When I was in practice I thought erroneously that Parkinson’s patients did not struggle or suffer much in the first stages of PD. This was partly from the fact that most if not all my patients with PD never seemed to complain. They were the “easiest” to care for until they got in mid-stages of disease and even then when I could tell they were struggling and repeatedly asked them to call me if things went wrong or had difficulties they never seemed to. I still don’t understand why?
This behavior and stoicism only has led many experts to believe that Parkinson’s is not such a bad disease not like ALS and other neurological disorders. I have even heard experts in PD tell their patients, if they had to have a disease they would hope for PD!
Even before I had Parkinson’s I would not wish this illness on my worst enemy for I have seen the devastation it leaves in the wake of its path. Perhaps, this behavior has come from years of dealing with the shame and stigma of having a disease in which once mentioned silence falls into a room and all eyes begin to scrutinize you and wonder if you are still you?
Having had cancer several times, sometimes I find it easier to say I am not working because I had cancer rather than PD. When you have cancer, people celebrate you and throw parades for you and make ribbons and release balloons in the air in your honor. But when you have Parkinson’s, there are no ribbons, get well parties, or rooting for you victory walks only misgivings.
It is time to stand up and let our voices be heard. We are still us and we are fighting for our lives same as those with cancer or any other neurological illness!
Will you please join me and be counted in the struggle to maintain our individual identities even as our bodies morph into something we ourselves may not recognize until it is all said and done and we have fully transformed into beautiful beings capable of many great deeds.