MS: Many Stories – From the MStranslate Community

Welcome to part 1 of a series of articles being written by MStranslate community member, Andrew.  You may recognise Andrew from a video we featured in late 2016, introducing the potential benefits of pilates for people living with multiple sclerosis.  If you missed this feature, it can be revisited here.

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A year ago I met Brett Drummond. I liked the concept of MStranslate so we sat down in a coffee shop for a half hour meeting that extended into nearly three hours. During that discussion the topic turned to Pilates and how I had used it to help recover from an attack that, without treatment, would have killed me.

I told him how totally reliant I was on the care and kindness I had received from my Pilates instructor, Sarah.

As a form of exercise Pilates was not new to me. I had been doing it for eight years through a procession of different instructors before Sarah lifted it to a higher level over a two year period. Pilates is not a cure for MS, nor does it try to be. It is, however, a different way of exercising as I will explain.

Brett has asked me to write something as a prelude to a half hour video we filmed last July being released. A fragment of it was shown some months ago. He did a good job but I told him bluntly that it was a “feel good” video because it didn’t show people with MS how to use Pilates to improve their situation. I believe it can and the full video will show how I use it and what it is like to integrate Pilates into your normal life. I don’t want it to be about generalities because specific ideas are what we crave. In these notes, if I speak in specifics it can only be based on what I have experienced. Hopefully some of what I have learned overlaps with what is of use to you.

The tragedy of most articles about MS is they speak in generalities. Either the author is a researcher who cannot process what it’s like to walk in our shoes or the writer has MS and talks in generalities because the technicalities are beyond them. In both cases it’s easier to allude to something than it is describe it.

Not all attacks are the same.

There are chatrooms where people interested in MS have exchanges. The unstructured conversations cover those who think they might have it to old hands who share a range of ideas about how to approach symptoms and treatments. They are unbelievably varied but a lot of symptoms are pretty standard.

My first attack in the early 1990s followed a fairly standard path. I had assumed I was a bit tired, assumed everyone else was the same as me and thought I really needed a good holiday. To feel better I had joined a gym to be a bit fitter. I was not a health junkie.

One night I could not lift the weights, felt dreadful and went home early. The next morning my left foot flopped around when I tried to walk and I assumed I must have pinched a nerve. Later that day double vision arrived and I knew something wasn’t right. Without all the details, I was diagnosed, given IV cortisone and told to go away and wait for the next attack. There was no other option.

I did, however, learn one thing from the old neurologist who saw me that is true right to this day. He said, “What you will learn is ideas about MS are like a ball on a pendulum. Sometimes it swings far to the right and then far to the left. The truth is probably somewhere in the middle.” That’s always true so don’t become dogmatic about treatments, how you feel now or your future. That swinging pendulum represents a series of guesses. Don’t get hung up on it.

Further relapses made me eligible to try the “wonder drug” Avonex. As it was so new there was no understanding of it, what the side effects were or even why it was supposed to work. It represented the first big medical guess that I had been exposed to and it wasn’t funny. Each injection meant three days of agony and it did nothing to arrest a cognitive and physical decline. The view of neurologists at that time is the problem was “genetic” and nothing could be done about it. Avonex was the gold standard treatment but their descriptions of how it worked could now be categorised as complete rubbish. In the land of the blind, the one eyed man is king. They were Kings and I was blind.

I found a pathologist who agreed to test me for any bug ever associated with MS. He found Chlamydia Pn, an air borne pathogen sometimes nicknamed walking pneumonia. A GP treated me for that with Rulide and Minocycline. I still didn’t improve.

Later as a guess, the GP treated me with 2x500mg daily of Valacyclovir to disrupt any herpes infection such as EBV. Three days later my brain fog cleared and, to his amazement, I began to report how much better I felt. I basically stuck to that for a further 15 years and stayed well. I was always a bit stiff, particularly in my hamstrings, but basically led a normal life with occasional symptoms. I considered myself “cured “and basically stopped the valacyclovir. I stopped the Avonex some years earlier.

I had started Pilates around 2002 and loved it so much I just kept going.

The first period was tough, particularly due to Avonex. That sort of attack is a gradual decline into a period of fatigue and disability. Some things arrest it but don’t really stop it. I did recover but I don’t think I would have given up valacyclovir if I could do it again.

The second really big attack was in September 2014. It was quick and completely different.

My left hip became stiff and sore. I could feel muscles pulling in my stomach and side. The discomfort was distracting but fatigue wasn’t a major noticeable effect. My bowel oscillated between constipation and being almost uncontrollably loose. A band of tightness began to envelop my chest. My stomach muscles started to spasm. In front of the mirror they looked like I had become “ripped” but it didn’t feel very nice.

Work colleagues started commenting how grey my face looked. The condition got worse; I couldn’t see what was on a computer screen, I couldn’t hit the buttons on a key board or dial a phone number. Reading became impossible as I couldn’t comprehend what I was trying to read. When I stood to walk my body felt it wanted to go a different way to my minds direction so each step became a shuddering internal fight. About a week before I took myself to hospital an almighty thud hit my chest. Later I learned that my heart was functioning on only two chambers. I must have been a dangerous driver by this stage as I could hardly move.

I tried to shake all this off, assumed I would be normal and life would return to normal. However, normal was toxic; my workmates were callous and my family was indifferent. My wife met both descriptions. I now never want to be normal again.

I took public transport to hospital. They took one look at me and put me in Cardiology. The MS was secondary.  Fortunately, my heart could be restarted. There were no blockages, it wasn’t damaged but they needed drugs to keep it that way.

The hospital found me a neurologist and again I was hooked to an IV cortisone drip. After a week, he stood beside my bed and said “Now we need to take you to rehab”. “Why?” I asked. He answered “Because you can’t walk”. It dawned on me that he was right.

My MRI told the technical picture-

‘Spine -“multifocal T2 hypertense lesions within the cord especially C2/3, C7, T8 vertebral levels. These findings are in keeping with primary demyelination. No expansion of the cord. Background minimal multilevel degenerative changes within the spine. “

Brain – “Multiple periventricular, subcortical white matter T2 hypertense lesions with some of them showing central cavitation/necrosis. Some of the lesions in the periventricular region are orientated perpendiculary. The right posterior periventricular lesion shows minimal restricted diffusion. A few T2 hypertense lesions are also noted within the pons and the left middle cerebellar peduncle. No infacts or haemorrhage. No hydrocephalus.
Conclusion – Multiple T2 hypertense lesions within the cerebral white matter and supratentorially are likely due to primary demylination, Some of the lesions show central cystic change/tumefaction. These lesions have progressed when compared to the previous study from June 2011”

So I was not a well boy but I knew I was in the right place. What I didn’t know was what happened next. In some ways I didn’t care. A whole cycle of my life was over and I didn’t miss it. What mattered now was finding a new way, finding who mattered in life and why.

A great adventure lays itself before you when you see the challenge before you. To understand your own body and its metabolism is the most thrilling preoccupation. It is a long haul. Understanding fatigue and how your muscles work is the key. Perhaps when Brett publishes the video you will see there is a way back. Next we will talk about fatigue. It’s hard to exercise when you feel like you are made of wet cement. That feeds into why muscles are tight and what to do about it. Again, it’s hard to move when the muscles don’t cooperate. Understanding these concepts makes Pilates an obvious part of recovery and that is the fun part.