“I used to have such a responsible job - I worked 12 hours a day, 7 days a week. Then suddenly I had so much time on my hands. I found it really difficult.”
Harish Davda, 67, was diagnosed with Motor Neurone Disease (MND) in 2005. He was forced to give up work and struggled with his diagnosis but says LOROS has helped him adjust to his illness.
“In 2005, I was working at Walkers Crisps in Leicester, in charge of the production line, about 82 people - a really responsible job, when I developed a pain in my shoulder.
“We had a physiotherapist at work so I went along and asked them to take a look as I just thought I’d pulled a muscle. The physio said my right shoulder looked smaller than my left one, and suggested I went to my doctor who referred me to the consultant at the hospital.
“He examined me and told me he thought I had Motor Neurone Disease but he couldn’t confirm it.
“I was signed off work whilst they did tests but because I didn’t have a diagnosis my work were asking me to go back. They didn’t understand - and neither did I, I was really shocked.
“I was put in touch with LOROS and spoke to one of their MND specialist nurses. She was really helpful and arranged for a letter from the hospital to outline I had a neurological condition, suspected MND, and I should not be working.
“It was a difficult time. After 6 months I still hadn’t had got a firm diagnosis, it was still suspected MND.
“Finally the diagnosis came through and I was given early retirement on medical grounds. I was told I had about eighteen months to live and that not even a miracle would change it so I should get on with doing what I wanted to do.
“I remember telling the LOROS MND nurse that I couldn’t really believe it as I felt fine. ‘there’s nothing wrong with me’ I said. I don’t accept I have MND.’ I still find it hard to understand.
“I went on lots of holidays with my family - I went to Cuba, the Dominican Republic and Turkey.
“My family was really struggling with the diagnosis. My daughter who was 16 at the time, said, ‘you won’t be at my wedding’. I said don’t worry, I’ll be there. I didn’t believe it you see. It was a really difficult period.
“But in fact 18 months later I was still here. My MND wasn’t progressing fast which was great news.
“I used to have such a responsible job - I worked 12 hours a day, 7 days a week. Then suddenly I had so much time on my hands. I did find it difficult. I loved doing DIY. I used to drop my grandkids at nursery. I fixed broken things. Suddenly I was at home helping my wife doing the cleaning. I was used to cleaning factory machines - now I was looking under work surfaces and kitchen units instead of machines. My daughter in law loved it as I was so thorough!
“I’ve been coming to LOROS Day Therapy for 4 or 5 years now. I see consultants and occupational therapists. I find them very helpful.
“I get a lot of aches and pains and a few years ago I pulled a muscle in my leg. It was very painful and I couldn’t walk. LOROS MND nurses helped me get a bed downstairs in my living room and chair for my toilet. It took a long time to improve but eventually it did with physio and massage.
“I’ve had some falls and that really knocks my confidence. Last November I fell down about 30 times, so now I always use an electric wheelchair and a wheeled frame. The LOROS nurses tell me I have to keep walking or I will lose my confidence even more. They push me and I push myself too. They keep telling me I can do this.
“My hands don’t work so well and I can’t write anymore. But when I come to Day Therapy I really enjoy the art therapy. I do a bit of painting and concentrate really hard on writing my name. My fingers get tired but it’s good for me and I can write a bit when I try really hard.
“At Day Therapy I can have a massage which really helps my aches and pains, as well as talk to a consultant. I was sleeping all the time and the LOROS doctor prescribed some medication which is really helping me not to fall asleep during the day.
“I feel really supported by LOROS’ MND nurses, and my family do too. They speak to them regularly about my condition as I’m hard of hearing and sometimes I miss things. We’re all very grateful they’re here for us.”