Throwing Spaghetti at the Wall

Do you find that your conversations with friends are dominated by medical complaints, queries, and experiences? The older I get, the more frequent the medical topics arise. Even when someone in the group points out that our maladies are monopolizing the conversation, and we switch to our latest book club pick or Netflix binge, the talk seems to drift back to healthcare. The latest bestseller is hands down more interesting than the latest suggestion to help constipation, kidney stones, neuropathy, fatigue...the list could go on forever. I venture to guess that if our health issues were easily solved, there wouldn't be a reason for so much discussion.

But as so many of us know, many illnesses have no clear resolution. Our doctors recommend different treatments hoping that something will help. They want to help, but even some admit, it really is "practicing" medicine in the truest sense of the word. I liken it to throwing spaghetti at the wall to see what sticks. What works for one, may or may not work for another. If you are desperate enough to feel better, you can spend hours online looking up alternative solutions to your ailment and will quickly find yourself throwing theoretical globs of spaghetti at the wall at home.

When I look back over the past seven years of living with Parkinson's, I have tried traditional treatments, and many, many alternative treatments. Most people I talk with who live with chronic conditions are doing the same thing. We are on a desperate hunt to find something...anything...that might help just a little bit. I will likely continue this as long as I am able, or until a cure is found. So if you come visit my home, please don't judge the spaghetti stains splotched on my walls. They are an attempt to find something that will bring a sense of wellness back so that my next chat with friends can be about blockbusters and bestsellers.

Now...what should I make for dinner? I'm thinking pasta.

Comments

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.

Getting Pumped!

I finally got my Vyalev pump. Like anything else with Parkinson's, the road has been bumpy. I started in the clinical trial about four years ago. That only lasted a month or so because of the skin bruising, swelling and medication pooling. At the end of last year, the FDA approved the pump and recently Medicare started covering it. I was anxious to try again. So now I am on day 6 and here's the good, the bad and the ugly: I am having much less off time. I am still in the phase of getting my rate adjusted and anticipate that this will improve even more. On occasion, I still use my Inbrija to get me over a rough patch but I'm not using it much and I anticipate I will need to continue to have it on hand in the future because life with PD, well, life in general, is unpredictable. I have had some trouble with the medication pooling and my skin bruising and looking bumpy and swollen. Thankfully, there is an online community of wonderful people sharing tips and tricks for dealin...

Rock Steady Fighter

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