Every Month is Parkinson's Disease Awareness Month for Us
April WAS officially Parkinson's Awareness Month, but for those of us on this journey known as Parkinson's Disease... EVERY month is Parkinson's Awareness Month! For my husband, Michael, and myself who both have PD and so making us also care partners.... this truth is irrefutable. Having chosen to make a difference in the Parkinson's Community and advocate for others as well as ourselves, our work is 7 days a week, 365 days a year.
WAIT! WAIT! You BOTH have Parkinson's?
Michael and I "met" online in 2002. Back then, there was pretty much nothing out there for people with Young Onset PD. We were in our early 30's. Michael had been diagnosed in 1995 with PD and I had been diagnosed in 1999. He was a single father of 4 children and I was seeing the end of my marriage largely due to Parkinson's and a mother of one daughter. We ended up starting an online chat room (pre-social media) that turned into a non-profit organization, Movers & Shakers, the first Young Onset Parkinson's Conference, and ultimately somewhere along the way we fell in love, got married, and became a family.
Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope. -
It must be great to have someone who understands exactly what you are going through!
Prior to us getting married we had a neurologist question whether two people with Parkinson's should really choose to get married. While it did make us think for about 30 seconds and then fire him... It is NOT all roses and whipped cream! While we have dedicated much of our life's work to advocacy, awareness, and education of PD, there are often challenges that we face. We are both on disability, so finances are ALWAYS an issue. We try not to have a bad day at the same time, but that is not always realistic, especially when the flu hits us both... Who becomes the caregiver? The DOG? She is a good foot warmer, but always spilled the soup or ate it instead of bringing it to us. As we always say, when you have seen one case of Parkinson's, you have seen one case of Parkinson's.. it is not a cookie cutter disease, so our issues are not always the same. We can understand much of what the other is going through, but not everything.
How do we cope?
To be honest... We do not just COPE, we LIVE! We have a very strong faith and are also love to laugh (especially at each other). We stay very involved in the Parkinson's Community on social media, and with PD organizations like the Davis Phinney Foundation, World Parkinson Congress, Parkinson Foundation, Michael J. Fox Foundation. We exercise not only our physical bodies, but our voices when it comes to speaking to our Congressional Leaders when advocating on issues related to Parkinson's. Most importantly, we surround ourselves with a support system, both near and far.... friends, family, church family.... that are aware of our journey with Parkinson's Disease. Sometimes it might even be the clerk at the grocery store that knows and always helps us out with our groceries, or the nail salon girl, who knows I have a wonky walk and get my feet done just right during a pedicure. Michael and I have had PD for 21 and 18 years respectively, and we used to be embarrassed by our condition, but now... We make EVERY month Parkinson's Disease Awareness Month!
Do you or a loved one use smartphone apps to help with PD management?