Why can’t I finish this sentence?

There are some strange things with Parkinson’s—in fact, that is the understatement of the century. One of the strangest, and for many including me, the first, is hand-writing. I suddenly had the realization that I could start a sentence and by the time it came to word 5-7 or so, I simply couldn’t keep up the activity, and the words would trail off into illegible lines. I honestly thought I was going mad. I kept asking myself – Why can’t I finish this sentence?

It started with writing in my notebook but happened soon after when I was facilitating meetings in the office at the whiteboard, and people noticed it too. I was literally writing as I have done for 40+ years (something that becomes second nature), and people were staring at the whiteboard wondering, “What is he doing?” People started to say, “Can you write bigger?” and we joked about it. I think someone said, “Why don’t you try with your other hand?” Crazy!

I remember vividly looking back at the picture of a whiteboard I had written on a little while before on a business trip to Salt Lake City and NY, which was completely ‘normal’. Like all people, I self-diagnosed myself with Carpal Tunnel. Why? No idea. I had just seen someone with it who had one of those dressings/covers on it, and I made 2+2. Turns out that although a CPA, I was pretty way off with the calculation.

This all happened over a few weeks as I got a very quick diagnosis. I had not heard the word Parkinson’s in my context (or maybe I don’t remember it), but I never once thought Parkinson’s. Once the doctor left my bedside having given me the diagnosis, I obviously went to the real doctor—Dr. Google—and sure enough, it was there in black and white: “small, cramped handwriting—called micrographia—is characteristic of Parkinson’s and is frequently one of the early symptoms. In addition to words being generally small and crowded together, the size of your handwriting might get progressively smaller as you continue to write.”

And my handwriting has never gotten better despite a lot of Occupational Therapy in the early years. Truth be told, it is not a much-needed skill, but when you have to send your kids a typed note that starts (I pulled this copy and paste from the birthday card I wrote my 15-year-old daughter 2 weeks ago): “I am finding handwriting hard at the moment as you know, so I just wanted to send you this message.” The most basic thing! A birthday card to your child!!!

The second time it came home to me is when someone I gave a charity donation to (by check) told me the bank had rejected the check. That had NEVER happened to me, and I was really gutted. How? My signature was not recognized. Why? They showed me a photo of the check—it was tiny. It was insanely tiny – and I didn’t for a second notice.

The third time was when I had to sign a work contract. I signed and looked at the second person’s signature. It was five times bigger than mine (ok maybe three times) and it wasn’t mine that was normal.

I have gotten over these events and have found workarounds—and thankfully, we live in an age where it is possible to get around it (although there are many days when typing is difficult and times when it is not possible, and I have to use dictation). Being a nerd, I rank my symptoms on a spreadsheet I keep (template here). I give writing a 1 out of 5 on the degree to which it bothers me.

On reflection, however, a few things are highlighted from the writing symptom:

How PD can be denied, ignored, left unchecked for so long—it is subtle and on its own can be simply ignored. In fact, it almost makes you want to dismiss it as ‘silly’. You can even question your own sanity.

The mix—It is part of the story of PD—multiple small and ever-growing symptoms which mix together. Many of them, like writing and lack of smell, are manageable, but when you add it to loss of balance, freezing, tremor, no sleep, it punches you in so many ways.

There are, however, countermeasures—on the bright side, and this is my philosophy and approach—it is what it is, and it can be addressed. Whether it is by voice text, a bank transfer instead of a check, a nicely typed and illustrated card—we can deal with it—it is whack-a-mole on a major scale. The answer to the question Why can’t I finish this sentence? Not true – you can. Just in a different way.

It is amusing to think, in summary, that all my young life I had the ability to physically write, and I hated writing. Now I no longer have that ability, and I love to write. It is really a strange but at the same time sadly humorous world sometimes. As the famous Monty Python said, “Always look on the bright side of life”—not always easy and often hated as a phrase by me—but as I ‘write’ this, it is oddly resonant.