PD DOES eventually RUIN MANY of OUR lives. Maybe not today, not tomorrow, but one day it just does. Maybe i should just keep my mouth shut, but hey, some day even Harry Potter is going to die too, right?
By ruin i mean many things. Bodily ruin, financial ruin, relationship ruin, etc. In the beginning, we muster courage, we believe that it's not so bad that we can somehow mold it to fit our expectations, our NEEDS. But then, as it advances, bad things come about, things like not being able to get out of bed, depression, weakness, falling, dyskinesia, pain, psychological changes. And the worst part of it is that if we seem to get a bit self engrossed, as one might expect anyone with such severe problems to get, we can change the way that we relate to others.
WE wonder why we lose our friends. They are usually the first to go. It takes a special friend to be able to listen to us tell them about our condition over and over again, without getting a bit sick of it themselves. It
brings them down, they don't enjoy our conversation anymore and then get scarce. Then the people who love us go. This is for many reasons, they can't take our disease because it affects them in such a negative way too. Many a spouse of a PWP will tell you that they "just can't take it anymore". Since we don't just pass on in a "reasonable" time, it gets all engrossing for our "caretakers" too.
NOw my best advice to those who haven't yet been abandoned, is to just "shut up" about PD. If you are unfortunate enough to be living with someone who just can't take PD, their behavior will cahnge too. IN some cases they will make a big deal out of your changing demeanor, and bait you so taht you start saying things that are "nasty" back to them. This then gives them the "out" that they are looking for. Arguements increase, and eventually they say that they "can't handle you" anymore.
What i have related is like the ghost of christmas future, for many of you, these things have not yet come to pass. THose able to still post here must remember this. We make our own future. So even if you were witty and outgoing and a good conversationalist, or whatever it was that attracted you to your partner and caretaker, PD MAY change all that and you MAY be eventually despised for the changes that PD brings, and therefore "abandoned" or at the very least "marginalized" in and amongst your friends and family. It takes a very intelligent person to notice the subtle changes that PD bestows on us. If one were told you that they thought that you were in the beginning of dementia, How would you react? If you thought that nothing had changed and that you were still the same person inside, would you neccessarily be correct?
So , I will leave this with each one one of you to ponder. I have no answers for the questions that I pose, except for that piece of advice. Don't fight with anybody, just because you are in pain or feeling crappy because of one or another of the worst PD symptoms. TRy to be upbeat and optimistic, NOBODY wants to hear your sorrows. TRy this and you MIGHT be able to hold on to your life as you know it for a few more years than otherwise. If you don't take my words to heart, then i can say that what i have said is a possible scenario for your future. Please, my PD friends, choose better over worse. cs

Wow, CS! That is a very bleak picture. I am hoping you are wrong. I guess I believe that everything you propose will happen to some people and some of what you propose will happen to all PWP, but that all that you propose won't happen to all Parkinson's people. I agree that we have to withhold most of the real truths about PD from others but only because it serves no purpose. The forum helps when we want to vent. Your post is powerful. I think most readers were hesitant to respond because it is so strong.

Ann

I guess I can relate to some of what CS says because I am living some of it right now. No, I'm not the PWP, but I am the person who could leave the PWP. But I won't. He would never do that to me were the roles reversed. He is truly a loyal, caring person. And this should not have happened to him, as it should not have happened to anyone who has received this sentence. But life's not fair and it never will be. I am not looking forward to what's confronting me, but I am trying to do the best I can. Some days it's so damn hard. I don't want to get out of bed. I know that my husband would never be this way if he could change things, but he can't right now. And I have to admit, I have said some terrible things to him over these last two years. He has been forced to retire and he spends each day anxious and depressed and can't get off the couch. He is not the person I knew two years ago. Would I change things if I could? Of course, wouldn't we all? I had plans for us. They won't happen now. My brother-in-law just returned from a two-week trip to Italy with all of our friends. I know I'll never do that now. I had hoped to visit my family in England, Ireland and Australia after we retired. That's no longer in the cards. But what am I going to do about it? Nothing, because there is nothing I can do. I made a commitment on October 14, 1972 when I was 21 years old. I'm going to keep that commitment. He's all I've got. I apologize in advance for this post, my mood is somber at the moment.

