[AnnT2]

Since we are a population of mortals, sooner or later we come to terms with the fact that we are going to age and die. Accepting that reality is definitely a challenge, and sometimes when my peers and I chat, we commiserate how the unthinkable has happened. We’re certifiably old compared to a majority of fellow human beings and we can’t believe it.

Do I mind getting older? Of course I do, but what really gets me is Parkinson’s has greased the slide. Today I was at physical therapy for a bad back, and as the therapist worked on me, I remarked how I was not the person I was twelve years ago. He didn’t answer, and I guess he was thinking to himself, “No duh! Who is?” I realized the futility of telling a temporarily healthy therapist what I really meant. I was not just losing my youth; I had become an entirely different person. This wasn’t just an older me. This was an older other.

We all have to deal with aging, but sometimes I don’t recognize the person I live within. My face still looks like me, but I stand crooked, my shoulders do not line up, and where once I had exercised daily, I can barely move when I am trying to and can’t stop moving when I least want it. I had been a top student as a young person. Now I panic about my ability to think, taking IQ tests off the Internet to reassure myself. I once had a great interest in my family, but now I am often inattentive to their conversations. Job or task completion once drove me to accomplishments. Now I feel as if I am drifting through life without a sail or rudder or navigation tool. I did not worry about the future back then, but now I try not to even think of it. Although I have a patient and helpful husband, I know that only I get to live every moment for the rest of my life with this stranger I have become.

How am I coping? Well, somewhere I read that Ritalin can wake us out of the apathy that is part and parcel of our disease, but I rely on sheer determination to stay focused on tasks, talking to myself sternly as I do housework or school work or bills or projects, all of which seem to never get completed to the satisfaction of the former me. I try to lighten up when I am with others, because I don’t want to become the dullard I fear I might become. I work hard at it, trying to keep intact not only my body but my personality. I am trying to find the person I once was. I am really trying.

To paraphrase Emily Dickensen, uninvited Parkinson’s stopped for me even though I never considered such a circumstances as even a remote possibility. Time for the uninvited guest to leave. Time for a cure.

Ann

[chasmo]

the only thing we can do, is exercise to slow the decline.
I feel like i have a 10th of the mental capacity I had even 5 years ago. I am scared to even try to go back to school. PD sucks!!

CHarlie

[brockie]

Super post AnnT2 - if I may, I would like to copy it to my hard disk (fully attributed of course) ... there are a couple of friends who I still correspond with the old-fashioned way and while I tend not to talk too much about my "parky bo11ox" I have really wanted to try and explain the different me but usually by the time inspiration to write to them has hit I am totally pooped and so end up chatting about my dog and life and their kids and stuff!!

Your words have really hit the spot and it would be an easy inclusion in an envelope with a "THIS is what I want to say" annotation. With your permission, of course.



brockie

[lou_lou]

Originally Posted by AnnT2

To paraphrase Emily Dickensen,
uninvited Parkinson’s stopped for me even though I never considered such a circumstances as even a remote possibility.

Time for the uninvited guest to leave. Time for a cure.

Ann

AMEN Sister Ann -
I love -Emily

Because I could not stop for Death (712)
by Emily Dickinson


Because I could not stop for Death –
He kindly stopped for me –
The Carriage held but just Ourselves –
And Immortality.

We slowly drove – He knew no haste
And I had put away
My labor and my leisure too,
For His Civility –

We passed the School, where Children strove
At Recess – in the Ring –
We passed the Fields of Gazing Grain –
We passed the Setting Sun –

Or rather – He passed us –
The Dews drew quivering and chill –
For only Gossamer, my Gown –
My Tippet – only Tulle –

We paused before a House that seemed
A Swelling of the Ground –
The Roof was scarcely visible –
The Cornice – in the Ground –

Since then – 'tis Centuries – and yet
Feels shorter than the Day
I first surmised the Horses' Heads
Were toward Eternity –

[AnnT2]

Of course, Brockie. Your comments lifted my spirits. Thank you.

Ann

[Evon]

Well put Ann, I also cannot believe this is happening to me. I work very hard at being the old me but deep down I know that person is gone. I feel like I am on a slippery slide and its moving fast. I try to live each day to the fullest not knowing what tomorrow will bring. Will I be more aware that my illness is progressing, only I can tell from within when it has changed for the worse. I may sound rather cold and blunt but I often joke with my good friend who is a pilot that I may need him to drop me off at 5,000 ft. one of these days. I don't look forward to being very disabled, to the point where I have to rely on others to do simple daily tasks. I remain optimistic that there will be new meds and new surgeries to help us live a relatively normal life.
I'm not asking much, just to keep my mind and body functioning well enough to be useful and to spend the rest of my quality time with my family and friends without being a burden. I still have enough energy left in me to get out and have some fun, but who knows how long that will last.
I also talk to myself to stay focused and use my brain, in fear of losing my mental faculties. When I wake up in the morning after a night of broken sleep and I try to get up out of bed it is very apparant that this is not a healthy body. I wonder how long before I will need help to get up out of the bed. No I don't want to go there, so I try to focus on each day and like you Ann I wait for the cure. You are not alone, all of us here know what you are talking about and I am glad you spoke out about it, I know I'm in good company.

