The Stranger I've Become
 

Since we are a population of mortals, sooner or later we come to terms with the fact that we are going to age and die. Accepting that reality is definitely a challenge, and sometimes when my peers and I chat, we commiserate how the unthinkable has happened. We’re certifiably old compared to a majority of fellow human beings and we can’t believe it.

Do I mind getting older? Of course I do, but what really gets me is Parkinson’s has greased the slide. Today I was at physical therapy for a bad back, and as the therapist worked on me, I remarked how I was not the person I was twelve years ago. He didn’t answer, and I guess he was thinking to himself, “No duh! Who is?” I realized the futility of telling a temporarily healthy therapist what I really meant. I was not just losing my youth; I had become an entirely different person. This wasn’t just an older me. This was an older other.

We all have to deal with aging, but sometimes I don’t recognize the person I live within. My face still looks like me, but I stand crooked, my shoulders do not line up, and where once I had exercised daily, I can barely move when I am trying to and can’t stop moving when I least want it. I had been a top student as a young person. Now I panic about my ability to think, taking IQ tests off the Internet to reassure myself. I once had a great interest in my family, but now I am often inattentive to their conversations. Job or task completion once drove me to accomplishments. Now I feel as if I am drifting through life without a sail or rudder or navigation tool. I did not worry about the future back then, but now I try not to even think of it. Although I have a patient and helpful husband, I know that only I get to live every moment for the rest of my life with this stranger I have become.

How am I coping? Well, somewhere I read that Ritalin can wake us out of the apathy that is part and parcel of our disease, but I rely on sheer determination to stay focused on tasks, talking to myself sternly as I do housework or school work or bills or projects, all of which seem to never get completed to the satisfaction of the former me. I try to lighten up when I am with others, because I don’t want to become the dullard I fear I might become. I work hard at it, trying to keep intact not only my body but my personality. I am trying to find the person I once was. I am really trying.

To paraphrase Emily Dickensen, uninvited Parkinson’s stopped for me even though I never considered such a circumstances as even a remote possibility. Time for the uninvited guest to leave. Time for a cure.

Ann

how true......
 

the only thing we can do, is exercise to slow the decline.
I feel like i have a 10th of the mental capacity I had even 5 years ago. I am scared to even try to go back to school. PD sucks!!

CHarlie

Super post AnnT2 - if I may, I would like to copy it to my hard disk (fully attributed of course) ... there are a couple of friends who I still correspond with the old-fashioned way and while I tend not to talk too much about my "parky bo11ox" I have really wanted to try and explain the different me but usually by the time inspiration to write to them has hit I am totally pooped and so end up chatting about my dog and life and their kids and stuff!!

Your words have really hit the spot and it would be an easy inclusion in an envelope with a "THIS is what I want to say" annotation. With your permission, of course.

:)

brockie

dear lady ann
 

AMEN Sister Ann - :hug:
I love -Emily

Because I could not stop for Death (712)
by Emily Dickinson


Because I could not stop for Death –
He kindly stopped for me –
The Carriage held but just Ourselves –
And Immortality.

We slowly drove – He knew no haste
And I had put away
My labor and my leisure too,
For His Civility –

We passed the School, where Children strove
At Recess – in the Ring –
We passed the Fields of Gazing Grain –
We passed the Setting Sun –

Or rather – He passed us –
The Dews drew quivering and chill –
For only Gossamer, my Gown –
My Tippet – only Tulle –

We paused before a House that seemed
A Swelling of the Ground –
The Roof was scarcely visible –
The Cornice – in the Ground –

Since then – 'tis Centuries – and yet
Feels shorter than the Day
I first surmised the Horses' Heads
Were toward Eternity –

Of course, Brockie. Your comments lifted my spirits. Thank you.

