Skip to main content

The Look



Today I got "the look" again when I mentioned to someone that I have PD.  The pause, the brow crinkle and this confused, uncomfortable, pity look.  If you have ever shared your really bad news with someone, you may have seen "the look." Many people don't know what to say when you tell them something like this and hence, "the look."  They don't know how to react and often cut out of the conversation quickly.

Guess what?  It's ok.  Most people don't know how to react and "the look" is something that just happens.  Today, I got a nice surprise.  The person that gave me "the look" asked me if it was ok if he asked me about my PD. We talked about my diagnosis and he wanted to know what I was doing for it because he couldn't tell I even had it. It was a great opportunity to educate him on PD and its current treatments (both traditional and alternative). I think I surprised him when I told him that it wasn't that bad and there were lots of worse things to have.  I let him know that prayer gets me through the day, that  I am doing well and fighting back. I'm happy to share my journey with others.  You never know what ripples you may cause when you share your journey... and most of us have journeys of one kind or another.  So next time you see "the look," try not to see it as something negative, but as an opportunity to educate and maybe even inspire.

Comments

Popular posts from this blog

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...