What to expect with Parkinson's

[dm58247984]

Hi,

I've been caring for my 81 year old father who has Parkinson's since he moved in with me in March. I was wondering if there are others caring for someone with Parkinson's who can give me an idea of what to expect and maybe some helpful tips.

My dad's current symptoms are shuffling, freezing, tremors, weakness, occasional trouble swallowing and incontinence. He needs help with pretty much everything. He has a lot of anxiety and is easily upset. When he gets anxious, his condition gets much worse - he can barely move and he loses bladder control. It's really sad to see him deteriorate like this, he was fit and healthy his whole life.

I'm really happy I found this group. I've been reading the threads and can relate to many of them. I don't have any help and feel very isolated sometimes. 

Thanks for listening!

[jocinti]

My husband has not been diagnosed with Parkinson's, but has been diagnosed with familial essential tremor. He used to be so active , making balsa wood model airplanes from scratch, but now cannot write his name, or hold a sppn and fork steady enough to eat. I would love to get him into a trial for this stabilizer. Can you tell me how to do this?

[rt5438]

Just read here abt a device that prevents hand tremors-in the next breath they say it will not be avallable for years- Big Brother protecting us-yes sir!

[tpmcgoo2]

HI,,,,I just saw your post re: Parkinsons and wanted to touch bases.   I have been caring for my husband for over 10 years with PD and have gone through quite alot in that time.  He has the DBS...deep brain stimulator.   That has made an incredible difference with his tremors.  Without it he looks like he is having a siezure with arms, legs, head, jaw all going at the same time.   We are extreamly grateful for it!   He also had trouble with swallowing and choking so he is now on honey thick liquids.   Some foods are especially bad also like rice or anything grainy like rice.   Has your dad had a swallowing study?  If not that would be an excellent thing to do.  Does he see a PD specialist?   We live near Portland Oregon and my husband has seen specialists at OHSU and with the VA.    We have found both to be excellet.  If your Dad is a vet he  can qualify for a lot of extra help and you too since you care for him.   My husband has now  been referred to the Hospice people at the VA...not that he only has 6 months to live but his PD is advanced and they can offer more help here at home.  Also he has been hospitalized 2 times in 6 months.   he falls frequently...broke his back last time and he gets frequent UtI's that land him in the hospital.   Also, depending on your Dad's assets he could qualify for help through Medicaid, partly depending on what state you live in.   They were very heloful in helping us to get qualified.  So fortunately I have help that comes in daily to help with my husband and also so I can get out.   Write when you can if you want.   I am here.....also check with Parkinsons rescources....they are a big help and have a lot of programs available.   Take care!

Theresa

[dm58247984]

Thank you both for the replies and info!

Theresa, I'm glad you were able to find help for your husband. I really admire you for taking care of your him for so many years. That's interesting about the brain implant, I've wondered how well they work.

We live in PA and my dad is a vet. He is seeing a PD specialist and his next appointment is in a couple of weeks. The trouble swallowing just started, so we will definitely discuss it with him. So far he has only fallen once since he moved in and luckily he didn't hurt himself. How did you physically lift your husband when he fell? I had a heck of a time lifting my dad off the floor!

His main problem lately is getting stuck in chairs and in bed. He's been able to get a lift chair, hospital bed and a walker through Medicare, so those have been a big help. I've brought up the idea of bringing in outside help but he doesn't want strangers in the house. My job allows me to work from home, so I am able to be here with him all the time. One of my brothers will be coming up for a few days in October so I will be able to get out for a bit.

Debbie

[Prosecco62]

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@dm58247984 wrote:

Hi,

I've been caring for my 81 year old father who has Parkinson's since he moved in with me in March. I was wondering if there are others caring for someone with Parkinson's who can give me an idea of what to expect and maybe some helpful tips.

My dad's current symptoms are shuffling, freezing, tremors, weakness, occasional trouble swallowing and incontinence. He needs help with pretty much everything. He has a lot of anxiety and is easily upset. When he gets anxious, his condition gets much worse - he can barely move and he loses bladder control. It's really sad to see him deteriorate like this, he was fit and healthy his whole life.

I'm really happy I found this group. I've been reading the threads and can relate to many of them. I don't have any help and feel very isolated sometimes. 

Thanks for listening!

---

Hello dm and welcome to the AARP discussion boards!  You have elegantly stated your situation with your father and he is fortunate that he has such an empathetic caregiver in you.  I don't have the specific experience to answer your questions but I feel certain there is someone here who can help along those lines.  You have probably done research over the net and are looking for experience that hits closer to home.

Until an experienced resource comes along with a response, I have listed some online resources for your convenience.  Good luck to you and your father!  ~  Mimi

http://www.davisphinneyfoundation.org/?gclid=Cj0KEQjwmayfBRDo25CR9un4hvEBEiQAv9fBbZZYeH6t1r0rP4ll-34...

http://www.parkinson.org/Parkinson-s-Disease/Living-Well/Caring-for-Someone-with-PD-101

https://www.caregiver.org/parkinsons-disease-caregiving

https://www.michaeljfox.org/understanding-parkinsons/supporting-caregiving.php

http://www.webmd.com/parkinsons-disease/guide/parkinsons-caregivers