Husband to Margaret (53) and dad to Lynsay (27), Andrew Kennedy and the family were left stunned in March 2017 when they learned of Andrew's diagnosis, which would see him give up his job and his love of playing sports, due to the progression of his illness.
MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided.
Before the effects of the illness began to interfere with his work, Andrew serves as an engineer in the Roads Department of South Lanarkshire Council for 32 years.
He said: “I loved my job and the team I worked with. I stayed on for four months after I was diagnosed until June, but my disability meant it became unachievable for me to carry on. I was heart-broken.
“The hardest thing to cope with is I have been really fit and active all my life; playing golf, football, and rugby, and my passion of following Scotland football team with my Tartan Army friends all over the world has come to an end.”
Andrew first noticed something was wrong in June 2016 when he lost the muscle power on the right hand side of his body.
“It was mainly my leg that was affected. I went to a doctor and was diagnosed with a stroke in August.
“Things didn’t seem to improve; my right side was affected, my foot had dropped and the physiotherapy wasn’t having any affect. So I went back for more tests and was referred to a neurologist in October. Eventually the following March I was told it was Motor Neurone Disease.
“It was overwhelming at first; trying to take in the diagnosis, the number of hospital appointments for different departments and coping with the number of NHS staff who came to our house all looking for information, but it felt like they weren’t really providing support.”
Andrew's wife Margaret, who is a full-time Regional Director in business banking, is also Andrew’s carer.
She said: “We were in shock and denial. However, Andrew thought it was going to be a brain tumour so we very positively thought MND was a better option and we still remain positive.”
Andrew’s symptoms have progressed significantly over the past six months but the family try to keep a positive outlook on life.
Andrew said: “We remain upbeat and I have registered to take part in an MND research programme. We are trying our best to keep things as normal as possible, for as long as possible. My wife is my rock; taking care of hospital appointments, my care and also still working full-time.”
Margaret added: “We try not to stop doing what we have always done but it is a huge change. Andrews’s mobility is a big factor and carrying wheelchairs and equipment in and out of cars, to hospitals and social occasions is difficult. I work full-time but can be flexible some days and work from home which helps.
“Andrew has difficulty dressing and shaving, however I am becoming an expert and we manage to have a good laugh every day.
“We have a large network of family and friends who support Andrew well. Our house feels like it has a revolving door which is fantastic as it keeps Andrews spirits up, and he loves the great banter.”
Although Andrew and his family have an optimistic outlook, the changes that come with the diagnosis can take their toll.
Andrew said: “It felt like a maze trying to get some improvements and adaptations to our house. The process is too long with too many barriers in place. My wife was almost at the end of her tether and we have decided we can’t wait any longer and will make improvements ourselves. Support from MND Scotland has been fantastic. Colette, their Policy Officer, recently stepped in to help and take some of the pressure off. This has been a big stress as we started the application back in March and people, like myself, with MND don’t have that time to wait.
“I have also received complementary therapy from MND Scotland which is fantastic. It is very relaxing and helps with circulation; my legs and feet tend to go blue and icy cold and the massages help. Margaret also benefits from this service and as my carer I think it is important she has some time out to relax too.
“In addition the charity has provided advice on Power of Attorney, equipment such as walking aids and a grant to allow us to have equipment to enjoy our summer to Majorca. We rented a scooter when we were away which meant our daughter, who had to come along to assist, didn’t always have to push me around in my wheelchair so she had a good break too; this was great and a huge help.”
Since Andrew’s diagnosis, the Kennedys’ family and friends have dedicated time to fundraising for MND Scotland.
Margaret said: “In total so far we have raised £7,500 with the aim of reaching £10,000 by the end of this year.
“We have so many people wanting to help and I advise them the only thing they can do is to fundraise for MND Scotland, to assist others in the same position. Friends at Auchenlarie in South West Scotland held a fundraiser, my daughter did the MND Scotland Holyrood Fun Run in August, my colleagues raised funds on sponsored walks and climbed Ben Nevis and my niece organised a bag pack at Tesco, just to name a few. We have family donating Christmas Card funds this year and sending e-cards instead.
“We’ll keep adding to the pot for this great cause. My hope is to ensure that all who need support receive it and that some of the funds could halt the symptoms, regress the damage or find a cure.”
Iain McWhirter, MND Scotland’s Head of Fundraising and Volunteering, said: “I would like to thank Andrew and Margaret for sharing their inspiring story to raise awareness of this devastating illness, and for everyone involved in raising such an incredible amount for MND Scotland.
“The money raised could help deliver 200 sessions of complementary therapy to help people affected by the illness relax and cope better with the stress of living with MND, or it could pay for a grant to help five people affected by MND meet the cost of essential home adaptations or equipment.
“These funds will therefore go towards helping us continue to deliver vital services to people affected across the country, as well as funding research towards a cure.”
If you would like to help raise awareness of MND by sharing your personal story, please get in touch with Craig Watson and Niamh Callan in the Communications team at firstname.lastname@example.org