Sunday, June 24, 2012

Young Onset: One Disease, Many Life Styles & Choices

After attending the Young Onset Parkinson's Conference a week ago, I decided to try out the local Young Onset Support group.  What both of these meetings made me realize is that those with Young Onset Parkinson's Disease are a very wide ranging group.

The official designation for Young Onset is that symptoms start before you reach the age of 50.  However, that involves a lot of people. My symptoms started at 32.  There were people I met at the conference who were in there 20's when their symptoms started as well as folks who were in their late 40s.  At the support group, even though I was one of the few people who had symptoms for more than 5 years, I was the youngest person there by at least 5 years.  There were people who had symptoms for over 10 years, but nearly everyone was approaching 50 or already over it.

However, age is only one factor in our differences.  These differences include family status, work status, general level of health, medication effectiveness and availability, and attitude.  Also, many of these factors will change as the disease progresses.  For example, I am married with two young children, work full time, am relatively healthy (other than the Parkinsons), respond great to my medications and am generally positive about my future both in finding a cure and my ability to manage this disease.  All these are factors that affect both my life and my disease.  Since I work, I probably have more stress in my life.  However, I usually respond well to stress and so far I have not seen any major effect on my disease progression (as far as I know).  Also, when my meds are on, I can type normally and perform my job well.

Work status seemed to one of the big differences I've noticed between Young Onset people.  It was surprising to listen to how many people had retired, gone on disability or been fired from their positions because of their disease (many of these people were fired before their diagnosis, yet, their symptoms were causing changes in their job performance).  Also, while it seemed most people had kids who were fully grown or nearing college age, there were still a few of us with young kids (under 10) and even a few who were still deciding whether they wanted kids.

Not only do these differences place many of us in different points in our lives, but they make our treatment plans and the way we deal with Parkinson's unique.  The fact that someone has retired or has grown kids makes there ability to workout and focus on their health easier.  Yet, I was more likely to see those who were working full or part-time more active and more focused on their health.  Partially, this is out of necessity, because if you are the main provider in your family, you are going to damn well make sure you are there to provide.  But it also seemed that those who take control of their disease were in general doing better.

It was not so much a matter of age or time since diagnosis either.  I don't want to sound callous or harsh, but there were people I met in their 40s who seemed to have given up and were complaining about every issue that affected them, while I also met folks in their 60s who were exercising every day after living with this disease more than 30 years.  I don't want to discount that PD treats everyone differently.  We have a friend who has a particularly fast progression.  However, I can say, with my disease, to use the old cliche,
I have Parkinson's, it doesn't have me.

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