New note as of October 2, 2006: This "blast from the past" is a complete thread (with holes here and there) from three years ago. These are not individual posts strung together, they are posts originally made on the thread in 2003 for the sake of giving Peg some material for a speaking engagement. I started this before the current good-in-its-own-way craze for "finding your own," in hopes that digging up the past a subject at a time would help build community here in our new internet home (BT2). I'm not quite sure why I thought it would, but hey, jump on in.

You can add your own comments and reactions at the end of the thread--please participate in bring our history (or rather, the isttory of some of us) into our experience here on BT2!
Jaye


from December 2003

Topic: NEED YOUR HELP! What should I tell it's like living with PD?

pegleg2
posted 12-03-2003 08:44 PM
Hello posters!
A pharmaceutical company is flying me to St. Louis next week (Monday) to speak to about 200 newly trained pharm reps. The topic: "What It's Like to Live With Parkinson's."
I want to be sure that I don't leave out anything, so I need your responses here, and I need them fast! I will only have about 20 minutes to convey to many who don't have a clue as to PD's effect, so be brief but thorough.
Thanks!
Peggy



TxLady
posted 12-03-2003 08:59 PM

It's like living in a glass house and watching the world live its life.
TxL



pwnkle
posted 12-03-2003 09:10 PM

Someone recently said to me that the effects Parkinson's has on a person can seem like character flaws to anyone who doesn't know what Parkinson's is. I think it was aj who said it.

I was amazed by that statement because it's so true. Many of us tend to qualify what we say. I sometimes find myself telling people that I'm not _____, I have Parkinson's.

Another part of Parkinson's that I know you are experiencing right now Peg is the PAIN. This is an area that doesn't get enough attention and there aren't many treatments that help.

So to some it up, I would say that it's extremely frustrating to live with Parkinson's and it never gets any better.



pegleg2
posted 12-03-2003 11:39
…”I want to sprinkle a few statements on a slide or overhead transparency as I tell my story: “
As pwnkle says, "It never gets better."
As Txlady says, "We must watch the world live its life."
As MLK says, "You're not able to make plans to do things."
As sparky says, "It takes all your concentration to get across a room."
As googy said : It's hell on earth."

A few of my own:
"Your self-image is reduced until you feel like a freak in a side show."
"You become a prisoner trapped in your own body."
"You lose your dignity when someone has to help you do a task as simple as going to the bathroom."
Etc. etc.
I don't want to scare newcomers here, but I am thinking of the worst scenario in order to "get my point across."
Peg



john gillespie jr
posted 12-03-2003 11:44 PM

HAVING PD is like having 1-2 six packs of beer in you, listening to HANK WILLIAMS singing YOUR CHEATING HEART, and your all alone on Saturday night. PD is a slow insidious disease. That word insidious, means, PD comes over you slowly or not easily apparent manner; more dangerous than seems evident. When I was first diagnosed, the Dr. told me I would be better off having MS than PD. i said to her, " but MS KILLS YOU IN a horrible way". She just looked at me and said nothing. Apparently she had seen many PD PATIENTS in their last years of life. I SAID TO MY SELF, look at me I can run, lift weights and have all the energy to do most anything, I'll beat PD because I have a strong body and mind. 16 and 1/2 years later, I'm crawling to the rest room, barely able to lift myself up off the floor. BUT I'll make it to the other side. I will survive, I will continue living or existing after death. Thats what I WOULD SAY. [today]
.
Good luck and GOD be with you.
.
John g
'
Having PD is like having a ruined body and a ruined life.



AnnT
posted 12-03-2003 11:56 PM

My symptoms are still mild, but I can best explain what it is like through examples.
Parkinson's is all encompassing things like a pervasive fear of the future. It is simple things like giving up on necklaces because you can't work the clasp. It is carrying tea to your guests across the room as you hand rattles the cup drawing attention when you don't want it. It makes you count out your money into your hand long before you get to the cashier so that you don't hold up the line. It is fearing the sales person at Macy's will think you are using a stolen card when it takes you so long to write your name. It is the shame you feel while speaking in front of a group while your hand flutters and others assume you are nervous. It is the guilt of knowing your children are worrying about your decline, and, unlike when they were little, you cannot reassure them. It is looking with envy and even anger at others who walk, dance, write, gesture, and count change with ease as you once did but no longer can. And finally it is knowing it can only get worse.
Ann


