[ol'cs]

goes into a bar and asks the bartender for a stout. The bartender, half the guys age says "have you been drinking tonight Sir?
The man replies "why, yes; i have been drinking tonight. The bartender says "sorry, i can't serve you any alcohol". The man whispered "I have Parkinson's disease"...........and.....the bartender plunks down a large glass of stout in front of the man, greedily slurps it down. After one more pint of stout, the man says, "i'll pay up now, so I can get back to my bottle of Oban, which i almost polished off before I realized that, i could use a few pints of stout. Don't worry, the man with the two sticks says as he goes out the door; I'm driving
A bit embelished to forge some PD humor, but that was me last wednesday (just the two stout, i was "sober" when i went in. We parkies have a totally different sense of who we are; we do not look "normal" to others.
I put this up to prompt stories of rejection, puzzlement, impatience, disbelief, and the all pervading "good samaritans" who have to grab you when they think that you are falling down, etc, etc., and you then fall down, etc., etc. because they distracted you.
That, and clueless bartenders! So who "bugs ya" because they assume that just because we can't walk, or speak well, that they treat you like you are a crippled moron?

[lou_lou]

the living dead....

[ol'cs]

I'm on my own living back in my home, Canada, and in stage 4, early stage 4. My own family still live in the states. Iwill soon be amicably divorced, and my children now see why i moved on, to spare them the sadness of living with a slowly, ever slowly dying man who gets a teeny bit worse every day. My family is having a much "clearer" time now that i'm out of sight, out of mind, except when they want money (sounds so much like "real life", doesn't it?. Seriously, it is so much better being on ones own, so that ones loved one's can laugh and joke with you on the other side of a telephone line while you are writhing with dyskinesia, or unable to get out of your chair. What they don't see they don't have to cope with emotionally. A few good fake laughs from me and we hang up with them "thinking that dad's OK, and although a lot of you dissagree with this way of coping with PD, hell, it works for us.
All is not fine with me as you guys can imagine, looking at yourselves with all your own tortures that PD has served to you. Yes, dyskinesia is a like two snakes mating, but i just keep as drugged as i can. I am in my own apt, with futons for furniture (with those memory foam pads on top of them, so if i'm a goin' down, i can just about festinate to at least one of them before my fall is broken.
At least i have a lifetime pension to pay for the meds and a roof over my head, (Allah be praised!!!!!!!), but i see in my mind all the problems that you out there who are not so fortunate, could overcome your abilities to cope. Coping with late stage PD is really a whole different ball game than the early stages present. Loss of a good deal of "executive function has made it difficult to do things that this guy never had to do in a long while. I licked, and stamped my first "rent envelope" in 22 years awhile ago, and electrical bill, phone'' cable, and other things which YOU either do, or go into an institution. Shopping is a chore, cause "cinderella" never quite makes sure that i am not tardy when cocktail time rolls around. That's when i go into "scary deep freeze", which thus forces one eventually to develop a reasonable "medication regimen" to "set themselves straight", with, sadly, the only things we really have; drugs. I have to spend one out of three days mostly in bed, even with the 30mg of Dexedrine/day that my neuro prescribed for me, some days i just cant get up and washed and dressed and out. Some days, I can take 30 mg of amphetamine and still sleep, and with a mild sleeping pill, i can break the PD "messed up circadian rhythm" and for a few days can live life in step to the waking, working hours of doctors. I've been on heavy drugs for 6 years now (as with pain meds), and i wanted to say a bit about controlled drugs as they are indicated in a "Parkinsonians drug regimen).
Drug therapy is a double edged sword. You will "pay for it" in the end; yet you will pay almost the same in the end anyway, only you'll "show" that you are undermedicated, and beleive me much more miserable for it! If one takes narcotics for a long time, one is "dependent" on them, as with antispasmodics, L-Dopa, benzodiazepines and/ or SSNRI's; or any combo that "floats yer boat". In our condition it doesn't matter anymore, we haven't got 20 more years of life (if one can call it life), so no guilt feelings about it. As long as you raise your dose slowly, ever so slowly, and are willing to take some hard pain before another minmal dose to see one through, IMHO, you shouldn't worry about it too much. I mean ,i got this far with minimal depression even though my life fell totally apart, in part due to enlightened neurologists who are not unlike "the bartender". Well the reason i bucked outa here years ago is because typing became painful for me, so see yuz round. cs

