John Peters was diagnosed with PPMS 15 years ago. In this blog he tells us about his diagnosis, how his working life changed during lockdown and how he'll be quite happy not to go back to ‘normal'.
Back in the '80s as a teenager, one of my hobbies was long-distance walking. I gave this up in my twenties as it was becoming a bit of a struggle. It sounds ridiculous but I was thinking I must be getting too old for it. Of course now with 20/20 hindsight I can see what this was. Roll forward to 1990 and you find me working in the financial centre of London. Commuting by train and then a ten-minute walk to the office. I was starting to find this walk was taking me longer and longer. I would often trip up and curse the state of London paving.
At the same time my hobby was classical dressage. I had got into horse riding and bought myself a lovely Hanoverian mare. Neither of us was very good at dressage. I found she often didn't respond properly to the signals from my heels (for those that know, she would often start on the wrong canter-lead). My next horse was a Danish Warmblood, a proper dressage horse. He taught me dressage. He was perfect... except he would often start on the wrong canter-lead. Aha! Now, who was the common link in this? Yes, him in the saddle.
Meanwhile, back in the office, one day I was sitting in a meeting staring at my shoes (like you do) when I noticed the toe of my left shoe was so much more badly scuffed and dented than my right. That's odd I am thinking.
Then one day in 2006, out of the blue, I lost the central vision in my left eye. Panic. I take myself to Moorfields eye hospital. They do loads of tests and then I find myself sitting opposite a top eye doctor. Surprisingly he says he has no idea what's wrong but in his experience, this sort of thing just sorts itself out after a few weeks. I go away and sure enough in a few weeks, it sorts itself out. With that 20/20 hindsight, I believe he knew exactly what this was. Optical Neuritis, but he didn't want to suggest MS based on one temporary symptom.
A few months later, and this may sound daft, I suddenly realise that I can't lift my left foot up behind me, like you are checking your shoe for something you might have stepped in. So with this and the bashed up left shoe I take myself off to the company private doctor and ask him why can't I lift my foot up. The doctor sends me to a physio who examines my leg and determines that there is nothing wrong. He sends me back to the doctor. The doctor then sends me off to a neurologist (I am guessing he too had a fair idea of what this might be). Now, this neurologist is apparently brilliant but he confused me. I went to him with a problem with my leg but he was more interested in my earlier sight loss. Then he did a whole load of tests most of which didn't involve my leg. Finally, he sends me off for an MRI ‘of my head!' Now I am not a medical man but the problem is with my leg!
The next day (I did say this was all private) I return to the neurologist with my MRI scans. He flips through them, pulls out one, studies it and declares his diagnosis of "Probable MS". So what is MS I ask? (I did say I am not a medical man. I had no idea what MS was at all. Microsoft perhaps?). He explains it to me. First I have heard of it. He did say it won't kill me. He warned me to be careful of what I read online and suggested a couple of trustworthy UK organisations I should look at for information. A few weeks later he sends me for another MRI and shortly after that he advises me of his diagnosis of Primary Progressive multiple sclerosis.
So how did I feel about this PPMS diagnosis? Well, relief actually. Now I have an explanation for all the odd symptoms I have been accumulating over the years. It was not a brain tumour or a stroke or cancer or any of the things I, and my wife, had worried it might be. It wasn't going to kill me, as long as I am careful of where I fall.
The heavy feet, the heel signals to my horse, the tripping, the bashed up shoe all arrive at the destination "foot drop". This is made worse with chronic fatigue. Later a dull permanent pain in my arms and legs. Later still, the tripping becomes simply frequent falling over. I start using a walking stick and later still, when out of the house, a powered wheelchair.
The fatigue is starting to win the race to be my worst symptom. Not only does it slow my movement but also seems to slow my thinking.
I started working from home one day a week on Wednesdays, then the fatigue was getting worse so I started working from home two days, Tuesdays and Thursdays. Later still I am working from home three days, Mondays, Wednesdays and Fridays. And finally, we get the pandemic and my company tells me to just stay home completely. A week or so later they instruct the entire global company to work from home.
Now we have a year in lockdown. Most people have had three lockdowns but I had only one. A whole year long. I am fortunate in that I don't get out much anyway. My hobbies have changed again a few times since my diagnosis. I took up archery with some success until I found I couldn't hold the bow up well enough. Then I took up vintage watch restoration. I am still doing that. This hobby and working from home full time has really helped with my fatigue. Sitting at a keyboard and talking over Webex and zoom and a hobby involving repairing tiny mechanical watches has pulled the teeth of the fatigue MonSter.