janet313313
posted 12-04-2003 12:45 AM

for me
it's a gift
a tough slap-upside-the-head kind of gift
but a gift nonetheless

it forced me to look hard at my life
and at my priorities

i had to make some changes

what i had thought was important
suddenly wasn't

what i had thought was cornball sentimentality
suddenly wasn't

i grew to learn that i had not received
a sentence to a living hell

i grew to learn that any 'hell' was
of my own making and my own thinking

i grew to learn that this is a tough test
is all

i am in competition with no one

i am not being punished

i am being challenged

i will rise to it

and thus find the gift in it

janet

ps
that does not mean that i would refuse help
i am not a martyr
i need intelligent caring people on my side
as much as anyone does
and a smart and sensitive pharmaceutical expert
just might be one of the most important
members of my health care team

pps
peggy
you go grrl!



GregM1
posted 12-04-2003 12:47 AM

Tell them it's like having a tiny bit of the oil that makes it possible for you to move, or not move, or think, or care, or understand, or remember, it's like having a tiny bit of that oil leak out of you each and every day. In the beginning, you don't notice it because you have plenty of oil, and even the first symptoms that begin to appear when the oil gets too low go unrecognized, because they are no different than the odd little misfires and clumsiness that we all experience now and again all the time.

And then one or more symptoms appear that cannot be ignored, and you realize that something is wrong. You don't think it's anything serious, but it is odd and you go to the doctor or mention the next time you see him.

And if your doctor is a good doctor he or she will tell you, or refer you to someone who will tell you, that you have a disease -- Parkinson's Disease. And he will tell you that there are medications that will control your disease and allow you to live a normal life.

And for a while he or she is almost right. The medications do help you and perhaps for a while you don't even notice those symptoms that took you to the doctor. But the doctor may not tell you that your medications have side effects, sometimes nasty ones, and that eventually your medications will slowly start to lose the war against your disease. Because your medications are not intended to cure you, or even to help you slow the progress of your disease, because they can't. They can only hide your symptoms from you and from those around you. And they can only do that for a while. Because you have an incurable, progressive, degenerative brain disease, and that is that.

And gradually your symptoms begin to pop-up up again like mushrooms after the rain. And you take more medications or different medications and it helps. For a while. But then, after a few years, or many years, or several years, the help they give diminishes and the symptoms that you have become more apparent and continue to grow. Because the oil is still leaking out at the same rate, and the medications simply fool you into the feeling that you are a more or less healthy human being.

And gradually like a poorly running motor, you have days or hours when your medications don't work at all, and you can't move, or you can't stop moving, or you can't think clearly, or speak well enough to be understood, or standup, or walk. And then things get better for a few hours or a few days or a few minutes because your medications are working again. And then they stop again.

And you learn to accept misery as a periodic companion. A periodic companion who becomes a more frequent visitor with each passing day. And soon it is no longer a visitor but your closest companion, a shadow that inhabits you once or twice or five times a day and doesn't tell you when it's going to leave.

And eventually there's so little oil that the medications cannot keep the motor running very well at all. And you cannot walk right, or speak well, or remember things, or stop moving, or start moving, or turnover in bed, or get out of a chair, or feed yourself, or swallow without choking, or overcome your depression or your apathy, or hold your wife's hand, or touch her as a partner needs and wants to be touched, or smile.

And sometimes, you decide you had enough, and you kill yourself. But most of the time you simply survive. And you hang on, because you never realized how much suffering you were capable of living with. And you wait in hopes that somebody will find a cure for your disease, but they haven't yet.
And after a few more years, or many more years, or next year, you swallow a bit of meat that you can't get out of your throat in time, or you fall in break a bone that does not heal, or you get pneumonia, or you hit your head in a fall in go into a coma and never come out of it. Or you slowly slowly slowly lose the ability to do anything and you simply cease to be.

