MULTIPLE sclerosis (MS), a neurological condition that damages the nerves, affects more than 100,000 people in the UK. One of them is Janis Winehouse, mother of the late singer Amy Winehouse.
Janis (64) experienced her first MS symptoms nearly 40 years ago but wasn't diagnosed with the disease until 2003, eight years before her daughter died of alcohol poisoning at the age of 27.
As part of of MS Awareness Week (April 22-28), Janis has been named as an ambassador for the MS Society (mssociety.org.uk). Here, she opens up about living with the disease, which hasn't stopped her being active and remaining mentally alert, although she's had to give up work, suffers from fatigue and walks with a stick.
How would Amy react to the way you're coping with MS and becoming an MS Society ambassador?
"Amy would have been incredibly proud and supportive. She was always worried and concerned about my health, so to see me this far along and still going, she'd think it was a real achievement."
When and how were you diagnosed with MS?
"In 1980 I started to have tingling in my hands and feet. I was given an 'it may be MS' response from my doctors, so was very worried as I was aware what MS was and how it could possibly impact my life.
"I had no further episodes until 2003. After a viral infection I was hospitalised for a week after getting dizzy spells, and that's when I had an MRI exam and it was found I had lesions on the brain. It was then finally confirmed that I have secondary progressive MS. I was very relieved, as I knew what I had and could start to live with it and deal with it."
How did you cope initially?
"My son Alex was born in 1979 and after my first MS episode I was told it would be better not to have any more children. It's different now, as having MS shouldn't stop you having a baby, but such is my positive nature that Amy arrived in 1983.
"That's been my outlook ever since – one of positivity and that life is there to be lived. Although I was given lots of advice both from doctors and well-meaning friends and family, I decided to just carry on and live my life. I have so far been able to manage the day-to-day symptoms."
How does the condition affect you now?
"People think I have Parkinson's or that I've broken my leg – MS is the last thing they think of. When I tell them I have it they take a short intake of breath and say how sorry they are for me. Why are they sorry?! I just carry on as I am."
How has your MS changed since you were diagnosed?
"I have slowed down a bit. Mentally, I'm fine. I have slight problems with my cognitive responses, but my walking has deteriorated by 50 per cent in the last 10 years. It's the biggest inhibitor of me getting around, but I'll do everything to stay out of a wheelchair. I absolutely do not want to use one – we don't even own one.
"I get by using a walking stick, Richard's arm [her husband] and occasionally the wall at home. I also push the trolley when we go to the supermarket. I make sure I walk down every aisle. It's exercise and it makes me happy. My main symptom is having constant fatigue. I'm a very, very active person, but feeling tired means I have to be active in spurts. "
Can you work?
"Sadly I was forced to stop working in 2009 due to my lapses in concentration when I was driving – I worked as a locum pharmacist, so driving was essential. I also found it difficult to cope with the constant fatigue. At the time it was heartbreaking as I'd lost my total independence as a person and was becoming reliant on others. It was a huge lifestyle change and challenge."
Do you take more exercise and eat a better diet since you were diagnosed?
"I try to do as much exercise as possible. My week is filled with activities – I go to an MS therapy group twice a week, I'm a regular at a weekly swimming class. I also have physiotherapy and never miss my weekly local yoga class. They teach Hatha and I've been going for nearly 40 years. Amy even used to say, 'Mum, do you want to teach yoga?' but I just want to practise it.
"I try to eat a balanced diet, plenty of fresh veggies, fruit and little red meat, but I am susceptible to the odd lapse – I do like chocolate Mentos, and I'm also partial to a nip of Limoncello."
Do you get down about having MS?
"I do have down days, you can't not. But the positives always outweigh the negatives. If you're not positive, you'd curl up under your duvet and close the world off. Richard and I live our life."
What would you say to someone newly diagnosed with MS?
"It's not the end of life – different, yes, but please don't give up. Embrace the condition, work with it, and don't be afraid to ask for help. MS symptoms can be invisible, so you must let co-workers, family and friends know as much about your condition as you can, so they can understand your needs and help you live as normal a life as possible. Do what you can and be positive. Having MS is not the end – there's so much more you can do."
What would finding a cure for MS mean to you?
"I'd go and play football... for England! I used to play in a girls' team and was a reasonably good athlete. A cure would also mean we'd get out and simply walk. We'd climb mountains, run and jump. We'd visit our favourite parts of Italy – Mount Vesuvius and Pompeii. They're just impractical for us to go to now. A cure would be better than winning the lottery."
