 |
 |
hello, my name is nancy and i have been a lurker on this list since christmas time. i was diagnosed with parkinson's in july of 1995. i believe my first symptoms started in 1992. i am 58 years old. i have been progressing very rapidly and have many problems and am in a wheelchair. i had a pet scan in march and the diagnosis read "consistent with multiple systems atrophy" which i think is one of the parkinson plus diseases. it is all confusing to me. does anyone else out there have this or know of someone who does? one problem i have is my feet are twisting and my toes curl under making it painful to stand much less get shoes on. if i could stand pain free i could walk with assistance. the next most anoying problem is my top lip curls under making my mouth very dry. my lip gets stuck on my gums and teeth making it difficult to speak along with lip muscles not working well to enable me to say certain letters like b and p etc. i guess incontinence is next. the rest of my problems i could live with. any solutions? i take liquid sinemet every hour. i found an oven timer in lechters in the mall that is fairly small and has a clip on the back. it can be attached to a pocket or belt or pocketbook strap or stand on the table so i don't have to worry about forgeting to take my meds. it is made by cooks club. i also find that correctol tea by schering-plough is good for constipation. it is by the other remedies in the drug store. i found info. about multiple systems atrophy at http://www.parkinson.org/atrophy.htm it is informative but scary, especially the time frame.