Looking Through the Raindrops

I spend lots of time reading about Parkinson's treatments. After all, my quality of life depends on it. It's like looking through a rain streaked window.

Everything is blurry, but once in a while, you catch a glimpse of something clear and you get hopeful that the sun will break through and make everything clear. Then more rain falls, and that glimpse disappears and we wait for another peak of clarity and get our hopes up again.

In my head, I hold on to the clear pieces that I have seen and try to fit them all together. In my head, the researchers have squeegees and are trying to fend off the downpour of toxins, bad genes, head injuries and whatever else they think might be causing PD. (Aren't you glad you don't live in my head? It can get pretty weird in there!)

As the population ages, more and more people are being diagnosed with PD and the storm is growing. We need bigger squeegees or more window washers and they both require more money. Either way, it's going to take the cooperation of many to see the whole picture.

To my fellow Parkinsons warriors, keep looking out the window and hold on to each glimpse of clarity that you see through the raindrops. I'll be praying for a rainbow.

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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