The story below, written in two parts over four years ago, began in the fall of 1980. After rereading and condensing them, I realized my life has started to follow a path similar to my mom and dad’s.
I was at a family Thanksgiving dinner at my Aunt Ruth’s house when Mom made the announcement. Dad was retiring, and he had Parkinson’s disease. He’d been off work for about six weeks after cutting his hand on a broken pop bottle. Broken bottles were a part of the job when you deliver pop for Faygo. He’d injured himself like this at least once before, but he returned to work. Not this time.
I was surprised and a bit hurt. I thought this type of news should have been shared with my two sisters and me before everyone else. But it wasn’t. I guess Mom thought telling everyone all at once would be easiest.
I had heard of Parkinson’s disease but knew of it in name only. I didn’t know what having it meant. Dad had always talked about owning a “party store”. I thought he might buy one after he finished with Faygo, but it just wasn’t in the cards. Retirement meant stopping work of any kind. Having Parkinson’s meant living a whole new life. Both were big challenges.
Parkinson’s disease is a progressive nervous system disorder that affects movement. The first thing I learned was there was no cure, but symptoms could be assisted with proper medications. Symptoms start gradually, sometimes starting with a barely noticeable tremor in just one hand. Tremors are common, but the disorder also commonly causes stiffness or slowing of movement.
In the early stages of Parkinson’s disease, your face may show little or no expression. Your arms may not swing when you walk. Your speech may become soft or slurred. Parkinson’s disease symptoms worsen as the condition progresses. The thing I noticed first with dad was the way he kept his right hand in his pocket even when he sat. Securing his hand was a way to control the tremors from public view.
Shortly after the family announcement, Mom and Dad joined a Parkinson’s support group. The group’s mission was to help people understand what was happening and to offer assistance as the disease progressed. It always gets worse, but the rate of decline differs from person to person. Mom told me I could attend the meetings if I wanted to learn more about the disease because they were open to everyone. I made it a point to attend two or three of the monthly meetings each year.
There were guest speakers who spoke of new medications, many who were doctors specializing in the disease. Dad changed doctors a couple of times when they liked what they heard from the presenter. They found messages of hope and gravitated towards it. Mom eventually became the leader of the group. Leadership meant learning more and organizing the meetings. Dad enjoyed going to them.
When I attended, I saw Dad in his element. Mom was the group leader, so he assumed the role of right-hand man. He welcomed the attendees as they gathered, shook hands with the gentlemen, helped ladies with their coats, and kissed several veterans on their cheeks as they departed.
The Parkinson support group helped both Mom and Dad learn what to expect from the disease. They knew he wasn’t going to “get better” because there’s no cure. He could “live better” if he followed the advice of his doctors and adjusted as he aged. They learned people didn’t die from Parkinson’s, but rather with it. Parkinson’s contributed to the decline of one’s overall health.
His medication changed over time, and after a few years, he needed to use a walker. His was the three-wheeler with a set of hand brakes. It was sporty in addition to being functional. I called it his “Harley”.
Dad gained a more positive perspective when he compared himself to others. It brought a sense of relief to know that he was doing better than some, and he valued helping those who needed assistance. He learned what to expect by watching the disease progress in his new friends.
I recall an aha moment during one of the meetings. There were two Tonys in the group. The group members referred to them as “Big Tony” and “Little Tony”. At five-foot seven Dad was “Little Tony” and a six-foot three former football player was “Big Tony”. Big Tony was in a wheelchair while Dad used his “Harley”
There was an opportunity to ask questions and share personal information during each meeting. Big Tony’s son came to one to share a modification he’d made in his dad’s bedroom. He explained one of Big Tony’s challenges was getting out of bed each morning. He was too stiff to sit up and swing his legs out of bed on his own, and too big for his wife to handle. Once he was up, and his medication kicked in, he got around just fine. But getting out of bed was a challenge.
The son installed a garage door opener to the ceiling of his dad’s bedroom. The ceiling had to be reinforced to handle the modification, but once it was installed, it worked well. The opener had a trapeze handle that hung low over the bed. After Big Tony grabbed the handle, he pushed the remote control, and the chain driven opener pulled him to an upright position. Once he was upright, he could swing his legs over the edge of the bed and slide into his wheelchair.
The son shared a couple of pictures of the contraption and offered to make the modifications to anyone’s bedroom should they need it. He finished with, “Your advice has helped my dad a great deal, so if I can help you, I’m happy to do it.”
Both Mom and Dad valued the lessons learned through the support system. The Parkinson’s group was the first support group I personally attended. It helped me too. I gained a new appreciation for what I had, as well as an understanding of my dad’s condition.
Over the years I’ve had friends and family attend a multitude of support groups: AA, Al-Anon, Gamblers Anonymous, bereavement groups, and groups for all sorts of illnesses. The list seems endless, and if the group you need hasn’t been formed yet, you can start one yourself.
The common denominator is their purpose. Each one provides an opportunity for people to share personal experiences and feelings, coping strategies, and knowledge about treatments. Knowing you’re not the only one dealing with an issue is powerful. Mom and Dad attended meetings for twenty years. They cherished the support they received and valued the new friendships they made.
I did too.
I had no way of knowing that what they did as a couple might end up leading me down a similar path.
TBC