October 2009


 

Wiki Time:

http://en.wikipedia.org/wiki/Th17

 

one day

One day,....they'll find that "Golden" cell that may just un-lock the MyStery

 

Well…..just getting closer and closer to busting this MS thing wide open.

Some may already know this but,…. it is the way that our immune system attacks our own bodies and does the damage that it does. 

That is MS…..in a very large nut shell.  

 

So………What are researchers doing? 

To some………….not enough…….but to others (scientists),…..its complicated.  The effort is being put out there,….but for some……it can’t come soon enough.

So with that……..I report the latest from my neck of the woods (Seattle).

Looks as though the BRI here in Seattle picked up some new talent.  Here is an article on that and what she brings to the group.

Link:

http://www.benaroyaresearch.org/our-research/faculty/estelle-bettelli

and her work:

http://www.benaroyaresearch.org/our-research/laboratories/principal-scientists/bettelli-laboratory

Also………….

Here is a NMSS news clip from last months issue from the Northwest.  I’ve met Dr. Nepom……He is a very “sharp egg”.

Dr Nepom was fetured on the cover of the NMSS fall 2009 new letter you can download a “PDF” copy of that news letter here:

http://www.nationalmssociety.org/chapters/WAS/chapter-news/chapter-news-detail/index.aspx?nid=2235

“Neurology”……meet……”Immunology”

It’s the combination that us MS’ers love to see working together.  Seeing how the two go together so beautifully in “The Fight w/MS”

I honestly believe that it will take work of Neurologist working with Immunologists to decifer “what” has eluded us for so long…….

And “What is that?”…..you may ask…..

……a “cure.”   

Shhhhh………!!!!!!

a word not to be taken lightly.

 

Remember……..

Dr Nepom is the one that validated the “Slavin” protocol earlier this summer when I met w/ him at the BRI “Science Friday”.  It was then full speed ahead on the MSC transplant.

Thank You again Trish Markey.

 

Be Well

Todd

Al and Sharon are always in every morning to check on you and to check on their awsome staff.

Al and Sharon are always in every morning to check on you and to check on their awsome staff.

Link: http://pushing-boundaries.org/index.html

 

You could smell the testosterone from the parking lot……..(LOL) just kidding. But upon entering “Pushing Boundries” the first day,…..something told me I was at the right place.

They don’t waist alot of time and if you are willing,…..the staff at “Pushing Boundaries” will work your tail off…..and for me…….that exactly what the doctor ordered…..IMHO.

 It’s getting better……..and this last Friday I was done for the week and now I can’t wait to go back Monday morning.  I walk on the “Lokomat” for about 45 min. and then the rest of the time we work on strengthen the core and legs.  Each day it is getting better.  I can see the body slowly remembering  how to walk on my off days.

 

People make walking look so easy……Let me assure you……….it is not.

 

The “Lokomat” is great for reminding your body of how to put all the pieces together. But I think what comes after the machine work is what is so vitally important.

 

I am very impressed with the staff at “Pushing Boundaries”.  They are very knowledgeable and were able to find my areas of weakness very quickly.  The difference between “Pushing boundaries” and PT at a hospital is this:

– In a fifty minute hospital PT session you will be shown how to do the exercises at home.

– At “Pushing Boundaries”   ……your doing the work right then……a minor explanation and then just DO,…DO…DO…..till you can barley do anymore.  Sure they don’t want to push us MS’ers to hard.  But this particular MS’er wants to be pushed.  They have figured out that my muscles tend to respond a little better when put under a little load.

Some of my muscles,.. I have lost communication w/……..but the staff of “Pushing Boundaries” will sit there and work w/ you until they can get that muscle to: “turn on” again.

We have found weaknesses in places that I didn’t even know were weak. 

NO WONDER MY Walking SUCKS!!!!

This is going to work……I know it.

Link to the staff: http://pushing-boundaries.org/our-team.html

 

Today was my fifth visit and we are already seeing improvement.  All be it small…..still the communication is there……and this is very encouraging for me. 

Marty and Jerry (My P.T. guys) know how to exploit what needs to be worked for me,….and so far…..I am very grateful………Full speed ahead!!!!!!!

Don't let the smile fool you.  These guys are not really into socializing. Ben here, is going to work you.

Don't let the smile fool you. These guys are not really into socializing. Ben here, is going to work you.

Pushing boundaries is not for the faint of heart……expect to work……and then sure enough….you’ll see results.

Awesome Place.  Thanks Guys.

