Please excuse me if this is long and wordy, but I have no one to tell this to.
I am Bruce. I am 61 years old. I was officially diagnosed with PSP on June 19th of this year. I had come to the conclusion that I had PSP 2 years earlier when I was 59. But we’ll come to that later. First, let’s back track to Thanksgiving weekend 2013.
My wife of 24 year picked my 58th birthday to inform me that she wanted a divorce. Talk about your Black Fridays! It wasn’t totally unexpected. We had not been getting along for a while. She wanted stability, someone to take care of her and our 4 kids, then ages 24, 21, 17 and 15. I told her that the two of us could expect to work until we die, no retirement for us. I am 7 years older than she is, and she didn’t like this idea one bit.
Now, we will move up to just before New Year’s Day 2014. I am buzzing along, high on anti- depressants and anti-anxiety meds. I am moving out of the house, and eliminating things neither she nor I need. Like a king size bed. While my 24 year old son was moving the box springs to the donation box, I decided to slide the mattress to the end of the rental truck. I started to tug on the mattress while moving backwards. Needless to say, I could not stop and wound up on the pavement with a king size mattress on top of me. This is my first recognized symptom of PSP.
Continuing into early 2014, I began to notice that at work I had to hold onto the rail on the stairs to keep from falling backwards, particularly when I was going up the stairs. My handwriting has gotten so small that I could not read it. Add this to my poor work ethic, being strung out on the meds, and I lost my job on August 20, 2014. As it turned out, this may be the best thing to happen to me during this time. I was priced out of the anti-depressant and anti-anxiety medication dependency. I enrolled in AHCCCS (Arizona Health Care Cost Containment System, my state’s answer to Medicaid.) This meant all new doctors. By this time (January 2015) I was tired of falling all the time and being sent to physical therapy because I have 2 discs out of place in my back and my knees hurt all the time from falling. I asked my personal doctor why I kept falling. An MRI showed no signs of a stroke and my doctor sent me to a neurologist. After a battery of tests, the neurologist sent me out for a DAT scan.
The DAT scan came back as “probable Parkinsonism” and my neurologist told me it was most likely “a-typical Parkinsonism”. A short search on Google told me that PSP was probably the diagnosis that I would be given. And then, my neurologist changed his affiliation, and I could no longer see him. My new neurologist was, in my opinion, afraid to give me a definitive “You have PSP”. This cost me my application for disability and the appeal. In March of this year, I went to motion specialist neurologist. She agreed with my assumption, and after a few tests, told me that, short of an autopsy, she would tell the Social Security Board that I have PSP.
Backing up a bit, I was without work from August 20, 2014 until October 19, 2015. Turns out that my former employer had marked me as ‘ineligible for rehire’ which ruined my chances of finding a decent paying job. So I went from $52,000 a year to $20,000 a year after taking about the only job I could find. I had lost my car during my unemployment period, and I currently walk just under a half-mile to catch the bus, and a further ¼ mile from where the bus drops me off to work. And then, after 8 hours, I get to go home in 100+ degrees F heat. To say the last 20 months have been difficult would be an understatement! I had hoped to continue to work until my youngest child is out of college a no longer in need of Dad’s help for college loans. I’m afraid that I will wind up a semester or two short of that.
So, why this last 4 years life story? Well, everyone here appears to have a care-taker. Since May of 2015, I have been staying in a bedroom of a friend’s house. I pick myself up when I fall. I am afraid that one day, I will fall and if my friend is not home, I won’t be able to get up! My youngest two kids are away at college, the oldest child’s girlfriend has 2 kids and is currently pregnant with my first grandchild. The other son has moved to Florida. My wife (I am Catholic, and I still consider her my wife, although we’ve been divorced for over 3 years) has a new boyfriend. He is a great guy, and I hope the best for them. But right now, I feel so lost! I didn’t ask for this! I don’t want to be a burden to anyone! What's a boy (old man) to do?
Thanks for reading this, if anyone made it this far! Humor is about the only thing that keeps me going, besides wanting to see my first grandchild in April!