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

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

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.

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.

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

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.