Life on the Dopacoaster

I have always had mixed feelings about rollercoasters. They thrill and excite with slow, climbing ascents to vistas with beautiful views at the top, and can be terrifying with steep and sudden dropoffs. There is very little time in-between the extreme highs and lows to enjoy a peaceful ride. I can't help but make a comparison to my journey with Parkinson's. I am fortunate that Carbidopa/Levodopa, the gold standard treatment for PD, works well for me. I swallow those little yellow gems with the anticipation that slowly my symptoms will go away leaving me with a peaceful trek through my day. Seven years ago, when I was diagnosed, the peaceful ride lasted a lot longer. My highs and lows were more like gentle, winding curves in the road with the occasional speed bump thrown in to trip me up. Today, the peaks and valleys have gotten steeper while the time to enjoy the view in-between has gotten shorter and shorter. I have tried to smooth out the ride with various combinations of extended release medications that promise to give me an hour or two more of peace. As I slowly climb the hills each day, I pray, and I devour research articles and podcasts with the hope of finding something solid to grab onto, and give me hope that my journey in the future will be something to look forward to and not dread. It is those little glimmers of hope that keep me on the rollercoaster, belted in for the ride of my life. One thing I know for sure is that scary rides are much more tolerable when accompanied by friends and I am fortunate to have many along for the ride.

Comments

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....

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.

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. · ...

Rock Steady Fighter

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