[michael7733]

how do you feel...how do you react?

When did I become less valuable? I think I am having a more difficult time with this aspect of Parkinson's than any other. I am actually at a loss for words trying to explain this. Perhaps someone here can express how I feel.

michael b.

[rosebud]

I think we need a bit more information?

Who do you feel is devaluing you? What specifically did they do to send this message? And why do they carry so much weight in your mind by their actions or words?

[michael7733]

That tells me that you either don't know what I am talking about, or you know exactly what I am talking about and you are also at a loss for words. Let me try to explain without being too wordy.

During my 59+ years on this earth I have been a student, a teacher, a soldier, a carpenter's helper, a painter, a salesman, a music director and a pastor. For the past 19+ years I have had Parkinson's disease. Like you, I have watched it slowly, relentlessly, eat away at my ability to perform, and lately, my ability to even function at times. It takes me forever to complete the smallest of tasks. Things that I could once complete in a matter of minutes might possibly take an hour or more now. Somrtimes the frustration level is so high that I simply quit what I am doing and never return to it. The project becomes another addition to my pile of unfinished tasks.

There was a time when I got paid for performing these tasks in a timely and professional manner. Those days seem distant and vague now. I have become unreliable. Because of this, my worth to society, friends and family has diminished as well. Oh I know that if I voiced this to those around me, they would probably say something like, "Oh, don't be silly...you are still valuable to me." Then I would get one of these .
No one has ever told me how I should feel or how I should act in my present situation. Do any of you know?

michael b.

edit: Sorry, rosebud, we were posting at the same time. Is that enough info? Thanks for responding.

[made it up]

Scratching my head here thinking how to answer you without sounding patronizing so here goes.
For me I've learnt not to give a rats a... what people think or how they feel about my loss of ability to keep up with "them."
Those who know me well know that whatever I do it most likely required more effort than the average person and generally appreciate that.
Hope I've answered your question as I've no idea how to recheck what you wrote due to a mild case of computer illiteracy!
Cheers,
Lee

[paula_w]

Hi Michael,

Are you talking about being patronized, tolerated, but basically too "different" to fit in or be taken seriously? I have relatives who still ask me if I'm finished "playing" on the computer.

I woke up starving, ate, and now back to bed.

Paula

[Curious]

Originally Posted by michael7733

That tells me that you either don't know what I am talking about, or you know exactly what I am talking about and you are also at a loss for words. Let me try to explain without being too wordy.

hi michael

I wanted to explain about Views. It doesn't mean that 15 members read your post and didn't reply. It may mean that search engine bots read your post or non members who can't reply made up most of the numbers.

[lindylanka]

Dear Michael,
When I gave up work in 2005 I did so for exactly the things you describe, I so hated not being able to be the perfectionist person I once was, and remember a work colleague getting really cross with me when I described myself as 'unviable'. But that is what I was, and to an extent still am. I no longer allow myself to be the driven person I once was, and am a lot happier. I use the feelings that arise as a support for meditation, which I never really 'got' before, and try to work with them - this year my son helped me make a vegetable garden, it grows lots of weeds, which I can't deal with,but also has given a great crop of beans, peas and courgettes, which I can. It helps. Letting go of the person I once was has opened up a space in which I can be viable, in a different way. I don't compare things too much. Someone once said to me that not being able to do things well gives other people an opportunity to develop compassion - but I do get grumpy when they try! I am the one who devalues me, and then get angry when I feel devalued!

I allow all my feelings, but they are simply that, feelings, they are not me. And I don't try to be what I think others expect me to be. That can help open a space where I can be viable........

I might have missed the mark completely, if so please ignore......

I know you to be a reflective person from your many posts here and elsewhere. Your worth, Michael, is probably not the issue, it is self-worth that is the real ******! You are not of value because of what you do, but who you are....

Blessings
Lindy

[Jaye]

Michael, it could be that you are observing the NotMeNotNow phenomenon, in which many people bound to us by friendship, blood ties, or holy vows, do not accept that their lives are afflicted by Parkinson's Disease, too. Some of them even behave as it were our fault, or that guilt for some terrible sin is at the root of our behavior. They may also be disappointed that their superficial expressions of concern were no more effective than a band-aid, or disappointed in themselves that such expressions were too superficial to evince true compassion.

Sometimes it helps to explain to them that, with various parts of the brain misfiring and dis-coordinating our movement and our perception, sometimes even our ability to plan and prioritize, but usually not. People who are as busy as our society seems to require them to be are particularly disinclined to ponder--anything.

A time may come when they understand. For the present, well, everybody's gotta be somplace. To put it theologically, ya gotta love 'em.

Loving them may take different forms and patterns of behavior on your part than you ever dreamed possible, and I don't know what those might be for you. Writing, prayer, artistic expression, exercise--your own light will guide you.

It's a lonelier path than I expected it to be, too.

Jaye

[rosebud]

Michael:

You need to readjust how you view yourself and the world around you. I speak from my own biased perspective, but it serves me pretty well, so let me pass it on to you.

