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Parkinson’s my life

I was 45 when i was finally given a diagnosis i knew i wasn’t 100% but couldn’t put my finger on it. looking back now the first thing i noticed was severe back pain and my left arm stopped swinging i started cleaning my teeth right handed instead of left í was self employed “shirley’s coffee shop” When mr grunewald told me i was in early stages firstly i felt relieved because now i knew what was wrong next came the ‘why me’.

i remember as a child watching an old lady whose head was bobbing about like a chicken. she got on the bus i thought to myself i can’t live like that. i am now 58 singing recording discs raising money for Parkinson’s. i also have a second hand stall on a sunday as long as have motivation in some ways Parkinson’s has given me the opportunity and confidence to do the things i really wanted and stop worrying about the trivial things in life.

my priorities have changed. live everyday as if its your last. in the early years it nearly cost me my relationship as my husband didn’t understand but unbelievably he was unfortunate to be diagnosed with Parkinson’s himself 18 months ago. now i have the dilemma of deciding to have the dbs surgery or not on the 11th of dec or not. i’m so confused.

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Comments

  • Dan Glass moderator
    2 months ago

    I hear you on your frustration, confusion, and changed priorities. That said, I’m glad life gives you outlets, as it has, to stay as active as possible. PD isn’t easy, nor are decisions like DBS, so talk to your doctors, husband, and loved ones to get their support. Whatever way you choose to go, I wish you well in life.

  • jlvargas
    2 months ago

    It’s hard enough for one person to go through this, can’t imagine both. I am so sorry. My wife healthy. TG. Heard a TED talk where the speaker said that sleep deficit is linked to PD, because that’s the time when the brain repairs itself. I have had a hard time sleeping for years. Also, the MJF Foundation announced that they found a molecule that may arrest the symptoms, but it’s owned by big Pharma. They have to come up with a designer version to get passed the patents. It maybe be a couple of years. As for me, I can’t tell that the medicine works. There is no real off time any more except when I sleep. Not eating on time, getting upset or scared amplifies the tremors. I am retiring soon, and plan to get on a better workout schedule and eating habits. There are times when I want to roll up in a ball. OH, I use to have happy feet, could do anything. Gone. But I went out with friends and a song brought it back for the one song. It was so good to feel that again. And then it stopped. So strange and so cruel. Hope you two can find the people you met a long time ago. (each other) Life is short.

  • jlvargas
    2 months ago

    Mm edit not available, so I reposted. Soory.

  • jlvargas
    2 months ago

    It’s hard enough for one person to good through this, can’t imagine both. I am so sorry. I have, my wife doesn’t. She is healthy. TG. Hear a TED talk where the speaker said that sleep deficit is linked to PD, because that’s the time when the brain repairs itself. I have had a hard time sleeping for years. Also, the MJF Foundation announced that they found a molecule that may arrest the symptoms, but it’s owned by big Pharma. They have to come up with a designer version to get passed the patients. It maybe be a couple of years. As for me, I can’t tell that the medicine works. They no real off time any more except with I sleep. Not eating on time, getting upset or scared amplifies the tremors. I am retiring soon, and plan to get on a better workout schedule and eating habits. there are times when I want to roll up in a ball. OH, I use to have happy feet, could do anything. Gone. But I went out with friends and a song brought it back for one song. It was so good to feel that again. And then it stopped. So strange and so cruel. Hope you two can find the people you met a long time ago. (each other) Life is short.

  • murcadden
    2 months ago

    Goodness! Shirleyanne, wish I could help you make the decision re the dbs surgery. I hear it works very well for some folks. It’s a very individual decision, and, if you decide to have it, i hope it works for you.

    Sincerely,
    Mary K.

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