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.
So am I going to return to the office when things return to normal? “normal?” what's that?
After a year of working from home, this is my normal now. I rather like it. I like sitting in virtual meetings with my cat on my lap and my German Shepherd lying next to my desk. Of course, I am conscious that with an empty London office there are people who support that office life such as restaurant staff, cleaners, electricians, security, car park attendants, taxi drivers, train drivers, etc. etc. Many of these people will not have a normal to return to. There will still be many people who will want to ‘escape’ back to the office. Those who have been working perched on a stool in a busy family kitchen and surrounded by bored children or those who have moved into their garden shed to work. Some will be missing the camaraderie of their colleagues and the social aspects of office working. But me? No. I am doing just fine in my home office.
Another problem I had early into the lockdown was not being able to get supermarket shopping delivery slots. I was shielding, not just for me but for others in my family, but despite having PPMS I didn’t qualify as vulnerable according to the government definition. Supermarkets were using this list to determine who gets priority. But then one day we got an email from our usual supermarket to say they had added us to their vulnerable people list. No idea what caused this change. Maybe our usual delivery driver noticed our deliveries had stopped and tipped them off? Maybe there is a smart algorithm out there that joins the dots. Whatever it was, we were able to get food again.
Having PPMS, I don’t have any drugs or treatment. I just have an annual Neuro appointment. We call this the “Are you still alive?” appointment. Well in 2020 this was “postponed”. My 2021 one is about due anytime now. I am not holding my breath.
I have never met my Neurologist nor have I met my current GP. My driving licence is up for medical renewal which is why I had to check who my healthcare professionals are.
So what for the future? Well, hopefully nothing really changes for me. Maybe my company will realise the huge savings of having a remote workforce and perhaps everyone, like me, is being far more productive working from home. And maybe the company realise that a remote workforce doesn’t need to be in this country, oops!
And my plans for the future? Well I like to challenge myself. It’s why I started horse riding, why I started dressage and then archery. All very physical activities. PPMS put a stop to them but I am glad I experienced them. I gave them my best shot but I am a realist. I can only take them so far. Vintage watch restoration is something MS can't stop. I love doing that. I won that battle. I can strip a 1940’s watch down, replace a broken mainspring, clean it, reassemble it and have it working, perhaps for another 80 years.
My next physical challenge is to play the violin. My grandfather was a violinist. His grandfather was a violinist before him. I however, have all the musical accomplishment of an angry wasp in a crisp packet. I have no strength in my left arm, limited dexterity in my left hand, but again I will give it my best shot. The violin is a hard thing to play. They say that all the very greatest violinists started out playing badly so I am off on the path to greatness.
It’s not all about MS. You might notice I talk about hobbies a lot. They all have something in common and it has nothing to do with MS. They are not just challenges to see if I can beat MS. I have spent 34 years working with computers all day and I love having hobbies that don’t have anything to do with computers.
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