Stem Cell Procedure


I'm a very lucky man

I remember the spot…..I have not been to it since and have no reason to really go back.  It was a shopping mall and twenty-two years ago, Love walked right up to me and said: “Hi….how are you?”…(we had gone to the same school together but had never really met before)

Fate?

Don’t know….but she wasn’t kidding when we got to the “In sickness and in health” part.

Happy Anniversary Julie……twenty years…I love you….am proud of you…blessed that you are with me…..and thank you for the happiest years of my life.

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Update:

Well…its been to Long….and you maybe wondering what’s going on?

Am going to: http://www.patientslikeme.com/ tonight and updating my profile w/ all my current meds. (no changes in the last two years).

If your interested in what drugs I take or other MS’rs take….it’s all listed there.  My profile name is “Smallie” in the MS community. Dates, History, Drug/treatment research….it all there.  Log in and learn.

Things have been good.  MS is still a major player in my daily life…but much less of a burden since stem cell (9/2009) and less still since CCSVI (2/2011).

The only reason I have not blogged is because everyday I find myself becoming more and more like my old “Productive” self.

Some of the “Productive” stuff since my last post:

–         Battling health insurance over 18K worth of claims that were owed to me.

–         Working out at PB 6 hours?week

–         Custom staircase handrail and Newel post install

–         Two Baseball teams (21 games + practice my son)

–         Property Tax appeal

–         Home refinance

–         Income tax

–         Working as much OT as I can and want

–         Working all but 2 days in June

–         Futures planning $$ (always)

–         1000 s.f. of basement wiring

–         900 s.f. of basement remodel prep

–         900 s.f. of basement remodel w/ volunteers (60% complete)

–         Exterior deck painting

Still no excuses for not updating.  Sorry. Some people emailed me about my status and I was pretty short in reply.

Things are good.

Busy.

Busy is good.

That’s normal life stuff…right?  Busy…

We are all busy…..but when you have a major disease that your dealing w/….then the MonSter disease can really take over that “Life’s busy” stuff.

Thankfully my MS has been stable and I’ve been back to the “getting stuff done around the house” mode.

I’m very happy with my “MS stability” right now.

So nice to not have the disease own me like it used too

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A quick “shout out” to all the volunteers that helped us with the basement remodel two weekend’s ago. (Staircase too)

Mom, Dad, Val, Mike, Bill, Silvia, Lynn, John, Jay, Niki, Alex, Payton, Lauren, Nate, and Tony.

It’s starting to come together and kids are getting excited to see the walls going up. Fighting over where the T.V. and game room will be.

Thank you so much.  In those three days I would have never imagined we could have got so much done

Be Well

Todd

Where do you see the water level at this point?

 

My friend Sandi sent me an Email the other day. She wanted to know more about things, how I was doing, cost for CCSVI. She told me she was trying to make a wise decsion. Soooo……it got me thinking…….

“Do I give people the wrong impression that things are better than they really are????”

  

Dun-no???

 

I hope not…… I still hve MS…… I still walk funny.

So I wrote Sandy back……just to tell her I’m feeling good and happy.

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 Hi Sandi,
 
I have not spoke to anyone from Israel for some time.  I will forward you my last email exchange w/ them.
 
I paid $10,500 for CCSVI at Pacific Interventionist.
($2500.00 – MRV/ $8000.00 CCSVI procedure) 
Dr Arata. performed the procedure.  I explained in this last update why I chose him over the Hubbard foundation. I am now in the process of billing my own insurance myself.  Dr. Arata provided me with a procedure synopsis and the appropriate insurance codes on the invoice.  Were still working on the Letter of Medical Necessity.  I may just turn in what I have now and see if they will require the LOMN later.
 
His protocol attacks the valves that interconnect the veins. He does a little more than just balloon your veins. The “valve” is where CCSVI derives from.
 
Fix the valve…..and the possibility of re-stenosis is greatly decreased.
 
Two weeks out from CCSVI now and I’m feeling good.  My “Lokomat” workout this morning was my best yet……although when I am tired……the communication to my legs is just not there.  That’s MS and I know that.
 
CCSVI has helped me recover from these hard workouts more quickly.  I’m also seeing improvement w/ heat sensitivity.
 
I’m a glass half full sort of guy and I hope that I have not given people the wrong impression of the severity of my improvements.
 
