Pretty near everybody here amongst would agree that pre-DX is probably right up there with as much trouble as this disease is gonna give us up till we find our own special "Parkinsonized" demise. This often occurs as cardio-pulmonary problems, where these two necessary organs give out early due to generalaized muscle failure, where muscle control by the autonomic nervous control is spared as long as possible (PWP shouldn't smoke).
However the end is a long way from where you are standing, depending a lot on your age of onset and years already transversed. There IS such a beast which could be said to be "variable degrees" of PD. These could describe the onset of a mild form of PD at an advanced age, to a "crippling" form of the disease in a very young person. AS the disease evolves, our track through this personal diss of our easness readily describes to our inner mind, the "degree of our suffering, and where you are headed, what insults PD will heap on you. It's delivered as a package of symptoms that you are, every now and again, forced to reach into and pick another one out. The real "lucky ones" are those who "only" have PD to worry about, but to some, "only having PD" can be a vast understatement of their real index of health and ability to function,
What some of the "really bad" cases of advanced younger PWP experience is nothing less than an open season on PWP for scorn and ridicule by society.
As a group of similarly affected people, I would be interested on how far "our" differences with "the PD clueless" affect you emotionally. I am "bugged" by this perception a lot, but it's partly because I am vain about maintaining appearances instead of just accepting that time is ticking ever onward, and pretty soon it's going to be assisted living for me, even though I will still have some appearance of being "relatively young and able" at my peak times. I go outdoors only to do some food shopping, but this is particular, peculiar "paranoia" i have myselfs have to deal with, with both thumbs pointing accusingly at the sinemet bottle. I have fallen down and dragged by a regular "American size" food cart, and, basically "drag myself around" when I'm out in public.
Who feels only "mildly affected"? Are you in, what you believe to be your "honeymoon period" (just post-DX and responding well to medication). Are you suffering badly, but find that your "stiff upper lip" is somewhow expected and / or imposed upon you. Or are you just so unaffected that you aren't reading at this blogg at all? Who can say having PD is like being forced to walk around all day feeling two or more G's of force on every square in of your body, sometimes? All this pitching about and falling? Just weak and in pain all over, all day long.? Bugged out from drugs that are the ONLY thing that you have found to relieve your symptoms so that you can put on an outward appearance of "false-normality"?
I am finding that having PD allows one a better understanding of a lot of things most people in this world will never have to deal with. This really is a crazybad disease. Can't anybody do something better for us than what we have? Please? Somebody?

Hi CS,
Thanks for your post - feel as though the honeymoon is over and the hard slog has begun, wake up everyday wishing for normality and finding something else. When the neuros start listening to how we experience PD, in all its varieties, at all its stages, instead of fitting us into their clinical signs, then someone maybe will be able to see what is really needed.

I struggle with most people now, I do not wish for pity, but would love some practical help sometimes, but am too proud to ask, and too proud to discuss, outside of this forum, the many different ways in which this disease has affected my life and the way I live it. Truth is I fear their pity, and cling to my independence like crazy. Perhaps this is not the best thing to do, but it is the only way I know to deal with it. Maybe people on the whole don't know what to 'do' with illness, and so don't really take it on board, maybe it scares them as much as pity scares me.

Thanks again, you always open up a rich seam of thought, your posts give me inspiration and a sense that I am not alone in this PD mess.

Best regards
Lindy

ol'cs,

Your musings and ponderings are really deep, and I've had to spend some time thinking about this before I post. I guess as you've said we all deal with things differently. Right now I am in the "honeymoon stage" with my medication and disease. There are times when things aren't "right", but overall my mobility is at its best it has been in years. I'm not the one who has said this either. The CEO of my workplace came by to say hello to me and he remarked how well I looked, and how well I was moving around. This made me feel really good. But... Deep down inside, I know that this period is not forever like the PD-clueless have. I know for a fact that I'm kidding myself if I think not. I'm sure enjoying myself while I can though. Why spoil a good thing while I still have it!

Through this I've decided to enjoy what I can from life while I can still get around. I no longer take each day for granted. I get outside and enjoy the sunshine when we have it, and enjoy the change in the seasons more now than ever. I've learned to appreciate the color and sound in nature instead of taking the green grass for granted, or the sky reflecting off my beaver pond. I recently noticed that the pond turns different colors depending upon the weather and the time of day. The water can be as dark as a mirror, or as cheerful as a sunny day.

