I am often asked how I deal with my disease. If I was smart, I would tell people to watch me deal with it. It would save a lot of explanation. But the talker in me goes on to explain, “one day at a time”. As I said in a prior post, this disease is often frustrating because you never know what’s going to come next. Good days, bad days, in-between days are all unpredictable and can’t always be swayed by doing the “right thing” – whatever that is. My top rule is “listen to what your body is telling you”. Rest if you have to. The chores will get done sooner or later.
Oh yes… “HYDRATE,” yell Annie and Lisa every day. (I’ll introduce you later… for now just know that each plays a key role… and that might be their top reminder.)
But I think for now I need to introduce you to Paul.
Unfortunately, Paul passed away in 2010 after a battle with cancer on top of PD. I knew who he was for many many years as we were in the same church on Sunday mornings – usually at two different services, however. But it wasn’t until about 2005 that we really made the connection through our mutual friend, Jason, with whom at the time I did a radio show. That connection led to a few years of discussions between our respective services about radio, his engineering career and some projects around the church building.
Did I mention… Paul could fix just about anything? He patched up the church phone system – and taught me about phone wiring. All I remember about it is “Christmas Trees and Buzzing Bees” as it referred to the red and green wires twisted together and the black and yellow wires twisted together.
He wired some remote control devices for the microphones in the sanctuary and, after ordering a replacement mic for the altar, cursed the person who had painted the previous one for aesthetic purposes. “You don’t put paint on electric devices,” he said, “No matter what you do to prevent it, it will always go where you don’t want it to go and it will ruin the wiring!” Such was the case here.
Paul kept up with his gardening on days that were hotter than you-know-where. His secret: “the bucket of weeds”. “Take a 5 gallon bucket and fill it,” he’d say, “when it is filled, that’s when you stop for the day and you’re not under obligation until tomorrow.”
He was always doing “engineer” things with computers and phone systems and other electronic gadgets. I would watch him in awe as he fixed or built whatever it was he was working on. The countless hours he would spend at the church attempting to save the place money on things was incredible. “Here,” he’d say carrying a CPU, “here’s a computer I put together for you out of spare parts I had lying around. It’s not the most up-to-date but I hope it will help you get by until you can get a new one.”
There was one time that he asked for each phone number that came into the building – two church lines, one preschool line, and a fax line. Within two days he had a four page report on how to program the phones so that one of the two lines became the money spending line (in other words it was used as the primary dial-out line) and combine the cost of the other two phone lines and completely omit the fax line. He also worked up the best deal possible with the phone company and was there the day they came to install everything – including high speed internet which he managed to follow the pre-existing wiring around and figured out how to hook the entire building up to the network. Seriously, he could do ANYTHING – and with an abundance of patience and a scosche of frustration.
It really didn’t matter what the project was nor if you asked him to do something, if Paul saw it he would fix it. Most of the time, I was his trusty assistant. On the occasion I would help him I would witness him working through the tremors that were sometimes “show stopping”. He never seemed to mind if I would subtly offer my help in the control of a computer mouse or device he obviously couldn’t control at that moment. We had a silent understanding that I would help in those moments where he needed it.
Our friendship was somewhat brief, but it was meaningful. I merely thought it was due to our common bonds in broadcasting at the time. But it has become much more meaningful since. Paul was a prime example of what someone LIVING with Parkinson’s Disease should be.
The theme most Parkinson’s organizations and doctors continuously promote is “Keep Moving” and that means exercise. Admittedly, it’s not one of my favorite things to do in a disciplined and/or deliberate manner. But I consider a daily routine – getting up, going to work, etc. etc. definitely helps.
As I mentioned earlier, Paul died in 2010 of an unrelated illness. It was three years later that I began to notice the similar tremor in my right arm that I witnessed him dealing with when we would do things together. At the initial diagnosis in 2014 – exactly 4 years TO. THE. DATE. after his death – I truly wished I could sit down with Paul and ask him, “How in the hell did you do it?”
How do you work with such precision on things like phone wires?
How do you control the mouse on the PC when you need to?
What if I have more than a 5-gallon bucket’s worth of weeds in a day?
I have mentioned to a select few (and now to you) that I frequently “channel” Paul. While I still question the validity of communicating with deceased loved ones, I do believe that your heart and mind can make the connection through memories and the notion of “what if” – what if that person was here, what would he/she do? I suspect Paul would agree with that. I also wouldn’t be surprised if he was sporting his eye twinkle and half-grin as he guides my hand over the computer mouse and keeps the work from stopping.
Our friendship on earth was brief, but certainly meant to exist.
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