March 2010


Was stem cell an A+?............I wouldn't go that far.

There is no doubt that if I had the money and the time that I would do it all again…..deffinately.  And after six+ months…….I don’t believe that I have seen all the gains…….. that I believe…….are still to come.   

I’m settling back into work and have taken on the huge task of repaying what is still owed on the procedure and covering bills for 4 months of lost work time.  Things cost a lot more than I had anticipated (isn’t that always the case) and I missed more work than originally planned……but things have settled down and the “Small’s” are moving forward.   

I feel much better than before I left for MSC treatment.  My fatigue is pretty much gone and now my frustrations are left solely with “neural conduction”.  Simply put:  the message from point A to point B is not consistent/weak.  Example: “Lift knee and move foot forward”.  Sadly……thats how it is when you get to the stage of MS that I have…….every step…..you have to talk yourself through.  This is something that can’t really be seen by others. (Maybe a concentrated look on my face while walking) 

Trust me when I say:…….”Things are slowly coming more naturally in terms of mobility”……I still take the falls…..but now they are not so much of a surprise. The falls are more calculated and actually……I have fewer falls….come to think of it. 

Hmmmmm……………. 

And more good news on the bright side……I say that the communication is “weak”…..as before it was mostly non-existent.   

People say I look better.  And they are right…..I have put on some needed pounds and am much, much stronger in the legs and upper body/core.   

Mentally…..the procedure has been a Godsend.  Gone are the feelings of: “What do we do next.”  Gone are the fears of losing my job due to disease progression.   

I’ve become very impatient with the gains I’m seeing though.   

Wait a second………I said the word:   

“Gains”

that’s right……”Gains”   

Ask any person you know with MS and they will not mention the word “Gains” in regards to physical movement.  The individual w/ MS may have grown as a person (mentally or emotionally with acceptance of the MS Dx) but you will rarely hear a person w/ MS say they have had “Gains” in terms of mobility or physical abilities.   

This is what keeps me hopeful for the future and why I am also so frustrated with the slow progress. After 17 years of slowly watching the disease take from me my mobility and strength……..you can only imagine my impatient’s with thoughts of:…….  

…….”I see small improvements!”……..”So why can’t it go faster!!!!!!!!!!!!!!”……I keep asking myself  

Yes ……. the healing has been slow, (like:  a snail’s pace), but I believe it has begun. 

I think back to September…..before I left for transplant…….I honestly used to wonder:……

……..”What will I do if things don’t work in regards to this procedure?”  

“How would I make a living?”……I kept thinking to myself. 

 Scary thoughts.  Now all I want to do is see things pick up here in the shop so I can start working some overtime and make some money!!!!!!……LOL  

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The kids have started Baseball/Softball and that makes me happy….I love watching them do good in a sport that I never had the coordination to be successful at.  Lauren started the year where she left off last year w/ a hot bat.  (Nice double with 2 RBI’s)  

Nate is on a new team and it ramps up the first of April. 

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I am still  steady with the exercise and workouts at the gym and home. I have good days and bad…….but constantly my numbers at the gym continue to slowly improve w/ regards to strength and mobility.  

I have very high expectations…..so my progress after MSC has not been at the speed I would have hoped.  But when you can honesty use the word “progress”……. when talking about how your dealing w/ the MonSter then………… 

……….”you should just be thankful” …….as Mom would say.  

1st Semester Grade:….   B-

(Six Month Grade)

Be Well  

Todd

When it comes to MS infomation........the "Zen Warrior".....as he likes to call himself.....is one of the best sources on the web.

Marc is one of the best sources of MS info I know.  I like reading his stuff because he is always very thorough……and gives it to you straight. This last Sunday he now speaks from experience with regards to being one of the few pioneers involving CCSVI. 

CCSVI is the hot topic around the MS community. Marc did and awesome job in explaining the exploratory/repair procedure that is required before the decision is made to proceed w/ surgeory…..or not. 

again the link: 

http://www.wheelchairkamikaze.com/2010/03/details-on-my-ccsvi-procedure.html 

  

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Marc has a way w/ words…….and while reading…..the then 42 comments from his followers……I came across this: 

Marc writes: 

           “Educate yourself,….. advocate for yourself,….. 

……….. and don’t lose track of the fact that despite the disease, life can still be filled with grace and beauty. It may take a bit of rummaging around to find it, but it’s there, and the work required to live in the moment and take responsible (ity)  for your own emotional well-being pays off exponentially.” 

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Well said……..I thought to myself. 

