• Russ Newton

Getting close to the end but there is a faint hope.

I am coming to the end of what I can deal with with ALS. First up, can't speak. And can't eat. And have to suck fluid from my lungs every two hours. Joy meter is about at 10% now. And now I am losing mobility on my left side down to about 15% strength and my right side decided to join the party and is making up for lost time too. It is down in three days to 50%. I can still control all my limbs but for example typing this out is taking me a long time because I constantly miss-hit the keys. So moving to wheel chair is not for me. That would take Joy negative in my life. The faint hope is due to a "randomized controlled human trial with nicotinamide riboside which improved many endpoints in ALS. It is available from many sources online as a supplement" You mix 500mg nicotinamide riboside and 100mg pterostilbene once a day. And early test results show some reversal in symptoms Here is the link to the trial. https://pubmed.ncbi.nlm.nih.gov/30668199/. So I bought both from Amazon and took my first dose today.


So if this doesn't work (And why would it work I wonder with my luck) I think I am done when I am close to being in a wheel chair. Not willing to have another human being wipe my ass to be blunt. So based on the lost of strength in my left and right sides I am thinking two weeks to a month at this point.


On a lighter subjected Tim Story, the pressman I worked with in my first job in the pressroom in Madison has been coming over to play cribbage once or twice a week. And yesterday he suggested we drive up to Devils Lake and follow the route I and Jim Pagel and others took on our bikes when we were 15 years old. We would load up our bikes and ride the 45 miles on a narrow county highway up and down a very hilly terrain. Then camp out for a couple of days and climb the rocks at the park. Jim Pagel wrote about that in his Guest Post. If you haven't read it yet, just click on the "more" arrow at the top of the page and select "Guest Posts" And my left hand is shaking so much now I fear this may be one of my last posts.


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