Happy Anniversary

Anniversaries are usually happy and joy filled. They are also times for reflecting back over the past year. Well here it is. I am coming upon the second anniversary of my PD diagnosis. That day two years ago was anything but happy and joy filled. It was terrifying and fear filled.

My first year of PD was a very bumpy rollercoaster with many more out of control twists and turns than I would have liked but this second year has leveled out and there have even been some very happy high points.

During this past year, I became a certified Rock Steady Boxing coach and a Parkinson's Ambassador. I also started this website and blog. I have embarked on a mission to let others know that having PD isn't the end of the world and you CAN do something about it. I did not choose to get on this rollercoaster but I am on it anyways so I am going to make the most of it. Although I am still fairly early on in my journey, here are a few things that I have learned (so far) along the way:

You can only help others if you help your self first. Self-care is not self-ish.

Smiling feels awesome! (Not only is it contagious but it is really good for your facial muscles!!!). Try it right now...see, don't you feel better?

Hard work is hard work! Do it anyways, you will feel better after.

Hold on tight. Life with PD is bound to have its speed bumps. Slow down when you need to.

Build a tribe of support. Help others in your tribe when you are able and don't be afraid to let them help you.

Food is fuel and food is medicine. Treat it as such.

I always say God makes cool stuff...and he made me, so therefore, I must be cool. (My kids may not agree with this one). I will embrace my cool factor by being silly and having fun and not taking life too seriously.

Every day is a gift. Treasure each and every moment.

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. · ...

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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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