12. Go straight up I-35 and take a left

A Parkinson’s Disease diagnosis does not equal a “disability” caused by Parkinson’s Disease!

I got the diagnosis, sans the availability – or the NEED – of a handicap parking permit… so, as reality set in, I took stock of myself – and found the same smart, pretty, creative and productive lady I had always been! Reality for me simply required that I redefine what it means to be “up to speed.” I was not – am not – disabled. I was simply facing some limitations – and doesn’t everyone have limitations?!

SuperShannon stepped up to the plate, in search of  information, encouragement, and support. She found all three at the National Parkinson Foundation / Young Onset Parkinson Network web site, and, there, “we” learned about – and signed up for – a seminar for people with young onset Parkinson’s, that was coming up in just a matter of weeks.

I traveled, alone, to Minneapolis for the multi-day event with little idea of what to expect. And, I confess, that, after checking in at the hotel, I wondered if I had made a mistake by coming at all. I was feeling a bit depressed – and not anxious to become more so.
I went down to the lobby to register, glancing all around for the other “diseased” folks who had come for the conference. It came as a bit of a surprise when I realized that, with all the people around me who were registering as well, I had not found myself in a tangle of canes and walkers. I slept well that night, feeling “normal” and less afraid than I had in months.

As I attended sessions and spoke with other attendees, I found almost everyone to be shocked to find that I was there as a Parkinson’s patient. Apparently the tremors and slowness that influenced my daily productivity level were not discernible to even those who could best relate – and most were even more shocked to find that I was attending my first YOPN conference so recently after being diagnosed! Many PD patients that I met that weekend were years beyond their initial diagnosis, but just beginning the journey for knowledge and support. Most had told virtually no one that they have Parkinson’s, others, only their closest confidants.

It was an educational event. My only disappointment that weekend was that some sessions ran concurrently so I was not able to hear every speaker and gain knowledge on each subject that was addressed. A great deal of information was imparted: some scientific in nature, some, philosophical; almost all was helpful to me as a PD newbie.
Reviewing my notes from the conference, I offer some of the simplest – but, also, most important – points that I brought away from that YOPN conference:
• Having PD is not your fault!
• PD affects every patient differently.
• It’s important to stay attuned to your personal progression with Parkinson’s.
• Seek information… minimize blame, guilt, and stress… avoid secrets and silences… increase hope and    optimism.
• It is important to articulate your feelings. You must talk – and laugh – and touch!
• Ask for help! (You can’t do everything; but remember: most people enjoy being helpful to others.)
• Don’t be defensive of family or co-workers’ observations. (They may be right.)
• Do not ignore warnings that your driving has become dangerous.
• Remain as active as you are able. (If you get in a wheelchair, you’ll never get out.)
• Exercise is as important as your PD medications.
• Create a Paper Trail:
o Tell your employer IN WRITING about your disability.
o Request reasonable accommodations; expect them to be fulfilled
• Preserve your personal rituals and celebrations. (Adapt as necessary.)
• Long-term denial is not OK.
• You are still here. You are still you. We are all changing.
• There are new treatments in our future!
• Find a neurologist you would want to recommend to every PD patient!
• Never give up hope!