Tell them that this is Parkinson's. Tell them they are not selling candy or furniture or cars. Tell them they have a special responsibility to understand the world that the people they sell their medications to inhabit. Tell them that they have a special responsibility to understand the courage that the people they sell their drugs to show year after year after year as they get worse and worse and worse. Tell them we are not little profit centers. Tell them we are their brothers and sons and mothers and friends and uncles and aunts and fathers. Tell them to do their jobs in a way that allows them to sleep well at night. Tell them that we need their help as we fight to save ourselves. Tell them to care. Tell them we are them.



Sherylj
posted 12-04-2003 12:48 AM

Ann, I am exactly where you are at... especially the giving up on necklaces with clasps (at least there are alternatives). Living with the fear of what's to come is the worst thing for me, especially after reading what others have to say. That and trying to contain the incredible anger I have for a President who I feel has declared war on me and millions of others awaiting a cure that stem cell research promises to bring.



TxLady
posted 12-04-2003 01:36 AM

That's it GregM,
It's like the Tin Man in the Wizard of Oz. Squeek, squeek, FREEZE.
Just a little dose of drugs and lubrication is in gear...until squeek, squeek, FREEZE.
Even down to the frozen lips of the poor Tin Man who can barely say "o..i..l".
TxL



Ron Hutton
posted 12-04-2003 01:47 AM

I think GreggM1 has said it all, what a catalogue of the effects of this dreadful disease.
I could only add that it is so bad, you are so glad you have it and it is not your wife or other family. It is so bad you would not wish it on your worst enemy. It is so bad, that the sheer unpredictability of when an off period will occur, that normal life is impossible. It is so bad, that if you dose up to go out for a meal,to avoid a freeze, dyskinesia will cause you to throw your food in all directions.
It is so bad that you are totally amazed at your ability to cope, and to accept that in the 21st century, there is no cure and it can only get worse. (and I'm an optimistic person!!)
Ron



michael7733
posted 12-04-2003 01:54 AM

during the following activities, no smiling should be allowed:

first tie their ankles together so that they can only take small steps, and have them walk 25 feet.

then divide them into pairs. make one of them try to drink a glass of water while the partner shakes the other's arms.

then do the old routine where you twist your hand around each other with your fingers intertwined while you try to move a designated finger though instruction only (e.g. move the index finger on your left hand)...explain that the indecision they experience for that moment in that one finger is often like that for some of us all over our body, thus the slow, almost methodical, indecisive movement.

Then have them cross their fingers and try to button or unbutton a button that way.

by the time they finish these activities, your time should be up.


[post by janet paterson]

barbara l. davidson
posted 12-04-2003 02:38 AM

Originally posted by bd:
I spend a lot of time wondering -- wondering if:
I will end up demented, like 20 to 40% of Parkinson's patients do;
I will have chronic depression, like somewhere between 10% and 40% Parkinson's patients do;

i must challenge the percentages you quote above: my reading points to:
dementia - 20-25%
clinical depression - 40-60%
there are very good tests available
to determine the presence of either condition - maybe your neuro could set your worries to rest?
i suggest that time spent wondering if a feared ________ ... ?
(fill in your choice of condition or event)
is time spent on growing self-inflicted stress
which isn't good for anyone
but
which is especially not good for parkies
------------------
janet paterson
an akinetic rigid subtype, albeit primarily perky, parky
pd: 56-41-37 cd: 56-44-43 tel: 613-256-8340
w-site: http://www.janetpaterson.net/



[no name/date line, other material probably missing]

It's extremely painful to read these posts. I must still be in denial. My biggest fear is for my children, that is whether or not PD is familial. I once commented to my son Tom about having a healthy toward work, that is not being a workaholic like me, and he replied, "That's your gift to us Dad" Let's hope I didn't leave them a worst gift.
Bob Newton



[no name/date line, other material probably missing]

I've found that the great majority of my old friends are now avoiding me, whether they understand anything about PD or not, whether I can remember their names or not. When I look up across a large room and see someone that looks familiar, I have to stare at them for several minutes while my eyes slowly focus for that distance and I can recognize them and wave. If you stare steadily without blinking or smiling it will make most people nervous, especially if your face was scary even before PD gave it an evil expression as if made up for Halloween. Some of my family and my very close friends do understand my situation and still dodge when they see me coming. I think they want to remember me as I was 15 years ago, or maybe I remind them of their own mortality. Whatever the reason, it really hurts to see them scatter as if I were contagious. I can't catch up and I can't yell "Hey, wait up!" as I once did. My voice is so soft and weak that I can't even be sure of calling the dog for dinner.

