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 

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