Brachial Amyotrophic Diplegia

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olson001

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Hi all, have just joined the ALS forums. My dad was diagnosed about 2 years ago, with "man in a barrel" and has had slow progression, starting with fasciculations in hands and forearms, now having to use what little shoulder strength he has to try and get his hands up to the table. I live half the country away and watch my mom struggle to be the caretaker in the small town they live in. Got an excellent doc at a major medical center, but it is a long drive from home to the city every few months. I'm looking for tips and advice for her/them/ we and all of us adult far-away children.
Thanks so much!
 

lgelb

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We have experience from the other side of it -- our only child is on the opposite Coast, and each of us has had close relatives die when we were far away. Thinking from our mutual perspectives, my general advice is:

For you and the other kids: Talk when your parents want to listen. Listen when they want to talk. Visit separately rather than together at least some of the time so each of you can maintain the separate relationships that are so important.

For them: Comparison shop/research everything. Get or keep an excellent primary care doc close by -- in the end, that person can do nearly everything an ALS center can do, and sometimes more. Require equipment/other interventions to bear the burden of proof. Take MDA/ALSA literature with a grain of salt. If they live in a small town, people may be very anxious to give them support but not sure how. A Web page geared toward news and signing people up to do things may be helpful, or an old-fashioned telephone tree.

I would also point your parents to Julia's poignant advice on another page about taking things as they come -- for myself, and this may be true for your mom, the concern for what comes next always threatens what would otherwise be a "live for the day" imperative. This is especially true for me as my husband was born with another fatal disorder and has had many surgeries pre-ALS. Our son, who was with us for some of the major events and not for others, has dealt with the unknown by being a much more mellow person than either me or my husband, and I think this has worked well for him. How mellow you or your sibs are I do not know, so I can only advise that you gather rosebuds while you can.

Above all: if you do not know what your parents need or want, ask. If you aren't sure how they would respond to any particular support/visit/advice, ask. And tell them frequently that they can tell you anything, whatever your family's frankness record has been.

Best,
Laurie
 
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