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clinical trials	clinical trials  - trial experiences Jean - coq10 clinical trial Sheryl - showusthecure.org
advocacy	advocacy -  trial participants rights -  creativity - presenting - make your voice heard - PD Tulip - tulip examples
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et cetera	pd orgs - site map - pdtulip.com - photo-tricks - pd tulip psa - pdstamp.org

Don’t let PD make you invisible

To borrow a phrase from comedian Jackie Mason, “I don’t want to be part of any group that would have me as a member.” Yet Parkinson’s disease drafted me, and my only option is to make the best of it.   Coping with Parkinson’s is an ongoing process. It takes constant work, the support and encouragement of family and friends, and a stubborn refusal to give in to this relentlessly progressive disease. No sooner do we adjust to one symptom or treatment side effect, than another rears its ugly head.   Living in a society that values youth and “beauty” above all else is not healthy for the self image of those struggling with a chronic, progressive disease. Embarrassed by dyskinesia, tremor, and other visible symptoms of Parkinson’s, we feel like people are staring at us, and worse yet, with pity. Rather than attract this unwanted attention, many of us gradually withdraw from the outside world until we become virtual prisoners in our own homes, deepening the depression so common in Parkinson’s.   Although refusing to go out in public is an extreme reaction, we all hide to some lesser extent, and often don’t even realize we’re doing it. We hide every time we:  top

Order a salad instead of the soup we want because we’re afraid of making a mess. Avoid buffets so we don’t have to serve ourselves and carry our food precariously on a tray. Pay with a credit card to avoid having to fumble for change while other shoppers wait impatiently in line behind us. Sit on our hands to conceal our tremor in social situations. Why are we so afraid of knocking over a glass or spilling soup? These things happen to everyone, not just to people with Parkinson’s. By narrowing our world, we steal from ourselves the joy we can have living life to its fullest today.   By making ourselves invisible, we give the “temporarily healthy” a pass for not seeing us, or understanding and responding to our needs. The more we go out in public, the more people will see and come to accept us. This boosts our self- confidence and empowers us to change how others see us.    top

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