Ann

Well put Ann, I also cannot believe this is happening to me. I work very hard at being the old me but deep down I know that person is gone. I feel like I am on a slippery slide and its moving fast. I try to live each day to the fullest not knowing what tomorrow will bring. Will I be more aware that my illness is progressing, only I can tell from within when it has changed for the worse. I may sound rather cold and blunt but I often joke with my good friend who is a pilot that I may need him to drop me off at 5,000 ft. one of these days. I don't look forward to being very disabled, to the point where I have to rely on others to do simple daily tasks. I remain optimistic that there will be new meds and new surgeries to help us live a relatively normal life.
I'm not asking much, just to keep my mind and body functioning well enough to be useful and to spend the rest of my quality time with my family and friends without being a burden. I still have enough energy left in me to get out and have some fun, but who knows how long that will last.
I also talk to myself to stay focused and use my brain, in fear of losing my mental faculties. When I wake up in the morning after a night of broken sleep and I try to get up out of bed it is very apparant that this is not a healthy body. I wonder how long before I will need help to get up out of the bed. No I don't want to go there, so I try to focus on each day and like you Ann I wait for the cure. You are not alone, all of us here know what you are talking about and I am glad you spoke out about it, I know I'm in good company.

Ann,
Excellent post. I hadn’t thought much about it lately, but yes Parkinson’s has changed me from the person I was before. Some say it’s been a change for the better.
While I long for that wild and crazy guy to appear once in a while, I know he is gone forever. I miss those carefree days when I’d go hop on the Harley and ride cross-country for a week just because I could. I miss that guy that always made it to work on time and gave his all every day. I really miss that guy who was a picture of perfect health with the ripped abs and bulging biceps. He’s gone and there isn’t anything I can do about it.
However, I kind of like the person that has replaced him. Yes, he’s slow, awkward and shakey now, but he sees things in a whole different light. The old guy would never sit down and read a book of love poems. He would never know Jesus Christ as his Lord and Savior. That old guy would never know how beautiful a rose is. He would just pass it by.
Yes, Parkinson’s is a terrible disease. I’ve had my fair share of agony from it. I’m sure there is more to come in the future. The changes that have taken place in my life because of Parkinson’s Disease aren’t all bad. Life is what we make it.

GregD

As GregD says...
 

...I like myself as I have become. I feel that PD has brought a certain wisdom with it. Too much of life is consumed by jobs, TV, etc and one day a person wakes up and it is over. I've faced that moment and then realized that I still had a lot of years to fill. Most folks don't get that chance.

Don't hijack the thread but go to the one on "Ginseng" if you are concerned about the cognitive aspects. Download the paper and read it (it is quite understandable). It covers far more than PD and things like Alzheimer's benefit greatly. I am about ready to say we should start it from the first tremor.

For me pd has been a bittersweet journey..It has certainly not only changed me physically, but metally and emotionally as well..It has changed my character, but mostly for the better..Like Greg, pd has certainly been a stop and smell the roses experience..I like that pd has taught me patience, because I had very little before..It has made me compassionate in a special way..It has made me review my life and has enabled me to make some positive changes..It has enhanced my spirituallity, and it has deepened my love and understanding of animals..With it comes a newfound wisdom of the way things are..But it all comes with a price..The downside is that I physically function at about 60% of my former self..I cant get through any given day without an afternoon nap because of the fatigue..I sometimes get frustrated when I drop things, spill stuff, cant pick up a piece of paper without a battle..Have difficulty getting objects in and out of my pockets, and sometimes it angers me..I find that it has caused me to isolate myself from alot of people, and have moments where I want to be in my own little world, without any committments to anyone..I have become very emotionally sensative, and get weepy over nothing sometimes..One of the reasons why I find myself isolating is because I have to move at my own speed physically and mentally..I can read only for short periods of time, and my memory is shot..I have difficulty expressing myself verbally because of the stuttering, and the mind being a step ahead of the mouth..I am however grateful for the things that I can still do..I can still walk, talk, drive, and go out in my boat a few times a week..It has really helped me look at whats good about my life, and I enjoy my life more now than I did when I was well..I am especially happy that I am better able to live for today rather than to keep looking at the road ahead of me, and the wrath that pd will eventually wield on me..And it has given me some great friendships that I otherwise would have never had

At what point?
 

At what point does one change? Is the change judged by a qualitative measurement or a quantitative measurement. I mean, do we change into someone else after a certain percentage of the characteristics that define who we are change, or do we change after a certain quality of life is removed from us? Do we lose who we are completely, or are we melded together with a new us? Or does who we are just disappear one tiny bit at a time until there really is no us left...we become undefined...unrecognizeable.

