Do you get enough support and compassion from your spouse and your family?

NO!! Haven't had that in 19 years of this thing. Althought my daughter's are beginning to come around.

But the PD community and my fellow advocates and forums like this that tolerate my long-winded posts in places like Steve's weekly check-in...are my empathic, supportive and compassionate famly!!

hugtextw.gif

bumpersticker2.jpg I love my bumper sticker!!

...she has her own problems and is stretched much too thin. It is almost certainly a mistake but I make a point of not telling her how bad this thing can get.

most of the time they do. They do not help me unneccessaarily, but they know when I need help and always offer a hand. They are very good about catching me before I fall too.
Their level of assistance is just about perfect.

Compassion, you'd have to ask them!! I do not like people feeling sorry for me. It is not neccessary.

charlie

Charlie

I don't want anyone feeling sorry for me either,
but a little compassion would be nice.
It would also be nice if they put forth some
effort to help me research PD.
PD is the elephant in the room that no one
speaks about...

MaryFrances!!

most people ignore what they do not understand or cannot control.
my kids always are always bringing me news about new breakthroughs.
I think though it is a bit unreasonable to expect your family to help you research. Thats kinda "rubbing their nose in it", so-to-speak. My recommendation is to have an informal "update" once every week or two. "Plant the seed" and see what comes up!!
Ignoring your PD will help them short term.
your family will come to accept your disease in time.

just as you will.

you are the BEST, regardless of your PD. DOn't forget that ever!!

your friend
Charlie

i've been lurking here awhile. and i know mary frances quite well. and yes i can testify that she has received very little support from her family.

i'm 43, had this #%&&** disease several years now. I used to be a marathon and 10k runner. now i struggle walking a mile.

this past year i've really wondered why my spouse of 19 years has had such a hard time providing support and care. I think partially it is the seduction of the disease. I look good externally (she says) but i agree that the real battle is internal. I also think she is scared as hell about my future, and lives in denial.

where i live, part of the folklore of the prevailing culture is "take care of yourself" ...which i believe is unsustainable in a life with pd. so i've broadened my scope to include those who really care. Mainly I think we often need words of encouragement. For example when a fellow parkie says "pd sucks" i laugh and the day gets a little better because they know it far too well.

Instead of getting bitter, I've become activistic in pd stuff. I dont know if its gonna change the world, but im swimming and not sinking.
so hang in there everybody. looking forward to meeting more of you

randy from beautiful lake country in minnesota

My story is a little bit different ...

When I was diagnosed in 1999 at age 41, one of the first things I decided to do was to divorce my husband of 19 years. I instinctively knew that this disease was something I wanted to face on my own; that I wouldn't have the strength to deal with it, a young daughter (who was 10 at the time), and a relationship that was rocky at best.

My husband was not happy; but I persevered. Our divorce was finalized in 2001. Six years later, my ex and I are great friends, I think mainly because we had a daughter to raise together. She is a freshman in college now, and the three of us spent Thanksgiving together yesterday. Mark says it took at least two years to let go of his anger; he now says it was the best thing I could have done. I am remarkably happy, and I have no one to please on a daily basis but myself. I am incredibly fortunate, because this outcome was not one I sought, nor thought would happen when I initiated the divorce. It is just a great relationship that emerged over time. I even am friends with his new girlfriends! (there have been a few ...)

Regarding my family, my daughter treats me as if I don't have PD, I think because I have refused since the beginning to make any changes in her life (besides the one HUGE change of divorce) due to my illness. No extra chores, no missed vacations, no excuses. She has done volunteer work for the Northwest Parkinson's Foundation and helps out at local conferences. I would appreciate MORE sympathy from her, but am grateful that she stills likes to hang out with me, even if she cuts me no slack. Harsh.

The rest of my family lives in Colorado. My parents are in their 70's, and wish I were closer to home. They have been an incredible support - bought me a condo when I lost my house. They are not rich, just frugal - and the product of loving parents themselves, who left a house to them when they died. They are proud of the advocacy work that I do, and for the first time in their whole lives did not vote Republican for president because of the stem cell issue. My sister volunteers for the Parkinson's Association of the Rockies in Denver (she stuffed envelopes a couple of weeks ago for them).

I have to think they would have loved me no matter what, but I think the way I dealt with the PD helped with the way they responded. As soon as I was dx'd I told everyone that I knew, including everyone at work, and I live as openly with it as possible (telling anyone who stares at my shaky hands that I have Parkinson's).

The support given me by (ex)spouse and family is incredible. I realize how lucky I am, and am overwhelmingly thankful for their love. I could not have foreseen my current situation as I struggled through divorce and job loss six years ago; it was an evolutionary process.

I will be 50 years old on December 1, and I am utterly delighted to be alive!

Thanks to all who contribute. We each have different stories but I know that it's GOT to help more than just me realize that we're "normal". If I've said it once, I've said it a billion times ... this site is honestly, hands-down, what keeps me sane. I know that I can turn to any of you, any time, and you'll understand .... truly understand.

Right now I'm at a turning point in my life which many of you know. To stay married or not. I am so very undecided on this issue, and change directions more time than the wind. My prayer is that God make it plainly known by slamming every door shut but one. And, dang it, patience is not my best virtue! So for those who believe in the power of prayer, please send them to Houston, TX.

During this holiday season, I am thankful for this website, the moderators, and all the contributors. It wouldn't be what it is without the people involved.

You guys (and gals) are the best.