For those who care for someone with Parkinson's disease
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By worriedaboutdad On 2010.06.17 22:48
Well, we have really lost ground. Daddy went to the doc about his leg and as suspected, it is infected. The doc sent him home with meds and told him to keep his legs up and NOT GO OUTSIDE. Well, that was Monday. Since then, we have also had a home health nurse coming out to dress his leg and give him antibiotic shots. He has kept his leg up without complaining (because he knows the other option is the hospital.) Anyway, since Monday, he has lost what little strength he had left. We have to help him do everything. His blood pressure drops when he gets up but then will soon stabalize when he sits. He even asked for the urinal tonight because he is too weak to go to the bathroom. He still won't let us stay the night. We are fast approaching (actually probably there) time that something has to be done. Also, please forgive me if this next statement is wrong but.....the nurse has suggested physical therapy. Now, to me this is ridiculous at this point. Does she not get it? Am I wrong that it is not going to help? I have also come to realize that MOST people who haven't experienced PD don't get it. They think you shake, but don't realize just how debilitating and horrible it can be.

By LOHENGR1N On 2010.06.17 23:55
Worried, I don't think you're wrong about the PT. Your Dad is 80 years old, has an incurable degenerative neurological disease that is not just tremors. It effects the whole system, breathing, blood pressure, heart, movement and the list goes on and on. This reply is different for Me, I'm the one who urges fighting tooth and nail against this disease. So please those reading this answer do not think I'm saying to give in and give up. I'm not! I'm saying at times we have to know to pick our fights. I'm not saying someone 80 years old doesn't have years of life left either. One has to look at the quality of that time left and decide to make it as comfortable and good as it can be made. Along with that one has to consider the dignity of the Patient and their family. I think if it were me in this situation it would be time for a sit down with family to discuss this. To consider how much if anything is to be gained by PT. Is it going to offset the stress and exertion involved? Remember at different times our medicine can make it look like gains have been made at other times it will look like nothing has been gained. What will the PT do for the other aspects of the disease which is still progressing at it's own rate? It's a hard position to be put in and everything has to be weighed pro and con. Many Physical Therapists don't know much about PD, nor do they realize how much our med's do help. (this is changing as more come into contact with PDer's but it is still little understood in general). I don't know if this helps at all. I do wish you and your's the best in this decision, don't let the medicos bully you into any choices, through guilt or their misunderstanding of this disease. Take care, best of luck and hang in there. Sincerely Al.

By Emma On 2010.06.18 07:17
Worried, I agree with everything Al said. Sometimes PT can help a bit if it's earlier in the disease but at this point I think it would be totally useless. Maybe after the leg heals he will regain some of what he's lost or maybe he won't. Either way it is probably time for a family meeting with your dad to discuss what is going to happen next. You are so right that one thing you learn with this disease is that people who haven't had to live with it, including people in the medical profession, don't know what it's like. I always listen to what they have to say but then I do what I think is best because I am the one who sees what is really happening on a day to day basis and I am the one who knows what he can and can't do in the real world, not in a textbook or medical journal. Good luck and keep us posted.

By hubb On 2010.06.18 10:05
I agree with Al and Emma. PT was prescribed for my 80 year old spouse and we tried it and kept at it for 6 weeks, but it was very very tiring for him and almost did more damage than good. Our philosophy now is just to try to keep him as comfortable as possible for as long as possible. Sometimes you can get more common sense from your family doc than from neurologists - they know which meds and what they should do, but only you know how they affect your PD person. We have found that a weekly massage helps him more right now than anything else. But mostly caregiving is a trial and error method - if something works, great...but if it doesn't, try something else and common sense will get you further than a lot of dr. recommendations sometimes. Don't mean to put the medical profession down, but after all these years, you learn, and this forum has been most helpful to me - just listening to other people and how they deal with the same problems you have. So keep trying and good luck.

By parkinit On 2010.06.18 13:51
If your dad was active before, I wouold suggest you take up the PT. This is someone who can help keep an eye on your dad, who notes his increase or decrease in his health status, she can work with him on balance issues, keep muscles from atrophying (sp?), and most importantly, continue to give your dad hope. I would say a resounding "yes" for PT - especially because probably medicare will pay for it and the benefits derived are several. We have PT 3 times a week and it gives me a break plus helps my spouse with balance issues as well as other issues...

By worriedaboutdad On 2010.06.18 14:53
You guys are so AWESOME! I still think we are past the point of PT, but if he wants to try it, we will certainly try it. His mind is good, so it will be his decision. It is just frustrating sometimes listening to the nurse. Don't get me wrong she is nice and means well, but I just don't think she really gets it. He told us today he is having double vision. That's new. He did seem some better today when I was helping him with lunch but he is still so very weak. Again, thanks so much for the support!

By Lotsapies On 2010.06.18 20:32
Hi Worried
My husband tried physical therapy through the VA. The therapist put a hold on the sessions after 4 weeks twice a week. The therapist said it was really causing a negative effect on his symptoms. He was newly diagnosed and just beginning on his medications. What he went through after therapy was not helpful and increased his shakiness and balance issues. It was a relief for me when she suggested canceling the sessions. She did give us some helpful exercises that he could do at home. Utube has some good videos on some flexing exercises that we have tried. Hang in there-

By parkinit On 2010.06.19 09:38
You can request PT in the home. This is what we do. Much better than going to a facility. Also, my husband has had double vision for some time. He just doesn't share it with many. I suspect it somehow goes along with Parkinson's.

By susger8 On 2010.06.19 14:02
My dad is 87 and in late stage PD. He uses a wheelchair most of the time, but can walk short distances with a walker if someone helps him stand. He actually benefits from PT in the home. They don't ask him to do anything terribly strenuous. It's more to preserve some range of motion, since he has a lot of muscle contracture and his legs are very stiff. I don't think it's a crazy idea, since it sounds as if he's been a pretty active person up until now.

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