 Be Well

Todd

 

Well……A little over one month post transplant and all is well.  Sorry I haven’t been posting more,… but still,… everyday I am thinking of what it is I can do to get stronger and improve upon my condition.

I’ve been working out very hard and I believe my strength to now be back to where it was before I left for the trip.  But for me,……that is not good enough and I will be attempting to work my butt of on this rehab till the first of the year.  I want so bad to do this walking thing and with all the work I’ve been doing with the personal trainers at “Pushing Boundaries”…….It seems I have some work to do in the strength department before I can get walking without a cane.

My left hand circulation is a sustained improvement since transplant but it is hard to gauge what exactly is going on in the mobility department because of my extensive workouts. I am always very tired after.

When I am rested though…..I am feeling good and walking good.  Hopefully this weekend will be better than last as it took me all last weekend to recover from my two workouts at “Pushing Boundaries” the week before.

I know what people are thinking…….”Todd,…don’t over do it”. 

I have one thing to say……..lets try it my way this time.  When you have MS…..people constantly tell you that you have to rest,…”You have to rest”

I believe that there is no better person to guage than me.  All I know is that right now…….I can’t wait to get into see the people at Pushing Boundries on Monday.  They are pretty good at judgeing my limits.  And right now…….It’s just the way I like it……”BALLS – TO  – THE – WALL – BABY!!!!”

I’m going for it.  It is going to work…..I just have this feeling.  So far the exercises that we have been doing are all pretty new to me and although I do not have the greatest ability to do them all……the muscles are at least engaging like they want to do them.  After every workout……I walk away with the feeling that what I just did was better than the time before.  I believe we are headed in the right direction.

This is going to work

Baby steps.

Be Well

Todd 

 

Sista' on the left.....I know what your thinking....Yes,.. she is way prettier,.. but my parents still claim that I was not adopted.

Sista' on the left.....I know what your thinking....Yes,.. she is way prettier,.. but my parents still claim that I was not adopted.

 

My sister, the other day, she forwarded me a very useful link…..

 

Here it is:

https://www.mymsmyway.com/mybraingames/index.php

 

It should help some of us MS’ers with the cognative issues we face from time to time.

Thanks Dawn, Much Love, and Be Well

Todd

 

IMHO we in a America have a “NOT FOR PROGRESS” based healthcare system.

Pardon my rant here about Dr “Butt-head” and the “For-Profit” based healthcare system we have. 

And this is just one of the many examples of why I feel this way……..

  

Just another story to add to my disappointment with the healthcare system.  Only one problem……….the story is not supposed to include me.

 

It all starts in October of 2007………….

 I agreed to participate in the Fampridine-SR study at a Hospital here in Washington.  After a few visits w/ Dr “Butt-head” the study agrees to accept me even though I use a “Bioness-L-300”.

Fampridine-SR is a new drug manufactured by Accorda Pharmaceuticals and the drug supposed benefit is that it helps an MS person w/ walking speed.  An improved gait.

Fampridine-SR is basically 4-AP in a slow release version.  The federal government will have a decision on its future here by October 22nd.  Word around the MS community is that it will be approved.  A lot of MS people have been waiting for this drug to be approved.  Hopefully it will not be delayed any longer.

For me…….Fampridine-SR (4-AP) still provides an energy boost. But IMHO…..my body has become acustomed to it and I am slowly upping my dosage now that I am out of study.  My gait no longer is impacted by 20mg/day. I kind of look at it now,…..like a little MS “energy-boost” band-aid. Each 10mg tablet gives me about 7 hours of coverage.

The first part of the Fampridine-SR study was “double-blind” for the first 12 weeks.  Meaning: You did not know if you were receiving drug or placebo during that time.  I blogged during that time that I was receiving placebo.  A report received in the mail months later would confirm my thoughts.  I stuck w/ the study because I was guaranteed Fampridine after the 12 week period. 

My first dose confirmed my “placebo” suspicion. I noticed an immediate difference.  My gait slowly improved the next few months.  Unfortunately for me my body really liked the drug.  It wanted more than the 20mg/day that the study allotted.  I told the study people of this and they told me that their was nothing they could do and stay w/ the dosing schedule of 10mg/12 hours.  I did.