First of all I have developed a deeper and more meaningful relationship with the proverbial "higher power" in my life. I have learned that my weaknesses can and do become my strenghths if I allow myself to be guided, and don't always want to run the show myself. I believe this life very often takes us where we would never chose to go on our own. It requires us to leave our comfort zone. When we look around we realize that pretty much everyone we know has problems. Some come as a result of poor choices, but many just drop in on us and mess up our lives. At least thats what it seems like.

You, your life, and most of all your time are not what they used to be, but they are not of less value....they have a different valu, even a greater valu. The challenge seems insurmountable to you at the moment, but we have all been there and some of us get stuck there. I will add a scripture if you'll allow me (or not...lol)

"And if men come unto me I will show them their weakness. I give unto men weakness that they may be humble; and my grace is sufficient for all men who humble themselves before me; for if they humble themselves before me and have faith in me, then will I make weak things strong unto me."

I'm not meaning to preach a sermon, but I can only tell you how I have found things to be in the BIG picture. I do not believe this life was ever designed to be comfortable..if so we would all be failing miserably. Rich people committ suicide more often than poor people. We find inspiration in watching an ant carry a load twice his size across a sidewalk, where he is likely to get stepped on. MJF and Mohammed Ali have both become greater men because they have risen to the occasion, and their previous fame fades in comparison.

You are not of less value, you are of greater valu, or at least have the potential to become greater. You are standing at the door. Now go show "them" what your really made of.

Parkinson's is not my enemy...it is my Teacher!

Love ya for giving me this chance to preach! LOL

[jcitron]

Michael,

I sense you're going through some rough times. I can understand your worthless feelings, and I too have had my skills "crumble" literally from under my fingers. I make my living in the computer industry, and was once able to think very quickly on my feet and at the heat of a moment come up with a quick change of plans in case something didn't work. Unfortunately this isn't the case anymore. What once took only one try to get something done now takes me a lot longer. At first I was very frustrated but now I take my time anyway, and I think things through very carefully before I press one button or click a key.

I said I make my living in the computer industry, but my real focus has been music. Piano in particular and more recently the clavichord. It's not like I just play the piano, I was actually working on my audition to New England Conservatory when I decided many moons ago to take a more financially stable road. I've played the piano since I was about 6 years old and had my first lesson when I was eight. I think I only stopped practicing and playing when I had a cold, or went on vacation. Any other time in between, I was either working on the pieces mentally, or practicing at the keyboard.

So here in lies the big mess I'm facing as well. Career wise, I'm going nowhere really even though I'm working on my BS in Information Technology. Yes it has taken me 30 years to decide what I really didn't want to do for a living even though I'm doing it now. As far as getting a new job, well if I'm lucky someone else may hire me should I get laid off. I don't expect it since I have other things happening as well, which I'll discuss later.

My music-technical skills are fading. I can no longer play as quickly as I used to, although a recent Sinemet change has helped somewhat. I find that my hands don't always talk to each other properly so sometimes there's a delay between them. I have fingers seize up on my so that certain patterns don't work, i.e. the Alberti Bass where there are alternating notes, or once flawless trills stop in the middle as I focus on the melody. I had other little freeze-ups, delays, etc. that completely wreck a piece of music so that it becomes a useless pile of c***p because I've ruined the momentum.

When all this started, I was at a point musically where the music was mine. I was no longer listening to other people and trying to imitate their technique. I was working out my on interpretations of things that I would compare later on. They were pretty much spot on as I kept faithful to the manuscript. I had also developed a certain controlled tone on the piano that a former teacher of mine told me it harkened back to the old-time concert pianists that she heard growing up. She's about 90 and studied at Juliard. She marveled at my improved technique, tone control, and accuracy that I had achieved.

Then it hit like a bag of bricks or cement blocks over the head. Everything that I was achieving at this point came to a halt. My career has become a routine only to gather health insurance. My music, which is my soul is only a shadow of what it once was. So needless to say this hurts, not physically, but emotionally. Oh I have the good days and bad days that we all go through, but this hurts more because it builds up the expectations so one forgets what's really going on, and then it hits again like a ton of bricks.

What do I do, I've decided that I'll look for the best days and try my best to work around the bad ones and really try not to let them get me too far down. Last night was one of those bad days that left me swearing at my hands, and asking "Why did you do that, you F****ing idiots. I ended up trashing two Beethoven Sonatas and to chamber music pieces I've been working on. So much for the good Sunday I had where I actually made pogress. Last night the hands acted like a couple of defiant juveniles that didn't pay attention in class.

The other wonderful things that are happening now are scary. I've now developed really serious bladder urgency, and I've come close to being really wet. Nice, swell, here come the pampers. And yes I was told by my eye doctor a couple of weeks a go that I should give up driving because of the double vision. I had a problem all along, but now the glasses aren't helping anymore. Nice, spiffy, swell. Here goes the job as well. What good is having a job if you can't get there easily along with the health insurance that I need very badly!

So anyway, I agree with Rosebud. Parkinson's is a great teacher. It humbles one down and forces us to focus on the world around us, and try our best to see things in the BIG picture rather than focus on the little details that get us down.

Keep your chin up and trudge along.

John