Susan, a former administrator at Action for Children, was diagnosed with MND – a terminal illness which stops signals from the brain reaching the muscles – just 17 months ago. MND can cause someone to lose the ability to walk, talk, eat, drink and breathe unaided.
Susan met her husband, James (67), in 1969 and the couple married on 9th October 1971. They have two children, Andrew (43) and Fiona (40) as well as four grandchildren, Sophie (10), Ailsa (10), Duncan (8) and Jessica (6).
Susan and James’s lives were changed forever in December 2015, when the doctors confirmed with Susan that the diagnosis was MND.
Susan said, “It took nearly two years to get it diagnosed. It started with me dropping my right foot, which led to me tripping and falling a lot.
“It has progressed very quickly. I’m now unable to walk, I have very little use of my hands and arms and I have breathing difficulties.”
Due to her progression with MND, Susan has lost a large degree of her independence. She has had to give up driving, which she has found extremely difficult, and has also had to be fitted with a feeding tube.
Susan explains what the other main challenges of dealing with MND in her daily life have been.
“People don’t know what to say to me. I think, ‘It’s okay, you can speak about it.’
“I know I’m not going to get better, but I’m quite positive about it. I still go out with my friends, but I get tired.”
Susan regularly attends MND Scotland’s support group in Inverness, one of many which take place across the country, and is supported by her husband, her son and daughter and her closest friends.
The support group provides the family with the opportunity to catch-up with other families affected by MND in Highland, share experiences and hear from specialist speakers.
Two of Susan’s close friends, Dot Cuthbert (67), a retired NHS professional from Inverness, and Susan MacKenzie (64), a retired teacher from Inverness, accompany Susan to support group meetings and they continue to meet up socially for long chats and afternoon tea. Dot describes Susan as a “giver”, “a doer” and “an organiser”, and reflects on their long friendship.
Dot said, “Susan and I met socially as my late husband and Susan's husband Jim joined the Fire Brigade at the same time and we would see each other at Fire Brigade events. Over the last 44 years our friendship has developed and we have shared holidays, meals, days out and we have become very close friends.
“We first noticed Susan's symptoms in 2013 when she had the odd fall for no reason and then in March 2014 we went away for a weekend and I noticed she was climbing the stairs sideways and one step at a time as she couldn’t get her foot flat on the step.
“I had heard of MND at this point but not for one minute did I think this would be Susan's diagnosis; I had thought maybe she may have MS.
“My reaction was of total shock and devastation.
“Susan coped very positively with her diagnosis, but because her life has been so active and busy up until recently, it must be very difficult for her to accept the quality of life she has now.
“Her condition seems to have developed quite rapidly and since November 2016, it appears to have worsened. It has been difficult watching Susan turn from a very busy and active lady to someone who has become dependent on others in every aspect of her life.
“Susan is my dearest friend - we tell each other everything and have shared many happy and sad moments throughout our friendship. I think of her as my sister.”
Susan MacKenzie said, “I met Susan well over 50 years ago through the church we both attended. We went to the Girls’ Guildry, now the Girls’ Brigade, Sunday School and youth fellowship. Over the years we have become very, very good friends. When the children came along they called me ‘Auntie Suz’ which delighted me. Susan has always included me in family gatherings.
“Susan has a wonderful strength of character. From the outset she was determined to try and lead as normal a life as was possible. Her thoughts are for everyone else and how they are coping.
“She amazes me every day with the way she has dealt with this devastating blow. Susan was always so active; it must be terrible for her now to see her independence being taken away. She still likes to get out and about, although this is becoming more difficult
“I try to visit Susan every day just to pop in for 15 to 20 minutes. That is enough now as her breathing requires her to be on the machine more frequently. It’s difficult knowing a special friend has a terminal illness. We’ve had our moments together but on the whole I try to remain upbeat for her sake”
Despite how quickly Susan feels her MND has progressed, she remains thankful for the time she feels she has been given to prepare for what lies ahead.
She said, “I’ve tried to deal with it all very positively. I try getting on with life and try to live it as we did before I was ill, although this is now getting much more difficult.
In some ways, I’ve been given a chance to prepare for the future.”
This MND Awareness Week you can support our Thunderclap campaign which will post a message of support on your social media pages and you can update your social media profile picture with our ‘Twibbon’. You can also donate to MND Scotland below or donate £5 by texting CUREMND to 70660.