January 2010


Sunday Night…………and I can’t wait………
 
   

Time to get back at it..........

Regrets?????…………

Nope!!!!!!!!!!………

Fact is….. I’d do it all again……….Progress was made……no doubt about it. 

I was thinking that once I return to work……things may just be a little easier for me………My fatigue is definitely gone. Stem Cell was a success. I attribute that to the fact of how hard I’ve worked in the gym. 

I will be cutting back on the workouts a bit…….but I do more walking at work than I do at home……..and so……..I think I’m now more than ready. 

I am definitely stronger than before I left work in September.  That fact alone makes me very interested about how things will now be. 

I got my new EDSS score from Dr. Kita the other day……..I was a 6.5….. 

…..now I’m: 

6.0!!!!!!!!!

That may not seem  like much……..but just the fact that Dr. Kita saw fit to lower my score is huge to me. My goal is to be a 5.0…..and I’m not stopping till I get it. 

I continue to progress at the “Pushing Boundaries Gym”.  You can read some of my feelings for PB and personal trainers here: 

http://pushing-boundaries.org/Accomplishments.htm 

So……………….

Things continue to go well all improvements are sustained. Now its time to start making money and adding up the financial damage done. (oh joy) 

Besides……………..

.......people (the flying public) need a view.

I honestly…………….Like my job and all the people there……. 

I guess I’m lucky…..not all of us can probably say that. 

Be Well 

Todd

Looks like watching me walk.......minus the beauty

 “It’s like your walking a tight-rope……….”

………people say to me. 

When I’m tired……..I lose the ability to raise my knee (“hike” my hip). I begin to swing my left leg around in order for it to clear and to take another step.  My walking looks awful….. 

It is this: “bad habit”…….that I must break. 

Not an easy thing to do, when you need to be as mobile as possible. (work, family, home navigation, etc., etc……..etc…..) 

Poor nerve conduction is to blame…… 

………..and that is my MS…in a nut shell. 

So……………

  

Monday morning….I was well rested.  I drove across town to “Lokomat” training…..as normal.  It was “MLK” day….so traffic was minimal.  

I had a few extra minutes in the gym before we started.  My balance was good. I felt real stable……..and so……. 

…….I picked up the cane and started walking independently!!!!!!  

Ten steps in one direction………… 

……slowly turned 180 degree’s…………. 

And then ten steps in the other direction……… 

“Hmmmm………..????”…………I’m thinking to my self…….”Where is “Marty?????”  (Pushing Boundaries Trainer)……….

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  Enter Marty:     

“Whatz Up?”……….Marty says. 

“Check this out…..” (I take 10 more steps for him) 

“Woa!!!…..thats cool!”…………He says 

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They were small steps…….but independant steps…..none-the-less.  About ten yards of distance.  It had been about two and a half years since I walked that good.

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Tuesday morning I met w/ Dr. Kita to fill out my return to work paperwork.  I told her of the day before.  She reiterated how impressed she was with my last visit.  And then…….she laid down the next challenge. 

“Ya know………If you can walk 100 yards unassisted…….that will change your EDSS score”……she says to me. 

Enough said……I thought. 

  

So there you go……………..Time to start walking like:

A Cowboy

  

Game On!!!!!

  

Be Well 

Todd

My latest update is also towards the bottom of this post.

It wasn't that long ago....that "Elmo" was all the rage.

The latest buzz in the MS community is CCSVI.    

Chronic Cerebro-Spinal Venous Insufficiency

Wiki time:    

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

Basically a poor blood flow issue.  Partially blocked veins and/or narrowing of the veins that take blood away from the central nervous system.    

It’s all the talk in the MS community and so…..of coarse…..I took the short cut and put my feelers out there.    

I reached out to my friend “Laurie” in Minnesota.  She helped me tremendously with my Stem Cell research (she basically did it all for me…..LOL).  I would have questions……I’d throw them at her…..and she would always get right back to me.  Her contribution’s to PLM (Patients Like Me) are priceless as far as I’m concerned.    

In the end…..Stem Cell was entirely my decision…..Laurie thought MSC was too early to jump-in and do anything…..and basically she was right…..the information (proof of successes) was just not there. YET!!!!!!!    

I respectfully diagreed…..and I’m glad I did…..something is going on now and I will get to that later in my post here.    

**********************************************************************    

Anyhoo……….back to CCSVI……    

I wrote to Laurie the other day:    

Hey Laurie,   

Hope all is well.    

In regards to CCSVI……does over 20 years of one’s exposure to metal dust in a machine shop atmosphere correlate into possibly increased iron levels in ones blood?   

