November 2009


Update:

Question:…”How many steps does a normal person take in one day?”

It just looks so easy.......right?

I’ll bet…that before I left for my stem cell transplant… my walking had diminished to the point where I was probably taking 500 step/day or less.

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Julie and I were talking about “Pedometers” the other night.  She told me a friend of hers bought one and started a new diet in which she was to take 10,000 steps/day. To lose wieght.

Hmmmm……………

 

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At each Lokomat session…I seem to be taking between 2000 – 3000 steps.  I’ve also been incorporating the elliptical and I’m in the process of working my way up to 2000 more steps daily(Goal: 4000/steps daily). I have had 18 “Lokomat” sessions and am now going 5 days a week. 

I’m not really focused on how many steps I take in the pool…….just as long as they are quality “perfect steps”.

People see me during the day and must wonder if this stem cell process worked or not.  Now that I have the energy to work out everyday…….Let me be the first to tell you……it most defiantly did work.  I’m much stronger and am headed in the right direction in terms of rehab.

Am I overdoing it?

Not when I can’t wait to get back to working out as soon as I’m rested.  It used to take a day to recover. Now……….about 12 hours.  Soon………maybe only a couple of hours.

Baby Steps.

Things seem to be progressing.  It will take some time…….But the trainers at “Pushing Boundaries” see the constant improvement.  I have been getting some massage therapy and the lady said to me the other day that she can feel the increased muscle in my hamstrings.

I know people that see me during the day may not notice a difference in my mobility……….but I…and a few others know what is going on in the gym……and it seems to be getting a lot better.

I had my best “Lokomat” this last Friday.  I went 55 minutes and was baring a lot of my own weight.  The guidance force was at 80% for just about the entire time.

By comparison……..my first “Lokomat” was 20min, the machine supported just about all of my body weight, and the guidance force was at 100%. I came home that first day and had to nap for 2 hours. I also wondered if I would be able to make my 2nd “Lokomat” session….that at the time…was another day and a half away. 

This last Friday…..after my 55minute “Lokomat” session I came home…….had no need for an afternoon nap……..and then worked out again that evening for 20 minutes on the elliptical. Taking an additional 1500 steps. Can’t wait for Monday morning’s work!

This is going to work.

It’s just going to take some time and………..

Baby Steps

Be Well

Todd

Let me introduce this incredible person to ya…….. 

Her name is: “Julie”

She's "The Rock"...Not only for me....But for everyone that she comes in contact with. Like: "Pee's" and "Carrots".....Like: "Bee's" and "Honey".

 

Your only good as the people you surround yourself w/…….and that is why I constantly tell her…….“Your Stuck w/ me”………

  

She just laughs……….

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Imagine this:……………..

It’s the biggest fight of your life………You’ve worked your butt off for this championship bout…. but you’re an extreme underdog……….

People say the odds are on the other guy (MS)…….

So what do you need the most in the biggest fight of your life………..????

You need the best corner (cut)….. (WO) man in the business……someone that believes in you…….someone that has trained w/ you from the start.  Seen your sacrifices………and believes in your ability……even when others don’t.

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…….It was the wife’s birthday a few days back and sometimes I feel like the luckiest guy on earth that she has stood by me through all this.

Pretty amazing………

Happy Birthday: Julie

Can You count the forehead wrinkles?

So……to answer the original post question:

“How’s Todd?”……….”How’s Todd?”……….”How’s Todd?”……….”How’s Todd been feeling?……

Answer:

“Julie is doing okay………..and that is what it’s all about…….(for me)

Love You Babe’

More than Thankful this year and for all the years.

Have a great holiday everyone.

Be Well

Todd

Well..?..........not yet.........but soon.

8 weeks post transplant and things seem to be progressing smoothly. Physically.

My desk tells a different story……I’ve got a stack of paperwork that wants to sidetrack me………Tempting to just sit there and worry bout money, bills, updating friends, family, doctors etc., etc…….but as I wrote at PLM the other day……..I’m just going to put my head down and go for working as hard as I can and trying to get as strong as possible before the new year.

