Help Dave find ways to live with Multiple Sclerosis

Update posted by Dave Hall On Oct 14, 2018

...and another step backward. My life since diagnosis of MS has been one step forward, followed immediately by three steps backward.

Now I get the dreaded letter from the pension plan which says I may be cut off, since I didn't go to my "doctor" every thirty days. After my last visit, with a neurologist, I became very comfortable with the reality that there is not much more to do with secondary progressive MS, short of throwing more and better medications at me which do nothing but make the manufacturers more money. So, I am very comfortable with not seeing a doctor and taking pills for all future time.

I get to convince the pension plan that I'm not magically going to go back to work. Or, I begin to starve, and freeze to death somewhere.

Not as bad as it sounds, but my dream of getting mobile seems to be getting further and further away from reality.
So I continue to look for help with this dream.

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Update posted by Dave Hall On Sep 20, 2018

I have resigned myself to the fact that repairing damage done by MS is not going to happen any time soon. What I want to do for the future is travel the contiguous 48 united states of America. This may sound similar to past updates I have posted here, but since I see no other response I try again. I hope to hear something positive soon. I have scoped out a nice place under a freeway overpass, where I can park a refrigerator carton for a new residence. I may not have internet access, or an address of any sort, so I may get silent very soon.

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Update posted by Dave Hall On Jul 22, 2018

I shudder to put this out there, but I've reached crisis. Lately tax increases and rent increases have taken everything that may have resembled disposable income, and now I cannot cover rent. I'm appealing to anyone who finds this, please send me something. Every little bit helps.

My family members who are able to have given what they can to my cause, and I do not want to abuse them. Friends have helped too, and it is greatly appreciated. But, expenses have continued to creep up, and I'm no better off.

I have a dream, and I want to act on it, before it gets to be too late. I've even located a program which may accept me to investigate stem cell transplantation. I'm skeptical, as I've written before, this one makes sense, and at least at first glance, it doesn't sound like the typical age based denial.

I hope that tis makes some sense, as I write, I am tired, and probably rambling. Not to the point of desperation, but inching closer. I want to talk soon.

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Update posted by Dave Hall On Apr 28, 2018

Further updates are needed, but today I've reached a point that I should write about. I still want to find a way to repair damage that has been done to my central nervous system by this disease, but I am still skeptical about the medical community having any interest in my particular case.

I've been in contact with another firm that does stem cell transplantation, and has all manner of happy stories about how they have helped multitudes of people with their treatments. Reading more carefully makes it sound like the joys of hitting the lottery. The odds of success realistically are pretty long.

Finding treatments that may have a realistic positive outcome seem to be remote, at best. So I've decided that until I can find something that can work better than hope for a check from the lottery commission, I just want to do some traveling and enjoying the life that I have left. With an eye open to any other breakthroughs that may materialize. And if I can make this happen, share it with others who find themselves in a similar situation.

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Once again I write an update. I’ve located the first stem cell transplantation facility that mentions good possibilities for persons with secondary progressive MS. None of the others are recommended this, only for primary progressive or relapsing remitting. I’ve not had a relapse, or flare in the 9 years that I’ve dealt with this disease. The cost is right around $15,000.00. Not covered by any insurance. So, I’m still skeptical but at least it sounds like something for terminal MS.

Dave Hall

Update posted by Jun 08

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Dave Hall

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