After spending a week in the hospital because my darling husband could not get out of bed unassisted and slid to the floor. Could not lift himself up and I am not strong enough to help him. Called 911 and they picked him up and tried to convince him to go to the hospital. He refused. This goes back about a week and a half. Once he is lifted up he can walk with a walker. The second time it happened, same day I told him no choice. After 9 hours in the ER he was diagnosed with dehydration and renal failure and admitted. His heart issues thank goodness remained stable, all tests came back negative, renal failure responded to normal with hydration. Any test they gave him, communication was impossible, have asked for his hospital records, they kept him for a week and since he is very weak, cannot get out of bed himself still they sent him to a rehab facility with the recomention that he needs to get strong enough to go home with my assistance. He is getting physical therapy and that's about all he needs. Oh yes, I know I said this before he is 77 and I am 76. Yes he is on Sinemet, if I spelled that right, along with his blood pressure meds. They took him off Amiodarone at the hospital last week to see if that is causing it but it doesn't seems to have made any difference. Is extreme weakness park of this horrible disease? I am getting no where fast. So frustrated and no answers since he suddenly got it after a stay in the hospital to treat AFIB and was put on the Amiodarone. Hospital Dtr said Parkinsons and that is it.
MORE FRUSTRATED: After spending a week in... - Cure Parkinson's
MORE FRUSTRATED
weakness is a symptom of PD.
Please watch for more replies herein and also take time to study/research AND seek second and third opinions from professionals, avoiding fraud remedies and announced "professionals"
Going to try and get an appointment with a movement specialist supposedly very good, recommended by 2 of his Dtrs, primary and neurologist.
Frustrated. Recommended a DVD, Parkinson's Disease and Activities of Daily Living by John Argue. This DVD shows methods of adapting to the challenges of moving in bed as well as getting out of bed for PwP. Would anticipate that Physical or Occupational Therapists would deal with training. Google John Argue directly to purchase the DVD. Many other challenges addressed such as Caretaker assistance in getting out bed safely.
Good Luck
BillDavid
have you hada visit from an OT . If not ask for one . Don't be put off .
until then Google the things you are struggling with . all the answers are ther .
how to get out of bed , turn over in bed , what to do when u freeze . I could go on and on .
I am 78 John is 81 . he is now chair or bed bound , but have all the aids we need to him hi and myself safe in our own home .. this includes if and when needed help of a continence nurse who will ly any aids on that department .
Hi Cabbagecottage, Don has had OT and PT but this worsening has be baffled. One Dtr in the hospital said he does not has PD the other said yes. He is in a rehab facility to see if they can get his stronger. My concern is the sudden weakness and his inability to stand up when trying to get out of bed, which is why the hospital stay and now rehab facility. There is supposedly a specialist about an hour from us that deals specifically with movement disorders. Plan for today, call our primary and see if he can get him an apt ASAP Trust me, I might be 76 but am not afraid to ask for anything. Appreciate your input. BTW, are you in the US?
This is sure sounding familiar! Yes, getting in and out of bed can be a big problem. My mom had PD and was in a lovely assisted living complex in Edmonds, WA near relatives, which for a while sounded pretty good. But the limits of assisted living became clear when she fell out of bed and no one was there to help. Who knows how long she lay there! Your husband is lucky to have you, but there are limits to what you can do. There are people in this group who know much more about coping with this problem than I do, but I can vouch for the importance of making your husband's health practitioners aware of what you need, and insisting on second and third opinions. I must say, it's something I think about now that I am sick too and I look down the road at what may lie ahead as a person without a life partner. All the best to you and please keep us posted!
Hi Beckey, Yes there are many limits to what I can do. Lifting him off the floor if he slides off the bed, sofa whatever major issue. I am petrified when I leave the rehab facility because I am afraid he will try to get out of bed on his own or the wheelchair. I can't drive at nite, so have to leave when it is light out. As I said there is a facility about an hour from us which specializes in movement disorders. Want tp get him there ASAP but when I called my primary their computers were down and couldn't leave a message. I am hoping that place can verify definitely that he has Parkinsons. Maybe he needs an adjustment of his meds, who knows. Found out today that 3 of his meds were screwed up in the records they sent from the hospital. Can't win. Think positive sweetie, I am trying so hard to be that way but it isn't easy. 5 weeks when this started, so fast and so many issues to try to figure out.
You know, a doctor once told me that it can take a while before they strike upon just the right combination of meds and the ratio of one to another. You're right, five weeks is early on. Would your insurance pay for a home aide to come in just at certain times on a temporary basis, or have you already ruled that out? It sure sounds like you could use an extra hand!
Now that he is in rehab they will not release him until they feel he is capable or has the help for him to be safe. Have to ask his insurance about that, couldn't hurt. Sure would love an extra hand, if I could grow one, would be very happy. Your right about the right combo of meds as well. BTW Beckey my grandma was Beckey. Going to make some calls tomorrow including the rehab center since the SOB's never answer my calls. He has a Dtrs apt Friday and have gotten no calls back on either transportation by them or if I can take him myself. GRRRR
the only thing i have ever heard similar to this was when i volunteered at a health and rehab home. the husband and wife could not handle things on their own. so it was off to the nursing home. well the husband expected his wife to do for him as she did before. and she couldn't , of course he insisted. so she had herself changed to the room next to his, so he would have to have them do the helping. bottom line is , you have to think of your self too. take care of the care-giver. you both need help,but you can't do it. if your not good for you, you can't be good for him either. and i think you understand that. maybe you could tell him that. or have the doctor or nurse explain it to him. good luck. judam6.
Don't pay attention to others than your doc or one you will see. Parkinson's is different for each PWP. I once was in a hospital where the hospitalist (so-called doctor) decided that I did not have Parkinson's and he withheld my meds. I couldn't move for days. Stay strong. Be sure husband gets Rx on time every time. Put signs up with schedule all over the place or manage them yourself, if possible. General staff unaware of Parkinson's patients' needing Rx on time. Make them aware.
Rehab is best place now. Therapists have been best treatment for me. They know more, and are hands on. Use the heck out of them. Take care of yourself. Egads, when the going gets tough, it's hard to keep going. Hugs.
Just a thought, maybe not relevant, but when you say he "slides" out of bed I wonder if he has stiffened up during the night and isn't able to bend well at the hips and knees when he tries to sit up on the side of the bed. Maybe if he did a few stretching exercises in his legs and hips before he tried to get up he wouldn't tend to slide off. But of course, if he's in a hurry because he has a full bladder, he won't want to wait too long.
Hi Marion 11005, Its a thought and a good one.
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