[GregD]

Ann,
Excellent post. I hadn’t thought much about it lately, but yes Parkinson’s has changed me from the person I was before. Some say it’s been a change for the better.
While I long for that wild and crazy guy to appear once in a while, I know he is gone forever. I miss those carefree days when I’d go hop on the Harley and ride cross-country for a week just because I could. I miss that guy that always made it to work on time and gave his all every day. I really miss that guy who was a picture of perfect health with the ripped abs and bulging biceps. He’s gone and there isn’t anything I can do about it.
However, I kind of like the person that has replaced him. Yes, he’s slow, awkward and shakey now, but he sees things in a whole different light. The old guy would never sit down and read a book of love poems. He would never know Jesus Christ as his Lord and Savior. That old guy would never know how beautiful a rose is. He would just pass it by.
Yes, Parkinson’s is a terrible disease. I’ve had my fair share of agony from it. I’m sure there is more to come in the future. The changes that have taken place in my life because of Parkinson’s Disease aren’t all bad. Life is what we make it.

GregD

[reverett123]

...I like myself as I have become. I feel that PD has brought a certain wisdom with it. Too much of life is consumed by jobs, TV, etc and one day a person wakes up and it is over. I've faced that moment and then realized that I still had a lot of years to fill. Most folks don't get that chance.

Don't hijack the thread but go to the one on "Ginseng" if you are concerned about the cognitive aspects. Download the paper and read it (it is quite understandable). It covers far more than PD and things like Alzheimer's benefit greatly. I am about ready to say we should start it from the first tremor.

[stevem53]

For me pd has been a bittersweet journey..It has certainly not only changed me physically, but metally and emotionally as well..It has changed my character, but mostly for the better..Like Greg, pd has certainly been a stop and smell the roses experience..I like that pd has taught me patience, because I had very little before..It has made me compassionate in a special way..It has made me review my life and has enabled me to make some positive changes..It has enhanced my spirituallity, and it has deepened my love and understanding of animals..With it comes a newfound wisdom of the way things are..But it all comes with a price..The downside is that I physically function at about 60% of my former self..I cant get through any given day without an afternoon nap because of the fatigue..I sometimes get frustrated when I drop things, spill stuff, cant pick up a piece of paper without a battle..Have difficulty getting objects in and out of my pockets, and sometimes it angers me..I find that it has caused me to isolate myself from alot of people, and have moments where I want to be in my own little world, without any committments to anyone..I have become very emotionally sensative, and get weepy over nothing sometimes..One of the reasons why I find myself isolating is because I have to move at my own speed physically and mentally..I can read only for short periods of time, and my memory is shot..I have difficulty expressing myself verbally because of the stuttering, and the mind being a step ahead of the mouth..I am however grateful for the things that I can still do..I can still walk, talk, drive, and go out in my boat a few times a week..It has really helped me look at whats good about my life, and I enjoy my life more now than I did when I was well..I am especially happy that I am better able to live for today rather than to keep looking at the road ahead of me, and the wrath that pd will eventually wield on me..And it has given me some great friendships that I otherwise would have never had

[michael7733]

At what point does one change? Is the change judged by a qualitative measurement or a quantitative measurement. I mean, do we change into someone else after a certain percentage of the characteristics that define who we are change, or do we change after a certain quality of life is removed from us? Do we lose who we are completely, or are we melded together with a new us? Or does who we are just disappear one tiny bit at a time until there really is no us left...we become undefined...unrecognizeable.

I must admit that my mind thinks differently now than it once did, and as it recognizes the limited capabilities of its house, it makes adjustments that will allow the mind and body to continue to function together. With longevity this is sure to change with or without Parkinson's disease. One question is, which will lose functionality first, my mind or my body? Which would be worse, to be a mindless body or to be a bodiless mind. A thinking mind trapped inside a non-functioning body has got to be one of the most frustrating things I can think of. On the other hand, what would a functioning body do without a mind to guide it? Would the instinctive aspects of life take over and rule? I don't know.

michael?