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I was asked to give a little more info on myself, so here goes!
My husband Kenny was diagnosed with OPCA (olivopontocerebellar atrophy) in 2/2003 after a long search for relief for his many symptoms. That dx. was changed to MSA-C (Multiple System Atrophy - cerebellar presentation) 10/2005 after autonomic system and tremor progression. In case you're not familiar with the disease, it is neurodegenerative, no known cause or treatment and slowly (or sometimes not so slowly) destroys multiple systems of the body. If you saw the made to TV movie 'Saving Milly,' Milly actually had MSA NOT Parkinson's. It presents in many different ways and Kenny's, unlike Milly's, has been primarily cerebellar.
This summer has been a bad one -- constant nausea, vertigo, UTI, etc -- and consequently, Kenny has lost some of his abilities. He's been in a wheelchair since 11/2004 and has now lost the ability to transfer from liftchair to w/c or w/c to bed or toilet with his grab bars and superpoles: in other words, I must be there to help him. I quit my job about a year ago to be with him full-time. He is weak, tired, his speech is getting worse, breathing problems, eyesight getting 'fuzzy' so he cannot read, drinks from a straw, has orthostatic hypotension, indigestion, inability to deal with heat, etc etc.
I am on several listserves for Kenny's disease which is helpful for me to meet his challenges. Now I've found this site -- FOR ME!! I learned about 'Main Stay' by reading 'Saving Milly' which really depressed me. The author of that book claimed that Maggie Strong was a caregiver during a time when government, politicians, family and friends didn't realize how important caregivers are. HA! I don't see too much evidence that they've learned our importance yet. Anyway, from 'Main Stay' I googled wellspouse - and here I am.
Kenny and I have been married almost 28 years -- 8/19 is our anniversary. I'm 49 and he's 54. We have four kids, mostly grown: 25, 22, 19 and 16. Only the 16 yr. old (Eleanor) lives with us right now; the 19 yr. old has been volunteering in New Orleans since last Oct. We do have good news, though: our oldest, Grace, just told us she's having a baby in March. How wonderful to have really good news for once!
I look forward to reading through the forum archives and getting to know many of you.
Oh, someone asked me about my screen name. Grace has spent time in Bethlehem and other areas of the West Bank and began calling me 'Immi' (mother in Palestinian Arabic) at that time.
IS died at age 57 on 9/5/09 of Multiple System Atrophy-Cerebellar, a neurodegenerative disease.
What a beautiful name for mother!!! Welcome aboard!!!
I hope you find this forum a lifesaver the way that I see it. You will get many great insight here. The people here are very understanding.
I am sorry you and your family are going through some difficult time trying to get a handle on IS's illness. I have never heard of MSA-C until you've described it.
Again, welcome to this wonderful site.
Sounds like we will soon be calling you Nana Immi. Congradulations on the upcoming blessed event.
Does MSA-C fall under the MDA umbrella?
Welcome to the site....you have a lot to teach us all about MSA-C.
Married for 42 years. Caregiver for 13 yrs. IS died of COPD Feb. 10, 2011. Combat related disabled veteran.
welcome Immi to the club no one wants to belong to but would be lost without. So many wonderful ppl here and the helpful tips & advice are much appreciated by all.
Congrats on the upcoming birth of your grandchild. My youngest grandchild just turned a yr old on the 6th. What a wonderful blessing they are.
FWS-52 Carpal Tunnel both hands and Acid Reflux. Beloved husband Rick age 53 passed away November 6, 2009. End Stage MS, plus complications from pneumonia
I will be able to easily remember your anniversary because my son was born on 8/19. You and he are the same age also.
Everyone here is so supportive.
Lots of luck to you and yours.
FIS died 9/1/08. It was her CHF, COPD, and Atrial Fibrulation that hospitalized her the last time. Both WS and FIS are women who retired in 1997 and had lived together almost 19 years.
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