Disregard the man behind the curtain

I was watching an interview with Andy Barrie that was recently posted on Facebook. Andy has been diagnosed with Parkinson’s disease for about 10 years.

I believe this interview is a must see for PD patients, their care partners and friends. Andy is very articulate, factual and professional. The interview is in three segments and discusses a full range of topics. He discusses how he dealt with the “chronic, progressive” diagnosis (I might have added “neurodegenerative”). He also talks about daily coping and med/food adjustment to adjust “performance requirements” (sound familiar?). The last segment doesn’t include Andy, but it talks about medication and exercise.

One of the things Andy talked about was his efforts to take his meds on time. He didn’t change the med schedule to enhance performance; rather he changes meals so the meals would not interfere with the medication.

I am a big proponent of maintaining med schedule as the members of our support group will attest to. I don’t change when I have meds too take, rather I change the appointment. If I have an appointment that can’t be changed, I go with the “beast” in tow. As I have said before, sometimes when I am playing golf and I start to feel “off” I play better. Again, I speculate it becomes a matter of focus. Regardless, it is the “full Monty.”

Another topic Andy discussed was being conscious of his “performance” around friend’s and others. Does that sound familiar? When I was first diagnosed I made light of symptoms. “Shaken not stirred” was an overused party comment.

When speaking on optimism, I recount the story of knocking a plate of French fries over on the table in a fancy restaurant. As everyone turned to see what was happening, I was coming up with a handful of fries and my lunch partner said loudly “nice catch.” So what’s the big deal here? It is staying out there and not becoming a hermit. Use it or lose it. Yes it applies to your mind and social interaction. Think about it. If Michael J Fox had run away and hidden his disease from the public, where would we all be today?

Those who know me know that I am pretty optimistic (that may be an understatement). Sometimes people ask me how I can be so optimistic with a “chronic, progressive neurodegenerative disease,” and my answer is always the same.

“That is the way I am.”

Well that is not true. That is the way I choose to be. So I go out there every day (good or bad) and show the world I am okay. The difference between good and bad is the difference between fantastic and terrific.

I am very lucky that after seven years, with the help of meds that work and exercise, there many times (more often than not) that people are surprised when they find out I have Parkinson’s. Sounds like ego showing itself? Maybe, but I get a rush when it happens. because I know I have the beast in its cage.

How did we get to hear from a simple “Watch this interview?” Well, it made me think, and I wanted to share a short video that may make you think about how you are travelling on this journey, but more importantly it may give insight to your loved ones of what is going on in you world.



About bobharmon49

Parkinson’s Cure Research Funding, Inc. (“PCRF”) was founded in November, 2010 as a non-profit corporation dedicated to raising money for Parkinson’s disease research and patient support. The corporation’s main fundraising event is an annual golf tournament held in April at the Lake Ashton community in Winter Haven and Lake Wales, Florida. Proceeds from the event have been donated to the Michael J Fox Foundation. Prior to forming PCRF the first golf tournament was held in April 2009 and we raised $12,000. The second tournament in April 2010 raised $27,000. Our next tournament will be held on April 7, 2012. At each of the first two golf outings, 215 players filled the two 18 hole golf courses at Lake Ashton. PCRF was founded by Bob and Cecily Harmon. Bob was diagnosed with Parkinson’s in 2006 and is still very active playing golf and working to help find a cure for PD through fund-raising. He has recently been named to the Southwest Florida Regional Council of the Michael J Fox Foundation. Their mission is to drive ideas about local engagement opportunities to increase Parkinson’s Disease awareness, enhance education efforts and connect with untapped resources to develop the overall expansion of the Fox Foundation in Florida. The Harmon’s facilitate the Lake Ashton Parkinson’s Outreach Group which supports local Parkinson’s patients and their care partners. The group meets on the first Friday of every month at 10am at Lake Ashton and is open to the Parkinson’s community in the general public.

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