The friends I've made within the Parkinson's community are great people, but they have a full load of problems to handle. Most of us are disabled so that travel for social reasons is likely to be something to be endured rather than the enjoyable trip it is intended to be. When we do meet it's most likely to be at the Neurologists office where we're busy concentrating on our health or lack of it. We don't dare start a conversation about the Middle East for fear we may confuse our weak memories and give the doctor an incorrect report of our symptoms. So we compare symptoms and talk of new meds and procedures that we've seen on TV. When we spend all of our time thinking about our own problems it's easy to see why one-half of "Parkies" are depressed and the other half are demented.
Good Luck Peggy slowbob
------------------
"God grant me the serenity to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference."
[This message has been edited by slowbob (edited 12-04-2003).]
[This message has been edited by slowbob (edited 12-04-2003).]



pegleg2
posted 12-04-2003 09:41 AM

Holy smokes! "Whilst I slept . . ." you guys REALLY came alive! THAT'S what I wanted to take with me - your most haunting fears, your intense anger at both the disease and the politics that prevent a cure, and your hope.

(Grego, you outdid yourself! Now I know what motivates thee! lol)

And thank you, janet and Greg, for the reminder that there is hope - and yes, janet, I totally agree with you, that PD can be a "gift." But it's a gift I'd like to give away many times - like when I miss an important commitment or have to "dope up" and pay for it later to do something really important (like talk to these sales reps). And as Greg said, "Do I feel that I have learned enough for one lifetime? Yes."

I purposely did not tell you which company is representing this meeting, but I will after I get clearance to do so and after I do the presentation. It is a BIG pharmaceutical company, and I AM PLEASED TO DEATH that they are LISTENING TO THE PATIENT! Do you realize the importance of that? Yes, it's good to read reasearch studies, to look at the stats, the successess, etc., but that is NOTHING in comparison to hearing it like it is from someone who lives day to day with the illness.

I plan to tell this company (and even get some media coverage for them) what a blesssing it is to FINALLY have people willing to listen and take note!

Thank you guys (and this sincludes gals) for your honesty and sharing concern and desire to help. It's what this forum (or should I say family?) is all about!
Peg


[no name/date line, other material probably missing]
[by pegleg2]

Carey -
Your final words in your poem are why I nearly kill myself trying to tell others about PD:

indigogo
posted 12-04-2003 04:16 PM

My voice will be silenced.
My hands will not respond.
My legs will not move.
My face will no longer register emotion.
Rigid and frozen my body will become
While my mind, ever aware, constantly thinking, processing, understanding
Will become desperate to communicate, connect, be understood
But unable to be heard

We MUST talk while we can!

Memaw - so good to hear from you again! You'll be in my prayers in January.

And paula, it was your idea for me to throw out this topic before I leave next week. I never dreamed how successful the response would be! Your comment that it "seems like we don't care," really hits home. I've had my kids scold me for "making faces" at their comments, when I didn't even realize I was doing so. I have to tell others that I DO care, in spite of what my expressions may seem to be saying!

Greg says he is convinced that a cure will come soon, and I would like to buy into that hope. But the reality is that many have already crossed over the boundary of "no turning back;" and those people probably are so advanced that they can't even read here. I want to make a difference for those people, too.

Thanks again to each of you! I'll keep you posted on the outcome (and if anyone else wants to add comments, please continue to do so!).



[no name/date line, other material probably missing]
[by Jaye]

I have not read everything above. I can't stand it. I spend enough afternoons in tears as it is. The endogenous
depression I had before PD was diagnosed is always there with its stingray tail, waiting to lash out and haul me down to the dark underwater abyss. Someone here said we cannot permit ourselves the luxury of a negative thought. I can "talk myself up" most of the time, which tells me and my doc that the depression is stabilized and mostly not a daily problem.

So okay, I figured out how to deal with that and a lot of other things, but I still have PD. I recently went through what felt like the five-year slide. No problem, I got used to it, and I work around the new intrusions, and I explain to my family that lethargy, inertia, slowness, disinterest, and appearing not to care are all symptoms, and I think they're catching on. And I still have PD.