I have always remained consistent in the fact…that….these procedures are not a cure for MS……but just things that have made my quality of life much better and enabled me to keep working and providing for the family.
 
The last I spoke with Isreal….they were fooling around with liposuction and working on a new patent for their “Improved” ASC/MSC protocol.
 
CCSVI has given me a little more life here…….I’m going to see how much it will give me over the summer………then, I may think about giving Slavin a call and seeing what is the latest with Stem Cell. I still believe that Stem cell is the key to Meylin repair that every MS patient needs.
 
Ever since my stem cell (Sept 2009), I have been stable, happy and working a ton. I think MSC did give me greater Neural communication. It’s been awhile and I still seem to be making small strides in the gym so I’m hopefull for the future and am also broke again from CCSVI costs.
 
Stable for me is a win.
 
Is it CCSVI, MSC, Tysabri or a combination of all three????….
 
I don’t know…but I feel good, am working/providing,happy…and that is just where I am right now.
 
Your proaction is what makes you wise Sandi. And my repsect to you for your continued fight with the MonSter.
My prayers back at/with you.
 
Be Well,
Todd

Sorry…my longest post yet.

As men......we sometimes want what we can't have..........For me...it's "Legs"

 

 

Hmmm………………

Scrambling to get out the door every night to work…………….

“What do you need?”……..she asks.

“Legs.”…….I reply in frustration.

Sorry Julie……my stupid sence of humor and I’m only kidding myself.

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Hopefully that’s what you’re going to get for me,………not a bunch of complaining bout MS and my struggles. I do complain about my issues w/ insurance and their unwillingness to pay valid claims, however.

I’m getting better at dealing w/ insurance and should have a positive report in a few weeks ( maybe months?) on how I got them to cover “Lokomat” training here in Washington.  I think I’ll be the first.  We’ll see? 

 Complaining about MS is a waste of time. “It is what it is.”…..I say.  Nobody wants to listen to you “bellyache” and I’m to busy working, working out, and keeping the “Small financials” in order.  Oh yea…..I’m a husband/dad first though. I have worked a ton of overtime since July 1, and things have been good physically so I’m able to comfortably take on the extra work and still feel I’m working out hard (away from the job) and continue to slowly get stronger.

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 Daily MS life for me can be tough still

Training away from work is the foundation for my little success. I’m working hard and I’m pleased with my efforts in the gym.  I’m putting in the time. You know when you’ve tried or not.  I’m OK w/where I’m at mobility/strength wise.

For the last couple of years…..everything takes a little bit longer…..a little more technical….and a whole lot more tactical.

Each little task in my MS day can be a challange…….i.e.

– How long will it take to get up the stair today.

– How long will it take to get dressed for work.

– How fast can I make it to the bathroom.

– How fast can I get downstairs get something to drink and get back upstairs to bed

– If I leave now while the wife and kids are upstairs…..can I beat them to the car and get in so they don’t have to wait for me.

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Each day I try to better myself at these little obstacles. You name it……I can just invent a challenge for myself ….on the fly….anytime…..anywhere……..

…..maybe that’s some of my motivation. Who knows?……I still feel strong to battle all the “crazy little MS life delay’s”. I’ve made the mental adjustments for my mobility issues. Still striving for improvement all the time…though.

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Anyhoo…….sorry bout the lack of updates…..things have been good, My energy is good and the fatigue is gone. Spasticity is gone and I hardly ever take Baclofen anymore.  Don’t feel I need it.  As I mentioned before….I’m back on the Lokomat and hopefully to stay if I can get this insurance coverage worked out. (were getting closer).

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I have been at www.patientslikeme.com the last few weeks corresponding w/ another member: “Jezebel”.  She’s really interested with the whole MSC protocol and asked me some pretty tough questions lately.  I assured her that I was no expert but I would do my best to explain how things have worked for me. It may also explain further how I have been feeling of late.

Here is part of those conversations:

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After a few email exchanges Jezebel writes:

Dear Todd,

Forgive me for overwhelming you. (with a ton of questions) Please in any email take your time even if it takes three weeks to respond back; by no means I expect a reply back right away. 

