Our family has been acquainted with Early Onset Parkinson’s Disease for almost 15 years. Although my husband, David, was not diagnosed until 2001, he had shown symptoms for several years before. As soon as we heard what the neurologist said, I read everything I could get my hands on. I sat and cried one day as I read the advice of one author who said everyone in the family needed to come to terms with the disease. Really? What was that supposed to mean? The definition of come to terms states: “To become resigned or accustomed; to begin to accept and deal with something difficult or unpleasant; to gradually accept a sad situation.”
We quickly discovered each one of us in our family came to terms in different ways. I still hate that phrase. Every day is different, so the terms are different. Who am I kidding? Every hour is different. Who determines the terms? Is there such a thing as term limits in Parkinson’s? Where do we go to read the terms and conditions?
Our son took a speech class in his first year of college in 2011. One assignment was to tell a story. He chose to tell about overcoming a difficult situation. He had plenty of subject matter to write this speech! I recently discovered the hard copy in some of my papers and asked him if he would guest host this blog post. So I’d like to introduce to you, our son, Michael in his own words…
Do you remember when you were young and used to play with Playdoh? You would sit there and have fun molding it and shaping it into different things. Sometimes you would use plastic cookie cutter shapes to turn a rolled out lump of Playdoh into something fun. Well, my life, as well as yours, is like that Playdoh. We have all been molded and shaped into who we are today by external forces that have either positively or negatively impacted us.
Many people around the world have been impacted by different diseases. Some are curable and others terminal. One of the terminal ones is called Parkinson’s Disease and according to the Northwest Parkinson’s Foundation “an estimated one million Americans suffer from this disease.” One of those people is my dad. This incurable illness causes him to tremble, to not have full control of his facial muscles, difficulties in speaking and shuffling when he walks. When I was ten years old he was diagnosed and ever since then he has gotten progressively worse. This past decade of my life has taught me a lot of new lessons and I’ve grown a lot.
At first this disease not only began to take parts of my dad away from us but it began to take away our happiness. I was a very sad and angry person back then, wondering why this would happen to my dad. But in the intervening years, I have along with the rest of my family, learned how to cope. I’ve learned how to rely upon an inner strength that has come through a deep inner joy. This gets me through the toughest of times. I now look at what I once thought to be a tragedy to be nothing short of a blessing in disguise. Because of this disease I have gotten to spend a lot of time with my dad. This enabled me to have an extremely close and meaningful relationship with him.
Because this has happened within my formative years, it has and is continuing to have a lasting and profound effect on my life. One of the major things all of this has taught me is extreme patience. It takes much more time for someone with Parkinson’s to do the simplest of tasks. Just standing can take great effort sometimes. So I have learned to be very patient with my dad. I go out of my way to make sure I do not have to rush him unless I absolutely have to. In some instances, not being patient with him and pushing does more harm than good. The pressure and anxiety that is then created causes him to operate at an even slower rate. So if my family and I are going anywhere, the preparation time takes much longer than usual. He needs more time to get ready both physically and mentally.
Obviously no one is perfect and so I have had instances where I have gotten rather frustrated. This happened more often when I was younger but over time I have felt a lot less frustration. Now in the few moments when I do get frustrated I know how to keep that impatience contained within me while maintaining a positive composure. Because of this patience I’ve developed, my life has completely changed. I don’t often find myself being angry or agitated because I have to wait for something. I know how to enterain myself or keep myself occupied or busy for extended periods of time.
There have been numerous times when my dad has had accidents that could have become a lot worse than they were. In a moment when something has gone wrong and he is in desperate need of help, it is paramount that my mom and I remain level headed and calm. We need to put aside all negative emotions, as well as our own needs so we can fully focus in on the task at hand and problem solve to meet the needs of my dad. If I am not clear headed and calm under the pressure of a potential emergency situation, it could quickly escalate into one. In one particular instance I had to quickly and calmly help when my dad had fallen in the bathroom. He could not get up nor could he move. It was late at night and I was very tired. When I heard him yell, it was as though a switch was flipped inside of me and all tiredness went away. Adrenaline kicked in. I immediately went to work helping him. I instantly put all apprehension and negativity aside and pulled him up; I helped him into his chair in the other room and got his medicine for him. With each accident that has occurred, I feel as though I have become a calmer, more clear-headed and peaceful.
While it is so sad and unfortunate my dad has Parkinson’s Disease, it has taught me many great things. Remaining calm under pressure and having patience have helped me in many different situations. These have become life-changing qualities for me.
Two years have passed since Michael’s speech. The terms continue to change: We had a year long battle with David’s insurance company. He has had two brain surgeries. He falls more.
We are still coming to terms.