I must admit that my mind thinks differently now than it once did, and as it recognizes the limited capabilities of its house, it makes adjustments that will allow the mind and body to continue to function together. With longevity this is sure to change with or without Parkinson's disease. One question is, which will lose functionality first, my mind or my body? Which would be worse, to be a mindless body or to be a bodiless mind. A thinking mind trapped inside a non-functioning body has got to be one of the most frustrating things I can think of. On the other hand, what would a functioning body do without a mind to guide it? Would the instinctive aspects of life take over and rule? I don't know.

michael?

How Sad To Read Your Posts
 

I could have wept when I read your posts here at this thread. As you may or not recall, I do not have PD...but, I am the carepartner of one who IS afflicted with this dreaded demon disease. No...I do NOT "walk in your shoes" so that I cannot fully understand how it must feel to have lost so much...BUT, I walk beside my pwp every single day...watching her "walk in your shoes"and it has saddened me to watch her change "right before my eyes". I want to say...as I read your posts...I noted a common thread woven throughout each of your messages, i.e., that you seem to have become better human beings as a result of having had PD...that you've come to understand what really IS important in life and isn't that ultimately the most important thing for all of us on our life's journey? Yes...you have lost the ability to do what you once were able to do...you have lost the ability to "be" what you once were...but, in the grand scheme of things, I wonder if your lives aren't better in that you have evolved as better human beings? I realize that you could be reading this and thinking that I have no idea how you suffer....and even that I have no right to say what I've said...but, it is as I feel. I see in all of you the kind of person I would like to be...you are an example for me to follow. You have provided a way for me to attempt to be the best human being that I can be...and I've said this to all of you in the past...but, it bears repeating...I admire so much your strength and courage. No...I do NOT "walk in your shoes"...but, remember...I walk quite closely with one who does...and I need all of you to help me on this journey with her.

Blessings to all...
Therese

What a big subject!
 

It's the relentlessness of PD that I find hard. It just narrows my life no matter how hard I fight.

My wife is going to the cinema tonight with friends but I am staying home, too tiring to join them at the end of a working day. My best friend is getting married next Friday and i am supposed to be Best man (that's a misuse of the English language lol), he's knows it's unlikely I will make it as my fatigue is just off the scale at the moment. I am not looking for sympathy, I still have a lot going for me but it is strangely comforting to share these things isn't it. Like Steve, Greg and Rick implied, I have also become much mellower with PD and I like the new me, just a pity about the body I now have to inhabit.

I used to travel extensively on business and holidays but PD has narrowed (stopped) that too and I last left the UK 3 years ago. However with the help, support and encouragement of another PWP I have booked a two week cruise for August. Ship leaves from UK so no flying and two weeks sailing in the Med. The reason I mention this is to finish the post on a positive note.

Perhaps an idea for a new counterbalancing thread would be to get us to list the positive things about our life with PD!!!

Thank you Ann that was strangely purging.

Chris

Chris ...
 

you have a pm.

Neil.

These posts have given us all pause, a true reflection of life with PD. While I, like Therese, am not the PWP, I can relate in some way to what you all are speaking to. My husband is a different person than the man I married almost 35 years ago. In the last two years he seems to have lost connection to himself and life around us. I feel as though a tidal wave struck one day and life has never been the same. It never will be again. I have lost my best friend and every day I pray for some miracle to bring him back just a little. I think I can deal with the physical challenges that will be ever present, but the mental challenges are what gets me down even more. I miss his jokes, the way he could tell a story, the way everyone gravitated to him, his love of his home and the meticulous way he took care of our yard and the pool which had to be opened before Memorial Day. I miss the rides we would take together to the Hamptons or Montaulk, going to the beach, the boat he loved so much because it relieved his stress from a crazy job at a NY airport. I just miss Richard. If I could get him to a place where any of you are, I think I could smile again.
I realize that all of you would much rather be in a different place, back to the way you were before. I don't blame you, I can only imagine what you are going through. I believe I have learned more about life since I found this place than I ever could no matter how long I live. You have all taught me something about how to live life, as you face each day with your determination to make the best of things and recognize the good things that you have in your lives.
Every day I tell Rich about the incredible and inspiring people I have met on this forum. I wish I could get him to participate but he is not there yet. One day, maybe. Thank you all for sharing your wisdom and your hearts.
Maureen

Maureen -

You are proof to all of the PWP that with chronic conditions such as ours, the Parkinson's patients suffer but so do those who love them.

