How we live.
 

I wrote this for 'patients like me', and I want to say bravo to all of you here as well:

PD is a cruel assailant that seeks out and destroys, one by one, the abilities that afforded us our personal pride and self image as competent, dignified adults.

We struggle to walk properly so as not to appear drunk - forget about the elegant walk we once posessed, it was taken away. We struggle to hide our tremor because it makes people stare, and because it makes us feel feeble and pathetic - forget about elegant and expressive hands, the control of that kind of movement was taken away. We sit out the dances at weddings and fetes, or we do our best to dance without looking too ungainly - forget about being a good dancer, that ability was taken away. We struggle to participate in conversations without stumbling over words - forget about eloquence, it was taken away. We strive to be heard with our soft little voices - forget about a beautiful voice, it was taken away.

We struggle and struggle to appear normal and well to avoid embarrassment, both our own and that of others. PD has robbed us of so many attributes that are needed in adult life. PD's aim seems to be to humiliate us, to crush our pride, to rob us of dignity. At times people treat us as if we are slow witted and not just slow moving.

Well - I think it is time we start to praise each other for the enormous struggles we know each one of us goes through every day. It is time we realize how proud we should be that we are coping and managing aginst such odds.

Only we can know how hard we have to struggle just to get through each day. Only we can know the sting of regret for what we used to be, the pain of humiliation, the hurt of the stares, the sorrow over the loss of so much of what we considered our 'self'.

So I want to compliment all of you on your fortitude and strength. I think your dignity as human beings is remarkable and admirable. You have every reason to feel pride in every accomplishment, large or small, because for us to perform even the smallest task is a struggle and a victory.

One of our victories is learning to accept and to like ourselves as we are now. Learning not to hate life because we can't be and do what we wish. Learning to accept and to like ourselves as we are, to love and to enjoy this life happily and thankfully, just as it is, lumps and all. We have all lost abilities we used to have, and we are all still dignified adults who deal with those losses. This is not a pity party, no cry for sympathy, it is a great and heartfelt BRAVO to everyone here because in spite of our losses we all do carry on.

Vanity also has to do with this. My vanity survives as well as my humor. A modest amount of vanity and pride are not altogether such deplorable qualities when you are sick and/or old. Without them we become pathetic. Eccentricity is only funny if carried out with elan. I'll be the elegant old lady I'd always planned to become - with PD.

Let us hear it for PD dignity and pride. Next time someone says something thoughtless or cruel, remember your daily victories over so many obstacles, and know that you are the stronger one. Living with PD is a victory in itself. Bravo to all of you


We are fatally ill, though we don't show it. We're not romantically ill like Camille in La Boheme, we're just slowly crumbling. And that is not easy at all to handle. Bravo to all of you once again, brave friends.

birte

I know Carolyn and probably others too have read it already. But here it is anyway.

Exactly!
 

That pretty much says it all!

Ann

Thank You Birte!
 

Your post is a blessing for ALL of us, heartfelt, to the point, unwaveringly positive. I will use it to remember to apply the principles of its message every day from now on. This place is such a good place to be for us PWP because of people like you. Sometimes we get depresseed over what we have lost, but your message comes forth to tell us that, no, don't be depressed, accept everything that comes at you with dignity, that the sorrows will heal and that it is OUR responsibility to make it so.
I just poured a beer, raise up my glass and say SKALL, or SCOLL or whatever, you know what i mean.
THANK YOU for the words that we all need to carry on, no matter how bad things seem.:)cs

Thank you,
 

and skål to you too cs, and to you too, Ann.
Skål and skaal - and may we all live and prosper though we spill our beer and maybe slurp a bit at times - skål friends.

birte

Thank You....
 

Birtie for your remarkable heartfelt thoughts on the daily challenges that pd presents for all of us in one form or another

'Its just another tricky day" - Roger Daltry..:D

I agree with you Birte
 

although the first part of your post is alien to me. If someone stares at me, I stare back. IF they continue, I stick my tongue out at them. Embarrassed? NOT ME!! TO heck with anyone who thinks they can embarrass me! I'll SHOW them embarrassment.

As for lamenting things we have lost, to me thats a waste of time. I prefer to dwell on the things I have left!

PD, as life, is what you make it!! We all get in the pity pool ocassionally. The trick is to make it a quick dip!

CHarlie

Thank you, Birte
 

Your wise and understanding post really touched me. You are a shining light along the way on this often dark and scary journey.

I used to make pottery, as you did, and I share that loss with you as well. I never would have thought that I would miss my "work" SO much.

I spoke with an old friend today and she told me I was amazing. I almost cried. Your post made me feel the same way. Thank you, dear sister. :hug:

Ibby

My own struggle -
 

Dearest birte , my sky-blue lady-
After reading your words I do not feel so alone, I writhe my reply and the tears are falling on my hands. Tusen takk, you show my feelings with your words. I will give this to my children, it explains my sometimes strange behavior and not being able to speak in the special situations .

Coming back from my 5 days visit by my brother, his wife, his ex wife, sitting on the train for 8 hours, being in the theater, next day, the big Cathedral church listen to concert where his wife was singing Bach, talking for 6 hours with his ex wife ,who the day before had got the message that the ovary cancer had dispersed, -talking, thinking , answering : ABOUT ME: everything seems all right," you look so young and healthy ". I agreed trying to coop , struggle to say what I meant ,with my voice that became more and more monotonous and weak .

Today I can hardly move , I feel I am on a boat, I feel lucky that I carried through my journey alone, not falling, not loosing anything . The best is , they where so grateful for my visit. I can still mean something to them and I realise, they respect and loves me. I had to come home before I realized it, when I am relaxed ,my thinking is clear and realistic.

Thank you birte ! I send this reply , it´s a messy thing, but you will translate it in your heart.

oh, how special you are
 

Oh Birte,

Your piece is unbelievable. I'm sure I speak for everyone when I say that you not only covered everything, but there were several lines that were applicable to JUST ME. They were (and are) MY demons. (Loss of word recognition is a huge one).

I'm going to cut and paste it on to a word doc, using a cool font, and using some type of way to highlight what is important to ME (different color font, bold, etc.) and then have it laminated. I will give YOU the credit for it, not only because you deserve it, but because it will be perceived so much differently (at least in MY house) if someone ELSE says it. Sad, I know. I will also bring a copy (or two) to my neuro next week.

Mainly, I want you to know that it truly spoke to me and made me both cry and smile at the same time.

You're the best ...

Attitude! Attitude! Attitude!
 

Dear All,

Do you have to be perfect? Do you have to appear as you always have to others? You are still you. Only you can choose to allow others to make you feel small. You can educate these people or you can ignore them. Paranoia is a symptom of PD. You may even be reading the people around you wrong and assigning negative impressions on them that you are feeling about yourself.

Life goes on. People develop freindships on commonly shared interests. If you can no longer perform the shared interest, do you honestly think the person you related to has changed. They have gone on with their lives. You are the one who changed. Not voluntary, for sure, but you can still find ways to make new friends. Walk around your neighborhood. I have met a Russian woman who speaks English poorly. I have the time and interest to get past her accent and understand her. There is a lonely retired man in the home across the street, who needs someone to talk to occasionally. He is painting the interior of his home. There are so many lonely people feeling exactly the same as you do, and don't have Parkinson's.

Lonliness and all the sadness it brings is not partial to Persons with PD. It is shared with retired persons, people who are deaf, People with language barriers. You can have the attitude of how awful your life is, or you can actively search out others who are lonely and try to befriend them.

Charlie, I'm with you. I like your attitude!

Vicky