Thursday, 10 May 2012

Keeping it in the family

My Mum has had MS for all of my life.  She was diagnosed when she was in her mid twenties two years before I was born.  This was the early 1970s before anything was really known about MS and she endured years of uncertainty with no definitive diagnosis and some quite shocking attitudes amongst the medical profession. She was told by more than one Doctor that it was ‘all in her head’.

As I was growing up I was always aware of my Mum’s illness – it was an ever-present niggle in an otherwise happy childhood. We did normal family things – picnics, walks, trips to Frontier Land in Morecambe, and not so normal things – displaying the dug up skull of our long-dead cat (which my Mum had “put through the dishwasher” to clean).

Mum and Dad on their wedding day
For the most part life was pretty normal but every now and then MS would suddenly rear its ugly head and the “niggle” would quickly transform into fully-fledged fear that Mum was really ill; sometimes in my more melodramatic moments I thought she might even die. My sister and I were little domestic goddesses in training – we learnt to iron, cook and clean.  I could cook a mean Findus Crispy Pancake by the age of 10. We didn’t resent it, it was our normality and I think it has stood us in good stead for the rest of our lives.

Mum generally endured the MS relapses with dignity, grace and humour.  She was strong for the rest of us. She was the one I went to with my teenage angst problems. My Mum was, still is, beautiful.  She was the coolest Mum in the playground. I remember feeling really miffed at 14 years of age when the waiters on holiday flirted with her more than they did with me. I am not bitter about this. She was a M.I.L.F., whereas I had a flick so covered in hairspray that the whole thing would lift in the breeze, and a mullet that Billy Ray Cyrus would have been proud of.

Nonetheless, life has been hard for my Mum, especially the last ten years.  MS can be a cruel disease and in her case it has ultimately robbed her of her dignity.  This is painful enough for us, the people who love her, to witness. So what it must be like for her is almost too horrible to contemplate.  She can be stroppy and difficult, but I think even Mum would admit that she could be a bit stroppy and difficult long before MS took away the power in her legs. On the plus side, Mum has lived, until relatively recently, a good life.  My sister and I both live close by, she has enjoyed her grandchildren, she has a lovely home and most importantly she has a husband by her side who loves her more than anything in the world.

In some ways having a Mum with the same disease as me has been a positive thing - there was no fear of the unknown. When I was diagnosed, I didn’t jump to the conclusion that many newly diagnosed people do…that my life was over.  I learnt from her that I could face this illness and live a normal life for most of the time.  In my darker moments I sometimes dare to compare myself to her.  Were her symptoms worse than mine when she was my age?  What was she still able to do at my stage of life?  My gut feeling is that I have less long-term damage than my Mum did at my age. Plus in 2012 I have the added advantage of access to a large body of research, treatment options and real hope that a cure may one day be found. 

So, looking to the future, what about the risk MS poses to my own children? According to research done in 2007 there are certain genes which can be inherited, genes which work to increase susceptibility to MS by about 30%. This might partly explain why MS sometimes appears to run in families. Obviously I want to do everything I can to prevent my children developing the disease and thankfully there does appear to be a cheap, simple and relatively effective way to minimise the risk… Sunshine!   Studies of the distribution of MS around the world show that it is generally more common the further you are from the equator. This suggests a link between lack of exposure to sunlight, consequent lack of vitamin D production and the development of MS.  Great news if you live in southern Spain but a bit crap if like me, you live in one of the rainiest parts of one of the rainiest countries in the world.  Luckily you can also get your daily dose of Vitamin D in the form of a supplement, which I give to my children on days when the sun isn’t shining.  I also take a Vitamin D3 supplement as research has also shown that it may help to cut relapse rates in MS sufferers by as much as 40%.

So I am hopeful that the MS part of my genetic inheritance is something that will not proceed any further along the family tree.  If only Vitamin D would help with the genes which control Dad’s receding gums and Mum’s eye-bags…

1 comment:

  1. More please - people really need to talk about it, compare notes, treatments and experiences. MS can be very different for different people. I am sure a cause will be found one day - then, if you know the cause, it makes it easier to both prevent and treat.