Washington DC

Saturday 2 July 2022

"We're with The White House. We're returning from the G7 in Germany."

"So they fly you on British Airways rather than Air Force One?"

"We flew out on Air Force One but President Biden went on to the NATO summit in Madrid, so we peeled off to return to DC."

I didn't have anything remotely as interesting to say to the two thirty-something guys standing next to me as we waited for the shuttle bus to take us from the gate to the main arrivals building at Dulles International Airport.

"Well I'm just here as a tourist for a few days. I've been to Washington before, but only briefly, so I really wanted to see the US Capitol, the Smithsonian museums and so on. My wife has some friends who used to live here and has already been a few times, so I decided to come on my own."

We then got into a brief conversation about the Air and Space Museum before the shuttle bus arrived.

The bit I didn't say was before it's too late. The 8 hour flight squeezed into an Economy seat was pretty uncomfortable, and eating lunch had been a particularly tricky - and messy - affair. No doubt it will be even worse on the overnight return flight. But I can still do it and I can still enjoy stuff when I'm here, so I'm making the best of it before I inevitably get to the stage where long haul travel is no longer viable.

Travelling with Parkinson's does have its challenges. Often it's the little things that are difficult, like fumbling to take off my watch and belt every time I go through the ubiquitous security checks on the way in to museums and other sights, or having difficulty opening a bottle of mineral water. Or having to repeat myself several times because my voice is too soft. I also have to pace myself and not try to do too much, and keep out of the sun as much as possible.

It's been worth it though. In a couple of days I've seen the seat of US government, the largest library in the world, the original Declaration of Independence, Constitution of the US and Magna Carta, the Changing of the Guard at Arlington Cemetery, the impressive National Gallery of Art, and much more.

I have a couple more days here to take in a few more museums and monuments. Enough, I hope, to have something interesting to talk about in case I start chatting to anyone on the way home...

Electric toothbrushes and other gadgets

Tuesday 14 June 2022

I'm surprised I didn't buy one sooner. For the last year or so I've been struggling to brush my teeth. Like most people I brush my teeth at the start of the day and the end of the day, precisely the times when my dopamine levels are at their lowest and my hands barely function. Stoically I continued to struggle twice a day until I finally I had an epiphany: there's a gadget that will do this for me. Now, not only are my frustration levels lower; my teeth are much cleaner too, so the bonus is that the electric toothbrush will probably pay for itself many times over in terms of fewer trips to my dentist.

The so-called honeymoon period of my Parkinson's, where life is pretty much normal thanks to the medication, is starting to fade in the memory. Although I can still function reasonably well during the daytime when loaded up with levodopa, I find myself developing coping strategies for all sorts of things. Fine motor control for things like handwriting is long gone, so the keyboard is now the sole channel for written communication, with the occasional use of voice recognition technology (especially on the phone with its oh-so-fiddly touchscreen).

I am increasingly reliant on a spoon for eating and always now ask for a steak knife in a restaurant as I lack the strength and control in my hands to cut food with a normal knife. Opening a packet of crisps starts to drive me to madness, until I reach for the kitchen scissors. Life is all about these little workarounds: jar openers, zips rather than buttons, slip-on shoes rather than lace-ups, electric razor as opposed to wet shave.

This is now exacerbated by a recent diagnosis of osteoarthritis - my little fingers are crooked and painful as the cartilage in the joints has all but disappeared and the bones begin to grate then fuse together. Like Parkinson's, the exact causes of osteoarthritis are unknown and there is no cure. Unlike Parkinson's, the condition may stabilise of its own accord, as opposed to relentless progression. But then again, it may not. The stiffness in my hips in the mornings might be the Parkinson's or might be the next stage of the arthritis, difficult to tell. Either way, I'll figure out ways to work around whatever happens. And yes, the two things are related. Again for unknown reasons osteoarthritis is more likely if you have Parkinson's.

The good news is that, whilst my body and my ability to control my body continue to crumble, the rest of my brain still works well. And for as long as that is the case, I still have a life worth living.

Parkinson's on YouTube

Monday 30 May 2022

So I read a book about Parkinson's and decided to contact the author with a couple of questions. He put me in touch with a few other people, one of whom put me in touch with another guy who was looking for someone to front some educational videos about Parkinson's.

George has Multiple Sclerosis and set up a non-profit organisation a couple of years ago called LivedHealth to produce patient led information about the disease in the form of videos that are posted on YouTube. He spoke to me about doing something similar for Parkinson's.

To cut a long story short, click here to see the result.

At the time of writing we've produced four videos with four more planned initially. I have to say it's been fun interviewing some leading specialists and I've been super-impressed at the professional job the video editor has done. To be honest I was initially sceptical about the need for yet more on YouTube, but having seen the result I think these will be a helpful resource.

Take a look for yourself and post some comments if you like them or think they can be improved.