Print out these posts. Richard is more aware than you are that he is becoming more distant, less gregarious, and less engaging. He may think he is alone in this condition, and he is probably panicking. From my readings, I find that for the most part, PWP do not lose their intelligence but for the most part they do lose their organizational skills. That is why the pool and lawn are not so important to him. He probably wanders from task to task.

To those who have posted, thank you for your commiseration. I am going to look into supplements like ginseng as reverett123 suggested. I am down, but not to the count of ten. I still have hope.

Ann

PD Is a life altering disease...........and regardless of a persons stage of disability, each day has,can and will bring forth new challenges as their life is altered.

Like many of you. Over the passed almost 4 yrs , I have found a greater understanding of what a human beings "blueprint" was probably supposed to be like.

I have gone from an very active 39 yr old, to being reliant on others and an assortment of equipment, using a motorized chair, operating my truck with a hand control, for 8 months being ventilated and being fed only soft food.......even water choked me.(luckily since my new found friend Sinemet, I have seen improvements in many of my symptoms)

But the real gain from this is the inspiration we as the "stereo-typical" handicapped in society can have is.......on others around us!

The expression from a parent as one leans from their wheechair( with difficulty) to pick up their childs dropped toy.
When asked at the store by the clerk "how are you?" and your reply is "great, I am having an awesome day"............whilst the last customer in front of you had been complaining about a cold, its to hot or the price of fish or something?
The jaw dropped look from the neighbors when they have never seen you walk before..........as you move like you have had 20 whiskys across the front lawn..........get in your wheelchair and start cutting the grass from a seated position.(although I confess it didn't last very long, before fatigue set in and stiffness)And then tears rolldown their cheeks.

Our disability is always our ABILITY.

The ability to alter others.........hopefully for the better............maybe for just that one moment.?..........but it alters them!

It alters us too!
Our expectations on life change, things that once seemed a problem, challenging or important,now fade into insignificance. New perceptions on the way we want to live our lives come to the forefront. Never before encountered challenges become apparent and very much a challenge.

Whatever you take away from my post, please be assured PD I guarantee has made you a better person, even ,the,shall we call grumpy types among us have new abilitys , which often far out way our own personal disability!

I have enjoyed reading the posts on this topic !
It is an ability in itself to express our feelings publicly and to pass on our strength to others in whatever form...........be it this time.... words!

I try to do something positive everyday that I would have not done before I got sick............to be honest In reflection I did not care for others back then, and in someways am glad for my new found traits.

I wish you all luck in your own personal fight!

y'all know i don;'t have pd, but my dad does.

one thing he has mentioned over and over is how people treat him has effected him.

my dad has "the mask". he went from the funniest, smileist man,( and very handsome) to totally blank. :(

he misses the joy in peoples faces that he got by just giving them a big smile. just giving a smile and getting one back can lift your spirits. he says he now doesn't feel the joy inside. like the blankness has spread inside. :(

Dear Ann
 

I have been "wandering " around this forum in invisible,elusive mode since my somewhat untimely "outburst." Not that I am lurking in any sinister way,but wanted to keep up with you all without making my presence too obvious.However,your post really spoke to me and I am compelled to respond.
The replies you have had too,are moving,spoken with empathy,understanding and honesty.They surely are an encouragement,a support,and more importantly a great comfort...such is the pricelessness of this forum.

I can relate to everythng you say,even to the point of truly understanding the seriousness behind the "joke" with your pilot friend. And yes, we trundle along quite merrily for much of the time,coping with this,dealing with that,expending our energies on new strategies to manage this problem,that problem.Having pd is indeed a full time occupation.

And while we are busy doing this and that Ann ,it can almost "protect" us to some degree ,of the harsh cold facts that go with this disease.It is only when something stops us in our tracks,that the cloak of realisation,fear,futility,sadness,loss of ourselves, is slipped over our shoulders and makes us shudder.And self introspection naturally follows.

It is almost as if we momentarily lose our "place" in life.To me it is as though we are drifting aimlessly for a while,searching for some point of familiarity,something that connects us to our past lives.And of course we can`t do that easily.We have changed...our lives have changed...our routines and methods have changed.And it is a scary,lonely place to be.

