Stories

Gary

Each Day is a Gift

Diagnosed at 30

I was diagnosed less than a year ago at the ripe old age of 30. I fully anticipated that my 30s would be the best years of my life. I had climbed my first mountain, rafted some of the best rapids on the East Coast, and hiked 50 miles in 3 days along a trail from the Ohio River to the Mississippi. I had met a woman who I could imagine spending the rest of my life with, and had a seven year old son who was about as good as any child can be.

Unlike a lot of people's stories here, I can't pinpoint when my symptoms first started. My handwriting has been somewhat cramped for years, my hands had shaken for a long time, and I spent a lot of time alone. So when I felt bad for some unknown reason, there was no one around to see how bad it was. I can, however, pinpoint when the symptoms got bad enough to seek help. I was going to the grocery store and I started to hum to myself. As I walked through the grocery store, I became conscious of the fact that I was moving very slowly. It started to scare me, and over the course of the next couple of months I discovered that my tremor--something I'd lived with for a long time--had gotten worse, and that my right arm had lost its swing. Also unlike a lot of people, I had no major battles with doctors and neurologists. I could see that my primary care physician was skeptical, but his nurse practitioner had recommended me to a local neurologist.

Already I had begun to suspect that it was Parkinson's disease. I knew almost nothing about the disease, but my father had been diagnosed eight years prior, and I decided to talk to him about it. He said at that point, he'd seen symptoms in me for at least a few years, but didn't want to say anything (for fear of projecting). He said that my speech patterns were among the first things he noticed, that I had a tendency to lose words in mid-sentence, and speak slowly at times. He also told me about the battles he had with local neurologists. When I spoke to my partner, she was instantly supportive and set to work assisting me in finding the best way to deal with what came next. She called a local Parkinson's support line, and was told by the person working that we should ask for a referral to Vanderbilt, because there were no good movement disorder specialists in our area. My dad's neurologist was at Vanderbilt and he worked me in within two months of calling for an appointment. My dad, my step-mom, my partner, and I drove the 3 hours to Nashville that day. That was the day I was diagnosed.

Gary 2

Since, I have been in a battle with symptoms: insomnia, bradykinesia, tremor, stiffness, dead shoulders. Some of these had occurred infrequently before, and some were new to me. I have had some minor cognitive issues, and my speech and movement often give away how well I'm feeling when I go to work. I'd always been a hard worker, and telling my boss that I had Parkinson's was a hard thing to do. I've since sought accommodations to better enable me to do my job, and I'm now on Sinemet--after battling with several other medications along the way--which largely keeps the symptoms under control.

I just got back from a week-long vacation in Cancun, Mexico with my partner Sarah. It was one of the best vacations of my life. Despite my diagnosis, and despite the daily problems we all face with this disease, I can say that maybe my 30s will be the best years of my life, because now I know that time is of the essence, and each day is a gift.

12 Comments

One of the best sons a person could have . I struggle how to help him.

Karen badger, Jul 28, 2012

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I love you. Each day I'm with you is a gift to me, too.

Sarah, Jul 30, 2012

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Gary, Thank you so very much for the reminder, in such a personal and resonant way, of the last phrase of your story. Thanks also for the description of what you have gone and go through. I hope so much for you, in all ways possible and impossible.

Jene' Jackson, Jul 30, 2012

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Gary, thank you for sharing your story with us. Like you I have trouble with speech its quieter than it use to be and I stutter quite a bit. I'm not sure if you have tried physical and speech therapy but it is so helpful there are actually programs geared towards individuals with Parkinson's but they are super intense they last an hour each up to four days a week. I am so glad your partner is so supportive like you I started dating my boyfriend while I was going through the diagnosis process. Keep fighting.

Sam B., Aug 1, 2012

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Hi Gary (and Sarah),

I am just four months into a relationship with a 31 year old woman who was diagnosed about three years ago. So much of our time together is wonderful and there are also challenging times when the symptoms are strong. I feel like I don't know quite how to provide care best and she sometimes is convinced that I'll eventually leave ("everyone always leaves") because of the PD. Do you have any advice for me as someone in a new relationship impacted by PD?

Also, do you know of any other good websites or maybe FaceBook groups that are good for education or caregiver support groups?

Thanks,
Tyler
Toledo, OH

Tyler, Nov 12, 2012

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Hi Tyler,

Did you know we have a Young Onset PD conference coming up this weekend in Cincinnati, OH? This may be a good opportunity for you to meet other people who are in a similar situation. To find out more information about the conference, visit http://www.youngparkinsons.org/how-we-can-help/young-onset-events/midwest-young-onset-parkinson-conference.

Also, be sure to visit the "Maintaining Your Relationships" section on our website for additional information: http://www.youngparkinsons.org/what-you-should-know/maintaining-your-relationships/your-partnerspouse

APDA National Young Onset Center, Nov 12, 2012

Hi Tyler, this is Sarah (Gary's partner) and I'd be very interested in talking to you about being in a relationship with someone with YOPD. If you come back here and see this, please feel free to give me an email! Take out the spaces in this address and add the symbols instead of the words in parenthesis. And maybe now I'll get a bunch of spam...oh well! Anyone else who wants to talk via email, chat, phone, let me know! sarahstevens(dot)ses(at)gmail(dot)com

Sarah, Dec 6, 2012

Well written Gary. Thank you for your honesty and strength. You and Sarah make an amazing team.

Theresa, Dec 7, 2012

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Hi Sarah,
I'm in a similar boat as Tyler, and I'm sure I'm not alone. It's hard to find information specifically for people like us.

Are you getting inundated with emails yet? If not, would you mind receiving another?

Corey, Dec 10, 2012

Anyone and everyone should please feel free to email me! Not sure if I can be helpful or not, but I would be very glad to talk to anyone who wants to talk! So, Corey, please do email!

Sarah, Dec 10, 2012

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Hi you guys,
My husband, Kevin, was diagnosed at 39 (and will soon be 41). We have learned a tremendous amount this last year about dealing with this as a 'young' couple...I'd be glad to share some insight if anyone wants! We are both RNs, and go to Vandy as well (they are great!). It has been a VERY challenging year, but we're looking forward to 2013 with hope that things will be a bit calmer. nursemanna (at) gmail (dot) com

Amanda, Jan 2, 2013

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FINALLY SOMEONE LIKE ME . POSITIVE! WE HAVE PARKINSOONS IT DOESNT HAVE US. I was diagnosed at age 32 now 35 son turns 1 year old at 8:25 A.M. tomorrow 11/21/13.

Rock on Man!

facebook me : Jason StClair Virginia Beach VA

Jason STCLAIR, Nov 20, 2013

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