For Charcot-Marie-Tooth disease Awareness Month, Margaret shares how the condition has affected her family, mobility and daily life.
“Sometimes I’d fall asleep with my coat on because I couldn’t undo the buttons” – CMT awareness month
At 63, I’ve lived in Belfast all my life, now with my lovely husband John. Between us we have five children, and I worked for the Northern Ireland Civil Service until I was medically retired not too long ago. I’m proud of the life I’ve built, but it hasn’t always been easy.
Getting a diagnosis when CMT runs through my family
Charcot-Marie-Tooth disease (CMT) is very prevalent in my family. Mummy had it, and my sister and nephew have it too. I was diagnosed in 1993 I think, in my late 20s. I was mummy’s carer and used to take her to appointments, which is where I realized I was experiencing some of the symptoms they were talking about, such as tripping, fatigue, and the unusual shape of my feet.
I went to my GP, and he referred me for a nerve conduction test, which was more severe than the genetic testing available nowadays. At first, I didn’t tell mummy because she felt so responsible for carrying the gene, but I soon had to when my condition started progressing.
Balancing family life, caring and my own health
I was a single parent when I met John in 1988, and so was John.
“As my condition progressed, I was bringing up my family and caring for mummy. When I think back, I wonder how I did it, but I guess you just cope when it has to be done.”
Fatigue was a big thing for me and still is. I remember coming home from work sometimes so tired that I fell asleep sitting with my coat on because my fingers couldn’t unbutton it.
I’ve noticed a big change in my mobility in the last year. My feet don’t lift properly and I fall often. I have a rollator, although at first I felt embarrassed and worried I would lose the ability to walk on my own. Now I know it’s about doing what’s best for me on the day.
Fatigue is a strange thing; I can get up feeling as though I could tackle anything, but by the afternoon I just slump and have to do nothing. I used to have access to hydrotherapy which was amazing and really helped. It was so relaxing and I had the best night’s sleep I’d had in years! I’ve tried to access it again recently, but it seems impossible now with the lack of facilities.
Having someone in your corner makes all the difference
Muscular Dystrophy UK has been there for my family since maybe the 1980s, when mummy first received her diagnosis. There’s always someone to contact if you have any questions or need someone to advocate on your behalf.
“Just knowing someone’s in your corner when you need it makes all the difference. I was so grateful when someone from the charity helped me with the confusing switch from Disability Living Allowance (DLA) to Personal Independence Payment (PIP).”
I met Graham from the charity last year at the local neuromuscular clinic, and he’s been helping me ever since. Stairs have become increasingly difficult, so getting upstairs at home now is really hard. I can’t manage them at all without John by my side. I’ve been on the list for a ground-floor property for 11 and a half years, but housing in Belfast is very scarce. Graham found a mistake in my application that meant I hadn’t been categorised as the right priority level. Thankfully, he got the missing points sorted which should help move me further up the list, but it’s not going to happen overnight.
My message for CMT Awareness Month
Sometimes people look at me and say, “Oh, you look okay.” But then they see you fall over and they change their stance. CMT isn’t always obvious, which is why awareness matters.
To others with CMT, I want to remind everyone to look after yourself as best you can. Looking after your health is really important, so keep your physio appointments and rest when you need to. It’s about keeping going and doing things at your own pace. Get out in your community, socialise and talk to people. I go to bingo and all sorts of community classes, and live life to the full.
