April 2010


 

"AUNT'E NIKI".........I've been working on my "high kicks"........only 70" more to go.....LOL

 Now………………..

Gone are the “Spoon Theory” days!!!!!!……not that I ever accepted that description of my MS…..I guess I did experience those “limiting mobility days
“.
      

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 As we come up on 8 months post transplant ……..I’m starting to slowly notice something that I believe is worth mentioning.     

I seem to be reeling my life back.     

Not that it had washed out to sea…….but…….things are slowly turning for the better.     

Gone are the days that my life turned in one big spiral. Work, Eat, Sleep, Wake and do it all again. Always treating the MS daily……and come the weekend……..rest,… recover a couple days (weekend) and prep to do another work week.     

On a bad MS day I would be forced into taking a work day off.  Boy……..I wasted a lot of days due to the MonSter.   Days that I would have loved to save for family stuff.  Gone were the thoughts of working weekends before I left for Israel to make a few extra bucks.  I seemed to be getting by last year just week to week. Some days…..day to day……always resting to get through the week.    

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I seem to have my drive back………wanting to pick up the weekend work…….and if I’m not working……I’ve got stuff planned…..I’ve been working around the house and in the yard…..much harder and not needing a huge amount of recovery time.     

Forgoing some rest to get that little bit extra done around the house.  It’s a good feeling.  People ask me what I’m doing on the weekend and I actually have a list. Still working out at the gym 6 hours a week and those workouts are progressing nicely.  Strength continues to slowly increase and the numbers on the “Lokomat” machine continue to improve. (Always walking a mile……now with guidance force less than 60% for 50 minutes).    

Done with the spoons........and its a nice feeling......

 Some of you may not know what I’m talking about when it comes to the “spoon theory”. So here is a link that I found. “Lupus” is an auto-immune disease with some similar symptoms to MS people.   The theory really explains what its like to have one of these disease’s. A good read:   

Link:    

http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/     

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Gone now is the fatigue for me………. and good riddance!!!!!!!!!    

Be Well,

Todd

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When the family sat in Professor Slavin office in Tel-Aviv he promised nothing in terms of outcome to MSC treatment.  He said that they had seen progress in some patients and others did not respond to treatment at all.   

Fish Oil for MS.........I do.

I think I did my homework w/MSC…..I knew what I was getting into………..   

And then………..   

One “60 minutes” segment leaves you with some explaining to do.   

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I watch “60 minutes” every Sunday.  This last Sunday……I watched w/ mixed emotions.  I knew the desperation the patients were feeling.  I was disgusted by the “charlatans” with false promises to the so very weak.  The sick being sucked into: “The Headlights of Hope”.   

I emailed the Doctors in Tel Aviv the other day and I thought I would share.   

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I write:   

  Hello Doctor’s
 
It looks as though there was some very bad press w/ regards to stem cell and its hopes for regeneration/repair of the nervous system.
 
It aired on a very popular Sunday night news segment nationwide.  The program is called “60 minutes”.  This program is so popular nationally…..that in the past……when they have questioned our U.S. government……a Presidential inquiry usually follows the next day.
 
It is a very powerful news show watched by millions of Americans every Sunday night.
 
Apparently……..There were a few individuals who decided they could profit off the ideas that you have worked so hard in your research over the last many years.
 
I thought I would bring the story to your attention.  Here is the link:
 
http://www.cbsnews.com/stories/2010/04/16/60minutes/main6402854.shtml
 
If interested……you can view “Snake oil sales” part #1 and #2.
 
As you can imagine…….I am now being looked at…. by some in the MS community…..as one of those poor souls as portrayed in the two segments of “60 Minutes”…..
……….someone that just threw his money at false hope.
 
I don’t see it that way at all.
 
Your research is documented here in the US and is verified by doctors and scientist a like here in Seattle. And other places through out the U.S.
 
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Question:
 
Any progress being made to either improve the MSC protocol….or any new findings with regards to  mylin regeneration/repair?
 
The beauty about your work is that it was right there, in the national library of medicine for anyone to read.  And I did read a bunch and learned a ton.  This is why I came to you…..this is why…..if I had he money……I’d do it again.
 
I believe it worked.  I believe it’s still working.  I look forward now to the future.  I am happy with my choice.
 
