Expect the Unexpected

When you (or your loved one) were first diagnosed with Parkinson’s, did anyone tell you that the future was going to be full of surprises? Like...poof...surprise, that medicine that worked just fine yesterday, has stopped working today but never fear, it may work again tomorrow. Or...surprise, your toes have taken on a mind of their own and are now dancing to their own tune. Not all the surprises are bad. Did anyone tell you that you might become part of a community full of resilient, caring, and determined warriors? Did you ever imagine that at your age...whatever that age might be, you would be stronger than you ever thought possible and would be spending hours a week in the gym and enjoying it? One thing for sure that Parkinson’s has taught me is to expect the unexpected. The only thing I can do to prepare for the unknown is to educate myself. By doing this, I am better equipped to handle whatever comes my way.

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Self Advocacy in a World of Red Tape

In a perfect world, a person with an illness or a disability would easily be able to get needed services and treatments. We do not live in a perfect world and often the healthcare system is littered with red tape. Patients or their care partners are tasked with jumping through hoops, waiting countless hours on hold with pharmacies or insurance companies, and waiting months to see specialists. I wish I had the solution to this problem but unfortunately, I only see it getting worse. You need to be an advocate for yourself. Here’s what has helped me: · Be persistent, be firm and be polite. · Call often. A squeaky wheel gets attention. · Stay on hold. It is frustrating but sometimes it is the only way. · If someone doesn’t have the answer you need, ask to speak with someone who does. · ...

Medication Pumps for the Trend Setters

I jest. You have to keep a sense of humor when you are living with a condition like Parkinson's. I am actually very thankful for new treatments even if they aren't pink and pretty.

Big Dreams Not Happening

If only we could live in a world where everyone put their innate talents and gifts together and worked to solve problems, we might have a world with less illness and suffering. It would also be a world with less multibillion dollar companies. I understand that people need to make a living and I also understand that competition between companies can sometimes spur new thought and development of ideas. I understand the need for regulations and standards for safety. I understand that all of this costs money. But when you are living day in and day out with a degenerating illness that has very few treatments, and no glimpse of a cure, you really don't give a darn about any of that. You just want to get better. You want to be able to trust that you are being given the best advice about the best treatment and you don't have time to wait for it. I will continue to dream about my ideal world but I expect that it will just stay a dream....

Rock Steady Fighter

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