Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 Marge, I just wanted to add a note to 's. Another thing to watch out for when doing pool exercises. Stay out of the deep end and make sure someone is there all the time while in the pool. Fred had PT in the pool that his doctor gave us a RX for. Fred had PT one on one, but his PT went to do something when he had Fred in the pool, Fred lost his footing and went under. Once under they have a hard time getting back up. Thank God someone else was in the pool at the other end and came and got him up. Fred had once been a very good swimmer, but not after he was DX with MSA. Anyway that's just my note that I wanted you to know. Take Care Vera my attachment ********* Hi Marge, I'm sorry I don't have the description of the pool exercises. One thing to be careful of is the water temperature. While the water pressure will equalize BP, if the temperature is too high, it can actually elevate it afterwards. Same problem with hot tubs. The best thing to do is have a physical therapist work with your husband on the therapy, how long to do them, what the water temp should be, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 Marge, I just wanted to add a note to 's. Another thing to watch out for when doing pool exercises. Stay out of the deep end and make sure someone is there all the time while in the pool. Fred had PT in the pool that his doctor gave us a RX for. Fred had PT one on one, but his PT went to do something when he had Fred in the pool, Fred lost his footing and went under. Once under they have a hard time getting back up. Thank God someone else was in the pool at the other end and came and got him up. Fred had once been a very good swimmer, but not after he was DX with MSA. Anyway that's just my note that I wanted you to know. Take Care Vera my attachment ********* Hi Marge, I'm sorry I don't have the description of the pool exercises. One thing to be careful of is the water temperature. While the water pressure will equalize BP, if the temperature is too high, it can actually elevate it afterwards. Same problem with hot tubs. The best thing to do is have a physical therapist work with your husband on the therapy, how long to do them, what the water temp should be, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 Hi Marge, I'm sorry I don't have the description of the pool exercises. One thing to be careful of is the water temperature. While the water pressure will equalize BP, if the temperature is too high, it can actually elevate it afterwards. Same problem with hot tubs. The best thing to do is have a physical therapist work with your husband on the therapy, how long to do them, what the water temp should be, etc. Your trip to China sounds exciting, but I understand your reservations. I would probably consult with your primary care physician on special things to take, get a list of stretching exercises your husband can do on the plane and along the trip. I'm sure you will be doing as much walking as possible. You may also want to go online and get the names and addresses of hospitals along your route. I'm wondering if your travel agent can help you with that. I will post this message to the website for additional input. We have some world class travelers in our group with alot more experience than me! And, don't EVER stop asking questions. That's what we are all here for! My husband Jeff (age 37) was diagnosed " possible MSA " in 2000 and " probable " in July 2001. His symptoms are progressing, and he is steadily deteriorating. As I mentioned, he recently started physical therapy a few weeks back. Unfortunately, they sent him home on Monday because his tremors were so bad, and his BP was quite elevated. He was SO discouraged! The doctor started him on Sinemet right away, and it seems to be helping the tremors. One neat thing that has come from his PT experience is that the organization doing the therapy is a non-profit. They are wanting to do a research study on Jeff and publish some papers on him. They also asked him yesterday about whether he has ever considered setting up a foundation. They offered to help us with this. Does anyone in the group have knowledge of how this works? Also, I would like to hear of some of the group's feedback on their experiences with Sinemet. Bill, I know Charlotte was on it, but I can't remember the outcome. If I recall correctly it helped for a while. Thanks everyone! M. Water exercises & OH Thank you for the encouraging information. Joe was very interested in learning more about the exercises. Would you be able to describe them? Are there any he should not do or any warnings about timing them? He did some basic pool exercises,(cross country ski movements, kicks, stretches)in warm water and got out feeling quite good. He stretched out about 15 minutes later and soon started a head ache and elevated BP. Most discouraging! We leave for China next week if all is well. I'm somewhat apprehensive about traveling to a place where medical practice is so different. Have you had any experience with BP problems and travel? He really wants to take this trip - probably the last major one we'll be able to take. I'm pretty new to this. He wqs only diagnosed last July even though looking back, his symptoms started 5-6 years ago. I welcome any aadvise/help I can get. Thanks again for your support. Hope I'm not driving you crazy with all my quwstions. Marge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 Hi Marge, I'm sorry I don't have the description of the pool exercises. One thing to be careful of is the water temperature. While the water pressure will equalize BP, if the temperature is too high, it can actually elevate it afterwards. Same problem with hot tubs. The best thing to do is have a physical therapist work with your husband on the therapy, how long to do them, what the