I’ll start looking at the financial damage come February/2010.  I’ve spent this much……come this far……….and I want this walking thing so bad……..I can taste it……..

And I get what I want…….LOL……

My wife sure seems to spoil me that way……so do the kids……so I owe them, at least,.. this walking thing…….. Right?

Last week was a great week.  I worked out 7 times in six days.  Took a few steps here and there but mainly,  I was so tired after each day……I didn’t really worry about trying to do the solo thing.

My P.T. lady,…..whom I’ve had now for three years,….has always spoke of the “perfect step”.

I think I’m slowly starting to figure out what the P.T. lady has meant all this time….. (thick headed males like myself are always the last to know – LOL)

Now that I’m on a “Lokomat” machine,….I get 4o-45 min of my “old gait” each visit.  The personal trainers there tell me that walking again will require me to re-establish muscle memory.

They use this as an example:

“Todd”… they say……..

……..”you don’t tell your heart to beat”………”you don’t tell your lungs too breath”……..”and you don’t tell your legs to walk”……….

“There are too many pieces to the walking puzzle”

Hmmmmmmmmm…………………………….made sence to me.  Finally!!!!!

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The goal is to now keep reminding my body each day of the perfect step.  This morning at “Lokomat”… I inquired about doing “Lokomat” five days a week.

I meet w/ Dr Yu (My P.T. doctor) tomorrow and we’ll discuss “Lokomat” 5 days a week.  If he gives me the green light,….I’m going for it.

The progress on the “Lokomat” continues to be just that…….

 “PROGRESS”. 

Each minute on the machine continues to get better and better.  Each day I continue to get better cooperation out of my left (weak) leg.  The trainers at “Pushing Boundries” are slowly bringing down to the guidance force of the machine.  (guidance force is the amount of machine help I am receiving while on the Lokomat)

The last three days……..my workouts have not been what I have hoped only because of time.  I still think of what I can be doing at my next work out……even while I’m working out…….I’m thinking about how I’ll carve out time for tomorrow.

This is going to work.

I’m not giving up on the swimming……I just need to figure how I’m to incorporate the swimming with the Lokomat on Teusday’s Thursday’s and Saturday’s.

I hope you guys see what’s happening here.

The fatigue seems to be gone (post stem cell transplant) and I’m getting stronger each day.  So far so good.  Don’t worry bout’ the rest………That’s what Saturday afternoon and Sunday’s (football) are for.

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I’ve got a nice update from “Shah” the other day.

Shah writes:

Shah’s Exciting update 6 months post transplant

Just when you think the repairs might be winding down, you get another surprise boost !!
on Friday while at PT I got on the precore elliptical excercise machine and managed an 8 minute session. It felt great. Last time i was able to do this was 18 months ago ! throughout the workout tingling in the bottom of spine was pretty significant.
Then on Saturday night, I decided to lift the canes in the air and try taking a couple of steps on my own, and managed to take 10 slow steps without lowering the canes !!!

(I think i have intercepted some of Todd’s mojo).

I repeated another set and got to 15 !! it was the best gift to get right on the eve of the 6th month post transplant. Tinglings in the spine have been elevated and still continuing on. the 6th month brought a lot more stamina around, both in upperbody workout and walking (canes).
Every chance I get I stretch my legs and try to increase the range of motion and blood flow.
standing posture and balance has shown more improvements. Knee-flexion alternation between left and right knees while standing is happening a lot faster (8-10 seconds delay reduced to 1-2 seconds !!) which is critical in walking speed.

All in all has been the best month so far. Walking excercises will be my focus for the next couple of weeks. My optimism is at its peak,

Best to you all,
Shah”

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Hoping to follow in “Shah’s” footsteps. 
The difference between “Shah” and myself………..
“Shah” takes Copaxone.
I take Tysabri. 
We are about the same age.
I have been diagnosed approx. 10 years longer than “Shah”.
“Shah” seems to be catching me very quickly in the mobility department. 
I need to fix that.
I will.

