Just wondering...
 

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

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!!

Attachment 1914

Attachment 1913 I love my bumper sticker!!

No, but...
 

...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.

yes.......
 

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

well
 

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...
:(

:Good-Post::I-Agree: 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

Kids, Job, Friends...
 

I'm a widow and my kids have always depended on me to be strong and run things - and still do, so they are pretty much in denyal about the PD; there isn't much other family....my friends just want to be assured that I am okay, and I think I'm being voted off the island at work...fortunately, I have a very supportive Sunday school class! (And long term care insurance) I don't know how this will work as things get worse... Oh - and I see a wonderful psychologist as I can afford to and that really helps. My cat is also very understanding, maybe the most.

well
 

"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!! "


Well, I don't think it is unreasonable to expect your family to be at least a little educated about PD. And I certainly think your spouse should help you research PD. You are very blessed that your family is so involved in your PD. That they care for you and show it. I don't know what I'd do if anyone in my family brought me news about a supposed break through...it would be such a shock to know that they were looking...

The last thing I would ever do is to "rub their nose in it."

:eek:

Hugely.
 

I am very spoiled. My husband helps me hugely. He is wonderfully supportive without hovering and without any cloying babying, which would drive me to despair. I was always the caretaker and he the sufferer of a myriad of small and not quite so small ailments. We are both still shocked that I am the one who has PD, I was always so strong and healthy. And I am amazed at the amount of help and support and compassion I receive every day. At the same time he respects my wish to manage my own illness. He does not take over. He is interested in the information I discuss with him, but he does not make my illness his project.
I am convinced that his support and love play a huge part in slowing the progression of my PD. He helps me cope with the illness with humor and patience, and we make the best of what we can't change.

Our children are concerned about me, but talking about my illness is painful to them. I was, and still am, the family's 'Rock of Gibraltar', and it is upsetting when a rock you depend on begins to show signs of weakness.

Remember the woman who lived under a boat, in Dickens's 'David Copperfield? She became a new and bigger person when she felt needed. Some carers become good carers to their own surprise. And some just don't have it in them.