 

Forward 1.75 years,…to my decision to do stem cell.  I told the study people of my decision to do stem cell well before I went for the bone marrow aspiration in July of 2009.  (I have the emails to prove it).  Dr “Butt-head” informed his staff that the stem cell procedure was risky and that I should be very careful when traveling over sea’s to do any transplant.  I forwarded Dr “Butt-head” the protocol outline of the procedure.  I don’t believe he even looked over what I sent. Dr “Butt-head” then had his staff forward me an article of why I should not proceed with my decision.  I’m not sure if he though that I would read the article he sent.  The article he forwarded me actually validated the protocol that I was to participate in Israel.

 

My response to his staff (via email) questioned if Dr “Butt-head” actually was endorsing my decision to do stem cell.  I did not here a response after that.

Those email exchanges were in June 2009……..

….Two months prior……

  ……In April of 2009… Dr “Butt-head” visited the gym in which I am now doing “Lokomat” therapy.  According to the staff at the gym…… Dr “Butt-head” liked what he saw in the “Lokomat” machine and immediately started to refer his patients to use the devise.  In the meantime…….I continued to struggle along in his Fampridine-SR study.

Never once was I informed by Dr “Butt-head” that I would be a prime candidate for the “Lokomat” machine.  I guess I was too valuable of a “Human LAB RAT” for him and his study.  He had known of my strong desire to improve my walking ability and he failed to mention his new discovery to me the whole time. 

 

After bone marrow aspiration on July 2009 I informed Dr “Butt-head”’s staff of my return from Israel.  Dr “Butt-head” and his staff allowed me to continue in the study right up to the point of me returning for the stem cell transplant in September 2009.

 

Dr “Butt-head” met w/ me upon my exit of the study and wished me luck in the future and to contact him if I needed anything.  He still failed to mention the Lokomat therapy as he was kicking me to the curb along with the Fampridine-SR study.  Dr “Butt-head” was still concerned of the Israeli stem cell validity and saw that my walking that paticular day in his office was extremely poor.  We met for about twenty minutes.  After our meeting, he had one of his assitances wheel me to the parking lot w/ a wheelchair.  My walking was very poor that day.  STILL NO MENTION OF THE LOKOMAT MACHINE!!!!!

 

I now had a new Neuro and a new institution that backed what I was doing 100%. My new Neuro validated the stem cell protocol and informed me of “Lokomat” therapy during my first visit. They also imediately gave me a persciption for 4-AP,….to continue the dosing that I had been doing w/Fampridine the last 1.75 years (remember: 4-AP is Fampridine)

 

Questions:

–         Why didn’t Dr “Butt-head” inform me of “Lokomat” therapy when he learned of it in April 2009? 

 

–         Did Dr “Butt-head” know that my participation w/ Lokomat would disqualify me from participating in the Fampridine-SR study?

 

–         Why did Dr “Butt-head” try to discourage me from a stem cell transplant?

 

–         Did Dr “Butt-head” know that my participation w/ Stem Cell would disqualify me from participating in the Fampridine-SR study?

 

–         Why didn’t Dr “Butt-head” inform me of “Lokomat” therapy once he dismissed me from the “Fampridine-SR study in September 2009? After seeing him for 1 year 10 months……..he must have known that I was a prime candidate……but he still said nothing.

 

–         Why did Dr “Butt-head” tell me to contact him if I ever need anything in September 2009?  Didn’t he realize that he had failed to provide me w/ what I really needed for the last 4 months?

 

–         Did he really think I was stupid enough not to figure it all out?

 

 

In business they say that “Time is money”

In the case of: “This MS patient”…….. “Time lost is Mobility”

Thanks for dipping into my very valuable mobility reserves Dr “Butt-head”.  Your silence may just be the biggest crime of all.

Thanks guys for letting me get this off my chest.  I know Dr “Butt-head” understands.

Even the most selfish MS neurologists know that stress is something that their patients must learn to let go.

 

Done.

 

Be Well

Todd

(Picture from the website).........It had been so long since I last walked,.. that when the technician told me to put my arms down and swing them naturally.....My timing was way off......Whoops!!!......Got to work on that one!!!!

(Picture from the website).........It had been so long since I last walked,.. that when the technician told me to put my arms down and swing them naturally.....My timing was way off......Whoops!!!......Got to work on that one!!!!

 

Sorry bout’ the delay with the update.  Three weeks post transplant and all is well.  Still slowly getting my strenghth back but I have been working out hard almost everyday so it is hard to guage exaxtly where I am for that.

Left arm circulation is still a sustained improvement.  Not much else to report.  Possibly a spasticity improvement……..but still hard to guage because of the extra physical therapy.

 

This is going to work and here is why:

Four words:…………….