Be Well

Todd

Remember:

PML =Progressive multifocal leukoencephalopathy

And

PLM = PatientsLikeMe (.com)

Well….. here I start to rip on the Biogen/Idec Corp. for the standard corporate company “Sho…. Sho-ing” the whole: 24 diagnosed PML  cases with regards to Tysabri.    (the company not allowing the negative results to be made public via their website).

I digress.

My fellow Tysabri comrade, “syl”…. has been a PLM member for about as long as me…. 3+ years.  Her info is always credible and she has helped many people at PLM w/ her verbal contributions.

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“syl” writes:

Thought everyone might be interested in this info:

Makers of Tysabri, Raptiva Join Forces to Research Rare Brain Infections

Three drug makers are forming a consortium solely dedicated to researching cases of a rare but potentially deadly brain infection linked to users of their immunosuppressive medications.

The companies are going to focus on studying progressive multifocal leukoencephalopathy (PML), a condition which is increasingly found in patients taking Biogen and Elan’s multiple sclerosis and Crohn’s disease treatment Tysabri, the arthritis disease drug Rituxan by Biogen and Roche, and Raptiva, the psoriasis medication made by Roche unit Genentech.

PML is most often found in people taking Tysabri. There have been 24 cases of the infection in users of the drug, which was pulled from the market in 2006 soon after its launch because of reports of PML in users. The drug was later allowed back in circulation with a stronger warning label added.

The infection is triggered by the JC virus, which most people carry without ever suffering any adverse effects. In some people, however, the virus attacks the central nervous system, leading to decreases in neurologic function and death.

By lowering the body’s immune system to treat multiple sclerosis and prevent flare ups of arthritis and psoriasis, Tysabri, Raptiva and Rituxan leave patients far more vulnerable to PML and other types of opportunistic infections.

PML Research Consortium Planned

The companies’ plan to jointly research PML cases in patients taking their drugs was announced this week at a covering various aspects of the infection at the New York Academy of Sciences Tuesday, according to a report in The Wall Street Journal.

As part of the consortium, a global database of reported PML cases will be established to help predict, prevent, and treat the infections, officials said. There is concern that the number of PML cases worldwide is under reported due to physicians not linking it to use of the immunosuppressive drugs.

http://www.attorneyatlaw.com/2009/11/drug-companies-joining-forces-to-investigate-…

syl”

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Some may still think that Biogen/Idec can hide behind this new “committy” the have established.

I say: “At least they are doing something”

Let’s see where this study ends up and just how fast we can see results/answers.

Be Well

Todd

Tysabri is like sailing Puget Sound........

Taking Tysabri is like sailing Puget Sound........

This post is a tough one to write.  It was tough in the doctor’s office when Julie and I made the decision to go ahead w/ Tysabri treatment (2006).

Taking Tysabri is still mentally tough to this day.

Supposedly there are some people who read this blog that care about me. I should be careful of what I say…….right?  This blog is primarily about awareness.  So let’s keep it there,… shall we?

First off.  “Wiki” time:

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

Here is my two cents on the latest PML scare.

As the number of PML cases rise…….The number of people who make the decision to start Tysabri also rise incredibility.  Even with the latest PML findings,…Tysabri’s popularity has taken off.  The risk factor has either stayed the same or even lowered due to the new massive numbers that are now “flocking” to try the latest in MS therapy.  My JC virus (the PML trigger) risk is monitored very closely. And part of my reasoning for Stem Cell was primarily to get away from this constant PML scare.  I’m hopeful that MSC treatment will get me out of the way of Tysabri’s grip one day.

Eyes wide open to the risk……always……

It’s a double edge sword though………

Plain and simple: Tysabri has been good to me!!!!! It almost seems that it was tailor made for my MS.  Dealing w/ all symptoms except………Mobility.

I have followed this drug since its infancy……

It used to be called Antegren……in 1996 I wanted so badly to be in a study at the University of  Washington for Antegren.  I had read everything I could about the drug.  I wanted to be part of that study so bad.  I knew this was the drug for me. I couldn’t wait for its release. Finally…in 2006…..my wish was granted.  I started it and it immediately the drug started to do its job.  It got me back into the workforce.  It gave me my life back.  Maybe saved my marriage.  Stabled a very unstable MS “ship” that seemed to be sinking rapidly just before I started it. 

