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Parkinson’s Disease…What’s That?

My name is Tommy and I first learned of PD watching Muhammed Ali light the Olympic Torch at the Atlanta Olympics.

I am a husband, father to six children, grandfather to five. Unfortunately 4 of my 5 grandchildren live about 2000 miles away. I am also a Vietnam veteran (US brownwater navy) and proud to have served my country.

In the mid 1990’s my youngest daughter noticed I sometimes had a tremor. I blamed on over work and always being tired. And having abused my body when I was younger cowboying, rodeoing and just being young and stupid.

In 2004 I went for a consultation with a neurologist to get a second opinion about a possible back surgery. My bride was with me. The neurologist was performing a nerve induction test on me when I literally jumped 6 inches laterally straight up. My left arm and hand started scratching behind my ear. My bride started laughing and the neurologist asked her if she thought it was funny. She said “yes” and then he asked if she would like to see it again and she said “yes”. So he touched me with the probe and it happened again. Bride said I looked like a fat old dog scratching fleas.

After I got dressed the neurologist said I should definitely have the back surgery. Then I said “the surgeon wants me to ask you why I sometimes shake”. He ran me through the usual battery of touch your finger tips, tested my balance had me touch my nose and touch his finger tips and watched me walk. He said “I think you have Parkinson’s Disease.” And I said “What’s that?” He explained about the loss of dopamine in my brain and why I lost the dopamine. Then he gave me a sample of Sinemet told me to go home and come back in three days. So I went home and returned 3 days later and asked how I was. Told him I had not felt this good in years. That was my second time to hear of Parkinson Disease. That was October of 2004 and the same neurologist is still treating me today.

I was a buyer for a major building materials retailer in the southwest when I was diagnosed. Two years later I was given the option of being fired or leaving on disability. Not much option when you are 57 years old. So I took disability.

My neuro had been after me to go to a support group since my diagnosis. But I refused because the closest support group was 50 miles away. Now that I was retired he said I should go. I still refused. Literally on Jul 1, 2007 I woke up and told my bride I would just start my own blankety blank support group, find someone to run it, and just fade away. Well that was 10 years ago and my God had different plans for me. At our first support group meeting there were six attendees, including bride and myself. Today we are averaging 40 to 45 attendees per meeting. Since that support group started we have gone from one meeting a month to two meetings a month and started two other support groups and are getting ready to start two more. Every year we hold a 5K Walk/Run in April in conjunction with a PD Awareness Picnic. This year we had 189 participants in our walk/run and 178 attendees at our picnic. Also every October we sponsor a PD Awareness symposium. October 2016 we had 173 attendees at our symposium. Both our picnic and our symposium are free to pwp’s, their spouses and families and their caregivers.

I had DBS surgery on May 6, 2013 and without a doubt it is the best decision I have made regarding my healthcare. A CURE? No not by a longshot. But it did stop my constant tremors and eliminated my festination and freezing for almost 4 years. This year bride noticed my arm swing has gone, again. And my shuffling along with my freezing has returned, again. So we (my neuro and I ) are “playing” with my DBS using more and more complex settings. And there is good old Sinemet. I am back up to 3 tablets of 25/100 4 to 5 times a day. It could be worse. I was taking 2 tablets 25/100 every 1-1/2 hours before DBS.

What I have learned since I was diagnosed with PD. There is always, always someone worse off than me. And there is always, always, something to be grateful for. Sometimes it is just being able to breathe or wake up in the morning. But there is always something to be grateful for. And the last thing I have learned is the most wonderful, beautiful people in the world are those with PD. I thank my God every day for giving me the opportunity to work with and meet these beautiful people.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • angela.robb moderator
    2 years ago

    Tommy – Thank you for sharing your story with our community! Kudos to you for starting a support group!! I know it takes a lot of time, effort and persistence to start and keep a group going. I’m “virtually” patting you on the back 🙂 Your story shows all of us that getting involved in our own health and in our community can have huge benefits!

    All my best to you and your family!
    Angela
    –PD care partner and ParkinsonsDisease.net community advocate/contributor

  • Mistchaser
    2 years ago

    Tommy, our stories are somewhat similar. We both have had DBS and even though it’s not supposed to help with “gait” issues, it took care of all freezing and festination for nearly 6 years. As it is returning to me, it’s like “Ah. Oh yes, I remember this now.” I recently decided to step down from co-running a support group for DBS surgery in the Denver area. Although it was a disappointment that others did not step forward to run what we thought was a much-needed support group, I came to realize that the medical community as a whole is providing much more information about DBS surgery. This change means I’m getting to spend time with my 16 month old grandson! I’m also getting more exercise which is sorely needed (no pun intended ). Maybe it was time to move on to other ways of helping in the Parkinson’s community. You’re so right that the community of people with Parkinson’s has the greatest people in it. Although I would never have chosen to have PD, I wouldn’t have missed meeting the courageous, motivated, incredible people that I have through our common enemy, PD!

  • daddytom author
    2 years ago

    Mistchaser,
    Thank you for your kind words. I am in the process of stepping down from the role of support group leader and as of CEO of our Board of Directors for our non-profit(the Lone Star Parkinson Society inc). It was easier finding a group leader than finding someone who is willing to volunteer as a non paid CEO. But there are a few prospects in mind, (would you like a high demand no pay job) LOL. But our board really needs a person with good business sense to take the job. And my dutie need to be reassessed and given to other board members. There is no doubt that will happen.
    Keep up the good fight.
    Tommy

  • Chris H. moderator
    2 years ago

    Hi Tommy,

    Thank you for sharing your journey with us! I’m so happy to hear that the DBS and medication are helping manage your symptoms. It’s really awesome to see how a little bit of reluctance about support groups turned into significant PD awareness and activity events! Your positivity despite living with PD is inspiring! Wishing you the best with your awareness efforts. We’re glad to have you as part of the community!

    Take care,
    Chris, ParkinsonsDisease.net Team Member

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