I can write about it all I want……..unfortunately……my words just don’t have the same effect as a damning “60 Minutes” report.
 
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My rehab efforts continue to go well.  The mobility progress is like watching a “snail circus”. But I continue to try as I get stronger and stronger week by week.
 
I have been experiencing greater sensation in my lower extremities.  I think I need to video tape my rested progress.  Just need a video camera.
 
Thank you for giving me my quality of life back.
 
I no longer live my life for my job.  My job only assists me in living my life. That has been the best gift of all w/ MSC.
 
And I think life should be that way.
 
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Let me know if there is any new news w/ MSC to report.
 
My friends and family always ask about the latest goings on w/MSC
 
Be Well
Todd 

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Dr. Gesundheit responded first (within minutes) 

He writes: 

Dear Todd – thanks for sharing this with us. We heard about the “60 minutes” and I ll watch the program.
More importantly, how do YOU feel? Did you see any further improvement?
Please let me know. best regards, 

Benjamin Gesundheit MD PhD 

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So I gave him a quick update: 

Dear Dr. Gesundhiet, 

Yes………..Things are still going good.  I’m back at work and continue to exercise hard 6 hours a week.  Then I’m also able to enjoy my family on the weekends.
 
The lower extremity sensations continue to improve.  I need to video tape my walking independent attempts to prove to people that it’s working…….I guess???
 
I think here in America…….If a person in a wheelchair has stem cell…….well…….if people (media included) don’t see you walking in a couple of weeks…….then they assume the stem cell was failure.  Americans are very impatient that way.
 
I don’t think people realize how difficult it is to walk.  I mean……how so many muscle groups need to work together in order to accomplish steady walking.  The communication (via the nervous system) to all these different muscle groups needs to be strong and without interruption.
 
A muscle spasm usually gets in the way of my walking progress and so it takes me a while to get going.  But once I’m under way…..the strength that I have been building these last couple of months really comes in handy.
 
Each passing month brings a little improvement.  Sometimes it’s not visible…..but then I’ll go into the gym and the “Lokomat” machine numbers show the improvement.
 
I’ve been riding a three wheel bicycle a lot recently.  This cycling…. combined w/ my walking… continues to give me more and more strength.
 
Strength that is coming in handy for when my rested neural communication to my legs is good.
 
Be well
Todd 

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"The Snail Trapeze Act".........(Hmmm.......Maybe these snails are more mobile than I give them credit for.......)

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And then……about two hour after my initail email…..I get this response from Profesor Slavin: 

Dear Todd, 

We never claimed we can cure ALS, like the charlatans pictured did.  We are doing good science and try to change the future of patients in need.  Nothing comes easy in one shot; progress in medicine is slow and happened step by step.
 
I saw parts of the 60-minute program. On the one hand, I was happy to see nailing the guys that are unethical and alerting desperate patients from loosing money and being exposed to false hopes.  On the other hand, I was surprised that the team of 60 minutes produced an unbalanced one-track minded program, grossly not a professional, because it presented only one aspect, ignoring the need for balanced opinion by interviewing real experts of cell therapy, not only non-believers that are not open minded and biased against treatment options with adult stem cells, as required by good journalism.  The goals of the program should be to expose the criminals but not to kill the field of cell therapy, which is most promising.
 
In their program, they featured non-professional thieves, criminals, liars, charlatans, that promise 100% cure, when every one knows there is no cure available for ALS – I have no other way to describe them.  That part was fine, as long as it will result in warning patients in need to stay away from guys like these on the one hand, and draw attention of FDA and police to shut them down, on the other.
 
What I did not like was the fact that they did not interview serious scientists that have solid data on the potential efficacy of multipotent stem cells such as mesenchymal stromal cells (MSC) that can be isolated from the bone marrow, cord of placenta [Wharton gelly] and from the fat tissue.  That created a gross disservice to the field of cell therapy for neurodegenerative diseases, when in fact many serious scientists believe that cell therapy is the future.  Admittedly, we are only in square one so there is a long way to go before we can treat successfully diseases such as ALS, but there will never be any progress unless we try, based on successful preclinical data in animal models of disease, especially since we and others already have data to suggest significant progress in treating another disease which is also associated with damage to the central nervous system – multiple sclerosis.
 