Most of my friends have PD, and I'm always grieving someone's loss or accident or despair, always praying for comfort and guidance and a cure. But I don't believe I'll ever be without PD.

Having PD is like being in a house that's flooding. When the water is only in the basement, it's not too bad, but when it starts to take over the living quarters and interfere with daily life, it gets worrisome. There are signs of rescue, but the boats all pass by without stopping, and the water continues to rise. After a while you realize you're not using the main floor at all. You stay upstairs, but the water rises and starts to dampen the floor, and keeps rising. You go out on the roof, and you see rescue helicopters go by, but by now you can't scream for help and can't move to wave at them. And the waters keep rising. As you lie there in a rooftop puddle, a helicopter mercifully drops a message, which takes you several painful hours to open. The message says, "Sorry, all funding for neuropsychiatric conditions has been curtailed in favor of disaster relief for the citizens living in flood areas." And the waters begin to cover your stiff, helpless body.

FEMA - federal flood insurance -- will pay for people to move back into the same flood plain up to three times (if my memory serves me well). WHAT ABOUT RELIEF FOR MY DISASTER, PEOPLE??? I didn't ask for this, I didn't go out and catch it, and there are no lifestyle changes I can adopt to prevent its further progression. DAMMIT, I'M DYING HERE, and I'm valuable to society.

Jaye
[This message has been edited by Jaye (edited 12-04-2003).]



pegleg2
posted 12-04-2003 08:23 PM
[1-2 sentences omitted because they refer to a deleted item.-J.]
Jaye - your analogy of a flooding house is brilliant. At least your intelligence hasn't been affected.
I think I will copy this entire thread and make it available at this meeting!
Thanks, again!
Peg


jimmyj
posted 12-04-2003 10:27 PM

Let's get it balanced Pegleg, there are
'advantages' of having Parkinsons-
*an excuse to be so tired, you are incapable of ,at times, doing anything.
*A one in a thousand, well maybe 500. That's special isn,t it?
*Someone else has to do the driving.
*You get to park right outside the shop, whether you can get out of the car is another matter!
*Your day lasts probably 20 hours,PD certainly cuts down on sleep.
* PD is incurable, no worries about when or if I will get better.
* The thought of moving on to 'another place' is far less daunting, and eventually even attractive.

Etc, etc
Maybe above is an idea for wrap up of your presentation.
Good luck



pegleg2
posted 12-04-2003 11:38 PM

Excellent idea, jimmy j!
Another good thing about PD is you can always say "no" to somebody's reqyest if you "just don't feel good" and nobody will question you! haha
And I like that "balancing" part. Hmmmm - sounds like a visual aid.
Peg


[some rather scrambled material omitted]



my mulling cap has been on over this
ono!
i wonder about anything and everything:
what is it for?
some people want to know what living with pd is like
who are they?
why do they want to know?
who thought up the root of this concept?
why?
i probably would not ask these questions
if peg's audience were fledgling neurologists
or fledgling doctors or nurses i.e.
professional people paid to consult and offer opinion based on intellect, training, and experience
a pharmaceutical representative
is a sales person
why have they been hired?
who has hired them?
what will their remuneration be based on?
are they asking neurologists to tell them about pd?
does this pharmaceutical company engage in the new strategy of marketing their pharmaceuticals direct to the end-users ie the general public?
how will they use the responses we have written here?
hmmmm
janet

------------------
janet paterson
an akinetic rigid subtype, albeit primarily perky, parky
pd: 56-41-37 cd: 56-44-43 tel: 613-256-8340
w-site: http://www.janetpaterson.net/



[more rather scrambled material omitted]
[Peg reported that, after careful preparation, she had found her audience so receptive that she had ad-libbed most of it. To this day she is travelling all over the world, telling our story, asking tough questions, and making a difference. Thanks, Peg. –J.]

tell us your reaction, tell us what it's like for YOU to live with PD and what story you would like Peg to continue telling, contribute your related thoughts. Especially if you are on the historic thread, give us a little update.

I'll be doing this type of thing again from time to time.