…………….my emails are overwhelming. I am also a bad writer sometimes. The question marks that were in the body of the email were intended to express my thought process, trying to paint an image of what goes inside my head. They were not intended as actual questions. The only questions that I would like to have answered are the numbered questions that I was asking toward the end. Please do take your time, I appreciate all the perspectives you are making me aware of. Here are those questions again…………………

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My responses: (I’ll put my answers in bold below) 

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Hi Jezebel,

Here you go:

1. You said that Stem Cell therapy did not help you with mobility? What kind of mobility issues do you have? 

A). I’ve walked w/ a cane steadily now since February 2006.  Before that…..I had used the cane only as I tired.  I was building my “Dream House” at the time in 2005/2006. As I was running out of time and money (the house was nowhere near livable yet)…..I had a huge relapse (MS exacerbation) and a nervous breakdown. At that point, I had been Dx’ed w/MS for 12 years. I mistook the exacerbation for “Nerves”, “The stress of it all”and “Overwhelming house remodel”. Never before had I experienced something so debilitating from my MS. Call it Naive” or “Stupidity”…….pressing on to finish the house and all the urgency I felt from it all… was a huge mistake….and looking back….if I would have just dealt w/ me 1st….well????……who knows?. Would I be in the same spot mobility wise?….I often wonder…..things might be a little better now???

The problem that I have w/ mobility is:…..It has been so long since I have walked correctly,…..that my bad habits and walking form have become normal.  I’m trying very hard to break these bad habits.  Stem cell has given me the ability to now tackle this issue. My MS is currently very stable and I am able to focus a lot of my free time… (w/ family I don’t have a lot)…to all my gait and leg strength issues.

I will never give up my quest to walk independently again.  Right now I definitely have the strength to walk…..It’s just the neural communication that I lack.  Damaged nerves definitely. But honestly…..I think stem cell has done a little repair in this department. I have moments of greatness where I will put down my cane and try to take a few steps in the house……but the moons have to be aligned just so (LOL) and I have to be completely rested.  These moments are weeks apart but they are still there.  Consistency in my training regimen is something that will give me better results…..It’s tough w/ the job,  family and money.  The kind of “gait re-education” via Lokomat is not cheap,… ($15,000+ post stem cell and counting)…I’m currently working w/ insurance on this.

I’m hopefull…..I’m also looking into CCSVI….Do I believe CCSVI is the answer to my MS issues???

Of coarse not….but it may just open some new doors with me and help me unlock the “Walking puzzle”.  There are so many pieces and any little help I can get…..”I’m all ears”

So there you go……”Who’s being long-winded now!!!!”

Such a long answer to such a simple question……damn….I’ve looked at these for a week now and I know the questions get a little harder…..but….you asked for it!
 
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2. I am glad that your Stem Cell Therapy helped with fatigue, and strength. I understand your work is very demanding, and that is also something I want to be like: have a job that help others but with the fatigue I have now, I can’t even help a snail! But I guess you would it do it again, because it makes you feel less tired, and stronger physically to handle your own body. Am I correct in saying that?

A). Fatigue has been the “God-send” of the whole stem cell process.  Ask anyone online that has gone through “Slavin’s” protocol and they would attest to some sort of fatigue relief.  As for the longevity of this for them….I do not know….MSC people have stopped updateing….so all I can do is speak for myself…..

One year plus….post stem cell….and my MS fatigue is still a non-issue.  Yesterday was Friday and the 19th working day in a row for me. Since June I have put in a ton of OT. Even a 26 day in a row stretch. Still able to get 5-6 hours of rehab and strength training/week in as well.

I am so happy to have that part of my life back.  It puts me in fighting mode….as was before MSC….I was happy just to have days of “maintain mode” w/ all of the fatigue I was having. I lost a lot of muscle mass back then…..and yes….defiantly a lot of weight lost….but not the kind of pounds you want to be losing.

To some currently…..I may look the same mobility wise….but they cannot deny the muscle mass increase or the fact that I am currently working my ass off. (actually my butt is getting a little stronger….we’re doing weight lifting “squats” at the gym….so techincally…I’m putting a little ass on…..LOL)

Whoops……another long answer…..”what were we talking about again??”

“Oh yea….Fatigue…….YEP….Much better….hopefully done with fatigue for a while.”
  
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3. Aside from the mental issues, if you had the choice to go back with the option of getting stem cell transplant prior to experimenting with Other MS medication, how would you approach it? would you change anything in the way you handled the process of your medication history? do you think you would have decided to get stem cell earlier than you did? if Yes, why? if No, why? 

