The Never Ending Story

Well, I was just looking up seeing black spots before your eyes and double vision, thinking (how naive can that be) that some unrelated (dare I say unrelated) issue was at cause - but NO! Once again, another PD symptom. It's like the never ending story - PD's symptoms seem to encompass every known or imagined defect. Whether insomnia, constipation, joint pain, vertigo, dyskensia this or dystonia that, mobility impairment, tremor control, cramping, seizing, speaking, hearing, not smelling, losing weight, gaining weight, restlessness, double vision, swallowing, etc., etc., nothing seems to escape the idiocy of this disease. It's like a big pot of soup on the burner to which more and more ingredients get tossed in. And to make it all the worse, NO ONE BUT YOU, really understands the pain and frustration. You can tell when you look in their eyes, there is a small part of recognition there that alerts you that they are having a hard time BELIEVING you. How can a person have so many complaints - a hypocondriac they're thinking. The sleepless nights, the overuse of enemas to try to stay normal, the fear of falling with every step I take - I don't talk to my friends about it anymore. Because...because... I look so normal (I fight to behave normal) I try to hide these odd little quirks and movements or lack of movements - from their eyes. Over the 9 years I have been diagnosed, I have been accused of taking cocaine (the fidgeting) marijuana (the weak muscle control) alcohol (the falling down/walking unsteadily) and just overall being a complainer. PD is the silent disease. Creeping around inside of you - you never know when it is going to show it's ugly head and make a shout out. Sometimes the meds work, but not always. Sometimes you are up (tapdancing) and sometimes you are down (stuck to a park bench wishing something would trip that trigger to get you moving). A constant battle of wits in order to accomplish today would was so easy yesterday. PD is not for the faint of heart - it takes a strong person to bear the scars of this disease.

17 Replies

  • oh how i agree with this and i have PSP which is worse as there are no meds to help

  • I would like to add DEPRESSION!!! That why I ask myself is it worth LIVING anymore !!!

  • Hope your depression will soon pass. Many of us in this forum appreciate your contributions. Thanks for all the research you do and thanks for sharing with us. Please don't get discouraged.

  • Yes, I forgot (another symptom?) certainly right up there.

  • I truly believe that God does not give us more to bear than he knows we can handle. Each one of you with this disease (I have it too) is stronger than the ordinary person, though you may not believe it. We were given this disease for a reason and I want and need to believe that we are all special and strong. This disease can rob you of your dignity if you,let it!

    DON'T LET IT!!!!!!

  • Amen. I have PD and I am healing myself. GOD gave us the power to heal. I was diagnosed 2001. The difference this year has been fantastic. For me healing involves exercise twice a day, 5 days a week and playing poker. Now I can walk, drive, button clothes, stand up, eat, sleep 4 hours a night, & so much more. I am grateful for my healing.

  • Wo! I am glad for yoiu/ Thanks for sharing.

  • POKER? That's so cool, I stopped my public shuffling, now I only shuffle in private! I'm glad that you have FOUND some RELIEF. It and you are an inspiration to me! Keep up the great work!

  • Amen to that!

  • did you mention apathy? I know the feeling is in there somewhere but cannot access it. Sometimes comes out as humor. We play at laughing and crying in my PD dance classes.

  • I don't really want to complain, but I also have bouts of incontinence, fun....

  • Thinking of you. Don't let the beast win. Sometimes all you can do is put one foot in front of the other and not look too far ahead.

    Love and Laughter,


  • And laugh!!!!! Always laugh!!

  • And laugh again try and get out and about you will feel much better when you retun home Fay

  • All I can Do I Do, Do, Do!

    I try to help me to help you, too

    Stretch, Tai Chi, Qigong and meditate (all day)

    If I was "normal" that would be so great!

    But I carry the Beast and the bastard is heavy.

    I'd love to run him down with a big ole Chevy

    I'd love to be your HERO, and fiddle while The Beast burns out!

    I'd love to wake your heart up and let you love again.

    I'd love to change the Game!


    O L O




    I chew you up and spit you out! Chomp Chomp!!!!

    For Jillann lol

  • Cathi, so well said. You encompassed so much of what I feel on an almost daily basis. I went for a mammogram today, had to fight back tears as I was trying to hold my body in position for x-ray. The tech was very kind, the tremors in my hands were so bad that I could not fill out the paperwork, she filled it out, I then had to try and sign my name at the end of the form.

    I know this is not as bad as it can be yet...that's the sad part. We hear so much about new research but the reality is, these treatments are years away for any of us.

  • I am new to this site and think its fantastic. I was diagnosed in 2009, and have had double vision that's getting progressively worse. I have been to many Ophthalmologist's, one who said it was all "in my head." another said, you just need to do a finger exercise 3 times a day, or there's not a thing wrong... I was an avid reader and can only read sometimes...I play keyboards and at times cannot see the music. One DR prescribes prism glasses...joke, joke.

    None of them said: It could be from the PD....and I also did not think of it either....Thank you for saying so because anything I think that could even remotely be a PD symptom...I REFUSE TO HAVE. lol I have used my mind from the time I was 4yrs old, (I am 74yrs) when my father died, to heal any sort of nuisance in my body or mind. Sometimes, I am so busy I forget to pay attention to me...and I should. Thanks again....

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