[lindylanka]

Yesterday a request came from CPT for a short quote on what a cure would mean for me and my family, and I found that I could only answer it in this way,

"A cure for Parkinson's is something I dare not dream of for myself, but I
support for a world of patients, both now and for the future."

It took me a very long time to even get a word down, and I realised that I do not EVER let myself think of what it would be like to be cured. Why?

Exactly as I say - I dare not. I think it would raise an anger so big in me, and such a sorrow for the changed years. My son was nearly 4 when I first started getting symptoms, I have a photo of me taken that year, and the first signs were certainly there. I am in my garden doing Tai Chi, it is early autumn so I'm wearing a big baggy sweater. I am standing on one leg, with arms outstretched, and I can see that my right leg is not at the well practiced 3 0'clock angle, but more like 4.30. I can see too that my face has already got the PD mask, the year is 1994, and it is nine years before my diagnosis. I cannot stand on one leg now, though thanks to last years addition of entacapone the mask is gone for at least some of the time. I still do not have a firm diagnosis, like many I probably never will. We all know when that will actually come.

Today it is raining, and my feet are swollen because I have not been out for a few days. I should go out, but probably won't, because the wet underfoot will make me very unsure on my feet, and I fear falling. But I need to walk because otherwise I am risking the obvious non pd conditions of the sedentary. I do not like this more sedentary person. The person I was in the photo was hugely energetic, bringing up a young child, being a full-time student, gardening and growing my own food, and being a full-time housewife too, several full time jobs there.............plus being a wife, and dealing with my partners full blown nervous breakdown. Today my days are marked by the few tasks I can count on the fingers of one hand. I sometimes feel that everything, all of me, is in my head, the things I want, the things I don't, the thing that shapes my days. I am not depressed by my condition,
and do manage some kind of life. To think of what I might have been now is just too hard, and I simply do not go there............I dare not.

I go back to yesterdays words, and they are the only ones I can write on 'the' cure.

I spent yesterday trawling through the BT archives, year 2000 onwards, and it is '09 now. I remember seaching through them when ! finally did see a neuro, in 2001. And the years have gone........... just disappeared. My son is 18, and does not remember me ever without PD. And the person in the photo only exists in my head.

If this sounds bleak, then I have to say it has not all been that way. I have learned a lot, and despite PD have managed to do quite a lot. I am not unhappy, in fact a lot of my personal issues are resolved, and mostly I fairly content. One of the things I've learned is that if I thought too much about the what if's it would be so easy to lose it completely, with anger, with utter rage, and with the kind of pity and sorrow I can only reserve for others and not for myself. That is the real part of what I dare not do...............

It has really made me think, that request for something so simple. Because it never seems that simple to me, thinking about what it would be like to be 'cured'. And given the nature of the carrot that has been held out for so long........ well I shan't go there.

It's a bit like the refugees from my other country, the war is over, they could go home, but they will never be the people they might have been before the b-----y thing started.

Lindy

[reverett123]

That is one of the best posts that I have read for some time. Thank you.

[jcitron]

Lindy,

I've learned not to dwell on the what ifs. If I did that, I would have plopped myself in front of a fast running freight train on the very first day. Thinking about that statement sounds silly to me because I'd have to drive pretty far to find a fast freight. They do something like 10 mph where I live.

Once I got over the initial shock that I would be facing a challenge the rest of my life, I have accepted this as my way of life, and continue on living. At this point I'm looking for other work, planning on being a full-time student again. In fact facing the challenges that PD has brought me, and the rest of us here, proves that we can face and do anything. This is probably true of for a lot of conditions, but PD unlike many of them is slow-moving and chronic. MS tends to work quickly and so does ALS. These people, face an even worse challange I think, but the PD as I said is spread out over a longer period, and changes as time goes on so we have to continually adjust our mental being to adjust to the different things that happen to us.

The other thing too is this condition isn't just about sitting there and shaking all over. It affects the whole body including the spirit and mind. We as PDrs I thnk in general have that "must do it right" attitude, and try our best at everything we do. The condition eats at our soul because we know deep down inside that we can't do things as well as we could do, and now our reputation of doing good work is now smattered with schmutz. This is how it is for me anyway. There are projects I will no longer do because I don't want to make a dork of myself, or wreck what I'm working on I'd rather have someone else do it now. That was never me before. Is it because I'm a bit older and less innocent of life's challenges, or know my limits better? Heck no! The simple reason is I don't want to make a dork of myself in public. I now avoid buffet lunches because I don't want to trip on the rug and fling the food and myself all over. If someone wants buffet, I'll go if we can sit close, otherwise the other person has to carry my plate. My poor brother is now sucked into cutting the grass because I don't want to topple over or get pulled along by the lawn mower. I had that happen once and if I could've ducked into an anthill and hid I would've felt better. What burns me is that I'm only 48, and these are things that I should have worry about in my 90 year-old piano teacher or my 75 year-old dad and not myself.

I've looked back at some old pictures too and notice some differences in my body that I never noticed before. I can see the masked face, the way I held my arms, and some oddities in my stance. These photos too were taken 10 years ago. I never thought at the time that the stiffness back then was caused by the PD. For me it was a way of life, and being in New England I blamed it on old-fashioned arthritis. My diagnosis, or tenative one as it is, came in November 2006 after I switched neurologists.

I've realized that we need to take things at the one step at a time instead of trying to absorb all of the what ifs as they come along. Heck I did that for 20 years in IT. What if a server crashed, What if the users can't log in, etc...This alone will eat at the spirit and makes us all feel really old from the stress.

John

[bandido1]

Lindy & John; well done and in my opinion, ready for print in the book==Chapter 1 BoB C

[indigogo]

In the last month, I've had conversations with 2 people with PD for more than 10 years; both well known PD advocates on this very board. Both of them have been told by their long time doctors, MDS specialists, that they suspect they don't have Parkinson's, only to recant after more investigation. Yes, they do have PD. No, the PD is not progressing as the textbooks would suggest.

What does this mean?

It means no one truly knows what Parkinson's disease really is.

How can we cure what we don't understand?

Until we understand, all we can do is care. We need to be spending more time and money caring. For 50 years our money spent for understanding and curing has only produced more questions - we need to continue on this trajectory, but in the meantime more and more of us are left to wander and wonder on our own in the wasteland that is Parkinson's disease.

My own solution: send all of our research dollars to MJFF to find better treatments and eventually a cure. Spend just as much time and money helping those of us who are living with a disease that is misunderstood and destructive to those with PD and their family and friends.

We have been let down by the establishment. It is time for the patients to be heard.

[dbiker2]

When I read threads like this one I always remember the day I received my diagnosis almost 30 years ago.
The neurologist came into the room and said "I'm sorry, but you have Parkinson"s". I replied "What the Hell is Parkinson's and why are you sorry?"
Today at age 58, I can tell you more than you probably want to know about Parkinson's and unfortunately I can tell you why he was sorry.

PS....I took me almost 30 minutes and 3 attempts to write and post this short, simple post. Thats what Parkinson's is!!!!!!!!!