 |
 |
Hello to everybody. I have been a member here for a few weeks, just reading the messages and getting up my nerve to join in and say hello. I am Bob Anibal age 78, my wife Cecily is 76. She is the PD patient of some 20 or so years. The PD has progressed very slowly, I suspect from your messages that many of you are further advanced in a relatively few years ( 4-5-6 ? ) than she is in 20. I do most of the cooking - and enjoy it - I have acollection of about 300 recipes I have accumulated all of which I will probably never use. Cecily's problems are essentially just a slowing down. Her writing is execrable, often she can't read her own notes. We manage to laugh about that sort of thing. It's either that or cry - we seem to be able to laugh. She sometimes has trouble walking - freezes in place - shuffling her feet I have a little chant 1-2-3 left, 1-2-3 right which works ( a lot of the time ) Has trouble sleeping sometimes. the neurologist has prescribed Valium and Diphenylhydrazine as needed. Her thought processes are a little slow but she is still a very astute lady. We both sing in our church choir ( where she use to play organ and lead choir) As I am writing this she is cooking 7 or 8 squash for a church dinner. I duck into the kitchen periodically to help as needed. She stopped driving about 2-3 years ago. Her twitchy foot was a problem on the gas pedal. I notice from the messages that depression is a problem with many of you, she has never shown any indication of depression - maintains a good sense of humor - even laughs at my jokes. Sense of smell seems a problem with some. Cecily has never had a very good sense of smell. When we pass a dead skunk on the road sshe can smell it most of the time. Is this an indication that PD was in her future??? The case of the man in Texas who was given a prescription drug that near killed him scares me. Our experience with drugs was with the sinemet CR. Cecily was having considerable dyskinesia and even at night was thrashing all over the bed. Her neurologist put her on the Sinemet CR when it first became available. Shortly after we moved to another state and went to a Movement disorders clinic. No change. We changed toa neurologist closer to home, recommendedby or family MD. No change. Went to a neuroligist who had been treating a friend and his first remark was " That is not PD, that is overmedication." WOW. I couldn't believe it. He said she was taking 2 1/2 times the amount recommended. He cut back the medication gradually and soon she was as good as 2 -3 years before. Her medication now is 2 sinemet 50/200 per day, 2 eldepryl/day and propanolol 4/day. Our neurologist does not believe in long range efficacy of pallidotomies as the operation stands today. He tells us of effects wearing off on as short a time as a few months. I print off many of the most interesting letters for Cecily to read, she won't sit here and read then off the screen, makes her nervous and shaky. I know this is rather long, but thought I would let you-all know about us. Bob Anibal - Cecily the spouse.