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.
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.
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.
Sometimes life can get so hectic that I have to remind myself to slow down and breathe. OK, I know I am breathing all day long but I mean the long, slow, deep breaths that go all the way to your toes and makes you pause. Part of keeping healthy is taking some time for that kind of breathing. It brings me peace. I try to take some time each morning to just be still in my thoughts. It is my time to center myself and talk to God. It starts my day off with my focus on what is possible with God and not what isn’t possible because of this stupid disease. PD has a way of stripping away relaxation. It can turn life into a rollercoaster of anxiety. I am learning to prioritize my quiet time and cherish each breath because each and every one is a gift from God.
No two people with PD are alike. They say we are like snowflakes. A treatment that works for one, may or may not work for another and side effects are a constant concern. One of the biggest changes I made after my diagnosis was my diet. My dietary changes were first spurred on by Dr. Terry Wahls and her TED talk, Mind Your Mitochondria. Dr. Wahls has MS. She has also drastically improved her health by changing her diet. If it works for MS, maybe it could work for PD. What could be the worst thing that could happen if I started to eat more fruits and vegetables and cut out all the Diet Coke and other processed junk I was eating? Worst case scenario? I might get healthier? Continue reading “Eat Like Your Life Depends On It”
I recently listened to a lecture by Richard London who is not only a PwP but a cancer survivor as well. You can find out more about him at ahandbookforlife.com. I thought I’d share some of his insights:
PD is what you have, not what you are.
Exercise as if your life depends on it, because it does.
Defining your new normal is a process.
Do not focus your PD research on the negative aspects of the disease because they may never happen to you.
Accept change as normal. Continue reading “Thinking Positive”
Dr. Sarah King of Invigorate PD recently put out this list of the seven essential elements of a highly effective Parkinson’s exercise program. Some good info here.