My girlfriend read this entire thread with me last night and she commented that none of us mentioned our significant others in our posts. She commented that she is lucky since she met me 22 years into my disease and wondered how hard it would have been to see my entire progression. I think she would be opposed to withholding all the information that would affect her. I have been totally honest, maybe too so, with the information but want her to know EVERYTHING. I lost one wife to the disease because she didn’t want to face it with me so will do everything possible to prevent that from happening again. We will never get married, for other reasons, so know I am taking a big risk revealing all I know about the disease to her but it will be her choice now to stay with me or not. I only hope without a commitment that she will see it in her heart to bear it out with me.

I can’t agree with you that it has ruined my life, it changed it for sure but I am alive and still enjoying most days. Perhaps more so now than ever before. I know things could, and probably will, get worse but I have three kids, 5 grandkids, and a wonderful gal that will make it as enjoyable as possible. I will live each day of the future as if it will be my last and not worry about tomorrow. I have little control over tomorrow but will go to work and be as productive as I can be and hopefully in the process help someone even less fortunate.

We volunteer to take a gentleman with Alzheimer’s for a ride on Wednesday evenings so his wife can have some free time. We took him to a Wild Game Reserve recently and every few minutes he asked “Who bought me here?” It was an hour trip each way and we heard some stories about 20 times. I still have my mind and realize it could much worse that it is now. I am thankful that I can still be productive in this life.

Sorry for rambling so long.

I made this recording. Each time I listen to it now, I can identify with it's truth just a bit more:

http://www.braincrumbs.org/beastmix.html

The truth is...WE are still writing the next chapter. There might be only a few more, or there might be many. Live each remaining chapter with love. Don't let resentment or hurt or anger or poverty or abuse or any other debilitator take away the contents of the gift that every day contains. Within its contents are treasures. Although they might be packaged amongst a bunch of worthless STUFF, the treasures ARE there and worth digging for.

I hope the audio is not too strong.

michael b.

DaleD You bring up a very good point when mentioning your girlfriend who only knows you as a person with P.D. and didn't know you years ago before dxs. I'm sure it would be devastating for a married couple to find out that one of them has a Neurological Disease and it will change their lives forever, not really any different than the relationship falling apart for other reasons. Yes it is your partners choice whether or not they can handle living with a PWP, I think if they can't handle it then they should find a way out, after all they have their life to live too. I wouldn't want anyone to stay with me if it made them miserable. I am presently in a relationship where I have laid my cards on the table just as you have Dale and will let the chips fall where they may. If today is a good day then I can feel lucky that I had that special time with my special friend, but everything, whether it is good or bad comes to an end. We all have to accept that so lets just try to make the best of things right now. Who knows, you may go out the door and get run over by a truck and then you would have spent all that emotion worrying about something that will never happen. Sorry ol'cs I can't take your advice and shut up in fear of being dumped. I don't intend to be a whiner but this is the way it is and if I am living with someone when the going gets tough and they don't like it I'm not going to pretend everything is O.K. just so they will stay. As I said in my earlier post just drop me off at 5,000 ft.

CS is one of my heroes I have found on this forum. If he will keep posting, from where he is, he is living proof of how hard a pwp can fight back. PD leads to a unique form of insanity and there comes a point when like a moth to fire one is drawn into it. It has it's allure. Too much sinamet (as I freeze up having just added 100mg onto the 150mg I should stay with in hope of being on one more time before bed.) I will probably not go dyskinetic as I've been paying the price of being off much of the time trying not to push my threshold over the top.

Cs, you've given years of good advise and support to all pwp. Post when you can. We are listening, whether we like the music or not, and are reminded to do all we can while we can. We can never give up. One thing we have all learned is that when you hit bottom you can only go up. I like that saying "what doesn't kill you makes you stronger." Not that it makes things any easier.