water temp should be, etc. Your trip to China sounds exciting, but I understand your reservations. I would probably consult with your primary care physician on special things to take, get a list of stretching exercises your husband can do on the plane and along the trip. I'm sure you will be doing as much walking as possible. You may also want to go online and get the names and addresses of hospitals along your route. I'm wondering if your travel agent can help you with that. I will post this message to the website for additional input. We have some world class travelers in our group with alot more experience than me! And, don't EVER stop asking questions. That's what we are all here for! My husband Jeff (age 37) was diagnosed " possible MSA " in 2000 and " probable " in July 2001. His symptoms are progressing, and he is steadily deteriorating. As I mentioned, he recently started physical therapy a few weeks back. Unfortunately, they sent him home on Monday because his tremors were so bad, and his BP was quite elevated. He was SO discouraged! The doctor started him on Sinemet right away, and it seems to be helping the tremors. One neat thing that has come from his PT experience is that the organization doing the therapy is a non-profit. They are wanting to do a research study on Jeff and publish some papers on him. They also asked him yesterday about whether he has ever considered setting up a foundation. They offered to help us with this. Does anyone in the group have knowledge of how this works? Also, I would like to hear of some of the group's feedback on their experiences with Sinemet. Bill, I know Charlotte was on it, but I can't remember the outcome. If I recall correctly it helped for a while. Thanks everyone! M. Water exercises & OH Thank you for the encouraging information. Joe was very interested in learning more about the exercises. Would you be able to describe them? Are there any he should not do or any warnings about timing them? He did some basic pool exercises,(cross country ski movements, kicks, stretches)in warm water and got out feeling quite good. He stretched out about 15 minutes later and soon started a head ache and elevated BP. Most discouraging! We leave for China next week if all is well. I'm somewhat apprehensive about traveling to a place where medical practice is so different. Have you had any experience with BP problems and travel? He really wants to take this trip - probably the last major one we'll be able to take. I'm pretty new to this. He wqs only diagnosed last July even though looking back, his symptoms started 5-6 years ago. I welcome any aadvise/help I can get. Thanks again for your support. Hope I'm not driving you crazy with all my quwstions. Marge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Sinemet made my father's condition worse. He had severe hallucinations and total confusion. He locked up and could not walk one foot from bed to chair at hospital. It lowers blood pressure so, his already low blood pressure took an additional dive. But, in some patients, it helps. Certainly worth a try, under supervised medical care. --Colette (from DC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Sinemet made my father's condition worse. He had severe hallucinations and total confusion. He locked up and could not walk one foot from bed to chair at hospital. It lowers blood pressure so, his already low blood pressure took an additional dive. But, in some patients, it helps. Certainly worth a try, under supervised medical care. --Colette (from DC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Collette, Usually hallucinations are a sign of too much Sinemet. They often go away with continued use or a cutback in the amount. With MSA patients sinemet tends to cut the rigidity if it is going to work for them. It is interesting that you mentioned the hospital in conjunction with Sinemet, was he in for an infection? Infection causes that type of problem far more than Sinemet. It would be interesting to see if Sinemet helped him at all to loosen up once the infection is over. Sinemet often helps patients of LBD also, but rarely does it help PAF patients to my knowledge. Take care, Bill Werre ------------------------------------------------------------------ dancowins@... wrote: >Sinemet made my father's condition worse. He had severe hallucinations and total confusion. He locked up and could not walk one foot from bed to chair at hospital. It lowers blood pressure so, his already low blood pressure took an additional dive. But, in some patients, it helps. Certainly worth a try, under supervised medical care. > >--Colette (from DC) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Collette, Usually hallucinations are a sign of too much Sinemet. They often go away with continued use or a cutback in the amount. With MSA patients sinemet tends to cut the rigidity if it is going to work for them. It is interesting that you mentioned the hospital in conjunction with Sinemet, was he in for an infection? Infection causes that type of problem far more than Sinemet. It would be interesting to see if Sinemet helped him at all to loosen up once the infection is over. Sinemet often helps patients of LBD also, but rarely does it help PAF patients to my knowledge. Take care, Bill Werre ------------------------------------------------------------------ dancowins@... wrote: >Sinemet made my father's condition worse. He had severe hallucinations and total confusion. He locked up and could not walk one foot from bed to chair at hospital. It lowers blood pressure so, his already low blood pressure took an additional dive. But, in some patients, it helps. Certainly worth a try, under supervised medical care. > >--Colette (from DC) > Quote Link to comment Share on other sites More sharing options...
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