Or is the blood Iron levels that they talk about w/ regards vain blockage in CCSVI…….come from some other source.   

I’m late in my education into the CCSVI issue……and as you know…..I’m not always the sharpest tool in the shed.   

Be Well, Todd   

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Laurie’s response:   

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Todd,  

As far as the iron deposits connected to CCSVI theory, in the words of my neurologist, “He pulled that one out of his ass”. Lots of diseases cause iron deposits in the brain, and none of them are associated with higher levels of MS. I looked up hemachromatosis (HFE), which is a genetic disease fairly widely distributed in Northern European populations. It prevents iron from being excreted during normal biological functions. You would think that if iron deposits are a cause of the symptoms of MS, and people with HFE have high iron levels, that there would be a lot of overlap between the populations. There isn’t.   

Remember all of the studies related to Dr. Slavin’s work?  

The testing on mice to show that MSCs would actually implant, and all of the lab procedural papers with his name on them?  

All of the backing information about exactly how his procedure would work, and what he expected?  

His ongoing study measuring EDSS scores, and keeping track of how patients are doing? His cooperation with neurologists?   

Zamboni has none of that. No papers, no test procedures with mice, no correlating studies. No replication of results from anyone else. Just one paper on the observation from an obscure vascular journal last year, and a few operations, apparently without follow-up testing and publishing. Since than, many people have jumped on the bandwagon and are considering flying to Italy to have an unproven procedure one. A procedure that actually is a high risk operation.   

Wait to see if anyone else can replicate his findings. The MS research community has been pretty open to researching the finding, and any kind of treatment at this point is wildly premature.   

A friend’s father is a neurologist. He was very generous with his time, and talked to me for about an hour on the phone shortly after my diagnosis (he lives in Utah). During the conversation, he commented, “If you think you’ve found a cure for MS, lay down and sleep on it. You probably haven’t”.   

Laurie   

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That was pretty well laid out I thought.   

Now….some may say……”Who is this Laurie.”  And “How could she possibly know all this?”   

Laurie is the real deal.  Her information is always quantifiable.  To prove this…I pose the same questions to Professor Slavin.   

In my email to Slavin…..You will also note an update to my rehab process.

Getting closer and closer......

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My email to Professor Slavin:   

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Dear Professor Slavin,
 
Still working hard……progress is slower than I would like but it is still progress and that makes me very happy. For the last month……I have put in eleven hours of work-outs in six days. Sunday’s are my rest day.
 
My current workout schedule:
 
Lokomat – 5/days/wk……M-F
Swim/walking and stretching in water – 3/days/wk……Teus.,Thurs., and Sat.
Core and leg strength 3/days/wk…..Mon.,Wed. and Fri. right after Lokomat.
 
(All training is one hour sessions)
 
I also stretch everyday for at least 1 hour a day.  I will be your poster boy when I walk again. 
 
I know that right now…I have the strength to walk.  It’s just that I lack the communication to my hamstrings, dorsi-flexors, hip-flexors.
 
The communication has improved tremendously in all of these areas since MSC transplant…..but when I tire….the nerve conduction fades quickly and I am then unable to move the particular body part very well.  I have seen much improvement with these areas when they are rested though…..so I am still hopeful for some future independent walking. 
 
My MS fatigue is obviously gone…….for that I am so grateful.  Before MSC transplant…..I was maybe working out for :20mins. 3/X’s a week.  So as you can see…..much improvement in the strength and endurance department. Thank You!!!!!!!!!
 
Questions:
In regards to CCSVI…..(Dr. Zamboni research, Italy)……does over 20 years of my exposure to metal dust in a machine shop atmosphere correlate into possibly increased iron levels in ones blood?
Or is the blood Iron levels that they talk about w/ regards vain blockage in CCSVI…….come from some other source.
I’m late in my education into the CCSVI issue.  I will soon have a MRI…I will be sending you a copy of those MRI results…..Is there something that I need to be asking Dr. Kita to be looking for w/ regards to the “Zamboni” research also?

Also……….when do we start to talk of another MSC transplant?………or not at all as long as I continue to see progress like I have been??????????
Sorry bout’ all the questions…….but something tells me that you more qualified than anybody I know to answer.
   

Thanks again and Be Well, Todd   

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Professor Slavin’s response:  (His response are in bold type) 

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“Dear Todd,   

Thanks for the update.  I am happy it goes in the right direction.   

As to your Questions:”   

You ask:……In regards to CCSVI…..(Dr. Zamboni research, Italy)……does over 20 years of my exposure to metal dust in a machine shop atmosphere correlate into possibly increased iron levels in ones blood?  

