A game of inches

As one of the site's admins, I feel compelled to interject every once in a while. I have had PD now for 5 years. Those 5 years have been both the worst and the best five years of my life.

Some of you willl have not read beyond the word 'worst' in that last sentence but i wanted you to see the word 'best'.

Why?

Because I chose to do something. I chose not to be defeated. I chose to fight back. I chose to be an advocate. I chose to help myself and when I had done that, to help others.

When I was diagnosed, I was the only person in the world with PD. But as time passed I found I wasn't. I lived, I learned, I taught.

I decided I was going to make a difference. I was going to give my life back its meaning. Little by little. Inch by inch.

I chose to crawl inch by inch from the darkness back into the light.

That was my choice. And the choice of others. We founded PARKINSON'S MOVEMENT because we wanted to help.

But you have to choose the light or the dark. I can't do it for you. This was my choice.

Now, what are you going to choose?

12 Replies

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  • Wise words and I admire your courage - thank you.

  • i agree everything has to be a personal decision on whether the glass is half full or half empty. having pd is the same . somedays for me , alot of days i am positive and have a half full glass. i tell myself on a daily basis that i will stay the steps ahead that i need to not be captured by pd. but i think everyone who has ever been dx with pd or any life changing illness. no matter how hard u work to be there and help others we have to realize that we are sometimes truly only human and must allow our self to fall / fail for a day or afternoon. to give us a chance to be real to ourselves and to react on what is happening to our world and lives that sometimes are more difficult than the day before . we need to do this so the next day or even hour we can put the smile back and help someone new like we were offered the help when we first came to this site . Keep up all the positive thoughts and always remain true to your self

    bc/ruth

  • When first diagnosed my glass was definitely half full. Since then it has sprung a leak. After all, I still get around after 11 years. A game of inches it may be, but they certainly reach feet.

  • Maybe this will help:

    nerdapproved.com/approved-p...

    "Half Full Glass Trains You Into Being an Optimist"

  • Appreciate the encouragement.

  • Thanks for posting. My husband was diagnosed almost 4 years ago. The first year has been the hardest as it hit us like a death sentence. After the first year we have chosen to treat each year as a blessing. There are still so many questions and unknowns but we are willing to deal with each as it hits us.

  • not feeling very positive at the moment,damn pd is dragging me down and i,m desperate for some relief,especially from tremor its so exhausting trying to cope everyday knowing its only going to get worse,it can be soul destroying,sorry for the negativity but its how i,m feeling at present

  • Often, tremor is caused by taking too much Levadopa. You also might want to consult with your neurologist concerning the medication: Trihexaphenadyl. It has worked very well for two of my friends and myself. It is a medication from the 1960's and should not be dismissed, as it works well.

  • I was 40 when I was Diagnosed with PD...and I had PD for 12 years before my Dad was diagnosed...I watched PD push my father into an "anti social" state of depression where he withdrew from nearly all friends and family. Of course without a support group he deteriorated quickly and died in only 3 yrs at 83. A support group is so hard to develop and maintain and yet is the one thing most critical to our survival with PD. My point is the only way to attract a group to stay around you and provide support is to remain upbeat, positive and humorful. Maybe there is another way but since it is now 4am and I remain sleepless I'm clearly not going to come up with a better and more lucid plan tonight/today.

  • thanks for your advice max,unfortunately i,v took trihex for the past 2 years and the neuro has just increased the dose but they arent as yet having any effect,he also warned me i have to be aware that they can cause memory loss and urine retention especially on a higher dose.

  • I was an Educational/Motivational Speaker. I began stammering alot and my tongue would feel like it was glued to the roof of my mouth. I can't stand for more that a couple of minutes without falling down....can't walk more than 10 feet and that's with my walker without pain and feeling like my lower back and hips lock in place. Then I was dx with Parkinson's in July of this year. I chose to look for a good support group on line and have found it here. I chose to find a support group I could go to where I live and found a very good one which I enjoy very much. I'm in a power chair but I can still learn about PD and am at the place of acceptance that this is part of my life but not my total life. I would like to be a Motivational/Educational speaker for Parkinson's and so with learning what I can, with my own experiences, that day may happen soon. Therese

  • Fellow PWP;

    Recognizing that we are not alone, we are all in this together, provides strength and encouragement when we need it. I love reading about how the others are choosing to play the hand that they have been dealt. Sure, there are days when all of us feel not quite up to the challenge. But by focusing on today, which is all we have, we can use this disease to help others, and in the process help ourselves.

    Jon Stamford has become a friend because we both have PD. I am the richer for his friendship and his encouragement (especially his blog" slice of life"). There is worldwide family of people with Parkinson's. Everyone has a story that, if shared, has the potential to lift someone else up.

    I don't believe in a "positive thinking" approach that ignores/denies the real challenges that can, as stated above, be "soul destroying". I believe that it is my job, my opportunity, to choose to fight every day, fully acknowledging the strength of my "enemy". In doing so, it is my goal, my passion, to encourage others (and in the process I find encouragement).

    Thank you Parkinson's Movement for the opportunity to connect with my "family".

    Bob

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