A) No

Why?……Money

And the fact that…..at the time, my disability was not that great….maybe due to the fact that I had been on a FDA approved DMD for years and was stable.

There’s that word again “Stability”……such a critical MS word!!

Copaxone was a godsend to me and afforded me eight valuable years of Stability. Once I started to falter we tried “Rebif” only to find out after six months my body rejected it. (Developed cellulitis in both arms at injection sites)…So Doc said inteferon’s were not for me…..So on to Novantrone…..Once again: Stability for me for another 2 years.  Then “Tysabri” since Sept 2006 and still on it.

Novatrone had totally wiped me out…..It’s Chemo for “Christ sake” and I never really regained my strength after taking it.  Tysabri has kept me stable since it inception but after Novatrone the MS fatigue had settled in nicely and was with me to stay.
 
Hindsight:

I probably stayed with Novatrone to long….I let the drug wear me down and damage my heart in the process…..I firmly believe….use Novantrone w/ MS people to get stable…then….get the hell off it.  The long-term effects are to costly….again…hindsight 20/20.

So………as you can see…..I sort of was running out of FDA options. I did about six months of research and doled out a ton of cash for a MSC study.  That’s right…..A MSC study!!!

Let’s give you a little bit of stem cell and make sure it doesn’t kill you.  But the research I had done prior said the results had some positives. Possible repair of damaged nerves. Hmmm….what other options did I have last year???? I was very weak and feared losing my job.  If I could  raise the cash, I would go……

I’ll be paying for MSC for a while.

Copaxone, Novantrone, and Tysabri all did what they we’re supposed to do for me. They gave me “Stability”. They worked and I would try them all over again before I shelled out the big bucks.  We don’t hear from the patients that MSC didn’t work on.  I bet they are out there.

There is that word again “Stability”.  I was one of the fortunate one w/ MSC.  Do I plan to return for more?……possibly….gotta come up with the cash first….I gonna have this CCSVI scan first.  That’s gonna be about $2000.00 I think?

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4. relating to the question in point 3, I am still a bit struggling with why you feel that stem cell therapy should be exhausted as a last resort? Are you concerned that it is too much money for the benefits you received? are you concerned that patients may be having high expectation from stem cell therapy and it is not really all that, and that the results can be just as well achieved with less expensive treatments such as proper diet, counseling and MS medications?

A) You Say: 

“and that the results can be just as well achieved with less expensive treatments such as proper diet, counseling and MS medications?”

You bet that’s what I’m saying!!!,……..Try a DMD……yes it will be Nerve wracking at first for some…..

But it’s about “stability”…..MSC… I believe in,..The Slavin protocol…I believe in. But I also believe that Stability can be achieved w/ the right DMD and other supplemental medication here in the US and if you can get insurance to pay for it…….why the hell not.

 The mind is first.  Some people freak out over the words “Anti-depresants” or “Anti-anxiety” medication. I’ve taken them. Still do. Wellbutrin works for me. I get angry when I don’t take it.  The wife doesn’t like angry.

Well there it is……..your questions…..Good questionsI’d say.  Makes me think of where I’ve been….and where I‘m going.

I pray that you find MS stability Jezebel. Promise me you will do what ever it takes to get that.

ONCE YOU GET YOUR MIND RIGHT……the rest will follow.

Be Well Jezebel

Todd 

It's good to be back on the "Lokomat"

Gait Re-education is a tricky thing.

People make walking look so easy.

Trust me……It is not.

Continuing with my bad walking habits these last three months only did one thing……it keep me on a consistent path of “Bad Walking”.  

I got on the “Lokomat” this last Friday and it was like my legs were re-learning again.  My time on the Machine was good (40 mins.) but my resistance levels were poor.  Mainly due to the fact that it took me awhile to get acclimated to talking those good steps again.

“Lokomat” Link:

http://www.hocoma.ch/en/

I got off the machine and was pretty tired but after I got home that day….a funny thing happened…..I had my best walking day in the last three months.  I was remembering the proper mechanics and had better balance and confidence.  Those feeling continued Friday and into Saturday.  Then….Saturday night….back to my old bad habits. 

I’m trying to get two days of “Lokomat”/week for the rest of the year and at :40 min/time…..it’s much more than I’m doing at home.  My elliptical sessions at home are usually :25 min.  

