mary

i totally empathize with your pain. life sucks when a spouse is not compassionate. you desperately need signs of affection from your spouse.
pickup the book his needs her needs. it will be quite a bit to chew on because your relationship with your spouse is very complex.

randy

Mary Frances...to Doreen who has PD...and I want to tell you that I continually research PD...all aspects...medications...adverse side effects...what's new on the horizon, etc. I am constantly searching and researching and, in fact, Doreen often chides me for spending so much time with this...that I'm too "into" PD...but, that never deters me because I feel that as her carepartner, it is my responsibility to do what I do so that I can be the best possible carepartner that I can be. I'll give you an example of how my "carepartnering" recently resulted in resolving a horrendous situation. Doreen's neurologist prescribed a medication precisely to control her now progressing tremor...and it certainly was the answer...absolutely controlled the tremor...really, eliminated it...BUT, the terrible adverse side effects almost "did us both in". Initially, I began to notice some things that just didn't seem "normal"...disorientation...confusion...disorganiz ed (so not like her)...lack of short-term memory...but, she still continued to work as a medical assistant so that I felt surely it was just I who was alert to these things...that surely, if she were not able to do her job, someone would have spoken with her AND with me (they know me well enough to have done that), but there was nothing coming to me nor to Doreen so that I felt that I was being unduly concerned. To make this as brief as I can, ultimately, Doreen was "relieved" of her position as the assistant to the cancer specialist in the practice (had been his assistant for 20+ years) BECAUSE she wasn't able to function in that position due to the cognitive impairment. My first and most fearful thought was that the PD had progressed, but I just didn't feel that this would happen literally "overnight". I decided to do an extensive search/research on all the PD medications that Doreen was taking...and, ah ha...I found the culprit...Cogentin with all the adverse cognitive side effects that Doreen was experiencing. I immediately discussed all that I had learned with Doreen's neurologist who began gradually weaning her off Cogentin...but, this, too was a difficult process in that she had an "attack"that was very like what one would see if/when viewing Michael J. Fox at his worst...and I immediately thought that this seemed very much like a withdrawal symptom occurring during the weaning off period. The point that I've been attempting to make, here (albeit, kind of long drawn out) is that it was only through my observations...my search/research that all of this was resolved...my being constantly alert to PD, its own symptoms and those related to its medications that we finally came through this maze...and I assure you that I will continue my pattern of watchfulness because, for me, this is my responsibility as Doreen's carepartner.

Therese

that's what i want ...
you sound like a wonderful care partner
i would just be happy if some one acknowledged i had pd

mary frances, when you were dx'ed did you keep your pd a secret? from co-workers..friends...relatives?

that is what happened in my family. then it was the elephant in the room. we didn't know if he wanted to discuss it. he seemed to avoid the conversations. never brought up the topic. it was like it was taboo. we weren't given the green light that it was ok to talk about.

it was a bad med reaction that let the whole herd of elephants into the room! we had to tell him he had to tell is what his needs were and the way he wanted things. it's him who has pd, but it effects the whole family.

it was after all that, he said he hadn't felt any compassion from all of us. honestly....if he had only told us what he wanted, we could have expressed it.

have you told your family what your needs are? flat out said it?

so many times the woman in the family are looked at as the caretakers...and the family doesn't know how to swtich the roles.

One point, and an important point, that I neglected to mention is that my husband and I are an old couple, married 49 years. Things might have been quite, quite different 20 -30 years earlier. I know it is much harder to be young and have PD, and to be young and have a partner with PD.
We're getting rickety together, my husband and I.

I wish the world was nicer and life was more fair.......

what I meant by that Mary, is you cannot control their perceptions, and they will undoubtedly feel that way until they understand the disease better. You would never consciously do that, but their perception may be that you are.

We all go through a period where PD "rules" our lives, then we learn to live with it and it gets better.

I'd suggest getting them a young onset group meeting somewhere,, so they could see what can possibly happen for themselves. Thats a stiff dose of reality, but it just might what the doctor ordered.

Charlie

you do not have PD alone, your family has it with you.

Hi Mary,

First...

Second, you've met my wife and know what her personal challenges are as well. She has taken some time to come closer to her own version of understanding and acceptance. Attending the YOPN in Chicago was a big step for her. I've just realized that some people take the scenic route to arrive at their destination, while some of us take the direct route.

I do feel your pain in terms of family though. I have no family personally, so all I have is my wife's family. And my PD is never spoken about. Period. When I was first diagnosed and announced it to everyone I knew, not a single person from her family said a thing. Nada. Zip. Zero. I made video tapes of MJF and Ali on Dateline and other programs and gave them to the family to try and open the communication, provide information, and possibly answer questions they may have had. I've provided copies of articles I've either written or been featured in. No change.

It makes it very difficult for me to be around them. But I realize that I can't change the way they are, or they way they choose to "cope" with this issue, so I just move forward. Like you, I'm not looking for pity or being constantly asked how I'm doing. But an occasional comment of concern or caring would be nice. Hell, we have a woman in our local young onset group whose brother literally drove around the world to raise funds and awareness for PD and I can't even get my wife's family to check out my website or wear a t-shirt! Crazy...

I do envy those with strong family support. I know that can make a huge difference in how you personally cope with your own version of this disease. So hang in there. Things in life don't always work they way we imagine, but we always seem to find a way through it. I know you will as well!

"Life is what happens while you're busy making other plans."
-John Lennon

Todd

Thank you so much!!!! Finally! Someone who understands how I feel completely. Your response was exactly what I needed. You really do
know how I feel. Thank you for your kind, considerate response.

Please consider me part of your family. If you or Joyce ever need anything please let me know.

Mary

I also did not get much support from my now ex-spouse. That sentence says it all.

I was 47 when I was diagnosed and all I was looking for was validation and a little tolerance for what I was going through emotionally. I could go into a long diatribe but won't bore anyone with the details. All I can say is it really hurt, and still does.

My children have learned to understand the disease through my progression and are beginning to "get it".

My parents and siblings have been wonderful throughout this ongoing ordeal.

I give thanks for those I had - I miss them -
so I do not cry much anymore,
unless -a tear escapes
I can't allow the memories to hurt me...over and over
so I try to only remember the happiness that I had for it was a gift...

and those that love me - I am very grateful I have ... and they are my presents

I can not change my past/ I can not change people -that is not my job
I live -one day at a time, and try to live in that moment and be happy in that very moment in time.
and I look forward to eternity where time is no longer relevant...
but love still is~

to sum up I'd say:

Life is a poem by emily dickinson - she broke all the rules of poetry -
she did not write for money or fame; and when she showed her work to a friend -he told her she was not talented
so she wrote her poetry because it made her happy - actually ~
most of her poetry was published after she left her mud body behind
for she was headed towards eternity


luv and peace to youall...