Thursday 21st June is Motor Neurone Disease Global Awareness Day, and LOROS Hospice is marking the occasion.
Motor Neurone Disease (MND) is a life limiting progressive disease for which there is no cure. It affects the brain and spinal cord, attacking the nerves that control movement so muscles no longer work.
LOROS cares for around 60 patients and their families each year living with MND across Leicester, Leicestershire and Rutland. Its specialist team of dedicated physiotherapists, occupational therapists and MND nurses support patients in their homes to manage their condition and live their lives as fully as possible.
Jo Joyce, MND Nurse Specialist at LOROS, said: “Raising awareness of Motor Neurone Disease is really important because it is a less well known condition. Many people know nothing about it until they or a family member or friend are personally affected.
“As well as offering home visits and clinics, LOROS hosts a patient support group which is run by MND patients for MND patients. It’s held monthly and people can be sociable, have a coffee, swap ideas and tips on living well.
“It’s great for people living with MND; its empowering and helps them focus on the positives.”
Dad-of-three, Harish Kumar Davda, 65 from West Knighton, was diagnosed with MND in 2005. It was a huge blow to his family who had recently witnessed Harish’s dad die from MND. Harish said: “I was at work when I started to get pains in my right shoulder. I asked to see a physiotherapist about it because the pains and stiffness didn’t go away. After a couple of tests they told me that I might have MND.
“My dad had died not long before my illness, of exactly the same thing, so when I was told I had MND too, I was in denial. I just couldn’t believe what the consultant was telling me. “My children, who were teenagers at the time I was diagnosed, cried because they thought I wouldn’t see them get married.
“I told my kids to keep their hearts strong, I try to keep my children positive and happy.” Harish says that the on-going support he receives from LOROS Hospice is invaluable to him. “The support from LOROS is priceless, they help arrange everything for me.
“A physiotherapist and complementary therapist help manage my mobility, keeping my joints flexible and I have a specialist MND nurse who manages my care at home.
“I have also received counselling, because I was very depressed around December last year. The counsellor helped pick me up at a time when I felt very low. They were there when I needed them.
Harish who is now a grandfather-of-four says he doesn’t know what the prognosis is, but feels very fortunate for the time he’s had so far.
“I feel lucky that I am still surviving, at the moment I am mobile with aid, which is good. I don’t know how long I’ll live for, no-one knows.
“The main thing is I managed to see both my sons and my daughter get married, which was important to all of us. I’m pleased I made it. “
To find out more about the care that LOROS provides, visit loros.co.uk/care