I have changed. The two things I lived for where My Total Independence and My Physical Ability to change the world. Duh? Long gone friend. The way I look at it now is "I'm only working with half a brain, but at least I know it!" Yes the new Me has some good traits; unlimited patience, accepting and enjoying help from other less than perfect individuals, being "an inspiration to all of us" when I find myself still alive in the morning, get out of bed and choose to keep living, and best of all my ability to trick myself into believing there's hope for a cure and trying to do something about it.

I have other heroes like "The White Rats" and Teresa being able to "pull a rabbit out of the hat" and find something that made a big difference for her. Maybe there is hope? PD sucks!

Looking through my dry dry sense of humor I'm a long long way from even considering giving up. Must be the stubborn German in me.

What CS posted happens to alot of people..Ive read about it online, and Ive heard it discussed in support groups..Me..Im not married, so that part of it doesnt apply to me, and I have completely abandoned the idea of ever marrying again..That decision was made before dx after marriage #2 failed, and pd is all the more reason now why I have no desire to make that committment again..I am basically a reasonably happy guy..I have moments of near euphoric happiness where I am grateful for the life that I have, and am enjoying it more now than I ever have..I have dealt with pd the best I can after I got over the initial shock of dx..But I see how the people in my life around me deal with it..this is when you find out who your real friends are..My family dramatizes it..Some people keep their distance in fear that I may ask them to help me with something, and others wont allow me to do anything when they are around..Some people wont get in my truck with me, even though I can drive just fine..But they would get in a boat with me.. ..Figure that one out.. ..Sometimes people give me the feeling that Im like a marked card in the deck, and still others tell me that I am a source of strength for them, especially in AA..There are people who are faced with illnesses who, come and talk to me about it, and it makes me feel useful..So having pd can be a mixed bag of good and bad

What CS mentioned, and I find myself doing now is talking less and less to people about pd..This can be very hard to avoid, because the usual greeting from people is "How do you feel?"..I reply that Im doing well, and drop the subject..I have been through the process of feeling different from the average people, and i just want to blend in and be one amongst many..I had a good summer season fishing this year, and for the amount of gear I fished, I did as well as most, and better than some of the physically able guys..Pd forces you to use your mind rather than your muscle..and Ive found that I always have to be open to different strategies, as the former way of life as I knew it doesnt apply to most situations anymore..Back on the subject of marriage, relationships, etc..I have lived without a live-in female partner since 2003..(I have a girlfriend who doesnt live with me)..and I am most content moving at my own pace, and doing what I want to do..when I want to..My daughter is 26 yrs old and has her own life..So I plan on staying the course, and getting as much enjoyment out of life as I can..while it lasts

I agree. CS isright.PD sure is bleak.But so is farting in public Believe me...I would sooner be clocked having a dose of the shakes rather than be caught parping away in a crowd.I`d simply DIE

But...joking aside [and before anyone hounds me for making light of this..I AM NOT...I am in my 11th year at least with this foul disease so no-one needs to tell me how it is] addressing firstly,the issue on relationships...
In my humble opinion,whilst paying lip service to the fact that without doubt,this illness,as with any other serious condition,will put a strain on the healthiest of relationships.But what I don` t go along with is that folk leave just because of it.If they want to leave a relationship,they will find any hook they can,even down to something as insignificant as the way you say HI so that alone should not make you afraid of speaking out as to how you feel.The important thing is this;
There is a wealth of difference between stating how you feel and moaning or whining.To admit to feeling low,futile,desparate,sad etc is NOT cause for someone to get arsey or impatient with you.To heap these things in a blaming sort of way on another,be it a friend,relative, IS unproductive,but in any caring relationship,there should be room for understanding,empathy and support.Maureen and Therese are shining examples of this.Yes...Maureen has been honest in how tough it is....but both hers and Thereses love and generosity of thinking has enabled them to get through.They must feel desparately sad at times...not just for there own loss of dreams and hopes but their patience and kindness,their strength to see beyond the bleak times,have upheld them and kept them in the daily grind that is so characteristic of this illness.
Personally,I would be more insulted at my husband sticking around just out of a sense of duty.I have my pride.If I can`t be loved for who I am ,then I don`t want to know and I feel sad for those folk who have been left feeling that having PD has wrecked their marriages.Believe me.You are better on your own.
There are those on this forum I am sure,who reach for the bucket when I seem to post constantly upbeat messages.But I would like to think tha t the more broad thinkers,the more mature,recognise that it isn`t like that for me all the time.I just chooose to post that way,but hope that when I feel like saying "Help!!! I feel like CRAP today" that I would get the love and support which is so evident on this forum.It is so important that we know we can say exactly how we feel and not be seen to be grumbling.

