This is a post which first appeared on my Ms-D site. It is hard to write about something personal without growing over-sentimental, but it quite often needs doing. In such situations, there is much to be said for combining fact and feeling…
In October, my big brother died. He was taken way too soon, at 61. I’d known him for 56 years, which is a long time in anyone’s book.
He had a little-known condition called Multiple System Atrophy (MSA), developed in his 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 contagious and has no connection with the much more common neurological disease, multiple sclerosis (MS).
You can see that my brother, who had previously seemed to lead a 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, about whom my brother held high hopes. 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.
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. For those not wishing to send Christmas cards this year, but to give to charity instead, please consider this one.
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 a 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.
From the website, it is true that:
Multiple system atrophy (MSA) is a rare neurological disease that leads to premature death – it causes brain cells to shrink resulting in severe problems with multiple bodily functions. People with MSA often end up in need of 24/7 care, doubly incontinent, and in some cases unable to communicate, swallow or move.
Some people with MSA say it feels like the disease traps them in their own bodies.
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. He did once describe his condition (on my birthday, actually) as being “a nightmare living within a nightmare”. How I wept that day. He went on to last another six months. He had, as they say, a good send off.
My big and only brother was an absolute pain when I was younger; he tormented me half to death as big brothers did, but was also thrilled for me the day I passed my 11+ exam and urged me to steam open the envelope so Mum and Dad wouldn’t know I’d done it!
While most days are fine, it sometimes it feels like I’ve lost something special, something I cannot replicate. I’ve had some very empathetic messages from people who have lost siblings. It’s a special kind of loss when it’s someone with whom you have shared your whole life.
I just hope Jurgen Klopp comes up with the goods because whenever Liverpool score, I feel my big bro might just be watching and smiling.