 

“Stem” ….”Cell”

 

“Lokomat”

 

And sadly……..the last word is:….. “Money”……

……..(not that I have any right now…..LOL)

 

 

I am so close to this: “walking thing” right now……….I can almost taste it.

I did 25min. on the Lokomat machine yesterday and I walked for the first time in four+ years.  I had visited the gym last Thursday and knew before I even walked in that it was the place for me.

Here is the link for the “Lokomat” machine:

 

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

 

To my fellow MS comrades that are in the same mobility boat as me………find a “Lokomat” machine and make it happen!!!! 

 One problem……there are not that many machines out there yet and the time on one will financially drain you.

 

You’ll need five things to start:

– A sign off from a doctor

– A bone density scan (none weight bearing MS’ers may have a problem here)

– Cardio conditioning to start.

– Money……….lots of it……I don’t think time on the devise is covered by insurance yet.

– Lots of time to dedicate to your rehab efforts.

 

“Jerry”….. who helped me get set up, looked at my personal trainer “Marty” and said:

“He didn’t even cry” 

“Most people cry when they haven’t walked for so long”……….Jerry says to me

 

My response:

“I don’t have time to cry……….I should have been on this machine flippin’ months ago !!!!!!” 

“I’m upset w/ myself that it took me this long to get over here w/ you guys”

 

New Rule!!!!!!…………no crying in Lokomat!!!!!!!…….

……….It’s now time to get to work!!!!!!!!

 

My return to work date may get push back a bit. I think I may need more than just four weeks that I have left on my short term disability request.  The trainers at the gym agree.  We will reevaluate in two weeks.    

Take a look at this machine…

….and now when I tell you that this is going to work……

…you may just start believing me.

 Be Well

Todd

 

One way to "rough-house" with your kid is in the water.  Water gives us MSer's that extra stability to do stuff we could never accomplish out of the water.

One way to "rough-house" with your kid is in the water. Water gives us MSer's that extra stability to do stuff we could never accomplish out of the water.

 

Nate had the day off from school today and we went grocery shopping.  I knew we didn’t have that much time so we skipped going out to breakfast and went for the “Starbucks” drive-thru and then on to “Safeway” grocery.  I figured we had two hours walking the grocery store before I would be totally wiped out. 

So off we went.

 

I hadn’t spent that much time w/ Nate since returning from Greece,… so when we got in the car he asked me the same question,… he always asks:

 

“Dad…….how long do you think it will be before you can walk again?”…….

 …….“Ya know”….“How long will it take for the stuff to work?”……….

He has asked me this same question over and over all summer………..and today I had this picture in my mind of why he always asked.

 

I tried to remember the last time I had “rough-housed” with Nate.  It had been a long time. 

Now,.. it seems like all our time together is about helping me out with things.  Mobility type issues. 

 

“Here Nate,…….give me your hand!”…….I ask

 “Hey Nate………run upstairs and get this for me…….then run down stairs get that for me………….”

“Nate!!!!!!……….stand here and let me grab your shoulder”………..

 “Thanks Bud!”

 “Thanks Bud!”

 Thank you Bud!…….your the man”……………..I tell him over and over……….day, after day, after day……

 

For Lauren it’s the same thing……….but I had good mobility back when Lauren needed it from me.  Now all she needs…..is money and a ride to the mall.  LOL.

 

I wonder what kind of life that is for Nate and Lauren? 

 

Julie always tells me:….

“It is probably harder to watch someone you love go through something (MS)….. than it is yourself.” 

I think she may have a point.  My focus is solely on getting better and very often the people that help me all the time,…..I fail to mention.  It takes a village w/ a newborn baby.  Maybe the same can be said of the disabled person.

 

Nate was seven when I started to build the house……….he’s seen his Dad’s mobility go from: “just OK”………to mobility: “NOT”…………that’s got to be tough on the kid.

 

After I told him that the results could take up to a year to see……..

”Cool!”………… he says,…….….always w/ a smile on his face.

 

 “Dad”…….“Do you think you could coach the soccer team next year when your walking again?”……(they didn’t have a team this year cause there was no coach)

 “Definitely”……….I said.

 

Rehab will cost me a fourtune………in facility time and lost wages………but the window to “rough-house” is slowly closing……..

And all the money in the world may not get the “rough-house” window back open again.  I think I at least owe Nate the best effort I can.  He’s waited four years now.

This is going to work………and I’ll make it work.

Be Well

Todd

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