What do I mean by the title of this post? Let me …
When people are diagnosed with a chronic disease such as Parkinson’s Disease, they often feel as if that condition defines them. It is tough to overcome this because many neurological conditions are very visual. The tremors of Parkinson’s impact your ability to function, to drive, to carry items (especially your grandmother’s good china), to eat without spilling your food, to write, etc. In addition, your mobility is totally different. You fall, you freeze when walking and you get out of the car or out of a chair with much effort and often need assistance. Then there are other physical appearances that you may not even notice. For example,I have an ongoing tremor on my lower jaw that makes me look like the puppet of ventriloquist and yet I have no control over it.
Despite these progressively outward signs that we have “something” going on, we are still the people we have always been before we were diagnosed with a neurological degenerative disease. This explains the title of this blog post, we are “ not Parkinson’s patients we are people with Parkinson’s.” It is the same idea when thinking of any person’s disease as an influencing factor in her or his life. Do you want to be known as “the cancer patient” or for-that-matter, the “dying patient.” It was a common practice when I was a new graduate and just starting out in medicine to refer to “those” persons as the “the terminal ill patient in the room at the end of the hall.” In part, it is a major reason why I studied issues on dying and death. I knew there must be a better way to address the needs of patients with life-altering conditions, starting with recognizing they are patients who are still human…not just a disease.
In an up-coming post, I will discuss my fifty-year journey in medicine as a physician assistant and in public health with a doctorate in the field. I have had many meaningful opportunities to work with hospice care (when there were only two hospice centers in America). I studied the impact that palliative care has had in England, Germany, Ireland,Holland and France by visiting hospice care centers and providers in those countries. It was an eye -opening experience to understand that individuals can have hope and continue to live as people , not only patients despite their condition or disease.
I AM A PERSON WITH PARKINSON’S DISEASE, NOT JUST A PARKINSON’S PATIENT!!!!!!!!!