Funny how a lot of us MS’ers share that same Crystal Clear Credo. 

Be Well 

Todd

"Lokomat" gives you that little push......to keep things rolling w/ regards to mobility

March has started out great.  On Monday…..March 1st…..I had my best “Lokomat” machine training to date. 

The Saturday (2/27) prior to that Monday…..I had finished taking the last of my antibiotics for the wicked sinus infection that visited me in February. 

I walked into the gym that Monday morning and knew something good was about to happen. 

With “Lokomat” training….. there are two very important walking variables that the machine takes care of for you. 

 #1 Guidance Force – the machine has the ability to walk you on the treadmill 100% if it needs to.  The lower your guidance force……the more work you are doing. 

 #2 Weight – The machine has the ability to take  your weight out of the equation.  Again……the more weight you bare…..the harder you are working. There have been times when I have walked on the Lokomat w/ 70% guideance force and baring all of my own body weight

Before that particular Monday (3/1)……I was stuck in a rut w/ regards to the guidance force. For months……..I tried, and I tried……but I was only able to get to 60% guidance force…..and when the trainers took it to 55% I would almost always fail after a few minutes of trying and I would usually shut the machine off due to he fact that I was unable to keep up the walking pace

On Monday , March 1…..that all changed…..I was down to 40% guideance force for some time and 55% and under for the whole session.  We finished and the trainer said to me:…..”Wow!…. that was your best session yet.”  I went home thinking it was some sort of fluke or that he machine was broken. 

*** (Each one of my “Lokomat” sessions is between 45-55mins. We walk a mile+ at slightly varriable speeds…..1.28 – 1.44 MPH) ***

Well……the machine was not broke and since that day…..My last three sessions this month were just as good…. if not better than 3/1/2010.

We are now seriously making some headway at the gym and the muscle communication is still getting better w/ each passing month. This last Friday (3/5)……I attempted 25% guideance force and was able to hang on for about 5 minutes.

So………….

Just when you think things are no longer progressing via the stem cell……small little mobility victories come along and give you that tiny incentive to keep pushing. We are now getting into the mobility gains that I have waited so long to see from this expensive little procedure.

Before stem cell……I had the confidence to take unsuported steps (without cane)  maybe twice in a two year period leading up to the procedure.

After stem cell……(since October)…..I have had the confidence to try walking unsuported on a monthly basis.

Lately……the last few weeks…..I’ve tried every week to go for it. 

I continue to get better and better on the bike each day.  Tonight…..a co-worker told me to “Slow Down!!!”.  “Cool”…….I thought to myself.

I’ve also had another improvement in the mobility department.  Lately my toes are pointed more strait while walking…….espcially on the “Lokomat”.  The trainers at “Pushing Boundries” have complained since day one that I sort of: “waddle like a duck”…. when walking w/ my toes pointed outward. The last five or so trips…..Ive been able to break that ugly habit for the entire “Lokomat” session.

Hmmmm………..got to keep pushinhg……

You know I will.

Be Well

Todd

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P.S. A big week of basketball as the Washington Huskies try and make the NCAA tournament. Two more wins and they should be a lock.  Some of us miss the Seattle Sonics not being in town anymore.  The team now in Oklhoma City…..looks to have one of the best players in the league and will no- doubt make the playoffs this year

Kevin Durrant drafted#2 in 2008 by the former "Seattle Supersonics" is now...one of the best players in the league.

The West Seattle Eagle's Club never looked so good on the inside........the "Regular's" down in the bar were like "What the _______?".....

Happy Birthday Troy!!!!!!!

(nice job Jill)

Troy is another one of those guys that……If you could bottle the personality……you’d put “Red Bull” or “Rockstar” energy drinks right out of business. 

 Troy turned 40 last night……..and consistant with the Fulmore style…..You knew this was a night where you had to be there.  A “no-miss” on the entertainment calender……so to speak.

It’s always great to see everyone…….I mean……these people are so cool and have done a ton for our family.  I didn’t want to leave last night. Julie and I hung out as long as we could.

Hmmmmm……..I don’t think I could have pulled this one off a year ago.  I felt good all night and feel like I can comfortably pull nights like this off again.

It always sucks sitting on the sidelines at these dance parties……but not last night……not with those people.  Those people are “golden”.  People were constantly coming up and checking in and it was pretty cool.

Thanks for the invite Jill and Troy. Awesome party.

And Troy………the dance moves are starting to wear on me…..maybe you looked over and saw my lame attemps.

Baby steps…I’ll get there…..You rock man!!!!!

Be Well

Todd