anyone with experience w/parkinson's disease

[malphy]

Does anyone have any experience w/parkinson's disease, particularly young onset pd? I am wondering about the cognitive effects of the disease.

Dh, soon to be ex, seems to be severely affected cognitively. He does/says things that make no sense. I think this is why we r getting divorced. he is seeing new dr and she said she cannot tell me if this is from the pd or a side effect of a med he should never had been put on. It will take at least 2 months to wean him off it and for dr to know if meds were root cause

I have been trying to hold out to see if I will get my old dh back but he and his family are making it very hard.

I just want some insight from someone familiar w/this diseqase. Unfortunately there is no yopd support group anywhere near

Tia

[randomkid]

I have not had any experience on a personal level with Parkinson's disease, but have worked with numerous patients with the diagnosis. I do not have any particular experience working with early onset PD. However, I can tell you that it does seem unusual for your DH to have cognitive issues so early on. It does happen sometimes that people will have cognitive deficits with the disease in the early stages, but I'd consider it unusual. I have often had patients with late stage PD and they are still quite intact cognitively. They may seem to have deficits, but that is often due to the motor aspect of decreased initiation, slow response time, etc. It just makes them seem like they are not "with it".

I would wait to see what happens with the weaning of the medication before making any judgements. Is your DH's physician a neurologist or movement disorders specialist? I would possibly look into a second opinion if you feel your DH is not getting the best possible treatment. I looked at Michael J Fox's website http://www.michaeljfox.org/ and there does seem to be some good information there. You may just want to do some reading there to help with your understanding and possibly bring more questions to light. I would also recommend finding any Parkinson's support group and trying it out. It may not be for you, but you never know. There may be other people and families there of younger onset PD who are in the same situation as you (no other group to attend). Even so, if you are the only younger one, you may find the older people to be very helpful and caring. They can certainly give you first hand accounts and help you to know if any of them have experienced early cognitive changes.

I'm so sorry you and your family are going through this. I would also recommend counseling if you haven't already pursued it. Support groups can be helpful, but some people don't like them. Individual and/or couples counseling certainly could be more helpful. Even if your DH refuses to go, you should go on your own. This is a tough situation to be in and a difficult diagnosis to face.

[mom2binsd]

I also don't have a lot of experience with early onset PD, but have seen many patients with PD who are older and generally cognition isn't impacted. It sounds like there could be either side effects from medication or something else going on, or the diseases may be impacting cognitive skills. Am sorry to hear that you are going through all of this.

[luckytwenty]

I just found out one of my favorite graduate school professors has Parkinson's; he kept it a secret for decades.

This is an article he wrote about the experience. He talks in great detail how it affected his personality. It doesn't sound to me like he changed who he was at the core.

http://blog.michaeljfox.org/author/kermitmoyer/

[Kymberley]

I have no experience with early onset PD either, but my grandfather suffered with it for several years. I know how devastating it can be. I hope you find some answers. You are in my thoughts. :hug: