We Have to Make Wellness Happen

As I inch closer to the eight-year anniversary of my diagnosis, it becomes clearer every day. If I want to continue to live well with Parkinson's, I must work intentionally at it. I need to figure out (with the help of my care team) what is needed and then do it. That might mean going to speech therapy. It might mean switching up my workouts or adjusting my diet (again). It definitely means that I will have to do some things that I don't feel like doing and if I want to stay well, I will need to continue this for the rest of my life (unless of course a cure comes soon). I have seen the result of hard work in myself and in many, many friends. Those who are putting in the effort are doing better than those waiting for something to happen.

We have to make wellness happen and it is hard to do every day. That is one of the reasons I think it is so important to be part of a community of others with Parkinson's. They are the ones who understand and the ones that can kick you into gear when you are stalled out and unmotivated. So, keep in touch with your PD friends. Call them if they are missing in action from the gym or your support group. Keep an eye on them and encourage them when they are struggling. Let them know that it is ok to do the same for you. And hang out with positive people. A positive attitude is contagious, and it can sure help you get through the day.

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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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