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Hi all, I am a "lurker" here --- read everything, tho !|
My hubby has had PD for about 8 years, just guessing. Diagnosed 2 years ago. Has had 2 back surgeries that did NOT help the pain. They said it was spinal stenosis, but I am wondering if it was all Parkinson's. He fell from an 8ft. roof in 2002, and I think PD started then--- what do you all think?
He is 79, is borderline bipolar, minimally diabetic, has controlled blood pressure ( just to inform you ).
He is very very stiff from the waist down, and doesn't move his arms more than necessary, and complains about a stiff neck.He uses a walker, and it is getting much harder to get into and out of bed, and chair. He is nearly bedridden. He has some dementia.
He is on sinemet, and other meds. He doesn't communicate a lot. He will start a sentence but can't finish. He is very weak, and sleeps 20 hours a day. ( that is NOT an exaggeration).
OK--now , he fell last week, was in hospital till yesterday, and has been sent to Skilled Nursing. My question is---- how do they make such a stiff person get stronger, when the stiffness is controlled by the lack of brain waves connections.
I think I am just worried that they will try to make him do things that he CAN'T.
Also, when I talked to one DR, she said they thought he had the Lewy-Body type. I said doesn't that have the hallucinations? And she said how did I know that he didn't. Well, I guess that I don't know--- but how do they ?
I am quite, quite confused, and as you all have said---- the Docs don't know as much as WE do.
So, as I ramble on, I guess I would like to know what you all think. Is skilled nursing a good thing, and have any of you "been there". And do you think the Lewy-body can be a diagnosis when I haven't seen any hallucinations.
You are alllllll so wonderful ! I cannot thank you enough ! My heart goes out to all of you !
Janol... myguy has been diagnosed with LBD also...no hallucinations at all.... While they say "on record" LBD, and hallucinations is supposed to be one of the biggest signs, the big deal is the amount of lewy bodies in the brain. |
None of us will know until death, they can only find them in autopsy.
My guy also complains of stiffness in the neck and back, uses a cane, has some dementia, he's only 54 and not bed ridden.
Our movement specialist diagnosed that due to "insurance purposes" said is really under the umbrella of all the plus diseases.... that may help you a little..
Have not had any experience with skilled nursing at this time with his PD. However with other family members I found it helped and they did not make them do anything they couldn't... they tried, but if refused or couldn't handle it..they just didn't do it...
Physical therapy they say is good, never went through it, but heard many good reports of it here....
Hope this helps a little with your LBD questions...
janol, Hi, you've brought up an interesting point! Your question "My question is---- how do they make such a stiff person get stronger, when the stiffness is controlled by the lack of brain waves connections." The answer is you don't! Many People think and the Medical Field is among them, that We lack strength. Strength to counter the muscles which twist Us or draw Our feet or arms up and round our shoulders! You hit it right with stiffness caused by lack of brain wave connections! The dopamine We take helps to establish or re-establish these connections. Physical therapy has made some good steps forward in finally beginning to recognize this but many haven't caught up as yet. We tremble from the disease not as many perceive from exertion of a task. You just might have some educating to do with the staff and Doctors in his rehab. Stick to your guns! Don't let them dismiss you, bring printouts of articles with you to show them but beware there are some who won't like being corrected.|
As for LBD, Parkinson's Disease is defined post mortem by presence of lewy bodies. However in a different part of our brain than LBD. The diagnosis of LBD is based upon actions of the brain in parts not normally effected by Parkinson's Disease.
Our "soft voice" isn't per-se weakness but the inability of control of our vocal cords, wether the cords themselves or the position our disease shapes our body into thus muffling our speech. The not moving his arms more than necessary and stiff neck are all part of the disease. Sleeping so much could be side effect of med's or depression or both or like you say just so tired.
Here's a tip for everyone or anyone out there who is interested. You can tell if our med's are working at optimum levels by our walking, by our arm swing. With a "normal" walk the arms swing opposite side of the leg ...try it left leg forward right arm forward and vise versa (about 6 to 9 inches forward and 3 to 6 behind us)all natural unthinking autonomic nervous system control. When our med's aren't up to snuff we lose this the swing is less or absent (hint this is also a cardinal sign looked for when first diagnosing and then throughout the disease by Neurologists and Movement Disorder Specialists for how well our medications are working and if or when any increase might help).
I hope this helps janol, keep posting we're all here to help you in any way we can and remember to be proactive in your Husbands care! If they say something you don't quite understand question them make them take time to explain it to You. Keep Us posted, we're all in this with you! Remember you're NOT alone! Take care, best of luck and hang in there.