Evil: “Foot drop” is now a permanent resident that you never invited to your now……..disabled mobility.

Your only hope is to keep that dominant “Soleus” muscle stretched……Always!!!!! 

Trying to bring the angle from shin to big toe to less than 90 deg.

 

Be Well

Todd

Stem Cell never felt like a gamble......But I'm still going for it none-the-less

 

For those that haven’t heard……thanks to my parents help and a stupid bank that continues to loan me money…..Julie and I have decided to keep the “hard core” daily rehab efforts going for another month.  Febuary 1st will now be the planned return to work date.  

I’ve seen to much progress and the dream of walking back into work is still very much alive.  I continue to get stronger by the day.

I will have another update ready before X-mas.  It’s possitive.

and the procedure…”It worked!” 

Be Well

Todd

With MS......Always keep your options open.

With Me…………

It was a little different….After 17 years…..I slowly find myself running out of options……I’ve tried the other therapies offered for MS….failed some of the treatments….and Stem Cell was basically a no brainer.  One of the last resorts for hanging on to the little mobility that I had left. 

The “Hail Mary”…so to speak. 

Don’t get me wrong…..I’m very excited for the guy in Australia.  I hope we learn a ton from him.  But………did he take some things off the table with the “conditioning” (chemo)? 

Hmmmm……..time will tell. 

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My Buddy: “Gardener” at PLM… has a little different take on things. I seek input from her on many things.  She is a very smart lady and has done a ton of research for me.  She wrote something in regards to the procedure in Australia the other day at PLM I’d like to share: 

Gardner writes: 

       “Hey, Smallie. I’m back.

I read the article, and have a few observations. The conditioning the patient underwent is the same procedure that’s been used for MS for a few years now, but it’s usually reserved for patients failing standard DMDs. First, a drug is given to the patient to increase their stem cell levels, then those cells are extracted. I’m a little confused on one part, because when hematopoietic stem cells are extracted here (in the US), they’re taken from peripheral sources (blood) and not from the bone marrow. Mesenchymal (like you did) still have to be extracted from bone marrow. I recall you writing that:…that was the best part of the procedure.Tongue out

My confusion is in the conditioning, which involves using chemo to wipe out the immune system, then re injecting the stem cells. When hematopoietic cells are used, the immune is wiped out (mostly), and when mesenchymal are used, the immune system is left alone. I don’t know if it’s bad science reporting, or a really unconventional procedure that’s not commonly used, but the details seem wrong. 

The bit about the patient being in a wheelchair, and losing his vision? That happens a lot, especially in the early stages when MS is frequently at its most active. The patient mentioned was diagnosed last year. Chances are, nearly anything would have had him out of a wheelchair and restored his vision. That’s just how MS works. Lots of people have severe relapses that leave them immobile and nearly blind, and most of them recover. At least early on.  

Early on in MS, nearly everything works, and the biggest factor in recovery from a relapse is time. I am curious why the patient’s doctor decided to treat someone with stem cells as a first treatment. I can see the value to researchers, but the patient doesn’t seem to stand to benefit nearly as much as they do. Considering when the man was diagnosed, he would have been considered a “naive” patient. That doesn’t refer to personality, just to patients that haven’t had any MS treatments. Those patients are quite valuable to researchers; there are fewer and fewer of them as the MS drugs become more widely used early on in disease treatment. 

Using chemo so early also may preclude the patient from some upcoming treatments. There is growing evidence that use of chemo agents may make monoclonal antibody treatments (like Tysabri) less safe in the future for that patient.  

To be honest, the story makes me a little queasy. I don’t know why a doctor would use that kind of treatment on someone so early in their MS. The doctor skipped around some rules, and traveled to a less regulated area to do the procedure. I’m not sure if the patient was given other options, or if he was part of a study, although I would guess not. 

I’ve been following your progress, it sounds like things are going well. I hope for New Year’s Eve, you and your wife are able to go dancing.  

“Gardener” 

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“Gardener” is a very smart cookie and on this one……..I must agree…… 

Be Well,

Todd

Hmmmmm……………………Thanks Petra at PLM

I found this link:

http://www.abc.net.au/news/stories/2009/12/14/2770629.htm

I would love to know more about the protocol and what sort of “conditioning” he went through to deal with his immune system pre-transplant?

Any taker’s????

Gardner???????

Hope all is well

Todd

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