Also, not every cell therapy is the same and one cannot compare apples to oranges and regard them as one thing. Tel Aviv programs are superficial by nature and it is too bad that such an unbalanced program can damage the field and work of serious scientists because of some guys that are selling snake oil to innocent patients.
 
Also, the scientists they interviewed did not disclose conflict of interest, one being involved in developing a pharmaceutical product for treatment of ALS, and the other, a believer in the potential of embryonic stem cells which are far away from clinical application and if used at present can also cause cancer.
 
Regarding your question about progress, yes, we are filing a new patent showing we can transdifferentiate bone marrow and adipose tissue derived mesenchymal stromal stem cells (MSC) which can be prepared from liposuction to neural stem cells, neurons and oligodendrocytes that secrete myelin. We need to do animal experiments before we can do clinical studies.  This is why we keep half of the bone marrow aspirate for the future.
 
In ALS, all we know based on a small number of the first cohort of patients done thus far is that during an observation period of 6 months, there was no obvious disease progression we could measure. Nearly all were very advanced cases.
 
As to current treatment available, which is different from what was discussed in 60-minutes, we know this is step 1 and we know that in the future we may be doing much better because of extensive and very promising new methods now under investigation in our laboratory.  This is also why we keep 50% of the cell harvest cryopreserved, so in the future we could apply more innovative procedures for patients in need. 

Slavin 

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Yes……..I agree……the 60 minute piece falls short in the fact that there was no effort made to explain where cell medicine is curently……..just one research scientist from the U of Michigan that claims we are ten to fifteen years away.  Everything is the US is always 10 to 15 years away!!!!!!!!!!!!!

Also…………

The profesor uses that word again………..

“oligodendrocytes”

I have spoke with him (via email) in the past about this word……..you can read about that here:

https://toddsmall.wordpress.com/2009/12/31/warning-sciency-stuff-2/

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Sorry bout’ the long post…………..but if you missed it…….I gave an update in there too. 

Things are good. Still working out hard each week.and enjoying about 5 hours of the kids baseball a week right now.  Crazy times. 

Progress is “snail” slow…….but hey….. it’s still progress. 

Be Well, 

Todd

Last month…..the boys from the union paid me a visit………Again!!!!! 

Great Job guys!.....the place looks great!!!!!

They say…you’re supposed to buy the worst house in the neighborhood and then fix it up……….well……..leave to my wife to do just that. 

We bought the place in 2004 and never moved in……our huge remodel had begun. 

Two years of “remodel hell” and ignoring my MS…left me with some new mobility challenges.  The house still isn’t done (probably never will be till we move) and the yard has really been the “eyesore” of the neighborhood these last 6 years. 

Back in my “Mobility days”…..my previous house had the nicest yard on the block. 

Now…..I get to crawl around…..flower bed to flower bed and weed little by little.

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The union steward came up to me at work a few months back and asked if I needed any help around the house. 

“Huh???????”…..my reply……”I thought you guys only did charity work?” 

“Most of the time”…….. he said……”our guys really like helping other members though”…… 

“Hmmmm………Well I do have this rockery bank that needs weeding”……….. 

“Done”…….he said…..”We’ll be out in two weeks”………. 

“Huh??????……….Ohhhh……..Kaaaaaa……….”…….I’m think’in to myself

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I then get a visit at the house from “Union Steward Rob” on a Sunday prior to work day……..”Is that all“(looking at the 50′ long by 13′ high rockery)……he says to me. 

“Try to think of some other stuff for us to do around here……I’ve got six guys coming out to this place!”….. 

“Ohhh…….Kaa……” 

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I guess I’ve never really looked at myself as a charity case.  I still work and I’ve got kids to do this yardwork stuff…….

“Right??????”…….. 

“Ya sure”………we all know how that goes w/ kids these days.  I think very few modern day families press their kids into work we used to do around the Small house.  My sisters would argue that I didn’t do that much house cleaning.  But then again….I never saw them do much yardwork…….especially the days when it was raining outside (doesn’t do much of that here in Seattle…LOL). 

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On the day the union came out……not only did they clean up the yard……They also help build a fence across the back yard (a little dog containment system). 

Great Job Guys!!!!!

Julie and I thank you very much.  The place looks great.

