Guest guest Posted August 9, 2000 Report Share Posted August 9, 2000 deenzer, While there is nothing you can do precisely for the brain disorder itself, there are things which can be done for many of the symptoms. I put some general things which will help his overall health below, but to address the symptoms you mentioned, here are some ideas: 1. First as someone else mentioned, find a neurologist who specializes in movement disorders. Give us a clue as to which state you live in or what big cities you live near and we may be able to help you find one. University hospitals that teach neurology are a good bet. Do you have a family doctor that you have used for some time, they may be able to help with finding the right neurologist also. 2. Speech and swallowing problems are common, but can be helped. The muscles that control these functions get lazy due to poor signals from the brain and must constantly be retrained. Here you need to have a swallowing study done with a speech therapist watching. This is a video taped X-ray of him swallowing different consistancies of food. A good speech therapist can watch and then work up exercises for him to do (every day, not just on speech therapy days). My wife could not speak at all after a bout with an infection two years ago and came back to where she could speak reasonably clearly and eat many foods. 3. Balance is more of a problem and if he is not already using a wheelchair, he should start now. The wheelchair allows mobility, and prevents falls which could severely hurt your husband. Medicare will pay for 80% of the wheelchair and the therapy if a doctor prescribes them. Here is a list of general health tips that are REALLY IMPORTANT to MSA patients: * To get into a daily range of motion exercise program (including speech exercise) * To drink enough liquids * To eat properly * To keep a daily time log of medicines, eating, drinking, BP, temperature and anything else - symptoms, relief from symptoms that may help the doctor * To develop a partnership with their doctor and share their log with them Stay with the list, we have many knowledgable people on MSA here. There are medicines that will probably help most symptoms - let us know exactly what symptoms he has and what if anything he is taking for them and we can give you ideas to take to your doctor(s). Hope this helps. Take care, Bill and Charlotte deenzer@... wrote: > my husband was diagnosed yesterday with MSA. he has many neurological > symptoms..off balance, swallowing problems and most of all much > difficulty with speech. it is difficult to understand him. As first the > neurologist said he had a parkinson like disease & he was put on > simemet, which didn't help anything. As of yesterday, the dr. told him > there is no medicine for this disease & nothing he can do for him. I > would appreciate hearing from someone out there with similiar symptoms & > an explanation of MSA. thanks. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2000 Report Share Posted August 9, 2000 bill & charlotte: thank you so much for all the information you sent. the neurologist we saw is from U. of Miami, Memorial Hospital & he gave no hope whatsoever. he said there is nothing to be done..but I have a name of a movement specialist that I am going to call.right now my husband is on no medicine. the dr. said to stop the sinemet. his main symptoms are: balance, very poor speech & swallowing..thanks again & I'll be in touch. jerrie & bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2000 Report Share Posted August 9, 2000 Glad you made it Jack. You were in limbo there for awhile. There is some glitch going on with subscriptions, I've reported it to the eGroups technical support people so hopefully they will fix it up. Take care, Pam yes, I have just started getting mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2000 Report Share Posted August 16, 2000 buy her a computer. U can get one for 600. . don't need all the gadgets. She need it to type not plot data:) can u wheel her for a walk perhaps. it is nice to get out of the house even if ur ill:) how does she go to the bathroom if she can't move? Catheter? Don't wait for her to ask u to do something please. It is frustrating asking women to do the obvious like wheeling their chair from one spot of the room to another. does the wheelchair arms come off ,so that it can fit under the table? if not rent one that does, since she is going to be in it for 2-3 months. may sure SHE is comfortable. Do her hair nicely. If her friends don't call, then call them and have one come over for a short time. WHatever activity u do with ur mom, make sure u do it again with her if she enjoyed it. Give ur mom something to look forward to. Rummy Q is fun , cause u can rest and go back to it if u want to. Does she like her nails done?? Maybe that would perk her up , even if she isn't the type to get them polished. velcro the tv remote to her chair, so she doesn't have to ask for it. If need be buy a spare from Kmart. If she can't move. Sears makes a split top laptop computer desk for 80 bucks. I think it can be order from their home sale catalogs, if u can't drive to the store. The desk slides very easily under the wheelchair and chairs in general.The length is approx 2.5 feet and 1/3 of the desk top rotates 180 degrees accommodates lefties and right handed people. Ur mom can use this as a table for games, eating, computer keyboard, and meds. Lots can easily fit on there without knocking it off. u can even set a bowl there for when she is hungry and wants to nibble as she needs. nancy Ritchie/Clifton White wrote: > > Have a question to throw out.......(Mom with MSA) > Mom had been using a walker with some success, not a lot due to passing out > from changes in BP. Unfortunately, two weeks she fell (again) and this time > broke her clavical (collar bone) She is now in a sling and was told she had > to stay in wheelchair for 7=8 weeks while it healed. She is not to get up > and walk at all. > Needless to say, she is extremely depressed, as she is more able to see > where all is leading. > What kind of activities or board games can we get her to help pass the time? > She has absolutely nothing of interest to keep her busy. and she won't do > puzzles! LOL She is unable to crochet or knit (even without arm in sling) > due to fingers locking up on her. > What do some of you with SDS use to pass the time? She does not have a > computer at this time. > Any suggestions? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2000 Report Share Posted August 16, 2000 , Charlotte plays games like Hearts or Monopoly on the computer. We also try to get her out of the house as much as possible, even on the deck. We often take her to the zoo or museaums also. The wheelchair can go almost anywhere - I would not recommend the beach - at least not on the sand. ) Take care, Bill and Charlotte ------------------------------------------------------ Ritchie/Clifton White wrote: > Have a question to throw out.......(Mom with MSA) > Mom had been using a walker with some success, not a lot due to passing out > from changes in BP. Unfortunately, two weeks she fell (again) and this time > broke her clavical (collar bone) She is now in a sling and was told she had > to stay in wheelchair for 7=8 weeks while it healed. She is not to get up > and walk at all. > Needless to say, she is extremely depressed, as she is more able to see > where all is leading. > What kind of activities or board games can we get her to help pass the time? > She has absolutely nothing of interest to keep her busy. and she won't do > puzzles! LOL She is unable to crochet or knit (even without arm in sling) > due to fingers locking up on her. > What do some of you with SDS use to pass the time? She does not have a > computer at this time. > Any suggestions? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2000 Report Share Posted September 23, 2000 ROFL .. good imagery there ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2000 Report Share Posted September 23, 2000 ROFL .. good imagery there ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2000 Report Share Posted September 25, 2000 Bill, Yes, in B.C. we do have very strict standards for supplements. Of course, like all things some slip by and some bring in restricted goods illegally from the U.S.A. I work in a health food store that will only deal with companies that we can get independent assay reports from. I have seen reports that tell all of the trace minerals and garbage that is put into some supplements. I know some customers think we are over regulated and they bring questionable products in across the border themselves. Personally I would like to see strict regulations so that people could be sure of what they are getting as well as better education offered in the whole alternative medicine area. I became interested in health food when my husband was diagnosed with bladder cancer. His cancer was caused, the doctor figures, by exposure to turpentine and so that is why I like to see assay reports and know where my products are grown, are they organic? Prove it! I also realize that the consumer can and does abuse supplements, diet pills are a prime example! Anyway I do appreciate your help when it comes to educating the public about supplements and some of the dangers. Mom seems to be doing okay right now. The last couple of weeks were hard when she lost a friend to cancer and the grandson she helped raise joined the army. Warren is now settled in Quebec in training and I think her mind is more at ease. Her whole system messes up when she worries. Sylvia Quote Link to comment Share on other sites More sharing options...
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