So.....I could tell you the times when I have sat beside my young,physically active,able husband,and cried inwardly as I watch beautiful young women walk by,their heads held high,,their walk...normal....confident that they are not going to fall flat on their cute little arses.
I could tell you how it feels to watch my family slope off to the cinema without me because I know i just won`t be able to sit through a film.
I could tell you the time I woke in the middle of the night,ravenous,and managed to get out the tub of butter,the bread,the fillings,but then not have the strength to get the top of the butter,the tag off the bread packaging,the film off the prewrapped ham..so instead had to stare at ingredients that I hadn`t a hope in hell of fixing together.
I could describe the pain I suffer everyday with dystonia,my limbs stretched to snapping poiint,my hands too rigid to type,my foot too twisted to walk.

But at the minute I choose not to dwell on those things.Another day might have me just do that.I hope when that day comes I am free to do this .

And I would like to think that I have learned HOW to verbalise my thoughts in such a way that it is not seen as moaning,and equally I hope I have the generosity of thinking to understand when someone posts sad,or feel the need to say they are sinking.And be there for them.

Yes.PD sucks.Losing a child sucks.Watching what some folk do to our world sucks.And yes...through it all there are moments of joy,and beauty,treasures,moments which will remain unforgettable by their element of surprise.And we will all react to each one differently.See the rainbow somedays,see the dark clouds other times.Feel wonderfully optimistic and hopeful one time..feel down in the mouth another time.
Such is the nature of living this life.

But underpinning the whole of this journey that IS life,is the need to be a people who can care,understand,be big enough to sift the wheat from the chaff,and share one`s experiences with others..both good and bad.

To me there are no wrongs and rights with tackling this disease.Just the ability to respect each others chosen method of coping and surviving.
That is all we need.

And finally....everyone on this forum is a hero in my opinion.Even those who bug me Kidding. x

Have a wonderful day. It`s pouring with rain here and we may be on flood alert....again.:confused so am off to prepare for another potential soaking.
Can`t do much damage this time...there`s not much left in my home to ruin now.
Now let`s see....rescue the important things first...bottle of baileys...teddy bear...lol
x

I must say that I'm not only still optimistic, but truly happy about my life. I'm still progressing very slowly at 69, but know that, absent a true breakthrough treatment or cure, the slow catastrophe is coming.
I've seen PD all my life in my mother and older brother, both of whom fiinally succumbded to its ravages, one after 30-plus years, the other after only 15. Both suffered dementia which seemed to me the most tragic aspect of the disease. Also, although never diagnosed with PD, my older sister had dementia for the last few years of her life,which ended at 72. I now know that she probably had Lewy body dementia, likely the result of the same genetic mutation I have and that may now be hidden in my own children and grandchildren. It's now time for DNA testing to attempt to identfy the monster, if possible. Although my own children are already aware of what the possibilities are, they must deal with the tough decisions about how to break the news to their children. For them and all of our children, it is my fervent hope that the next decade will bring a cure, or at least truly effective neuroprotective treatment.
I am unusually blessed in that my wife and my brother's widow have been best freinds for many years, well before we were aware of the monster gene among us. Her great spiritual strength, resiliency, patience and sense of humor continue to be a major source of inspiration and encouragement to both of us. For us, hope, faith and family have been our anchors!
Robert