Parkinson’s Disease: The Bigger Picture
Personal Perspective on Parkinson’s
“Sara! Come sit down with me and listen to this song.” Youtube is calling again and with a sigh, I try to find an excuse to get to the kitchen and help my mom with the dishes or take the dog out for yet another potty break. You see, my dad sits comfortably in his La-z-boy recliner for the majority of the day (which is hours on end), watching the endless classic rock videos taking him back to the normal life he once experienced and enjoyed…the life before Parkinson’s set it.
All those around him are searching diligently to find some purpose of life for him as he slips into an isolated “coma” of the mind. My father is currently in stage 4 of the disease. Lucky for him, his grandchildren keep him on his toes with the occasional, “Grandpa, catch!”, as a workout ball comes flying at him full force. Or, the newest fuzzy addition to the family jumps up on him licking his beard uncontrollably, scampering for all those yummy scraps from the previous meal. He definitely gets his fair share of attention whether he likes it or not!
By far, I have the most caring mother a person could ask for. She is selfless in every way towards my father. I mean, who gets a whole bowl of seasonal fruit, scrambled eggs and homemade whole wheat bread for breakfast everyday! She cares for his every need and takes on the burden of a life that was handed to her unexpectedly. We all make plans for the future and have goals we wish to accomplish. My parents longed to serve a mission for our church and travel the world together but the cards just didn’t deal that hand.
The road has been a long, burdensome one. Rare cases find that long term disability attorney is an option also if you have the right resources, but don’t expect to see any social security benefits! Then there is the headache of 5 different neurologist who all think he needs a different medication, all with different side effects that go along with them, from horrible tremors to hallucinations. You have non-stop physical therapy, frequent dentist appointments because eating and brushing become very difficult, applications for breathing treatments, in-house care and the list goes on. Living in a state that has now legalized the use of marijuana, that came up in our conversations. We had even discussed the possibility of the use of marijuana in the pill form because of studies that have been made on the Cannaboid receptors that can improve tremors and may alleviate dyskinesia. However, our moral conscience kicks in, being that we don’t agree with the use of “natural drugs”. Bottom line, those who are in this boat know that the storm is tremendous!
Now what?… Well, we all have that gift of agency. We get to choose happiness or sorrow. We can choose to mope around all day feeling sorry for ourselves or do something about it! And that is just what our family chose, to do something about it! We all decided to have an outing, at least once a month, to take my father out of his comfort zone into the great outdoors. Now, he does get outside occasionally but this is an outing that would involve a longer period of time with much more activity than normal.
So, off we go! This is where the story gets interesting. Every drug that has been prescribed to my dear old dad cannot give him the joy and stimulation that the outdoors provides. Just this last weekend we spend the day in a regional park, listening to the birds sing, watching the squirrels chase each other and laughed as we raced around in a 4 seater pedal bike. My dad had the chance to laugh, heighten his senses and experience a piece of his life before it all changed. I have to say that the worst thing for a patient with Parkinson’s is for them to sit around watching TV or stay inactive. Their speech slows down, mobility is more crippling, overall they become completely immobile. We will all be making a better effort to improve his quality of life through the God given beauties of the Earth.
I think everyone would agree that the quality of life is more important than life itself. As loved ones and family, we choose quality of life for my father. As we accept the change Parkinson’s has brought into our lives, we can now focus on those things we CAN change to make the quality of life the best that it possibly can be. That’s the bigger picture!