Hi Mary....forgive me if I`m wrong but reading between the lines I sense there is a total lack of compassion or indeed acknowledgement of your illness .And if this is the case then it paints a whole different scenario.A partner might feel inadequate,or useless in the help department but if they can show compassion and care,provide a hug when needed,then that makes up for their lack of skill in the "nursing" mode.However,if you are receiving absolutely zilch,then this must be so dreadfully isolating for you. You must feel very hurt and I don`t truly know how best to advise you on dealing with that issue.You would be wise to start building up a circle of tried and trusted friends...people who are positive...people who would be there for you.This forum is a start but I mean folk other than cyber friends...who can be physically present in your life. It is so important Mary,that you know you have someone who is on the end of a phone for you.If your husband has opted out of the running,it doesn`t mean that someone else can`t take his place.That was his choice ...for whatever reason...but it shouldn`t stop you from spemding time with people who do care for you.Sending you a huge hug.
Steff
x

In defense of my oldest daughter and while I know my grandson is only 5-1/2 and I have had PD for over 19 years now. My daughter's perspective is, "I have enough to deal with...Ollie's autism...I don't need anymore to deal with."

This doesn't help me at all, not in the 14 yrs before he was born or in the 4 years since he was dxd, but I do understand her issue.

This interesting thing is that when we thought I had the big C over a year ago, she was right there with me, by my side at the doctor visits. As she put it, "Mom, you might have cancer, don't you want someone to go with you?" In my head I was thinking, "Why? No one wants to go with me to my nueorlogy visits, nor does anyone speak of my visits before or after. So I might have cancer, big deal, I already have a death sentence of sorts in my head."

Just why does Cancer get so much attention, whiole PD, ALS, MD, etc. not get much attention. Yes, I know the answer in part, it is in our faces daily on the TV, etc.

A bit of compassion from my sisters would be a nice thing to hear from time to time. A bit of "educated" discussion from and with my sisters would be a nice thing too. But, this is not going to happen and I know it. They are both just glad that I am being "taken care of" by way of living close to my daughter's. My oldest sisters FEAR for a long time was that I would need to live with her at some point and that was going to be a horrible thing for her. Not having her beautiful home to herself was not acceptable. To have to share it was just as unacceptable to her as it is for my daughter to have to deal with PD and autism in the same breath.

You are so right, Carolyn
Could it be that cancer is seen as possibly fatal
while pd is seen as more of a long term handicap?

PD is such a humiliating disease that takes away
the dignity of the person with it, as it slowly but
surely progresses.

Cancer is a killer, PD is a crippler. Cancer doesn't make you dither or shuffle or shake or drool or eat messily. Cancer is dignified and potentially immediately fatal while PD kills slowly and insidiously. There is no drama in PD. We can live for years with PD though it slowly eats away at our health and ease and comfort. PD is a mean illness that often elicits more embarrassment than compassion.

That is so true.

BEMM...I couldn't have said it better.

I know I shouldn't have been, but I was quietly furious with my daughter wanting to tag along for the cancer dx, which gratefully didn't happen, I indulged her...the cancer that is, just a scare.

Having had both diagnoses - breast cancer in 1981 and Parkinson's since 1996 - I can attest to PD being tougher to handle. To begin with, with cancer, the patient knows they just might overcome it. With PD, the patient knows that it is never going to go away and along its route it will chip away, chip away, chip away at your independence.

Now for the reactions of my family to both: with cancer they all feared I might die so they were very concerned. With my PD, they are more laid back. To them I am doing well. They don't understand that while I look okay and "pass" for normal, I struggle with the symptoms 24 hours a day, every day of the year. Nor do they understand the biggest problems with PD are not the physical ones, though they are mighty, but the psychological. You fear the future and note each failing as a harbinger of more disabling symptoms to come. In a way, I shelter them from my fears and physical ailments. How can it help matters if they get as fearful as I am?

As far as talking about it, you are right. There is little or no conversation coming from my family. Once I had two friends from the forum visiting, and my husband asked them a question about PD!! Again, I think their avoidance is more one of anxiety and their desire not to make us aware of their concern because it will make us (especially me) more anxious.

What the heck! Somebody, anybody! Just come up with that cure (some silent cursing going on here).

Ann

it's like anything else in life, you can beat your PD or you can let it rule you.
I do not care what total strangers think of me. I only care that I can get out and do things and LIVE!

MY advice to you all is to GET ON WITH LIVING!! Everyday is a gift, don't squander them!

You CAN beat your PD! You have to work at it, but it CAN be done.
Don't sweat the stuff you can't change!! It will change over time. Be positive about your life. Good things will happen!!
Charlie

A friend got the breast cancer diagnosis a few years ago. I offered her my sympathy and gave her support and encouragement.

And inside I was thinking the unthinkable - that i envied her. I envied her because with breast cancer she had the hope for a cure. While daily I get a little worse, with little hope of a cure.

And when I lobby my congressmen for PAN each February, I tell them this.

(And I am very happy to say that my friend IS cured.)

my friend Dana is dying from breast cancer. it is in her brain and liver. Early detection is the key.

It is unfortunate that we do not have a better research protocol with its attendant leadership. It would not surprise me at all to learn down the road, that researchers found a cure but just did not realize it at the time.

We all need to lobby our elected officials for a cure. A staffer once told me that just 10 letters on a given subject gets the Congressman's attention.Surely we can do that!!

CHarlie