Jaye

Being that my first symptom was 4-5 years ago, and that my dx was in May 04, the reality of pd has been coming in doses..As I sit here tonight and write this I have over the past few months realized, and it is more and more obvious than ever..That I am basically screwed to put it bluntly..Maybe that theres been way too many changes in my life in such a short time?..I dont know?..But usually most of the changes..not all..include a loss of some sort..Ive realized that Ive spent the past two years since my dx trying to figure out if Im on foot or on horseback..or whether or not I should be doing either?..Its like the "future" is something..............Yeah!..What is it?...Its like a word doesnt fit in my vocabulary anymore..Its easier now to look back than it is to look ahead..Its been easier to live in the moment than it has ever been before..I have this new kind of loneliness sometimes, unlike any Ive ever experienced before..Its not a people loneliness, because I have plenty of friends..some of the best ones Ive ever had as a matter of fact..and many of them happen to be you people..Its a, I miss the part of me thats gone forever kind of loneliness..Its like you get up in the morning and think..well..Id like to do this n' that today..but first I have to check with the board of directors..and Mr Parkinsons is the Chairman of the Board..and he has the final word..end of story

This was how my day went today..

I got up at about 7:30..ate breakfast..got online for a while..Headed down the boatyard..Stopped at Bristol Marine on the way down to inquire about dockspace for my small boat..Sorry..We wont have any available for the winter season..Trannslation:..No Commercial Fisherman Allowed!!..Theres a two lane bridge on the way down thats always got construction going on..so I wait in traffic..Get to the boat..put a charger on one of the batteries..Start the engine up and let it run for 15 minutes..Head home..Get stuck in the bridge traffic again..Get back home..Leave a message for my lawyer concerning my moms estate..He doesnt call back..Check my messages because theres a guy interested in buying the boat..Then the phone rings..Its the boatyard.."Were you on your boat this morning?"..."Yes".."Did you do anything unusual down here today".."No..Why?".."Theres an oil slick in the marina".."Well I didnt pump anything overboard so..Do you want me to come down there?"..."Well I'll go take another look and I'll call you back".."Ok bye"..Half an hour later the phone rings again..Its the boatyard again, and he tells me that the oil slick came from my boat and "so and so" ..(one of my #$%!#$%#@ brother fishermen) ..agrees with me that it came from your boat.."Best you take care of it before somebody makes an issue out of it"...Now I know damned well it didnt come from my boat but to keep the peace I simply said.."I will take care of it"..Its now around 11:00 am..Head back down the boatyard..Get stuck in the bridge traffic again..Get to the boat..Look in the bilge..pour a gallon of bleach in it to whiten up the bilge water..Low and behold theres about a shot glass full of oil in the bildge..And thats it..So now I know the oil slick didnt come from me..Another guy interested in the boat shows up while Im there..He wants the boat..but no gots the money..Head back home..Get stuck in the bridge traffic..AGAIN!!..Get home theres a message from the other guy who interested in the boat whos got more money than brains..I call him, and offers me half of what it Im asking for the boat..never mind what its worth..I tell him to forget it and hang up the phone..As I walk away from the phone I get this insane thought to call this bozo back and tell him hes got a deal, because I cant take the stress, the cost, the worry and the anxiety and the burden of owning this 47' floating lumberyard anymore, because of pd..I get home and my former first mate calls me..Hes the guy who worked for me last year and had to fire him because he had a drug problem..Recently we put our differences behind us and buried the hatchet..He wants to come down and talk to me.. so I tell him to come down even though the fatigue now has the best of me..He shows up and finally tells me he had a sledding accident with his new brides kids last winter..broke his collar bone..The Dr gave him a prescription for Vicodin..AGAIN..and hes abusing them..AGAIN..and his wife knows about it..AGAIN..and what do I do now?.."Can you hold the pills for me so I wont take more than Im supposed to".. ..(Lord..Why me Lord?..Im trying real hard down here ya know!!)..By this time my voice is begining to get weak and softer because its 4:00 in the afternoon and I have to lay down now before I fall down..All the thoughts of the days events are rolling around in my head like a pinball machine while I listen to this Bull@%$&..Here a guy who fell in the sewer a couple of years ago and came out wearing a new suit, and is self sabbotaging and undermining his own life..and here I sit, having risen above the demons that are possessing this poor guy..tired, exhausted, weak, fatigued from pd, my life is falling apart again for the second time in my life, but not of my own accord this time..And this man looks to me as a source of strength.. ..I havent felt very strong lately..I finally got home and took a nap..depressed from the days events beyond my control..I sleep for a couple of hours and wake up with a wicked emotional hangover..Best I get in the shower and get my butt to the 7:30 AA meeting and try to get a reprieve from all of the days nasty events..I actually felt like crying by the time I got there tonight, and hoped that no one would ask me to talk because I dont think I would have been able to hold back the emotion..So I sat sipped my coffee and listened..and I heard what I needed to hear and felt a little better when I left..and the old AA cliches were ringing in my ears on the way home.."Easy Does It".."This too Shall Pass"..But for the Grace of God".."We are granted a daily reprieve contingent on our spiritual condition"

