Chronic
One of the needs of people with Parkinson’s Disease is how to cope with chronic illness. A disease of variable severity, with variable signs and symptoms, and yet slow progression requires acceptance but also skills to accommodate all the stuff thrown at us. How do we come to grips with having such an illness? How well do we accept the diagnosis? What can help?
I was diagnosed with Parkinson’s within 12 months of my first symptoms, which is uncommon. Most people have symptoms for 18 months to three years before diagnosis. That day in November 2007 was the first chronic illness I had acquired, other than a little high blood pressure.
Chronic illness was something I dealt with as an internist for 30 years in my practice; diabetes, hypertension, heart disease, cancer, rheumatoid arthritis, all diseases requiring maintenance and modifying drugs to control. While I have had plenty of acute injuries (five knee operations, two back procedures, and multiple lacerations) to understand being a patient, I just had never considered having a degenerative illness that is “from now on.”
The diagnosis struck me softly. After all, we have to get something, right? I was 62 and didn’t doubt the doctor was correct. Once I started reading in-depth about PD, my confidence got worse, not better. I like my doctors and have great confidence in the movement disorders specialist that manages my disease. I realized that it was the very chronicity that I feared and that I might get to the point I could not defend myself from the disease or the healthcare system. I realized that getting comfortable with a degenerative disease required getting more comfortable with the end of the disease, which would naturally leave me out of the process. I want my wishes, not guessing, to be part of that discussion!
Candor
I wrote a frank two-page “lay narrative advanced directive” document to my family regarding end-of-life issues and what I believe. I gave a copy to all my doctors. It explained in lay terms what I wanted in the event I could not make decisions later. It was in “my language” because I wanted my family to say, “Yes, that sounds like Pop.” Then I signed a very legal advanced directive as well, prepared by my attorney, and it refers to the “lay narrative.” There is no conflict between the two, but the advanced directive by the attorney does not specify what is meant by “life-sustaining support” or “all reasonable means,” etc. My document is specific in that a feeding tube is considered life support, no question. Even for a short time feeding tubes support life, in my opinion.
I have never witnessed attorneys getting involved in end-of-life care. Rules of law, yes. Care, no. Maybe somewhere they do, but I never have seen it. It must be very uncommon. They are great at preparing and printing documents, but I have never seen them in the hospital or hospice. Don’t think your attorney will show up when you are sick with the documents they prepared for you; they won’t. I updated our wills and made sure my durable power of healthcare was assigned to my wife.
Then came the hard part.
Conversation
I talked to my kids and was very blunt to make sure I was clear. That message needs to be repeated often. “No heroics like ventilators or feeding tubes unless I am ‘with it enough’ to make the decision with you!” I defined “with it” not only as blinking my eyes but as engaged in reasonable conversation and remembering parts of the Gettysburg address. Being able to say “goo-goo” is not my definition of “with it” and I wrote that down! I started a specific plan to converse with my wife about end-of-life issues. I did this so she could say definitely that “she had heard me say many times…” I wanted redundancy in my wishes, not a document somewhere that nobody had gotten out of the filing cabinet.
I started to include my wife Alice in all tax and legal matters, in addition to house vendors. I brought up once difficult subjects to discuss like will Alice move if something happens to me. What will she do with all the furniture and stuff? Who will she get insurance from? Who to contact if something happens to me? I quit home repair jobs that I once did with confidence in favor of expensive experts because I can’t manipulate tools anymore. In 50 years of marriage, I have shared with Alice what I have done, so that those decisions would not be new to her.
Calm
The end of chronic illness very seldom happens such that you can calmly request a copy from your doctor’s file to show EMS when an ambulance gets called. You may have it all planned out, but when the EMS folks get there, it’s hard to get them to sit down, much less for them to read and accept anything. And of course, you never know the timing of an ambulance need, it is certainly not during office hours. Saving lives is what the EMS does, and they are very good at it. The person that is ill is not usually the one that calls the ambulance anyway and unless the family is prepared, they usually panic when a significant change occurs. Panic is defined here as, “to seek refuge in the fastest way possible from whatever unpleasant is happening,” not necessarily what the patient wants. If you have been present when an ambulance arrives on the scene somewhere you get the drift. They don’t ever show up planning on a family conference. If you have not been around them, practice stepping aside!
Coping
I am coping better with my diagnosis. It has been nearly 15 years and my wishes have not changed one iota. I’m doing pretty well, I think. I box/exercise three days a week. I still go to the store, and I still drive, but the days will come eventually wherein those activities are not feasible. I am not doing as well as I need to in order to stay independent long-term, but I will cope with that time too when it comes. My wishes may not be carried out as Alice will have the prerogative to decide what she wants to be done, but I am comfortable that my family knows what I want to be done. I don’t want anyone to feel guilty about the process. I’m confident that I have done all I can do to prevent a surprise ending. As for what exactly will happen, that is beyond my control; but my soul is at ease knowing I have prepared the decision-makersas best I can.
After all, I managed the process over 350 times in thirty years of medical practice. I still can contribute.
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Photo by Harli Marten on Unsplash
Dan Stultz, M.D., is a retired physician who was diagnosed with Parkinson’s disease 14 years ago at the age of 57. He practiced internal medicine in San Angelo, Texas, for 28 years and became the President/CEO of Shannon Health System. He served as President /CEO of the Texas Hospital Association from 2007 to 2014 working on medical and health policy. He served as guest faculty at the Texas A&M Medical School in Round Rock and retired in 2016. He and Alice live in Georgetown, Texas.