Before Tysabri I had thoughts of permanently disability.  Walking/mobility that was quickly going into the toilet. Mental unstableness. Massive Fatigue. Sleeping all day. On and on the MS symptom list grew.

Now……….

Why is it that …I can’t wait to be out of the drugs way.

Simple:

Its stories like these.

Links:

1st from a medical standpoint:

http://app2.e2ma.net/campaign/31451.748c4f23ddf69d00cfbe3c647d0a6ea6#News

And a link from a pharmaceutical manufacturer’s ethical standpoint:

http://industry.bnet.com/pharma/10005261/fda-looking-to-regulate-biogens-invisible-salesforce/

It maybe a tough read for some that are not familiar w/ the drugs history. Here is some Wiki time for those not in the know.

Wiki link:  (remember: Natalizumab is Tysabri)

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

Here are some of highlights from the business ethics article 

“one might speculate that the invisible finger of Biogen was behind the explosive online propaganda campaign (emphasizing the drug’s benefits) that erupted following the 23rd and 24th confirmed cases of PML in patients taking Tysabri (in October – early November).”

“By the way, I was just informed that PML-patient # 14 passed earlier this week. Funny thing — her death didn’t make headlines — anywhere. If confirmed as the fifth PML fatality related to drug therapy, how ironic that patient empowerment has already been betrayed by its chosen medium.

Again…….This post is not meant to scare…….Just be aware.  Know what your getting into before you make the leap to this drug.

Things are not always as they seem………..

The “risk” thoughts are always there……..always in the back of your mind ……….always…..

“What if….?”

Be Well

Todd

Soon

Soon.....

Six plus weeks post transplant and things are good.

Scratch that……….

“Things are great!!!!!!!”

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It was an incredible week…………It all started on Monday:

“Julie” Cubed – (to the power of three)

Three “Julie’s”

Monday of this last week I was pretty run down.  Tysabri Tuesday was the following day …and just like every other month …I was ready.  My wife (Julie) told me earlier that our friend  “Julie” wanted me to meet another “Julie” at Starbucks at lunch time.  The “Julie” I met had been diagnosed w/ MS for about the same amount of time as me. (approx. 16 years) She wanted to know all about the stem cell procedure.  I had gone to “Lokomat” training Monday morning so… I was walking like crap come lunch time.

My friend “Julie” gave me a ride down to the beach and held my hand into the Starbucks.  The woman that I was meeting must have thought I was in really bad MS shape. Three “Julie’s”…….at least I wasn’t going to forget names.

What a difference the next day made.

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Then:

“T” Cubed – (to the power of three)

 Tysabri, Tuesday, Two Step

The next day (Tuesday) I received my monthly Tysabri infusion.  I did not plan on working out that day as I had two very lengthy appointments at two different hospitals.  I was not walking well that morning as I met w/ Dr. Kita before my treatment.  I updated her on the fact that I had been working out real hard and had the energy to do so.  I told her that… just the morning earlier… at my Monday morning “Lokomat” session,… I had felt my left “hip-flexor” muscles “engage”. I told her about how I felt that I had control of those muscles for a little bit till they quickly became exhausted. 

I felt those muscles for the first time in years.  I felt that I could tell my “hip-flexors” how much to contribute to the exercise.  I told her that once the communication was established….my left “hip-flexor” started to tire rather quickly. 

For me it was a very exciting day and was my excuse to why I was so tired as I met w/ her that Tuesday morning.

I would not know how big of a deal that communication was until around 11:00p Tuesday night

Tuesday was a long day.  Tysabri in the morning then an AFO (Ankle-foot othesis) fitting in the afternoon at another hospital.  I got home and was pretty tired from treatment and all the running around.

But late that night something happened………I took two steps……all by myself.

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Then:

 “Walk Wednesday” Cubed (to the power of three) (walked a little 3X – Wednesday) 

The “Walk’s”

In the middle of the night…I decided to walk to the bathroom (no cane).  I walked a little too and a little on my return to bed.  I woke Julie up and told her that the stem cell and the workouts were working.  For once she didn’t mind that I was waking her up.  I now had a witness.  We walked a little more that morning before I took off for “Lokomat”.

