Big bro on the right and cowgirl me in the middle, in our entry!

Big bro on the right and cowgirl me in the middle, in our entry!

Not too long ago, a very courageous man, Noel Conway, sought but was not granted, a law change over assisted suicide. He says: “I’m on a slow, slippery road to hell” and who are we to disagree? Everyone’s idea of hell probably varies, and some people may make very different decisions to others when it comes to the point at which life becomes insufferable. Now, another man is seeking help to challenge the law on assisted death. Omid has Multiple System Atrophy (MSA). Please look at his story, and please don’t stop reading at this point.

On my birthday 2015, April 7th, my big brother wrote to me: “I am just a nightmare living within a nightmare”. He, too, had MSA, this same progressive disease with no cure.

 

In October 2015, as many of you will know, he, my one and only sibling, died. He was taken way too soon, at 61, but at the right time in terms of his condition which would deteriorate drastically. I’d known him for 56 years, which is a long time in anyone’s book.

This blog post gives a good indication of how much worse things would have become for my brother had his heart not given up the struggle sooner. I’m now obviously still sad he passed but glad he did not have to go through the worst of this condition. He was already choking when eating and struggling with so many aspects of normal life. He had been a successful man, hard working and devoted to his family. His slow demise was not fitting. He wasn’t happy with what was to come.

Steve’s little-known condition called Multiple System Atrophy (MSA), developed in his mid-50s. I know most people don’t have a clue what it is. It was a new one on me, too, so I thought I’d explain because it is another one of those cruel neurological diseases one hears about, which has no hopeful prognosis.

Fortunately for me, it is random, which means I may not get it. Unfortunately for the world at large, it is random, which means any of us could get it. Scary. The NHS describes it factually as follows:

Multiple system atrophy is a disease of the nervous system that leads to premature death. It results in parts of the brain and spinal cord gradually becoming more damaged over time.

It also causes a gradual loss of brain cells from the autonomic nervous system – the nervous system in charge of automatic functions we don’t have to think about, like breathing and bladder control. 

My brother was spared some indignity, but it was hard for his family (luckily, he had an extremely caring one) to watch his increasing mobility problems and loss of speech. Breathing also became difficult until, one day, it was obviously too difficult. Basically, the autonomic nervous system is shot to pieces, so things like huge drops in blood pressure on standing up would mean continual falls and daily struggles.

The brain cells of a person with multiple system atrophy contain misfolded alpha-synuclein protein (of which there is lots of in the brain). It’s thought that a build-up of abnormal alpha-synuclein is responsible for the loss of brain cells. Multiple system atrophy is estimated to affect around 5 in every 100,000 people worldwide. There are almost 3,000 people in the UK living with the disease.

The MSA Trust adds: Parkinson’s disease is about 45 times more common, affecting about 200 per 100,000 in the UK. MSA does not appear to be hereditary although current research is examining whether or not there is a genetic predisposition to develop the disease. The importance of environmental factors is not clear and there is still much to understand about the condition. We do know it is not infectious or contagio

Bro and I during his illness - me supporting him to stand

Bro and I during his illness

us and has no connection with the much more common neurological disease, multiple sclerosis (MS).

2014-04-23-17-56-17

My bro in his prime

You can see that my brother, who had previously seemed to lead a relatively charmed life (largely, it must be said, due to his own efforts) was extremely unlucky.

My brother did not have a rip-roaring rock and roll lifestyle, but he went out as often as he could, celebrated every moment, enjoyed every opportunity. I remember his occasional bursts of honesty in the later days when we mainly communicated via Whatsapp as ‘phone was so difficult for him, and to be honest, I struggled to understand him. His cognitive function was fine, but he could no longer verbally articulate his thoughts to communicate to others.  We used to chat football via Whatsapp, so obviously, that was the topic of our last conversation the day before he ended up in the hospital.

We discussed Jurgen Klopp, and how he would be good for Liverpool. Every time Liverpool F.C. does well under Klopp’s management, I think of my brother.

Less than a week later, after lots of medical interventions throughout which he never regained consciousness, he was gone.  I’m glad I was able to be at his side during that week and when life support was finally removed. He had a lovely send off, but to extend a footballing metaphor, people shouldn’t have to wait to be ‘sent off’ unless they wish to.

Anyway, back to the disease. MSA is a progressive neurological disorder affecting men and women, caused by the degeneration (atrophy) of nerve cells in several parts of the brain. Researchers are trying to find a cause and one day, a cure, rather as with dementia, something with which my family is also terribly familiar.  It used to be called Shy-Drager syndrome. The MSA Trust works to raise awareness of this rare condition, as I am hoping to do here.

Bro keeping an eye on me - with weird hair - at the front

Bro keeping an eye on me – with weird hair – at the front

In reality, if anyone you love sadly develops this condition, it is a death sentence. It will also probably take a good deal of time to be diagnosed (about two years in my brother’s case) because of the gamut of tests needed. It isn’t hereditary, it isn’t dementia. The person remains fully aware of their deteriorating condition. I’m not sure if this is a good or bad thing, but when nothing else is left, it seemed positive that my brother still had clarity of thought and could plan ahead. We expected to get another couple of years from him, although knew the condition was progressing fast and that deterioration was accelerating.

 

My brother was spared the indignities of incontinence and tube-feeding, but those are the only positives, to be honest. He had a fantastic sense of humour which only dropped occasionally. After his memorable comment, he went on to last another six months

My big and only brother was an absolute pain when I was younger; he tormented me half to death as big brothers do, but I miss him. I really feel for Omid and anyone else with this awful condition, and hope his fight for help is successful because none of us can know what kind of hell he is going through.

Meanwhile, keep going, Klopp, because when Liverpool do well, I feel my big bro might just be watching and smiling.