Shake, Rattle and Roll: The reality of living with Parkinson’s Disease

By A.C. Woolnough
Reader Columnist

About 150 Bonner County residents have Parkinson’s. It is one of the most common neurodegenerative diseases. Scientists describe it as chronic (never going away) and progressive (it’s going to get worse). Common motor symptoms include tremors, a slow and shuffling gait, balance issues, stooped posture and stiffness. Non-motor symptoms may include pain, depression, constipation, sleep disturbances, dementia and even psychosis. To make PD more complicated, everyone has a unique combination of symptoms. That’s why, if you’ve met one person with PD, you’ve met one person with PD — each of us is different.

A.C. Woolnough.

Back to those of us PWPs (people with Parkinson’s) living in Bonner County: We all have family, friends, co-workers or acquaintances that are also touched by the disease.  Figuring a conservative number (say a total of 50 each), PD directly impacts the lives of at least 6,000  souls—just in our small corner of Idaho. So, what’s it like to live with PD?

One of the challenging aspects of living with PD is when, what and how to share information about the diagnosis and to whom. I choose to be open. I see my role is to be advocate, to educate and to participate in research. I strongly believe: if not now, when and if not me, who? Conversely, others may be concerned about how people will react, especially in the workplace. They choose to be more discrete and that’s also appropriate. Each PWP decides what is best for them in their situation.

It’s easy to talk about motor symptoms but much harder to talk about sexual dysfunction, anxiety, pain, falling, dementia or seeing things that aren’t there. While I am not a typical PWP, I do have my own narrative. Diagnosed nearly five years ago I skipped the denial part having watched my dad deal with PD. My worsening tremors were also a big clue. After I read everything I could find, I attended several conferences and I had a heart-to-heart with my doctor. It was only then I began to consider myself lucky. Lucky? I have what is known as tremor dominant PD and that type is (usually) the slowest progressing and the least likely to lead to dementia or cognitive decline. For me, my tremor is simply there. Most of the time I don’t notice it. That doesn’t stop me, when I’m perfectly honest, from being scared shitless. I saw my dad die with PD; my brother’s father-in-law has severe dementia and requires 24-hour care; I have seen PWPs using walkers or dependent upon a wheelchair; I know many PWPs with the scars indicating deep brain stimulation—brain surgery! I not only don’t know what the future will bring, I don’t know how much future I have. At times, I worry about having to leave our wonderful two-story house because I won’t be able to handle the stairs. I think about quality of life issues as the disease progresses. Will I have to stop driving? Will I need adult Pampers? What about the price of needed drugs? Will I end up a burden to family?

Mostly, I worry about my wife and angel. Remember, it’s not just me with PD, it’s also my wife, our kids and grandkids and even our friends. Pamela is frequently more aware of my PD than I am. I can’t see the facial masking or the soft voice. I don’t notice the menu shaking when we’re at a restaurant. I can’t read her mind when she gets concerned about what the future holds. Fortunately, neither of us dwells on the unknown — at least for very long.

But — there always seems to be a but — PD also impact relationships. Another reason I feel lucky with my tremor dominant PD is Pamela does not have to provide physical or medical care; instead she is my rock. She provides emotional support mixed with love. Despite a vow of “for better or for worse,” caregivers are sometimes overwhelmed. I know of three friends whose wives couldn’t handle the responsibility, the stress and the uncertainty. They are now all divorced. The thought of living alone with a progressive disease is terrifying.

Although I haven’t gotten the result back from an extensive genetic analysis (think 23andMe on steroids), I am concerned for my sons and grandsons. Various researchers and my doctor are convinced that my PD is not random. It is genetic and hereditary. Although I know intellectually that worrying about their odds of getting PD is not productive, it is something I think about.

A personal characteristic that drove my mom (and probably many others) nuts is my stubbornness; this trait can be labeled firmness or pig-headedness. No matter the words used, my innate stubbornness serves me well living with PD. I am determined to make the best life with PD for as long as possible. I can participate in research; I can exercise regularly; I can share my story; I can advocate; and I can maintain a positive attitude.

I have a poster on the wall that states,  “Fate whispers to the Warrior: ‘You cannot withstand the storm.’ The Warrior whispers back: ‘I am the storm.’”