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 Parkinson tremors, exercise or not 
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Joined: Tue Oct 25, 2011 2:57 pm
Posts: 9
Post Parkinson tremors, exercise or not
My husband has terrible problems with the effects of parkinson. His legs shake so bad that he can't walk. He just freezes up. Is it best for him to keep trying to walk when he gets that way or should he go to the wheelchair? Seems like everytime he tries to do much in the way of exercise he gets worse. He has tried Symmetrel (Amantadine) with no improvement so we discontinued it. He also tried Neupro Patch which caused him to be catatonic for 2 1/2 days when the patch was left on for less than 18 hours. He has had physical therapy but it didn't help plus he doesn't comprehend what the therapist tells him. He has been diagnosed with LBD for 13 years and is definitely in phase 3 and is showing signs of some of phase 4, according to a list I found posted on May 29, 2007. From my experience, LBD is the most terrible disease that I have encountered. And doctors that don't know about it don't seems to want to know. At times I feel like there is no place to turn except to people who have gone through, or are going through it with a loved one. Thanks for your help.


Mon Sep 17, 2012 11:55 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Parkinson tremors, exercise or not
Is he not on any Parkinson's medication [carbidopa/levodopa] like Sinemet or Stalevo? My husband has had to take increasing doses of Stalevo or Sinemet since his diagnosis in 2005 and, without it, he would be unable to move a muscle or even be able to swallow.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Sep 18, 2012 12:53 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3302
Location: Vermont
Post Re: Parkinson tremors, exercise or not
If PT seems to help, I'd be all for continuing it. When a person is unable or unwilling to do the exercises on their own and they are deteriorating with or without PT, I'd be inclined to stop it. I think a lot of money was wasted on PT in my dad's last couple of years since he could not or would not do the exercises at home and didn't really understand why it was so important for his physical health to do them. Cognitively, he just didn't get it. Then when he started getting mad at his PTs and several quit, I told the ALF director NOT to schedule any more appointments because it was just a waste of time and money.
When it was working for him, it was great. You'll know if it's worth the time and money invested. Good luck. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Sep 18, 2012 9:15 pm
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Joined: Tue Oct 25, 2011 2:57 pm
Posts: 9
Post Re: Parkinson tremors, exercise or not
Thanks for your replies. It helps to hear from somebody who has been there. He has been on 2 parkinson meds, one that did nothing and the other had terrible effects. He doesn't seem to understand what the PT is all about. I, too, think that a lot of money and time is spent on PT. If a patient doesn't have the cognitive ability to understand what he is doing and why, then I don't see continuing it.


Wed Sep 19, 2012 10:39 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Parkinson tremors, exercise or not
My husband had PT twice, about two months each time, with no benefit. Of course, the philosophy of PT is to teach the patient how to do the exercises, etc. This doesn't work with dementia. And, over the long haul, someone with Lewy is not going to regain lost function.

What he has now in the SNF is 'restorative' therapy, the purpose of which is to prevent or delay contractures and to keep muscles toned. This seems to be beneficial. There are probably instructions for doing these at home, too. They are very simple and can be done from a wheelchair. A few items are used that could easily be substituted for the ones the therapist uses. I would ask your LO's PT about it or maybe a geriatric specialist.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Sep 19, 2012 12:02 pm
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Joined: Tue Oct 25, 2011 2:57 pm
Posts: 9
Post Re: Parkinson tremors, exercise or not
We had a new PT yesterday. You should have seen his expression when I told him that we had Lewy Body. He'd never heard of it. But he seemed very interested and said he would do some research before he comes back. I sure hope so. He is going to show me some ways to do things for my husband so as not to hurt myself. I don't know how long I can keep this up. Hopefully he will give me some good pointers and it will make it easier for me. TrugieG


Sat Sep 29, 2012 4:57 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Re: Parkinson tremors, exercise or not
Trugie, Hang in there. My Loved one has been on Physical and Speech therapy and has made amazing progress. She is almost to the point of getting out of her chair on her own. Doing a lot of things that just 6 months ago she could not do. Then are changing her from the Exelon 9.5 to 13.3 MG patch. Because of the way I have to do it right now until the 13.3 becomes available I figure she is getting 11.8mg up from 9.5 and what progress! Hallucinations stil there but not as bad.