Life as I know it has forever changed..I feel like Ive been in that "Life comes at you fast" commercial for too long..The cooler air is here giving natures hint of autumn, and makes my legs feel stiff..Im begining to lose some coordination in my left hand now..my right is about useless..I am starting to feel a bit of that parkie out of sorts, out of control thing going on, that the summer months usually give me a reprieve from..And the worse thing is Im starting to feel a hint of losing emotional strength because of the numerous changes Ive been through..Too much..too fast..too many irons in the fire..too many lose ends to tie up..Not enough time, strength, and patience to deal with it all right now

And did I forget to mention that nobody understands..some dont care..and others will kick ya to the curb?..The only ones who understand what its like to live a day in our lives..is us parkes..

Steve

I didn't read all the comments as the ones I skimmed through gave me a general idea of the thoughts many of you have on P.D.
I haven't posted much here or on BT1 but I'm sorry folks I can't keep my trap shut on this so at the risk of having my head bitten off here goes.

What I can't understand for the life of me is how so many of you with what sounds like fairly advanced P.D. don't have DBS.
I remember posing a question regarding increasing off times with another group a few yrs back and one reply that stands out was one I agree with now "when your life turns to s.... don't you think it's time for DBS?"

Lee

Once upon a midnight deary
as I studied long a book
I become quite bored and weary
so off to the chatroom, I went for alook...

and I heard a maiden laughing
as she proclaimed, OH sheesh!!
and I saw her nerf bat slighty wap- wap- wapping
some curious figment on a leash.??

Oh, I think you know who she is?
she's a sort of dusty blue...
As I heard my maniacal rave- rave- raving!!!
Periwinkle it is YOU!!!!..
hahahahahaha...


It's the Raving lavenderlou,

never flitting, still is sitting, still is sitting..
by her 'puter, just like you!
And the New year's crowd was screaming o'er her dreaming prose and more..
Happy New year!! you are darling!!
Quothe sp? her RAVING...
I WANT MORE!!...

what has happened to my sense of humor? since 2000

Tena, this is probably the greatest insight into your personality I have ever had. It is totally unique and honest.

Steve, what can I say, my friend? That I understand from the heart a person whose life could not be more different from my own in this country? Yes, and that's why we do this.

madeoverseas, thank you for your reaction. You have a legitimate question. Short answer for most cases: because DBS is not a cure and can do its own harm. I will start another thread for you on the topic to provide some responses to what I believe is a sincere question.

Jaye

This is an amazing post. Reading all the comments Jaye compiled was heartbreaking and yet inspiring to me at the same time.

For me, PD is the univited guest, the unwanted visitor that has very much overstayed its welcome...one which I never offered in the first place! It's funny (or not) how you can feel like a prisoner in your own body as PD relentlessly does its thing. Hour to hour, you never know how you're going to feel or be able to function.

And yet, it has given me a new purpose. I am dedicated to speaking out about this dreaded and devastating disease wherever and whenever I can. Educate, advocate, and make people aware. We can't sit back and just assume people will understand or relate to what we deal with every minute of our lives. So I plan to talk (and then talk some more) to attempt and create that understanding as best as I can.

What's it like living with PD? For me, it's the same as you and yet so different. It sucks, I hate it, it makes me angry and sad. And yet it also reminds me of how precious and fragile life is and that we should do everything we can to not only improve our own quality of life, but that of others.

The bottom line for me is, I've decided that if PD wants a fight, then I'm going to give it one. I hope it's ready for me...

Todd
PDTalks.com