It was November of 2007 since my last steps………free of the cane……with the confidence to balance by myself, and then have the ability to get from point “A” to point “B” aided with nothing else but myself. 

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Then: 

Thursday and Friday……..

……..two steps turned to eight and Friday’s walking was about the same.   

Now Saturday….during my swim this morning (walking in the water) I can feel my left and right hip flexors “fire” and me calling the shots (in terms of control) just like old times.

This is huge for me.  I’m starting to gain a little on that much needed knee flexion. (Hamstrings). Once I can regain that nerve connection…I should then have all the pieces to walk independently again!!!!!!!

So here is your six week post transplant update……..

“IT’S Working!!!!!!!!

The beautiful thing is that I have the energy to workout hard everyday.  It’s starting to pay off.

Post Stem Cell improvements:

 

Less fatigue since transplant – sustained

Improved left arm circulation – sustained

A continually improving gait – sustained

Improved communication with leg/core muscles – sustained

Establishing some sort of Knee flexion. (Both legs)

I’ve have also had the energy to add some more work to my work-out schedule. 

Lokomat is still three days a week. MWF for one hour followed by core training w/ personal trainer.

I’ve also now added swimming on my off days: Tuesday, Thursday. Saturdays for 1 hour.

This is going to work!

Exhaustion never felt so good.

Be Well

Todd

healthcare1

Let's not get side tracked here.....What's the issue?......Is it healthcare reform?.......or is it Nancy Pelosi?

I’m  very lucky in the fact that I have been given this opportunity (stem cell). I have an obligation,…not only to myself and family ,…but now to others…..to make this work.

No pressure……..

Pressure is working and raising your kids right,…..keeping them out of trouble and on task. 

Pressure  is being in an abusive marriage w/ no way out.

Pressure is raising kids as a single parent.

Pressure is being accountable for others beside yourself.

Presure is being handicap and having no caretaker,… limited funds and no resources. 

Just a few examples…

…On…… and on……..and on……we could go……

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Julie and I look at like this ….”My situation could be so much worse.”

I am lucky in the fact that I have a very loving and supportive family.

Is all of this costing me a fourtune?……….YOU BET!!!!!

But I’ve moved on with the cost for right now.  I will work my butt to make it work.  I told Professor Slavin the other day that I want to be the “poster boy” for his MSC protocol.

And I will.

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I think often of the people who have MS and will never have the opportunity to do the things for their MS based solely on the issue of money. 

Sad Really.

I know,….I know…..lets see if all this stem cell works first.  right? 

But there are a lot of treatments that have already worked for me in my MS fight.  Some MS’ers will never have the opportunities that I have had based solely on income and insurance.

This is why I’m a such a healthcare advocate. 

Something has to be done. 

The time was years ago already!!!!!!!

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Nancy Pelosi and the house will be featured all this week.  But party affiliation should not be the reason,…and yet it will be the sole reason for criticism of the whole plan.

Sad really.

But those without health concerns will dominate the Media this week.  Be prepared.

The media will say: ……”What is the other political party thinking?”

Who Cares!!!!!!!!!!

Just get it done already!!!!!!

The bigger issue us always missed. 

 Can we get this done?

Healthcare?

I hope so.

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Thank you Uncle Ed for sending me this next link.  Will the insurance industry, money politics, lobbyist, and greed get in the way of what need to be done in this country? 

I hope not. 

Just remember:  It will all be Nancy Pelosi’s fault if this doesn’t happen.  She already sounds like the perfect scapegoat.

That Damn Nancy Pelosi. 

Just who in the hell does she think she is!!!!!!!!

                           VS.

Hate Monger definition:

 –  a propagandist who seeks to provoke hatred and prejudice (political party non-exempt)

Do yourself a favor and watch this 5 min. clip at least twice before you render me any anti-healthcare hate mail.   

Link:

http://www.pbs.org/moyers/journal/10092009/watch2.html

It will keep your focus on what needs to be happening here.
Be Well,
Todd

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