Mon Oct 01, 2012 7:38 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3302
Location: Vermont
Post Re: Parkinson tremors, exercise or not
You and your wife are very lucky that things are improving! We don't hear about those situations much and I'm so glad that the meds and the therapy are helping her positively. That's fantastic! Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Oct 01, 2012 4:13 pm
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: Parkinson tremors, exercise or not
Good morning all, I too have good news to share. My husband is on Sinemet...3 pills a day. It was a very gradual increase over more than a month. Also the Exelon Patch at 4.6 and just today to 9.5 seems to be helping too. His mobility is better and his awareness and clarity. Went to Dallas yesterday for our appt w/ neurologist and the PA was really surprised and happy to see the improvement since last month. I know this can all change at any moment but for now I have more of my husband of 36 years back and it is awesome. He still has had a few hallucinations but nothing like before certainly due to the Seroquel...now on 150 mg. at night. They don't want him having any hallucinations so may be top off at 200mg but that would be down the road and again very gradual. Do any of you ever wonder when your LO is doing much better if this is the new normal....sometimes it's almost like the bad days were not as bad but a reality check tells me they were. Do any of you have experience with the results of Sinemet and long term use....I just want to prepare myself for down the road...at least as much as any of us can, but I want to continue looking at the glass half full and not half empty. I hope this makes sense.

Susieg


Tue Oct 02, 2012 12:29 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Re: Parkinson tremors, exercise or not
Susieg, My wife was on 3 Simenet 25/100 a day and they added the Sedroquel 25mg bacause of the hallucinations. I thin the Seroquel was causing the hallucinations as she had very few when just on Sinemet. But she was having trouble sleeping to they gave her the 50mg of Seroquel and it knocked her own to where she could not stand on her own. Back to 25mg with being told to add 12.5 if she becomes agitated. Well, the agitation comes every day when the sundowners kicks in or bad weather. So now she is on 2X Sinemet a day along twith the 25mg Seroquel. She is on the Exelon Patch 9.5 and mpvong tot he 13.3 which supposedly will reduce hallucinations and cognition. 13.3 I s not available until Oct 15 and was approved by FDA 3 months ago. Hopefully this is going to help.Oh yes, she is on Namenda 10mg as well. She is much much better then she was 12 months ago.


Tue Oct 02, 2012 1:00 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Re: Parkinson tremors, exercise or not
I forgot to add. Marie was put on Sinemet 25/100 3 x a day in April of 2006. In 2008 she had an episode where she had no idea who I was. That was when they started the Seroquel. Then about July of 2009 they went to 2x Sinemet. The addition of Exelon patch 4.6 and then to 9.5 was Around July of 2009 and the Namenda added in December of 2010. That was when I noticed a big difference. Yes, she has like 5-6 days running that she will be find althought the cognition is stil lthere, then 2-3 days of pure hell. Back to good days. It always seems that I think the disease is going away, or I should say i'm praying it is when I know better. Good Luck


Tue Oct 02, 2012 1:04 pm
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: Parkinson tremors, exercise or not
Thanks for a reply so quickly. It's reassuring to know others may be thinking (incorrectly, of course) that the LB is going away. I guess it's just the nature of LB since there is no clear cut progression but a back and forth of so many symptoms. When it is bad I think he is right around the corner of going into AL and then, like now, I think that the bad was like a bad dream and the meds are making him better. The meds have made such a dramatic difference that if I wasn't seeing it with my own eyes I wouldn't believe it. That being said if I hadn't seen the bad with my own eyes I wouldn't have believed that either. The downs have been so sudden and overwhelming that it's a constant concern wondering if and when they will return. Right now the past week has been so much better. I pray for all of us every night....my husband and me as well as all of you out there with LB and your Caregivers & family.

Susieg


Tue Oct 02, 2012 1:52 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 188
Location: Portland, Or
Post Re: Parkinson tremors, exercise or not
What amazes me is that my mom has had such a dramatic change for the better without any medication changes. She doesn't take any Parkinsons or LB medications, yet she is markedly better than she was at this time last year. She is sleeping a lot more than she used to, but besides that she is more coherent than before. She is reading again, which she loves, and telling me how to care for her yard (oh boy! :roll: ). I know this won't last so we just enjoy it while we can, and hope she stays this way til after her 80th birthday party the end of this month.

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Wed Oct 03, 2012 10:49 am
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