In November 2017 after years of apparently unconnected medical problems I was finally diagnosed with a rare degenerative neurological condition called Multiple System Atrophy or MSA. I had suffered from problems with my bladder and bowel as well as episodes of fainting and developed a noticeable tremor. I saw lots of doctors, specialists in all sorts of areas, without any success; I was starting to think that I must have done something really awful in a previous life! However, early in 2017 at the suggestion of some medical friends for the first time I went to see a neurologist who gave me an initial diagnosis of Parkinson's disease but said that it might also be a rather nastier condition called MSA (trust me this is the only time when you will hear the words ‘I really hope it’s Parkinson’s’ spoken with the utmost sincerity). As there is no definitive diagnosis for MSA and as some of the symptoms are similar, an initial diagnosis of Parkinson’s is not uncommon. I started on some treatment but there was no apparent improvement in my condition, and so at the urging of my mother (mid 50s and still doing what my mother tells me!) I went to see a professor at the National Hospital for Neurology and Neurosurgery in Queen Square, London. The professor was pretty blunt and told me it was indeed MSA and, of course, when I looked up the condition it became clear that my symptoms matched many of those described. MSA is caused by degeneration or atrophy of nerve cells in several areas of the brain. This can result in problems with movement, balance and autonomic functions of the body, the things we do without thinking, such as bladder and blood pressure control. In other words messages are sent from the brain but not received properly. 

As my condition has advanced everyday things have become much more difficult so that I am now reliant on the family to do most things for me. Whilst I am experiencing a range of symptoms, control of my blood pressure is perhaps the most significant because it has a tendency to crash meaning I am at risk of collapsing almost at any time. This is in part why I am largely confined to a wheelchair that can recline, as it helps maintain a more stable blood pressure. I am getting quite good at recognising the signs of an imminent crash but the family are still used to seeing me with my eyes rolled back and body completely limp. My personal best, albeit in hospital while undergoing some tests, was 44 over 29 which is spectacularly low. The wheelchair is also essential because mobility is one of the things that has slowly but steadily deteriorated so I can no longer walk unaided or any real distance. However, although not always possible, I am still trying to walk a lap or two a day around the courtyard in front of our house but I am reliant on a walker to hold me up and am followed closely by a member of the family with the wheelchair in case of collapse. 

A diagnosis of MSA is to have drawn a very short straw indeed as the condition affects only one person in more than 20,000 so you can see why even among medical professionals it’s relatively little known. In the past three years I have spent quite a bit of time in hospital or at one off appointments seeing specialists and having tests so we can learn more about the condition and what medications might help to control the symptoms. In addition to the fact that no one knows what causes MSA, let alone what the cure might be, no two cases are the same. We don’t all have the same symptoms and we don’t progress at the same pace. The only certainty is that sooner or later (and we are going for much much later!) I won’t be a survivor, simply because there aren’t any. So here I am sitting in the departure lounge without knowing where the gate is or what time the flight will be called. Really you'd get more information from Ryanair!!

The MSA Trust is the organisation that supports people with MSA and helps fund research into the condition. Whilst I am able I would like to raise some money to support their essential work. In a shameless copy of Captain Sir Tom I am proposing to walk a total of at least five kilometres around the courtyard by my 59th birthday in April. A circuit of the courtyard is a bit over 42 metres and so I am looking at at least 118 laps (rather neatly 2 per year) which feels like a hell of a lot from where I’m sitting (ie in my wheelchair!). Thank you for reading my story and any donations you feel able to make would be greatly appreciated.

Richard