New PWP with a CG Question

Beachdog · Posted: Wed Oct 21, 2009 6:45 pm Post subject: New PWP with a CG Question

Howdy CG's ...

At age 61, I was Dx'ed with PD about a month ago and have been getting my head around being a PWP and a deteriorating quality of life.

My CG is my DW (which I assume means Devoted Wife) has been very supportive and helpful in my early stage of PD. She is confident of being a good CG with the motor symptoms I will encounter.

However, she is very concerned about the future of dealing with the non-motor symptoms that may come about. One reads of hallucinations, punding, dementia, hyperactive gambling, and other problems brought on by PD and the meds.

Not sure what advice I am seeking but if anyone has a thought or reference about dealing with the unknown future, it would be appreciated.

Meanwhile, I remain optimistically ...

PWP Rich

coacht · Joined: 15 Oct 2007 Posts: 89

Beachdo or Rich,
There are a number of places to go for info for both you and your wife. For you wife more specifically,

http://health.groups.yahoo.com/group/Parkinsons_caregivers_corner/

http://health.groups.yahoo.com/group/pcsg/?v=1&t=directory&ch=web&pub=groups&sec=dir&slk=5

for both of you

This website. also the following websites and their links.

http://www.apdaparkinson.org/userND/index.asp

http://www.nwpf.org/

There are many others and there are usually local support groups. Remember as one person said "If you have seen one person with Parkinson's you have seen one person with Parkinson's". The disease is very individualistic as far as speed of progression and symptoms seen. That drives me nuts and others as well from what I have seen. Can't predict anything other than it will progress somehow someway.

Coach T

Beachdog · Posted: Thu Oct 22, 2009 9:54 am Post subject:

Thanks Coach ... would be nice to have a roadmap to the future but no one is that lucky.

Will be checking out the links!

Rich

sea · Joined: 14 Aug 2008 Posts: 169 Location: New York City

Dear Rich,

I am so impressed that you are even asking this question. This makes me think that things will be much easier on your DW (I think that's for Dear Wife) than on many other caregivers. One of the most difficult things for caregivers, I think, is feeling like one has to address all these difficulties essentially alone, because the PWP (like my dear husband) is in denial and simply won't talk about the future in any form at all. So I think you are both already way, way ahead of the game.

As Coach T said, every single case is different. And things change all the time even for each particular person. A lot can be found in the archived discussions here. In our case, my DH did have some paranoia last year for a couple months that was hard on us, but then it went away completely and has not returned. Also, our relationship is stronger and more satisfying since going through that. So there is no reason to despair. For me personally, I deeply regret all of the time I wasted feeling anxious about things that never came to pass anyway, or that were not so bad if they did come. I worried for nothing. And that's how worry tends to be. So try to live in the present. It sounds cliche, but the best advice is to enjoy each day as it comes, and to enjoy each others' company as best you can.

This journey is not for the faint of heart, but the rewards are sometimes very deep. I would not trade being with my husband for anything in the world. Of course, I would also do anything possible to take away his Parkinson's and have his robust health return. But given that he has it, I want to be right here next to him, going through this together. It's just life, and a good life at that.

Good luck with this,
Sea

Beachdog · Posted: Thu Oct 22, 2009 3:12 pm Post subject:

Drat ... I forgot about the paranoia :o)

Thanks for your thoughts and the benefits of your experience. Taking each day as it comes and not worrying about the "what if's" is good advice! Now to convince the CG.

Rich

sea · Joined: 14 Aug 2008 Posts: 169 Location: New York City

Rich,

You're making me smile again! With this sense of humor, you two will do just fine.

I can tell you that my DH and I have a lot of fun. And even if he's often in denial and dealing with a lot of scary stuff, he still is somehow managing to grow emotionally and psychologically in ways that amaze and astound me. He is my rock and my best friend. I only hope that I myself am growing at a pace to keep up with him. Things are always deep and fascinating around here. A little curiosity, good will, and humorous joking around go a long way! My best wishes to you.

Sea