My PD Story

Imagine you have recently been diagnosed with a chronic disease and you are attending your first educational conference. You are sitting in a large room with several hundred people listening to a physician with a personal connection to this disease begin his presentation.

I felt a wave of hopelessness; I thought what possible good news could he offer me? I felt like leaving. But I didn’t leave, and I am glad I didn’t. 

My name is George Eckenrode. I am 76 years old, retired, married and have recently moved to Phoenix, AZ from Pennsylvania.  I am a father and a grandfather. I am here in Maricopa County because of these last facts: my wife and I have three grandchildren. And they live here!

Fortunately for me, Maricopa County is a Mecca for people with Parkinson’s disease (PD). It is blessed with the full range of PD services: caring compassionate healthcare providers of all disciplines and state of the art institutions dedicated to all aspects of chronic disease care (diagnosis, treatment, care, education, research and support).

PD Lessons Learned

In school I was taught when the planned lesson activity didn’t go well that all experiences are learning opportunities even if they are not planned. Life is like that too. Here are some things I didn’t expect to learn when I got PD.

• I sleep funny. One question I was not expecting was: “Do you act out your dreams?” Turns out I do! I have Rapid Eye Movement Behavior Disorder (RBD) — and have since learned sleeping disorders are strongly predictive of PD.
• I smell badly. Not my state of hygiene but my sense of smell. My wife was not surprised by my diminished sense of smell (discovered through a sniff test at my doctor’s office) as evidenced by her having to remind me to take the trash out.
• I am very mood-y. I have had dysthymia (a form of depression) for years but I never knew I had anxiety till I learned I had PD. Even the depression took on a more negative flavor—that of apathy.
• I don’t ever forget a face; it’s everything else I forget. I would like to think I just have “tip of the tongue” memory loss; but it’s a lot more. I have the slowness of recall. It doesn’t matter how recently I heard or even used the word. It just won’t come.
• Welcome to orthostatic hypotension! Such a lovely expression for lightheadedness, isn’t it? I had noticed this for a while before I was diagnosed but I usually blamed it on other causes. What it really was caused by, is my PD.

There is a new person in my life: my “care partner."

I have known my wife for over 50 years. During that time, she has carried a list of monikers: my friend, my girlfriend, my wife, my financial support during grad school, and the mother of my children.

Now with the advent of my chronic illness, she has added one more title — that of care partner.

While most wedding vows still include the part about “in sickness and in health”, the arrival of a PD diagnosis changes that vow from a possibility to a certainty.  As with all other monikers she has carried, this position is again unpaid.

I like support groups — who knew?

Support groups have been a vital part of healthcare for decades now. My first neurologist in Phoenix recommended beginning an exercise program and mentioned a specific one in particular. Attending that exercise program opened the door to a world of PD support including joining a support group. It became clear to me after attending my first Parkinson’s support group that this group would play an important role in my life going forward.

It was a place to ask questions, questions no doctor could answer, unless, of course, he too had Parkinson’s. It was also a place to hear and tell stories and to hear and share information. And as its name indicates, a place to receive and offer support.

Things are changing but is it PD?

For those of us, like me, diagnosed in our seventh or eighth decade of life, we are often already experiencing some changes in our body’s functioning. The question then becomes: is this change (in hearing, bladder control, memory) PD-related or is it aging or something entirely different? 

Questioning is good, both at our doctor’s office as well as with our care partner and our support group. Questioning means we are paying attention, something we may not have been doing before the tip of the PD iceberg broke the surface.

Closing Thoughts

My wife is fond of making the following sound statement: “When you have met one person with PD, you have met one person with PD.” And now you have met one person with PD and what he has learned and continues to learn.

From exercise classes to support groups, find Parkinson’s resources near you.