But you know what,Ann. I believe we live by Seasons. I have said this to others when they have found themselves in a similar place.And the hopeful thing about "Seasons" is their ability to ebb and flow bringing with them different colours,textures,moods. And for certain,you will pass through this season into another, and things will be brighter.Something will renew and rekindle your hope,your fight,your courage.Someone will need your wisdom,your understanding, Something will reignite your sparkle and you will see yourself in a different light again.

I so feel for you at this moment in time.And I am praying that "this " season will not be a lengthy one...but that soon you will feel the energy and spirit that is You..return. For whilst Pd can wreak havoc on our body, it cannot break our Spirit.

:hug:

Thank you
 

Steff

That is a quite amazingly philosophical and thoughtful reply for a lady who has had to suffer PD for over 10 years.
Please do not go away for long again.

This Forum benefits enormously from your Posts.

Thank you

Chris

to be continued
 

In the Course of a Day

As one day ends the next is beginning
The tick of a clock, a buzz, a tone, a beep or a song
signals the earth inside my head to begin its spinning.
Should I go this way, that way or another?
How many ways to the next moment are there?
Whether I go upward or downward, inward or outward, I can neither remain here nor go backward.
There is but one choice and that is to forward go.
Around this corner, through that door, careful don't stub that toe.
Continuing through my house alone,
I'm interrupted by the ringing phone.
Uninterested in what the salesman had to say,
I listened to his persuasion spiel anyway.
Now, where was I before I stopped to talk...
through the house on my morning walk.
The decision is mine, which way to go next.
I choose clarity, for who wants to begin the day perplexed?

...to be continued
michael b.

And you too Michael.....
 

Ann T,

Am I actually the one, who is the first to say, "Welcome back, Stranger!??".. lol

That's the Ann T I used to know....great thread.

paula

AnnT2
 

Thank you, Ann for your kind message to me. With your attitude, I will not count you out at all. Of course, it's easy for me to say, I am on the outside trying to look in. Life is difficut enough and then there are the road blocks and potholes of this disease that can surely try one's spirit. Sometimes the effort to muddle through is an overwhelming challenge with sometimes underwhelming results. But if you and any of us heed what Steff has said, good things will come round again. Try that ginseng and keep on keepin' on.

My very best wishes for you,
Maureen

Ann
 

Just to say I hope things look a little brighter today.Shame we PD folk don`t live closer,then we could maybe do something practical for each other when we take a dive...although I am sure you have wonderful family and friends.Sometimes it needs another PD person to understand totally how our "laughter" level and "shiny smile" can suddenly dissipate into sadness and weariness. Could it be that you are tired Ann?
At the minute I have pleurisy and it is doubly hard to get a grip.My face is so darned blotchy from the meds that I swear you could play "join the dots" on it although I ain`t certain what picture would transpire.:eek:

The sun is shining here in the UK after the recent floods and I have just waved goodbye to half my furniture but hey....am going to fill my lounge with sand,grab a couple of deck chairs,a sun lamp and hey ho...put on my shades and make out like I`m Victoria Beckham in LA. LOLOL
Only thing is I don`t have the mesh swimsuit or the body for it so I am going to fashion a fetching number from the hopsack my potatoes came in and take on the "cave girl " look. :confused: THAT should give my unsuspecting husband a right laugh when he arrives home. ha ha ha

A pint of beer to complete the glamour shot and I`m away.

Hold on in there. Sending you heaps of hugs.
Steff
x

You are Over the TOP!
 

Steffi, how can you manage to be so funny whilst enduring pleurisy? You are amazing. I'm picturing you right now with your sun lamp, incredibly chic suit with your ice cold beer - - living large in LA..Victoria could take a lesson from you. Have an incredible day!!
LOL, Maureen

Steffi, welcome back! :hug: You were missed..I don't come on here too frequently, but love your posts, among others.
Ann, your title especially touched me, especially after a strange conversation with my niece and husband yesterday; my niece, who was visiting from Phoenix, asked me how I was doing. We'd been takling abou something I cannot remember, not parkinsons. So I asked if she was referring to our conversation subject, she said, no-your illness. She wanted to know how was I doing, what were my current symptoms.
I don't complain; am oneof those people who just push on, and when needed, fall onto the nearest surface to rest. My husband does not like to talk about my illness at all, so when Chels asked me, I just told her some of my current & most bothersome symptoms, trying to down play somewhat. Her eyes got really wide and sad and she asked how I managed them. Meds, of course. My husband-not meanly-said It sounds like you're almost dead to which I responded, Nope, I'm still on this side of the dirt (and my face isn't in it), it's a good day! It made me stop and think we'd better talk, again.