My insurance claims are still being reviewed.  It’s been about 2 months now…..I’m just waiting on the denial letter so I can immediately appeal it.  For me…each denial letter is a stepping stone.  The first one will give me a good idea of what was missing or policy guideline not followed.  As more and more time passes…..my confidence continues to grow in the fact that I just may pull this off.  Then, if i do……I’ll need to look seriously at getting into “Pushing Boundaries” three days a week again.  

I’ve still been working a ton.  It a good thing cause my car just died and it took major funds to put that right.  I guess after three years and 45,000 miles (My used car has 130K total miles now) somebody had to take a wrench to it.  Glad to have it back out of the shop and running good.  Hopefully I can get another 45,000 out of her.  

All in all……my strength has been good……nothing major to report except the fact that I’m still grateful to have the lessened fatigue and have drastically cut back on my Baclofen intake.  I’m now taking only 10mg every three to four days.  

Everything else has been the same……stable and grateful.  

Tysabri is tomorrow and it looks as though I will start to stretch these treatments out a bit.  I will now schedule these App. 5 weeks apart instead of just the 4 week regimen I’ve been doing the last 4 years.  

I used to really feel the need for Tysabri about week before my next infusion.  Now…..not so much.  This is just another example of the new-found stability since stem cell.  I still have heard no results from that new JC virus test I had the last month.  There was a problem with the waiver I signed so I had to sign another one, send it back in and I think this is the reason for the delay.   

Hope all is well with everyone and I saw an ad for the christmas holidays this last week……that was scary.  

Same thing on this years christmas list for me:………..”Legs”  

Be Well  

Todd

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.
________________________________________________________________________ 

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.

"Life"...........just trying to make the right moves

Well hopefully everyone had a good 4th of July 

The family and I were on vacation the last week of June.  We traveled down to Salt Lake City for “Mormon Mania II” (a visit w/ Julie’s cousins).  We timed it just perfect……when we arrived in Utah they had just had their hottest day of the year so far (94 deg.) I think one of the days we were there it was 88 deg.  The rest of the time it averaged 92 – 97deg. 

Still wouldn't want to be let out here........

MS people like me love the heat……..NOT!!!!!!! 

Actually…..I did very well compared to just one year earlier when the family and I were in Israel with very similar temperatures. 

Last year in Israel my activities were limited to a tiny air conditioned hotel room, the lobby and assistance in and out of the hotel pool.  We only ventured out once in the 8 – 9 days we were there to site-see and on that particular day……I spent most of my time in a wheelchair. 

Utah this year was much different. Everyday I went along with everyone and although we brought the wheelchair……..we never used it.  The heat this year did not totally wipe me out and I was fine on most days. No long naps half the day this year from heat fatigue.  I kept up with everyone and to top it all off……the air conditioner in the house we were staying was broken.  The house was very warm all day/night long and I did OK.  Little did people know…….this was a huge test for me and I passed! 

The difference -Stem Cell…….

  

…..nothing more/nothing less. 

  

People returning from Slavin’s stem cell protocol in Israel have all commented on how the MS fatigue has lessened in a big way for them. Giving them their quality of life back.  I have reported on this for months now.  And now…after this last vacation……I can honestly say that my:

Heat intolerance has greatly improved!

I’m also seeing a difference here at work….the shop is also not air conditioned.  It was 94 – 98 here in Seattle this last week.  I missed no work due to heat and I also have not used my cooling vest yet this summer……no need for the vest……this is another huge MS win for me.

  

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Thank you Danny, Kelly, the kids, and the hundreds (just kidding) of other Tilby clan that welcomed us to their beautiful homes and city. 

The kids and I had a great time and I promise to educate my wife in the art of getting out of her street clothes and into a bathing suit before attempting to ride a “jet-ski”. 

……I know, I know..the thing wasn’t supposed to tip over……right? 

Good times…….Much love to all of you…..and I’ll start thinking Lake Powell 2012. 

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Lately, I have been seriously busy at work…….we have a new plane (747-8)……and the shop has been getting a ton of new work packages that we have not seen before.  Good to be busy at work again, good for the income…….but bad for updating blogs and communicating with people. Sorry bout the lack of recent updates. 

I’ve also been: 

Appealing property taxes 

Submitting insurance claims for Lokomat 

Finding a new auto and home insurance group 

Trying to balance the “Small” budget while working 7 days a week. 

