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Remember Mark Meier

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So sad to here about this forum member.
I really didn't know much about this disease until I watched an old movie over the winter with Jimmy Stewart about Lou Gehrig. I thought it was a good movie because I learned something from it and made me appreciate the things I am still physically capable of doing.
Back in March my wife and I were at a friends house playing some cards. In casual conversation I was speaking with a guy close to my age (mid 50's) and he was recently diagnosed with this disease. This weighed heavy on my mind for days.
 
So sad to here about this forum member.
I really didn't know much about this disease until I watched an old movie over the winter with Jimmy Stewart about Lou Gehrig. I thought it was a good movie because I learned something from it and made me appreciate the things I am still physically capable of doing.
Back in March my wife and I were at a friends house playing some cards. In casual conversation I was speaking with a guy close to my age (mid 50's) and he was recently diagnosed with this disease. This weighed heavy on my mind for days.

Yes it's a truly horrible disease. I learned trough Mark about it and I think it's worse then Cancer. There is absolutely nothing that medicine can do against it, no matter what you are going to die within a couple years.

We visited him a couple times the last 2,5 years and for me it was incredible hard, because, what to say? Nothing you can say here. It left me speechless.
Very emotional.
 
@Ozymandias, You're spot on! To see what it does will leave anybody just speechless!!!!!!!!! Have had several friends loose their parents to this awful disease! To anyone having to deal with this, I offer you encouragement and strength! Use any and all support group help that you can. I know it's hard to do, but try to take some time away to do something for yourself while others step in to help care for that person. If you don't have a little time to spend for yourself, it'll drain the life from you! Try to gather all the knowledge that they have to offer before it's to late and sure all the good and bad! Hopefully, they'll find a cure for ALS along with the other awful things out there! Blessings to all dealing with friends and loved ones with failing health!
 
@Ozymandias, You're spot on! To see what it does will leave anybody just speechless!!!!!!!!! Have had several friends loose their parents to this awful disease! To anyone having to deal with this, I offer you encouragement and strength! Use any and all support group help that you can. I know it's hard to do, but try to take some time away to do something for yourself while others step in to help care for that person. If you don't have a little time to spend for yourself, it'll drain the life from you! Try to gather all the knowledge that they have to offer before it's to late and sure all the good and bad! Hopefully, they'll find a cure for ALS along with the other awful things out there! Blessings to all dealing with friends and loved ones with failing health!

The nurse from the ALS Association of Arizona was more honest with us about what we were facing than the neurologists were. ALS Association stayed in play to the end, and supplied a really nice electric wheel chair and other supplies. Hospice of the Valley took over for the last 7 weeks. And the staff at an adult family home took good care of her during that period. I had to go that route at the end because she was falling a lot, and I could not sleep at night in fear that she would get up to use the bathroom and fall through the glass shower doors. I built a wheel chair ramp, and she only went up and down it about 4 times before the Hospice nurse visited and guided us to more care than I could provide at home. We put her in one of their temporary centers for four days while I worked to find a adult family home.

In between all of this, I could not get her from her wheel chair into the high RAM truck, so it was sold. Had I known how quickly this all went, I would have kept it and still be driving it.

My advice to all facing this is to contact the ALS Association early on, and build a support network from the get go.

As a final note, I have been giving money to the ALS Association and Hospice, if one is at the age of RMD from a IRA, then these donations can offset income tax on the required minimal distribution that is given to a 501c.

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