Purpose:ALS (Amyotrophic Lateral Sclerosis)(Started Jan 28, 2013)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
Feb 11, 2013
None
None
Always
Somewhat
Feb 04, 2013
Major
None
Always
Somewhat
Date
Feb 11, 2013
Advice & Tips
It is time for my second week update. i had the Precision Stem stem cell transplant two weeks ago.
I am afraid all my gains have disappeared already. I again require a cane to maintain balance and I am using a pillow on the couch to sit on so that I have a higher starting height when I get out of the seated position.
Now that the improvements are gone I am even more sure that I did indeed have a temporary increase in strength in my legs. But with such a short period it is really hard to say if it was in fact due to the transplant.
So now the question is will the procedure lead to any kind of stabilization. In my case this should be relatively easy to determine. To date except for the period I was on NP001 my FRS curve has almost perfectly followed the average progression 'shape' as you can see on PLM.
Cost
$200+ monthly
Date
Feb 04, 2013
Advice & Tips
1 week post procedure evaluation:
Objective Observations:
Before procedure was 100% dependent on cane, after procedure I do not need to use the cane. Before procedure could not climb stairs without cane. After procedure I am able to climb stair without cane.
Before procedure had difficulty raising myself from a seated position on my couch. Required the use of two cushions which add about 5 inches of height to the seat in order to get in and out of seated position. After procedure no longer need cushions. I have minimal trouble getting in and out of seated position.
Subjective Observations: Legs feel significantly stronger, I still only have a small fraction of my original strength but I am walking much better and don't need a cane anymore. I still take it if I go outside (which is rare) just to be safe.
I am able to turn myself better in bed. However, I am in a different bed because we are renovating our master bathroom for accessibility.
My grip strength seems to be a little better. It seems easier to put my socks on.
All improvements have been gradual over the course of the week. For instance a couple days after the procedure I kept forgetting to grab my cane, then a couple days after that I just stopped using it altogether. Every night it just seems a little easier to turn in bed, and to get out of be.
Purpose:CD133+ stem cell transplant in frontal cortex(Started Oct 08, 2009)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
May 21, 2010
As needed
Slight
None
Always
Not at all
Date
May 21, 2010
Advice & Tips
At present, axon growth is renewed in both sides of the brain to the brain stem. LMN damage is substantial, so little clinical change. Severe eye burning has subsided though. One time expense of $18,000.
Updating results…
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