This is article five from John Royer, a man living as humorously as possible with PSP.
It is a day that is not so good for me. My mood is glum.
I get dressed with great difficulty, and Mary puts my socks on for me, a feat that I cannot do anymore. And then there is doing ordinary things like making the bed, a task that is easy for a healthy person but impossible for me with my balance disability. She does it without even thinking about it then starts dry mopping the hardwood floors throughout the house. Then it is a quick dusting of the furniture because it is tree pollen time and the yellow dust is everywhere.
It is hard to accept the disease that I have because it means that I can’t do the ordinary things that most men can do around the house. I am grateful that my wife shoulders the burden with such aplomb. I have to admit that sometimes when I wake up in the morning I get very depressed thinking about the future. Thinking about the present is bad enough. The negative thoughts start to assail me so I sit up, wait for a minute or two until the dizziness subsides somewhat, stand up, wait some more, and then head out to the kitchen, hoping to get my own breakfast before Mary wakes up. This helps her because it is one less chore for her and it helps me because my mind stops being fixated on negativism.
Later in the day…
We just got back from the grocery store and my wife had to carry the bags in from the car because I cannot keep my balance and carry anything heavy. After unloading the groceries into their proper places, she sat down and looked at the lengthy receipt. She knew the proper prices of each item and checked it for its correctness. How she could do that is beyond me. She even knew the prices of items at other stores and compared her knowledge of those prices to decide what to buy and where to buy it. She has a computer for a brain. I have an engineering degree and I couldn’t match what she does with ease. This especially impresses me because my PSP is starting to scramble my brain but at my best I couldn’t accomplish this thinking feat of hers. She also keeps track of doctor’s appointments and medications, something that I would really mess up if I had to do it.
Women are the smarter sex. At least my wife is.
Her stamina is amazing and I tell her so. She smiles and says that a woman’s work is never done.
I tell her that I believe her.
Our days are very similar. Vacations are going away in my mind. Ultimately, I will have to walk or be pushed in a wheelchair. My walking is terrible even using the mechanical aid called a walker. Even a nice walk on a trail through the woods is out of the question.
Eventually, it’s time for my shower, another thing that I cannot do by myself. I feel like a child. Thank God for my wife, support bars, and the shower chair. Again, I know a lot of other people put up with these things every day but for me it is a new experience which has come upon me in the last three years.
Am I feeling sorry for myself?
Absolutely! I make no apologies for the fact that I am scared stiff of falling.
Do I have false pride? Absolutely! I freely admit it.
Normally I have something funny to say but today’s not a good day. I did not go to the gym because my walking was really terrible. All my strength was useless as my brain sent the wrong signals to my legs.
Taupathy is the name given to my condition by doctors and researchers. I hope that I spelled it correctly. Of course, all of you that have studied PSP already know this. The Internet has tons of information about PSP.
I’m going to try something funny now. A week ago we were at my friend’s recreational vehicle and I was sitting at the picnic bench just outside the entrance and at the steps. The first step was impossibly high for me and the last step into the vehicle was the same. All the stairs had was a small handle at the top attached to the recreational vehicle. We old-timers of course referred to this as a trailer, a large one. I thought about using the bathroom which was small as on an airplane or a bus and had the same physical dimensions and door layout. I mentioned this to my friend and he said that 20 yards away there was a family bathroom for the campground with a decent layout. I decided to use that instead and asked my wife to assist me in walking. As I turned on the picnic table bench seat I lost my balance and landed sideways on the ground. Suddenly, I felt very alone. Why? I don’t know.
Suddenly, a multitude of hands were there to help me get up. I forgot my sadness about the trailer and felt silly about landing on the ground. And I felt really foolish about turning so abruptly. I had to smile as they helped me up and they also smiled when they saw my grin.
As I recall this incident, I realized that I was really being stupid because there’s always someone there to help. I’m not alone and should stop thinking about it in such a manner. Actually, I have a lot of good memories about people helping me. Sometimes I fail to look at the good things and I ignore the humor in life. People are invariably decent people and “funny” is still possible but only if you look for it.
My previous articles concentrated on humor interspersed between paragraphs of serious stuff but sometimes I need to get realistic and realize that there are good days and bad days.
But today, a day that started out bad became good as I wrote this article because I was reminded of the positiveness of life that exists all around us.
This photo of my granddaughter when she was ten shows what life is all about.