“No, no correlation with your disease.”  

You ask:……Or is the blood Iron levels that they talk about w/ regards vein blockage in CCSVI…….come from some other source.   

“No, and besides, no one knows if the theory is valid.”  

You ask:……I’m late in my education into the CCSVI issue.  I will soon have a MRI…I will be sending you a copy of those MRI results…..Is there something that I need to be asking Dr. Kita to be looking for w/ regards to the “Zamboni” research also?   

“Not in my opinion.”   

You ask:……..Also……….when do we start to talk of another MSC transplant?………or not at all as long as I continue to see progress like I have been??????????    

“Certainly not as long as we see progress.  In the future, we believe our ability to regenerate lost functions will be much better, so unless urgent, I think it would be better to wait.”  

“Slavin”  

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So there you have it………Professor Slavin agrees w/ Laurie……….”no one knows if the theory is valid.”……he says.  

So I guess when it comes to CCVSI…………..Patients may just be in order.  

Be Well,  

Todd

The last few weeks here in Seattle…..the weather has been kind of crummy. 

Well.....not this bad....but close.....

Well.....not this bad....but close.....

There is a phenominon w/ people sticken w/ MS. 

It’s called “Heat Intolerance”. 

A lot of  us MSer’s are unable to be in the heat for too long.  For me….it usually affects neurological communication and makes walking very difficult. 

I’ve also noticed another phenominon…..I have not been able to pinpoint it but, it’s either related to humidity or barometric presure. On the days here in Seattle…..when the rain comes and goes……my mobility suffers a little bit.  Is this an MS symtom?…..or can it be related to something else? 

Who knows? 

I have seen nothing in the way of info about “Barometric Pressure Intolerance” or “Humidity Intolerance”.  The best I can do is:……report my case to the Neuro and see what she says. 

I met with Dr Kita Teusday…….I told her of my troubles on days like this……when the rains come and go.  She told me that patients had reported similar difficulties. She didn’t have any study info or documentation to share w/ me. Maybe some of my MS comrades can chime-in and validate?

Anyhoo…………I wasn’t seeing her Teusday to divulge into such MS nuisances. 

Teusday was something much, much bigger.  

Teusday was “EDSS” day. 

It was a day to see how far I’ve come since my meeting in Israel w/ Professor Slavin.  I skipped my morning “Lokomat” workout just for this reason.  I wanted the conditions the same as when I walked for the Professor in Israel before Bone Marrow aspiration June 30.

Also the same conditions as my last EDSS evaluation with Dr. Kita in September before MSC transplant.

***************************************************************************

Eric called me in from the waiting room and said that we would start with the 25 foot walk…….no problem. 

“It’s so cool to see you walking”…..Eric says to me. (He usually sees me in a wheelchair because I had already worked out hard in the morning before our other visits.)

I then met w/ Dr.Kita for the other standard MS testing.  My hip flexors were not working good that day so my knee raises were just not happening.  We then went for a 100m walk.  This is something that I was unable to do in Israel or for Dr Kita last September.  You could tell she was impressed.  After we were done w/ the 100m walk, I told her that I could probably go further.  She said it wouldn’t really change the score. 

I could not walk the 100m in Isreal last June or for Dr.Kita last September.  My Bioness worked just fine for both of those visits.

We then went back to the room to look at the other test results that Eric had done earlier. 

“That’s Smokin’…!!”………she said……..

with regards to my 25 foot timed walk from Tuesday compared to last September.  You dropped 6 seconds each way!!!!! 

I then told her that all of this walking was done w/out the use of my Bioness.  (My Bioness has not worked for the last 3+ weeks)

And before I left the house that day…..I thought I wouldn’t do well because of the crummy weather outside. 

6 seconds over 25 feet......improvement from last September

So……..I thought the weather that particular morning, was making me feel crummy…….when in fact……it really didn’t matter.  I’ve have recently sent Dr. Kita an Email on my new “EDSS” score request but I have not yet heard a response. 

I’ve pretty much maxed out my workout load for the next couple of weeks until I return to work on February 1.  One week before my return, I will start to taper back on the workouts a bit.  The progress has still been slow in regards to walking for me…..but I still remain hopeful.  I continue to see gains in the strength department.

All that is left now is to get see a bit more nerve conduction via the new MSC’s.

The spasms have tapered back a bit in the Hip flexors.  I almost hope some of the discomfort comes back……..It makes me feel like things (nerve repair) are working. 

I think the new nerves are being generated.......they just need a home

So…….How long….???????????

How long to Repair??????........Dunno?????

Be Well 

Todd