Jan. 1, 2018
As the new year starts, I can’t help but look back to where I was a year ago. I was still reeling from the “you have Parkinson’s Disease” conversation with my doctor. I was in the midst of figuring out which meds worked for me. I was still hiding my diagnosis from all but my closest friends. I was stricken with anxiety about the battle that lay ahead. PD is a “progressive, neurodegenerative disease.” To me this said, today is the best I’m ever going to feel. I will get worse with each passing day…well, SCREW YOU PD! I don’t know exactly when it happened but at some point I decided that it didn’t have to be that way. I decided to fight back.
It hasn’t been easy; in fact, it often feels like a full time job but my life depends on it. Compared to a year ago, I am less stiff, my tremors are less, my gait is better, I sleep better, my energy is greater, I am stronger, I feel healthier, my motivation is through the roof and I am helping others with PD. God is walking right beside me on this journey and I can do anything when I keep my focus on Him. I don’t know what this year will hold or what God has planned for me but I am excited to see how He is going to use me. Together we will defy the odds. Here we go 2018. Bring it on!
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.
Nov. 1, 2017
I attended a conference this weekend where it was noted that it is the 200th anniversary of PD or at least when it came to be known as PD. In 1817, James Parkinson wrote an article on Shaking Palsy, today known as Parkinson’s Disease. The next big development in the world of PD was the development of Carbidopa/Levidopa as a medication to treat symptoms. This happened in the 1960’s. In the 1990’s Deep Brain Stimulation surgery started being used to treat symptoms. Lots of research is being done and newer treatments and meds are being used but there is still no cure. And so we wait. I’m not good at waiting. I tend to be impatient and like to take action. So while I wait, I exercise. While I wait, I research. While I wait, I participate in research. While I wait, I educate others. While I wait, I do everything I can to keep my body, mind and soul healthy. While I wait, I am participating in this wonderful life that God has given me. While I wait, I pray. Waiting is allowing me time to find my purpose on this rollercoaster journey. God is in the wait. And so I wait.
Oct. 22, 2017
Whether retired or still in the workforce, we all have lives and having PD on top of that only adds to the mania of daily life. No one wants to do Parkinson’s all day, yet we have no choice. I am fortunate enough to only work part time but I often wonder how PwP, or other chronic illnesses, work full time and work on staying healthy.
My “new normal” involves going to the grocery store more often to get fresh produce and taking more time to plan meals. Long gone are the days of pulling through the drive thru to get a burger and fries when I don’t feel like or don’t have time to make dinner.
My “new normal” also involves finding time to exercise every day. Sometimes I go to the gym, sometimes I go hiking, sometimes I go to yoga class and sometimes I can only eek out a half hour to ride my exercise bike or jump on my elliptical. My “new normal” also involves many more doctor visits than I ever imagined, PD conferences, support groups, not to mention the hours spent doing online research. My “new normal” is crazy busy because I get to go to the gym, I get to go to good doctors, I get to go to grocery store, and I have access to a world of online resources. Dare I say thank you for my “new normal?” To be honest, I’m still working on that one.