Not Your Grandfather's PD

April is Parkinson's Awareness Month, a time to shed new light on this jumble of symptoms that we label a "disease." If you ask people what they know about PD, many will say that it is a disease that old men get that makes them shaky, stiff and unable to walk. That may have been true for most people with PD years ago but things are changing.

The average age of onset is 60 years old and according to the Fox Foundation, 10% of PWP are diagnosed before age 50. So much for it being an old person's disease. Sixty thousand new cases of PD are diagnosed each year and men get PD at a rate of 2:1 compared to women. That means that there are a lot of both
men and women suffering with PD.

Although no cure is forthcoming, research is being done and treatments are being developed to manage the symptoms and slow down the progression of the disease. Yes, research is showing that it can be slowed down! Studies are now showing that exercise can slow the progression of PD. We now have many medication optionsand for some of us, even surgical options to reduce symptoms.

We have work to do to stay healthy while we wait for that ever elusive cure but at least we have options available to us. For me that means hope...for a higher quality of life, for a full future, and yes, someday, for a cure. This is no longer my grandfather's PD, it is mine and I will fight it with all I have.

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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