I did get outside and enjoyed some yard work with Julie and the kids the last few weeks.  The place is starting to look pretty good.  But always something to do with the never ending remodel. 

My working out schedule has been put on hold for a while.  I plan to return to “Pushing Boundaries/Lokomat in September or October but I also need to find some funding first……I’ll just add that to the never-ending “to do” list 

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I have been stretching a ton lately. About 2-3 hours a day. This is almost a workout in itself with the effort that goes into it.   The “good spasms” continue. Spasms that simulate mobility needs that I currently cannot achieve on my own.  These spasms make me very hopefully that I may be slowly seeing some nerve regeneration in these areas.  Mobility is definitely not lost in these areas as I had once thought just a year ago. Very exciting but also frustrating at the same time.  Spasms such as these have robbed me occasionally of some sleep but some hard stretching to the area can usually settle things down.  

Eventually some spasm episodes do not subside after lengthy attempts at stretching so I do have to reach for the Baclofen.  I have been on that drug for so long that many of my “good spasm” attacks that I get while trying to sleep can be associated to withdrawal from the drug as defined in the “Wiki” piece here: 

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

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the site partially reads:

“Baclofen Withdrawal syndrome

Discontinuation of baclofen can be associated with a withdrawal syndrome which resembles benzodiazepine withdrawal and alcohol withdrawal. Withdrawal symptoms are more likely if baclofen is used for long periods of time (more than a couple of months) and can occur from low or high doses. The severity of baclofen withdrawal depends on the rate at which baclofen is discontinued. Thus to minimise baclofen withdrawal symptoms the dose should be tapered down slowly when discontinuing baclofen therapy. Abrupt withdrawal is most likely to result in severe withdrawal symptoms. Acute withdrawal symptoms can be stopped by recommencing baclofen.[16] 

Withdrawal symptoms may include auditory hallucinations, visual hallucinations, tactile hallucinations, delusions, confusion, agitation, delirium, disorientation, fluctuation of consciousness, insomnia, inattention, memory impairments, perceptual disturbances, anxiety, depersonalization, hypertonia, hyperthermia, formal thought disorder, psychosis, mania, mood disturbances, restlessness, and behavioral disturbances, tachycardia, seizures, tremors, autonomic dysfunction, hyperpyrexia, extreme muscle rigidity resembling neuroleptic malignant syndrome and rebound spasticity.[16][17]

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I sort of feel like a “Junkie” reading that but the fact remains……..I’ve taken Baclofen now for 12 years…some years ,  high doses. To stop dosing all together, like I have been trying…… may not  be in my best interest. Stem Cell has made my body reaction more sensitive to the medications I take. No longer do I need the high doses of Baclofen to control things. Now just 10 – 20mg/day.  Many days  I have taken no Baclofen at all and got away with just stretching out good. This is where I want to be w/ this drug.  I have said before that I believe this drug inhibits nerve conduction.  

Baclofen has never helped w/ the leg stiffness(not spasm) issue that I have had for some time.  I am now taking 4mg of Tizanadine (4mg/day) to hopefully help with that.  So far I have seen a little help w/the stiffness. The drug does make me sleepy so when I dose at night it is hard to guage the effect.  It’s still early. I’ll keep reporting my results w/ this drug as more time passes. 

 Tysabri is tomorrow and I’m ready.  The “TY tank” feels a little low.  It’s been a hard month of heat and travel. I usually get a “pick me up” right after my monthly “TY tank top off”. 

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Handling it

 All in all……..It’s great to have some of my life back.  Gone is the everyday burden of the disease.  Yes…I’ve been slacking at the workouts cause I’m currently up to my ass in paperwork. A necessary evil we all get stuck with every once in a while.  I’ll get through this paperwork nightmare shortly and get back to my workouts I just thought that since it was hot outside I’d sit down and try to balance the federal deficit which is similar to the Small’s budget…..Good luck w/ that one Todd……LOL 

In the last six months (post stem cell)…..I’ve been getting back to my old ways….family life and futures planning. 

“Life’s chess match”…..so to speak. 

 

Kind of like a normal…Non-MS person. It’s a nice feeling not to worry bout health stuff……A very, very nice feeling. 

Remember…….we all have our crosses to bear……some are just a little heavier physically. 

 No worries right now. I got this.  