Anyway, I am quite concious of the changes I am dealing with, When I wasn't in drug-balance like I am now, I was quite unstable on my feet when I went to the supermarket, to the mall or even sometimes at work. I would lose my balance and need to grab the cart really hard or even the shelf in front of me to keep me from falling. The process of walking in the supermarket was particularly difficult for me. The constant stopping and starting made it not just uncomfortable, but also very difficult to walk, thus the falling and stumbling in the store. I even fell twice at work and scared the whahoozies out of my manager.

I've noticed that I do have the tremor especially when stressed. During my tremulous and stiff periods, I hide my hands from view the best I can and stand up slowly to make sure it wasn't noticable. This was okay until I had trouble one morning trying to climb into a van. I couldn't lift myself up in the van and had to sit on the floor to bring my legs in. Once in I was able to scooch myself up to the seat. I had a traffic jamb outside while I struggled in. I had revealed what I was hiding, and that hurt. At that point I then explained to my fellow travellers about what I was going through, and I know that at least one person out of the 16 understood because one of his in-laws has PD which he told with me afterwards.

What's so nasty about this disease is we look pretty normal on the outside. We don't always have the obvious signs of the disease, and when we use a handicap parking spot, or walk kind of funny, we get the stares from other people. I had this happen one day at my workplace. I pulled into the HP spot and got out of my car slowly. One of the smokers, from the other company in the building, was outside and watched me get out of the car and take the stairs slowly. Later on that day, after the meds had worked some, I was walking almost normally, even walked to the sub shop for my sandwich, and I got the glare again from someone else. They couldn't figure out why I was parking where I was, and perhaps thought I was using the placard to park close to the door.

This hurts the pride, and the stiff upper lip has a tendency to curl some with the embarassment and hurt we have to deal with. In a way it makes me feel guilty like I'm a leech or a burden to many people. It's not like I look for any sympathy or special breaks. I am quite capable of getting around by myself. The close parking is great for the morning when I need it the most, and I rarely drive anywhere else once I'm at work so the car stays put. What I don't like though, is being second guessed and treated like a second-class citizen, which is what has happened to me at work.

Anyway, I hope this rambling makes some sense.

Best of luck to you always, ol' friend.

John

John;

There are two people you have to make happy, yourself and your boss! Co-workers run the gamut from caring, senstive indviduals to real jerks. You know you need handcapped parking, thats all that's important. We more often than not misconstrue what other people are thinking anyway.

YOu can have a lot of fun with rude people anyway!

Your energy should be expended for positive things, not validating some jerk you don't even know!

Charlie

and I truly believe that every one is "validated" to feel their own feelings, no matter how someone else perceives them. This thread was opened by me because i am tired of holding back my real feelings, just because someone here or anywhere will attempt to 'invalidate"" them.
I am deeply affected to what others say and do to me because of PD. I have lost the love of nearly everyone in my immediate family because of PD and I really don't understand why I have lost the friendship of most of my "workplace" friends because i am absent from sharing the daily grind with them. With our disease "absence makes the heart grow colder, and ever more forgetful". I have suffered too many indignities, directly related to this disease. I reply to the "clueless" less and less, because it doesn't seem to make any difference with them. I seek refuge in hiding from the world of the healthy, because it is a place where i am not welcome. I don't want their false pity; i want them to close their eyes and just THINK for a moment, think of just WHAT IS A DISABLED PERSON IS SUPPOSED TO LOOK LIKE AND HOW DO THEY APPEAR. It is mind opening to be asked if you need help with something from a clerk in a store when you think that outwardly you are having an "on" time and are not badly affected. It hurts when you get honked at (often followed by a rude comment) when you emerge from your vehicle when you park in the handicapped section of the parking lot, just because you "look fine" to them. It seems that the whole world id out to discredit the seriousness of our disease just because of ignorance. I don't park in the handicapped parking spots because they are convenient; i park there because if i go find a spot a block away, it robs me of "on" time and could make the difference of completing my appointed tasks with or without falling into an "off". My insurance company phones me to ask if "i'm still disabled" and they need reams of "documentation" every year because it is "required". Another result of not just dying with PD, but instead, prolonged suffering with insults. I remember my last year at work, and the looks and comments people gave me, and the ridicule that i received form "big mouths" who were totally insensitive to my plight. All i am saying is that we live in a world that is almost totally uneducated of what it's like to live life in a body that looks fine . but can't barely manage to function properly.

somewhere in my travels someone said "what others think about me is none of my business". I have adopted that and made it part of my arsenal of weapons that preserve me from the slings and arrows of outrageous fortune.

Outrageous fortune seems to be the theme of this thread, although its hard to tell just what who is moaning about sometimes. I've been wandering around in a sort of blue funk myself the last few days...chemistry in my brain working overtime.