[imark3000]

My sister has PD for 15 years and is in same condition as you. I have PD for just over 4 years. I am amazed that, like you, she is rarely depressed.
There must be some thing mysterious about life which makes us clinge on.
Warm regards Ol'cs.
Imad

[tulip girl]

I am 58 and have had PD for 20 years now and in NO way,shape or form am I going to hole myself away from my family and friends.....and if I want a drink at a bar, I get one or two and drive myself home. Monday morning, I had no Christmas shopping done - Tuesday evening I was done - I hit the malls, couldn't pass on any bargain, dragged my packages to the car several times. Yes, I know I do not look or move like "normal" people but who cares, I was enjoying myself - buying for my kids and husband. I never have a day that I don't or don't feel like getting out of bed. I look forward to each day - some days I accomplish a lot and some days, I don't. I don't stress out over it. I just saw my MDS and he said, "my patients come in looking a little worse each time, but you come in looking better each time I see you".

I write this, not to make anyone feel bad but to let those of you who are new to PD, know that you can have a full and rich life years after diagnosis. I am very fortunate to have slow progression and a wonderful family and group of friends. Going out with friends for a few drinks tomorrow night....

TG

[budgies]

Hi Tulip Girl,

Thank you so much for your "antidote" posting. I was so upset after reading the long and very sad one above that it was just what I needed.

My husband had been diagnosed for just one year now, and has recently started taking Madopar along with his RequipXL. Fortunately he is very upbeat about it all, but I struggle daily to keep my spiritis up, and cry such a lot (when alone of course).

It's very hard to remain positive, especially after reading some of the dreadful suffering posted in detail here, but your posting was so uplifting, and I just wanted you to know what it has done for me.

I wish you all the very best for the future and hope you keep as well as possible.

[krugen68]

Originally Posted by tulip girl

I write this, not to make anyone feel bad but to let those of you who are new to PD, know that you can have a full and rich life years after diagnosis. I am very fortunate to have slow progression and a wonderful family and group of friends. Going out with friends for a few drinks tomorrow night....

TG

cheers you've cheered me up

[reverett123]

As we all know, everyone gets a custom model of PD. And while ol cs has never been accused of being Mary Sunshine in disguise, he is part of the family and is telling us how bad it can get. Contrast that to the other forums where all is well and in just five years the guy in the white coat will fix everything. Listen to the latter and you will drift along until your time is up. Listen to ol cs and you will scare yourself enough to actually attempt something that just might improve your own fate. Sometimes stark relief reveals overlooked details.

[tulip girl]

Originally Posted by reverett123

As we all know, everyone gets a custom model of PD. And while ol cs has never been accused of being Mary Sunshine in disguise, he is part of the family and is telling us how bad it can get. Contrast that to the other forums where all is well and in just five years the guy in the white coat will fix everything. Listen to the latter and you will drift along until your time is up. Listen to ol cs and you will scare yourself enough to actually attempt something that just might improve your own fate. Sometimes stark relief reveals overlooked details.

You are absolutly spot on, Rick. Taking control is essential.

See ya out biking?
TG

[lurkingforacure]

Originally Posted by reverett123

As we all know, everyone gets a custom model of PD. And while ol cs has never been accused of being Mary Sunshine in disguise, he is part of the family and is telling us how bad it can get. Contrast that to the other forums where all is well and in just five years the guy in the white coat will fix everything. Listen to the latter and you will drift along until your time is up. Listen to ol cs and you will scare yourself enough to actually attempt something that just might improve your own fate. Sometimes stark relief reveals overlooked details.

Thanks again, Rick, for your truly insightful post. If I didn't know you have PD (and you do have PD, don't you?), I'd never know you have PD.