- This topic has 3 replies, 1 voice, and was last updated 10 years ago by cathy wise.
September 18, 2012 at 4:35 am #1191cathy wiseGuest
Hi. I’m a 61 yr. old woman who has been diagnosed with “probable” MSA. I have been to 4 neuros.(looooong story) I walk funny, talk funny, write funny, no longer drive, have orthostatic hypotension. my fine motor skills are in the toilet, have urinary incontinance etc,. etc., but “feel” fine. I too, don’t want heroic measures, the Bible says there is going to be a resurrection of both the righteous and unrighteous, so I would rather die and “sleep” for awhile. This is no way to live. so, how long do I have to do this?? I’ve been searching for answers for 5 yrs. now, and JUST got a diagnosis. It is progressing, but, SLOWY. I still “furniture surf” in the house, but, use a walker when out. Can no longer garden, sew, quilt, walk, or cook. Maybe I did this to myself, why me? I am in great physical shape, take no meds. and certainly don’t look like some of those “train wrecks” out there. I am soooooo frustrated. Thanks for letting me vent, CATHYSeptember 18, 2012 at 8:43 am #1192surfcoastwombatGuest
If you do have MSA I very much doubt you did this to yourself. No-one knows why people get MSA but it is my belief that history will prove that it is caused by a “wayward” gene.
Prognosis is generally believed to be between 7 and 12 years but can be less, can be more. The problem is knowing when it started.
I hope you are in a good support group – if not – please try and connect with one.
JohnSeptember 18, 2012 at 4:54 pm #1193Vera JamesGuest
I agree with John no one does anything to cause this disorder. It’s just as they say bad things can happen to good people.
I know there are things that can’t be done anymore, but try to find things that you can do that replaces the things you can’t. You mention you like to garden. Can you still pot plants sitting at a table or pick things off the plants if sitting down? My husband loved to garden and couldn’t get down to plant things , but could sitting and potting them . Which he loved to do. The thing is just to find what you can do and not give up living the life you still have.October 23, 2012 at 5:58 am #1194cathy wiseGuest
I don’t want any “heroic” measures. I am not afraid to die(deep sleep ) but, I am afraid of being a vegetable. Don’t want to burden my kids or husband. It’s not fair to them. At least this isn’t genetic……..
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