About two weeks ago I had a conversation with a guy I shared a house with back in my art school days..or maybe a little later. There was another guy there too who I really enjoyed, a real free spirit -or maybe just a lost soul. He and the friend I ran into were best friends. My free spirited friend committed suicide two years ago. I was stunned to hear this. Two weeks later I am still stunned.

I can be a real Pollyana at times...and in fact my name is Joy. How's that for a life long designation. Who said God has no sense of humor? Albeit a little twisted at times. ...

I have observed that life is a series of hills and valleys, to use an ancient metaphor,(similie?) and while we are climbing the hills we are too busy to get into trouble, and when we are at the tops of the mountains we are captivated and amazed by the sheer genius of the force that created all this. But then we start the downhill decent, which takes us to the valley of the shadow of death, a truly dark place. and if we get stuck there ...well then threads like this one emerge. The best thing about this thread is that it brings other lost souls out of the woodwork and they can huddle together to keep each other warm. Misery "loves" company..the magic is in the love. Now when we get enough love, we gather our wits about us and we have the resources to travel on until we find ourselves out in the sunlight again.

It is a burden in this life to be too intelligent. Intelligence interferes with our ability to navigate through rough waters, or down a steep incline when we come to them....and we all come to them. Intelligence acts like a magnet thrown into sophisticated highly tuned electronics, drawing us away from our spiritual roots, and our spiritual roots is where we find lovearticularly love of/for life.

Now on the subject of love, if you can't find anybody to love you, it may be that you will have to love yourself. So break out of the shell you've built around yourself and have a love-in. Go find a mirror and tell yourself how beautiful you are, how gifted you are and how glad you are to be you. Put on a John Fogerty CD and dance your brains out. Eat whatever you want....have a party. Invite us all to the party. We'll come (maybe just a cyber party)!!

I don't know about you, but I'm feeling pretty good now. Remember: your only as pathetic as you allow yourself to think you are. Feel free to go hang out with your dark side from time to time. It needs love too. But come back to the party after you're done... I think I'll go eat some oreos now!

Love to all of you..J

I find the greatest sympathy and understanding comes from those who have had someone close to them deal with PD or something similar and the least from those healthy, hard-charging souls with things to do and careers to tend. I tend to think the latter are frightened out of their wits by people like us because they subconsciously realize that they are looking in a mirror at a possible future of their own. Our family are a different matter as they are ground down by PD right along with us.

I'm on a one woman mission to educate everone who I meet t about PD. The honeymoon was over years ago. My intense desire to press on regardless for years sustauned me. The trauma 2 years ago in the ER from an ignorant MD has taken a serious tole, but has strenghrhed my resolve that people need to know about us.

CS I understand you feelings of ;oss of love, but as a woman I figured out years ago that most of us die alone anyway so I'm not going to worry about it. The people who care abouy me are my family. My actual family turned away from me years ago.

Mary

I don't think "they" (health care, government) are doing enough for us. Everyone prior to being diagnosed with pd should be given a Pet or Spect Scan. It's hardly fair that after you are dead you may be one of the 20% who was mis-diagnosed.

You say you are depressed and why wouldn't you be after a 30 minute appointment and see you next year. What kind of support is that? Sometimes you just need someone to talk too. You should be biochemically tested if you are depressed instead they hand you another prescription assuming your serotonin level is down. Maybe you just have a chemical in-balance that can be dealt with a nutritional strategy plan.

I think of pwp who don't have computer skills or can't afford a computer that live alone or don't have family support . These are the one's I have deep compassion for. We need a pro-active movement for affordable housing, affordable health care, appropriate travel consideration, counseling, free physio and Home Care. Good god, it should all be free.

At the grass root level what can we do to make this happen?

well, I think you get back what you put out there.
My kids love me, always come and give me a good night kiss. They always look out for me. I am pleasant and attentiive to them, and they by-in-large give that back to me.

Workplace friends are just that, workplace friends. Out of the hundreds of friends I made in the motion picture industry, I have two friends that still call and invite me to lunch etc. That, I fear, is simply the nature of the beast.


As far as people "Looking" at me, I honestly do NOT notice. I am sure I look normal to most people due to my DBS. I have better things to do with my energy than spending it worrying about what some total stranger thinks about me.

Twice I have had a cop stop and ask me who was disabled in my car. I said "ME"!! They said "OH" and went on their merry way. Guess I have an honest face....LOL

I think you get back what you "put out there". Just make sure that you spend quality time with your loved ones.
You do not have to give up on living because of your PD (not so far anyway!)


Charlie