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 Leaning way over 
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 120
Location: Dumfries Va
Post Leaning
I founds these posts very interesting as I was hoping to learn something about my wife's lean. However, hers is backwards. Sometimes she is stiff as a board and you just can not move her legs. She is like a pole trying to get out of the recliner into the bathroom. Then sometimes in the bathroom she is so stiff she can not sit down. I have to raise my voice and tap on her leg to get her to respond. She acts like she is in another world when this happens. She never had this problem before the Vertigo incident in Feb. In fact, she didn't have half the problems before that incident that she has now. But, when we go outside to walk it's like it was before she was diagnosed with LBD or Parkinson's.

Any suggestions on what to do for someone that leans backwards?? Thanks and thank God for this forum. There is NO support in the Northern Virginia for LBD caregivers. Seems odd, a place with some of the best (?) doctors and research projects, they don't even have support for us.


Tue May 18, 2010 6:40 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
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What has her dr. said about the leaning? Does she see a PT or OT? I think you need some professional advice about this, as you don't want her falling over backwards and if she's still mobile, you can't be there every min. watching her. Let us know if you get some helpful advice or aids.
My dad's legs and arms go from extremely rigid to extremely flacid. You never know which it is going to be. Since he has a dozen possible diagnoses, it's hard to know what is causing the leaning, rigidity and flacidness (don't know if that's a word!). Since he is totally immobile, the worst we have happen is that he slips out of his wheelchair sometimes because his ataxia does not allow him to sit up and keep himself upright for much longer than maybe 20 min.
Lynn


Tue May 18, 2010 2:42 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 120
Location: Dumfries Va
Post Lynn
The Neurologist at Georgetown said the vertigo caused a "stressor" in the Parkinson's which makes her lean backwards. She has seen a PT an OT and they help a little. It seems that when ever she gets stressed, it is worse. Her legs are like iron spikes in trying to move them. One minute they are loose and then in a instant they become iron and impossible to move.


Tue May 18, 2010 4:28 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
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That is such a strange symptom, huh? I saw my dad's legs go from completely flacid a couple of days ago to "like an iron spike" a little while later. I put his legs on the wheelchair platforms and they were like wet spaghetti, then when he was angry 1/2 hour later and wanted them off I could barely move them. They were stuck in a 90 degree bend at the knee and at the hip. It took all my strength to move each leg and they stayed in that position quite a while.


Tue May 18, 2010 5:26 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 120
Location: Dumfries Va
Post Leaning backwards
I wish my PO had the problem of leaning forward. at least I can figure what to do. But, she leans Backward almost a 25-30 degree angle. Tonight for the first time she is unable to navigate the 2 steps from the kithen down to the family room.It took all I had to keep us from falling. God what don't they find some cures for this LBD!


Mon May 24, 2010 10:33 pm
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Joined: Sat Mar 28, 2009 6:01 pm
Posts: 101
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I have a suggestion: Try using a gait belt that will keep her connected to you so that if she falters, especially going up and down those steps, you can give her good support. She may not need it all the time. You say she can walk well outside. But when she is stressed or frightened, it might help restore her confidence that you will not let her fall.

My husband can no longer stand without support, but for a while when he could manage to move a little, the gait belt was very useful.

Doris

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Tue May 25, 2010 1:57 am
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 120
Location: Dumfries Va
Post Leaning
Thanks Doris. Georgetown University Medical Center is going to give me help of some sort today. I will try and get the OT to get one for me. Or, I'm going to a medical supply store today and will see if they have one.


Tue May 25, 2010 5:27 am
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
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I have used the gait belt and it really helps with support. Good luck!


Tue May 25, 2010 8:54 am
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Joined: Wed Aug 11, 2010 2:34 am
Posts: 54
Post Re: Leaning way over
When I visited dad yesterday I was a little shocked at just how far he was bent over. I had to get down low just to give him a hug! He is still walking around fine despite his position and even one of the other residents commented when we were walking down the hallway " You still on the move" so he must have been pretty active during the day. I originally thought this was due to the back pain he complains of but the RN was of the belief that he is not in as much pain as he probably says he is as he sleeps in the foetal position and he wouldn't be able to do that if the pain was as bad as he says it is. I do believe that he has back pain as he was in a lot of pain when we saw the neurologist a couple of weeks ago perhaps the morphine patch and the antispasmodic drug he is on is making a difference. When I was telling mum about this yesterday she said maybe she should ask for the ALF to give him a walker and he has asked about this himself but reading these posts not sure if that is a good idea now. Will make the enquiry anyhow next visit.


Wed Dec 01, 2010 11:24 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 120
Location: Dumfries Va
Post Re: Leaning way over
My Lo had problems with leaning backwards when she was on Ailect. When they took her off that she straightened up. Now, 4 months later she is leaning to the left. The PT has tried to straighten her out. Her confusion and hallucinations are getting worse. She starts on Nemanda as soon as it gets here. I sure hope this helps specially with the memory and hallucinations. I feel I am going nuts half the time but don't know what help I coud get to make me feel better. We often cry together at night after she comes back into the world after not knowing who I was or where I was.


Thu Dec 02, 2010 9:45 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Mariesmac
I don't have advice for you.... I just need to let you know that I care. We're all going nuts with this disease... Dale isn't having a leaning problem ... He is just now regularly using a walker and cane. However, it breaks my heart when I leave the bedroom to go to the kitchen and he says, "Where are you going? When are you coming back?" We've cried together too.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Dec 02, 2010 10:03 am
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Joined: Fri Jan 23, 2009 4:11 pm
Posts: 31
Location: N Calif
Post Re: Leaning way over
GW is no longer able to walk, but the Lewy Lean is very obvious even in his wheelchair-Sometimes left -sometimes right. We put pillows in the side of his wheelchair that help keep him upright. also the wheelchair has a reclineable back, also helpful.
I think it is his hallucinations that cause him to constantly reach forward and then to the floor in front of him. Several others at the ALF do this also.
Moving him is very difficult. I believe it is the fact that it takes a long time to mentally process causing the difficulty. I believe he thinks moving will hurt, so he will become very tense. therefore it does hurt when carehelpers make him move his arms or legs. I try to give him advance warning and ask him to relax several times before I try to move him- and just make minor movements to show him it does not hurt, then I can help him stand to transfer from wheelchair to toilet etc. much easier. I may be wrong, but it seems that the mental processing time is the cause of the muscle freeze. Di

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Di


Tue Feb 22, 2011 5:21 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Leaning way over
Di.... Since I wrote the last post on this thread in December, Dale can no longer sit, stand, or walk unaided. He is mostly in bed. A physical therapist has been coming to the house twice a week to encourage him to walk but this week will be the last of his visits (since Dale is not 'making progress').

Dale has decided he does not like to walk. I think it takes far too much concentration for him. He is mostly delusional and has constant hallucinations. His legs are usually bent in the bed - though he likes to have them straightened. He also likes to have someone move his torso from side to side.

When he attempts to sit, he leans in the typical Lewy way.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Feb 22, 2011 8:08 pm
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