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By hubb On 2010.06.05 14:55
Haven't been able to post lately due to just dealing with every day ups and downs of PD. Just when you think you have your days & nights down to a semi-routine, you get a rude awakening. Right now my spouse is having what I guess is sundowner syndrome -- for the past week, around 3 p.m., he gets what he calls the "jitters". He gets very restless. Sits in his recliner (hydraulic) for a few minutes, then wants up to his rocker, then to kitchen chair, then to bed, then starts all over again. First he's hot, then he's cold, then there's too much cover on the bed, then not enough..just can't keep up with it all. It isn't a wearing off of meds - we've been dealing with PD for so many years now, that we recognize those symptoms. Don't know if it's because his whole system has been so compromised by PD, that he can't tell what he wants or when. I do know that he seems to be feeling bad, and after that passes, never is back up to where he was - just the PD taking greater hold on him I think.

We just had a long meeting as members of a PD study group run by VA and local university - know it won't help him but may be of some help to someone in the future. They did a lot of blood testing as they are doing research to screen for variant genes. Vast majority of genetic variants have no biological consequences but it is possible that they might discover a genetic variant in our family that actually causes PD or a related neurodegenerative disorder. They will relate such facts to us so we can notify our sons - when I told them of this they said that wasn't really the kind of inheritance they hoped for - have to joke about it or you cry. They had me in another room going over caregiver problems, but I'll have to admit I learn more from this forum than I did from the professionals.

Know it just breaks my heart when I look at old pictures or have memories scatter thru my mind of how he was before PD got such a hold and now to see him trying to figure out how to sit in a chair, turn over in bed, get to bathroom before an accident occurs. When his motor skills begin to deteriorate, it's very disturbing to him and to me.

I had thought I was having knee problems and sciatica, but was told I didn't help him up out of his chairs correctly. Even though he has lost a lot of weight, he still weighs around 175# and that's dead weight to try to lift. We got a transfer belt from the drug store, and that has helped a lot as it uses my upper body strength instead of my knees and hips & back. Never get too old to learn!

By karolinakitty On 2010.06.05 15:40
Glad to see you back with us .. sorry it's been so crazy for you though ....
Here is a copy of a link I posted awhile ago ... it may help for the sundowning.

By karolinakitty On 2010.04.06 17:02 [Edit]

I am posting a link to an article, written in part by Dr. Bachman, my Pdrs neuro at MUSC Movement Disorder Clinic.
I was researching sundowning when i found it.

http://cursa.ihmc.us/rid%3D1GM097FD0-1SFSKL8-1FVH/sundowning.pdf

By LOHENGR1N On 2010.06.05 20:02
hubb, This disease will drive you nutty, as We all know. You are very correct when you say "I do know that he seems to be feeling bad, and after that passes, never is back up to where he was - just the PD taking greater hold on him I think." Unfortunately, when We feel bad; shakier, slower, more off balance or whatever it is most likely the ongoing dying off of our brain cell's in the substantia nigra. This process is just keeps on going. Hence the medicine adjustments, problems walking, everything. Unlike some problems where patients "get use to a medication" and build up a tolerance to it. We need increases to replace more and more of the Neural Transmitter's that aren't being produced any more because of this death of cells that make them. It is very scary to both Us (patients) and You (caregivers).

I can't say if its sun downing or not, All I can do is to try to explain some of the workings of this Damn disease. And say We know how you feel and we're here for you to help if we can. I've been having a time of as you said feeling bad lately and I know I'm not going to regain where I was before this odd unease recurred again. At times trying to explain how our movements are hampered we've said it was like wearing a cement suit walking in mud. Well I've got another description for P.D. it's like wearing a python! every time you think it's safe to relax and take a breath it just tightens up around you, and robs Us of more. Guess this is more of a vent than help. Sorry I can't be more of a help to you right now, all I can say is I understand. Take care, best of luck and hang in there.

By hubb On 2010.06.06 12:54
Al, you're always of help - just your words of wisdom help because you are actually going thru what we are trying to describe and you know what we are saying. I just read your input in the non caregiver topic forum "The Long Goodby" and once again you expressed so well what this PD journey is about. All caregivers should read this. Thank you.


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