Hello EN68
 

Thank you for your kind words.And your response to your husband`s quip was brilliantly witty and good humoured.I have to say though,I don`t remain a happy bunny all of the time.I sure have my moments and I so understand Ann`s feelings. PD is like being on a roller coaster ride...and the swings....and the big wheel...in fact the whole bloody faiirground!!!!
One day coping so very well,responding with a smle to even the most insensiitive of remarks,another day..well....you could take out the nation but somehow get over it. It`s a tough one...but each day at a time I say. And whilst we can still smile then it`s best not to waste the chance of using it.And when those muscles decide to go south...[and my heart goes out to those who are at this stage of the illness] ...I hope I can find a way to still convey some warmth,humour and a glimmer of wickedness.
Stay upbeat...and you are allowed the odd day for a Pity Party....a Luxury Vent....or just a plain good old fashioned MOAN...;)

X

it's very hard even for those who love us, to understand what we feel. personally, I don't want sympathy. When most people ask me how I am doing, I simply reply, "good" or "I'm hanging in there". I want to live as normal a life as possible. Family members are understanding, kids especially, but the only other people who truely understand are other PWP's.
Don't get down on people who do not understsnd though. Most people care and want to help if you give them tacit permission. they just do not want to intrude.

there is a German saying that all of us should take to heart, "what doesn't kill me makes me stronger...."
this is really true.

I'm with you Empty Nest, stoically keeping going, trudging forward.... sometimes I can skip though!! Thats the way I get thru my days.

Charlie DX'ed in 1990

Thank you for your replies.

Being stoic about this disease has its good points, but in the end, it usually is just an outward appearance presented while you suffer inwardly. However, it does save you from a lot of questions that have no honest answers that will make the person posing the question feel comforted. This forum provides us with candid interactions. In nice words, no sugar-coating from me or you.

Am I tired? Yes, of course, both from lack of sleep and weariness from PD. I keep my hopes up for a treatment which will either cure us or make us feel a whole lot better.

To EmptyNest - I once had two PD friends visiting. My husband asked them questions about PD while I was present - questions he had never asked me! I sometimes think that he believes I have some alternate PD while others have the real thing. No, he doesn't like to talk about it with me, so I try to limit my complaints. Despite that, he is so helpful to me.

Paula - Thank you for the kind welcome. It is nice to me missed.


Ann

I just wanted to say that this is such a great thread. I've become brokenhearted reading some of the replies, and yet become inspired at the same time at the courage displayed. Thanks to all... :You-Rock:

Thanks Ann
 

I couldn't agree more. I thought about asking that this thread be put in the Sticky section until it was pointed out to me that very few, if any, recently diagnosed parkies responded. Perhaps it is a little too intense for some.

I agree with many who responded that I feel much of the time that I am a better person now than before pd. I am now much more easy going and accept things that I have no control over. I often thank God that He has given me some hard times so I can be thankful for the good times.

My girl friend told me a doctor told her once that her health problems were merely an extension of growing old. How many of our symptoms would we have anyway, because of our age, but are compounded because of the pd? It is so easy to blame all of our ailments on the pd. If we look at it that way then maybe the symptoms can be a little easier to accept.

The only symptom that has changed my everyday behavior to a large degree is the mobility problem. I am slow getting around, quick to get tired and have back pain, fall easily, and walk like a drunken sailor most of the time. All the other little problems, poor handwriting, tremors and slurred speech during off times, pain and stiffness in my arms I can accept. I am planning a Mexican cruise in December and hope I can survive the long hours on my feet.

Thanks again Ann for starting this thread.

Well....
 

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?:D
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 point of view
 

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.

Before I really KNEW,
 

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.

PD is Bleak! CS is right!
 

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..:rolleyes: :D ..Figure that one out..:confused: ..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

Yes....
 

I agree. CS isright.PD sure is bleak.But so is farting in public:eek: 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

Six years into this battle
 

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