Be Well, 

Todd

The "cake" would be "the cure"

 

Exciting times in the MS community.  CCSVI is all the hype and sounds very promising.  The researchers have now ran with it so I’m sure it will be a couple of years before we see a safe protocol put in place for normal MS’er to be tested and then treated with a safe procedure with minimal risk of re-stenosis. Some of the testing procedures available so far for CCSVI are prone to produce a “false positive” for the condition. 

More on CCSVI……the link is here: 

http://en.wikipedia.org/wiki/CCSVI 

I was in Dr. Kita’s office the other day and we discussed where we are with MS currently. This is my take on that conversation. 

Maintenance/Modifying Medication – If you have been diagnosed w/ MS…then you should be on one of these medications. Whether it is from a big name pharmaceutical or you have a natural plan that you follow……either way……you as an MS patient….have talked w/ your doctor and devised a plan of therapy in order to keep you stable. A plan to help the disease from progressing.  I personally am a big pharmaceutical guy. I take a drug called “Tysabri”. Some of the other big phama drugs and therapy’s available are Avonex, Beta Seuron, Copaxone, Rebif, Novantrone, Low Dose Naltrexone (LDN)…….to name a few. 

Conditions that enhance disease progression – I won’t go into all the conditions for the sake that I am not a doctor and am the least qualified to tell you what motivates the MonSter in all of us MS’ers……but I will talk to one condition that is getting all the hype right now and it is CCSVI (See wiki link above). It seems to me, and Dr. Kita agrees, that CCSVI is a condition that is not going to help your MS and also is not the cause of the disease. CCSVI is simply a blood flow/blockage issue in which a very high percentage of MS patients, that have been looked at for CCSVI, have in common. My hope is that a protocol can be quickly developed to detect and repair this condition in the MS’ers that it affects. The MS community needed this protocol in place yesterday

Myelin Regeneration (Repair) – Stem Cell. We’re getting closer but still not there.  I believe the procedure I had done worked to some degree and is slowly continuing to work. But how do we get the procedure I had done….put it on steroids?(Speed the repair….so to speak) This is the next step.  The study in which I took part in was effective in the fact that it proved to the world that this procedure can be safely administered and basically not kill anybody.  Now I think it is a matter of volume and further refinement. Meaning: “Which one of these little MSC’s is the magic Band-Aid?”  

  

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And lastly……”The Cure” – Let’s not lose sight of this……How do we turn our immune system off just enough so it will not attack us and eat away that Myelin? 

Immunology working w/ Neurology holds the answer I believe.  A while back a local Doctor I met last year got promoted. I received the following email: 

MEMO 

To:     VMHS/VMMC Boards, Benaroya Research Institute Board and Executive Leadership 

From: Gary S. Kaplan, MD, Chairman and CEO 

RE:      Dr. Nepom Named Director of Immune Tolerance Network 

I am very pleased to inform you that the National Institute of Allergy and Infectious Diseases (NIAID) has named Gerald T. Nepom, MD, PhD, as director of the Immune Tolerance Network (ITN), one of the largest government-funded clinical research networks in the country working to establish new treatments for diseases of the immune system. 

This is a tremendous honor and well-deserved appointment for Dr. Nepom, who presently is director of Benaroya Research Institute (BRI) at Virginia Mason. He will maintain both positions with BRI and the ITN, providing scientific oversight and management. The ITN appointment includes a $1 million management contract for BRI in 2010, confirming the institute’s international leadership role in immunology research. 

Attached is the press release with more details about the announcement. It will be distributed to the media and other audiences Tuesday, April 6. Please join me in congratulating Dr. Nepom and thanking him for his invaluable leadership in advancing science and eliminating autoimmune diseases. 

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Hmmmm……………..So what can our Immune systems tolerate??….Can we turn down the volume??…..Can we locate the mutiny in the Immune Army??  

I think I’ll try to pay Dr. Nepom a visit and see where we are at in all this. (Remember: Dr Nepom was the first doctor in Washington that I found that endorsed Professor Slavin’s MSC protocol). Dr Nepom then referred me to Dr. Kita. 

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Don’t get me wrong CCSVI is a great discovery and will help many when properly implemented. All that I’m saying is…..Eliminating CCSVI is not the end all…….and we need to stay focused on the “Cake”. 

Be Well 

Todd

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