This is a subject that I have not really spoken about in length to many people in public as there seems to be a kind of taboo attached to diseases like this and I suppose it is difficult for people to broach the subject when they meet people affected. For a while I thought, 'I don't want people to see me like this' but after a while you realise that you have to just get on with it. Another factor is that it is such a common disease in this country and most people don't know about it and that is strange, as it is so common. People say things like ' do exercise' and 'lose weight' etc... Well, I had these comments before I was diagnosed with MS and they are fair points where I am concerned!
There are many theories as to what causes MS but no-one really knows and it has affected athletes, musicians, construction workers, office workers and all kinds of different people from all walks of life.
seems to have an extremely high number of people with the disease and it seems to be prevalent in the Northern hemisphere but also recorded in high numbers in places like Scotland Sardinia and . It is a neurological disease not a muscular disease. Anyway if anyone is interested here is my short story. (It wouldn't be anything else eh!) Australia
I was diagnosed with MS in 2004 after experiencing lots of different symptoms in the two or three years leading up to my diagnosis like, severe tiredness and falling asleep more easily with more severe symptoms in 2003 like loss of strength in my hands and leg with numbness etc. After a trip to a neurologist at the Southern General Hospital in
in early 2004 and after having all the relevant tests like MRI scans and needles in the spine (spinal tap) it was confirmed by my GP who said over the phone 'do you want the good news or the bad news!' I can't remember what the good news was! Glasgow
I had a few relapses over the last few years mostly affecting my legs but have also had loss of power in my hands two or three times which is not great when your hands are your livelihood! I had a relapse with my MS in November 2007 while in
and it was downhill for six months after that, steadily losing the ability to walk. First I started using a stick to help me walk then, a crutch until I had to start using two crutches.I started on a new treatment called Tysabri (Natalizumab) in March. It took about three months to be approved for this treatment as it was only licensed in Ireland fairly recently. It has been in use in most other western countries for some time already. I had experienced loss of strength in my hands and lungs and was generally weak overall, which stopped me playing the pipes and flute for the most part of 2008. Since the new treatment kicked in, about four months after starting it-which by most accounts is the pattern, I have improved quite rapidly. After hobbling around on two crutches for the last few months I can now walk without them, at least only using one when I have to walk any distance and it feels like a great achievement. I still have severe numbness from midriff downwards with the legs being worst and a few other symptoms but at least I can move around and 'do' things. Scotland
I must say, the care I have received from the MS team in the Southern General Hospital in
has been fantastic, especially my consultant Dr Overell, Lynn & Mhairi (MS nurses) and all who work in these wards. Glasgow
The most important part of my life really is the support I have had from my family, especially my wife who has had to cope with an awful lot with amazing strength and love and the great friends and neighbours in the community where I live who have offered and given us help, often just turning up and doing things to help without being asked.
I played at Celtic Connections early in 2008 and that was the last public playing on the pipes that I did until the Blas Festival Gigs with my brothers in September 2008. It feels great to be able to play again. Since then I have done various gigs around the country and am just back from
where I was teaching flute & pipes at Ireland . At the end of November I did a great UK tour with Limerick University John McCusker's 'Under 1 Sky' which I enjoyed very much.
I played on Neil Johnstone's 'Suite for Alan' his piece of music that he wrote in memory of his brother Alan, who died in his early 20's. His father Duncan wrote the Pìobaireachd 'Lament for Alan my Son' and the piece has the theme of this beautiful and sad tune running through it along with many of Duncan's great tunes interspersed throughout. It was performed at 'Piping Live' in August 2010 and we toured the Western Isles and Skye in 2011 to advertise the CD, which we had recorded in March 2011.
I had just suffered my last relapse before this tour and had to do the tour in a wheelchair. Not the best experience of my life but it was tour with wheels or no tour at all! This turned out to be one of my last major performances playing flute as what has happened since, is what I have been dreading for a long time and that is to lose the use of my hands playing music… My hands have now become so numb that I can't play flute any more. I can play whistle but it is a bit of a struggle…it's a combination of memory and sight to keep the fingers in the right place! Its really just getting used to the instrument again after a change so I can still do it and managed to play a couple of gigs at Celtic Connections 2013.
I have continued to play and travel although I tend not to do too many trips away. For the last year I have had a busy teaching schedule between the college in Benbecula and working at Ceolas. I have had a few set-backs with the MS with the gradual onset of more numbness making it a bit more difficult to move but I have to keep going.....
There have been a few gigs over the last year or two but not as many any more as live performing is not something I am too confident with any more. The last major gig was at Celtic Connections in January 2015. This was with ‘The Bruce’, a commissioned piece by my brother Allan which he wrote for the Bannockburn celebrations in June 2014. We had a full pipe band on stage with 40 plus musicians making up the Orchestra with many well-known names in the Scottish Music world. Neil Johnstone arranged the music and the debut of it in June was fantastic and quite emotional. Dàimh supported the Bruce at Celtic Connections and they played great as always.
I have recently come off the medication (Tysabri) which I had been on for the last 6 years. It did work for me at the time but was always nervous about the side-effects, one of which is a brain infection; Progressive multifocal leukoencephalopathy (PML) is a disease of the white matter of the brain, caused by a virus infection that targets cells that make myelin--the material that insulates nerve cells (neurons). Polyomavirus JC (often called JC virus) is carried by a majority of people and is harmless except among those with lowered immune defenses. Unfortunately I am an the high-risk group as I am a carrier of the JC virus so after 6 years my consultant suggested it be wise to come off it. The longer one is on this drug, the higher the risk. I am now on a drug called Figolimod or Gilenya. It is supposed to be less effetive than Tysabri but with less risks although there are other risks and other side effects...