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You can read more about the union efforts at my house here on page six of the monthly union paper. 

Link (page 6): 

http://www.iam751.org/aero/April_2010_Aero.pdf 

 

Side note:  I realize that a lot of you detest Unions in general and all that they stand for. 

Good for you………(whatever)

Besides having a voice in the workplace and fighting for decent “Living wage jobs”……..the Machinist union also does some very admirable charity work.  One of my local: IAM751 biggest foundations is:  “Guide Dogs of America“. You would not believe what it cost to train a dog for a blind person. I am told it is about a two year process and costs a pretty penny. 

A link to Guide Dogs of America:

http://www.guidedogsofamerica.org/iamaw.html 
 
 

 

Be Well, 

Todd

Holy Week - 2010

Happy Holy Week everyone.  Can’t believe it was just 9 months ago that we were at “The Spot”(the holy land) where it all went down.

Maybe the kids will remember this week when they go to mass at school.

If you ever get the chance to go to Israel……make it happen.  We were there for other reasons…obviously, but if I had the means…..I’d love to return to see more.

I bumped this post up from the bottom of the blog:

(one of my 6 posts while we were in Israel)*************************************************************************

Titled:

“No,No,No, Sir…..nothing to see there…just school  yard…..”

 

It was pretty much impossible to see all of the Stations of the Cross because:

A) our Jewish guide didn’t know where to go and ……

B) wheel chair on cobbles = “not good”

We employed a 15 year old Arabic boy to navigate the “Crazy Arabic flea market” chaos that is the “Via Dolorosa”.  (The old Jerusalem roads……… and the supposed path that Jesus took with the cross)

The path The path 

  

We didn’t have the time (or mobility) to visit all the stations but the few we did see…… they spoke to me.

Station #3: Jesus falls the first time…………….

Hmmm………I know the feeling……minus the torture, ridicule, whips and crown of thorns and cross part.

He falls the 1st time He falls the 1st time 

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Station 7: Simon helps Jesus carry the cross…………

People I don’t know help me out all the time (opening/holding doors, carrying stuff, giving me an arm to hold on to)………God bless them.

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Station #1:  Jesus is convicted………..

 This one was very important to me……the guides kept saying:  

“No, No, No,… Sir,…………nothing to see there,….. just school yard……..”

I looked at the one guy…..he was Muslim, and the other guy was Jewish……..”maybe not for you guys”….I said.

I had to climb the stairs for that one………….it took awile….but I made it

More than just a school yard More than just a school yard 

 

It was a time in history…… when we turned our back on him…and in the end he forgave us for everything.

And the Jewish high priests were so jealous of his popularity…….they had Pontias Pilate put him to death…… as not to have blood on their hands.

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We then proceeded to a church in the center of all the chaos.  I don’t know what it’s called but it was amazing…..the last two stations are there and supposedly Jesus’ tomb.

Our guide wheeled me up to the front of the line and started with the Arabic negotiation of how we were to cut in front of all these people who had been waiting patiently. 

The place was about to close and this is where the catholic guilt set in.

I told the two guides that outside these walls………….I respect the Jewish way and the Arabic way of arguing and negotiations but inside this place……. they need to know that those tactic’s are not the catholic way. 

Need less to say………we got in and the people in line were gracious about it.  I hope they all got a chance to see it.

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In the end…………it was a very emotional experience the family and I will never forget. 

Do I feel guilty that I don’t attend Sunday mass like I used to?………sure.

But God knows of my plight……..He knows that Julie and I work hard to give our kids the best that we can provide.

And if I have learned anything in life from my wife of 18 years…..it is this………

“The church of good deeds”…… will always trump…….Mass on Sunday”

Its how we treat/respect each others as humans…….the role model we should be to our kids,…. morals,…. values……it how we live our life……………..Thanking God for everything that he has given us……………

People on the web often are mad at God for this stupid MonSter of a disease.

I have never looked at it that way. God has never given me something I couldn’t handle.

I can’t blame God,………that has otherwise….made my life a thing of beauty.

When I pray……I first always thank God for everything and only ask for the strength to handle all this and provide for my family.

Come to think of it………..he’s always delivered on those prayers.

Works for me.

Happy easter and Be Well,

Todd