Joan (73), who grew up in Donaghadee in County Down, Northern Ireland, married a local businessman in 1965. Due to the troubles in Northern Ireland at that time, Joan and her late husband, decided to move to South Africa to raise their children, John (52) and Gary (49).
Joan worked for the air force as a tradeswoman, which was an unusual job for a woman at that time. She said “I was the only woman working there but I loved it. Especially working with the choppers, fixing the tails. I did a good job and I got accolades for my work.
“I met Nelson Mandela through my job, because he flew out of our station. A lovely man. They actually used my footstool to help him onto the helicopter – I’m sure no one else can say that!”
Despite MND having an average life expectancy of just 20 months, Joan has been living with the condition for almost 30 years. It was 1991 when, at 46 years old, she first realised something was wrong.
“I was falling all over the place so I went to the doctor and told him I was feeling wonky. At first they thought it was vertigo because I was dizzy and falling backwards, and looked drunk.
“I also had arthritis in my hips so I got those replaced. It was only when my doctor asked why I was still on crutches that further investigation started. He said I should’ve been off my crutches a while ago, and after some tests he sent me to a neurologist. I was in hospital for three or four days having tests done before I finally got my diagnosis. They tested for different things, even MS, and said it had to be MND because they’d eliminated everything else.
“When the doctor told me it was MND he said ‘There’s nothing we can do for you’. He said I probably had about five years but for some reason I never really believed him. Maybe it’s because no one had heard of MND back then, I just didn’t think it was really a thing.
“People know more about it now because of people like Joost Van der Westhuizen, the South African rugby player, who died of MND. Raising as much awareness as possible is really important.”
In 2000 Joan decided to stop working because her deterioration was making it too difficult to continue.
She said “I went on medical leave for a while. It was really tough leaving because I loved my worked but it just became too physically demanding. I also felt very guilty. There were unfinished jobs and I felt bad for not staying on to do them.”
In 2001 Joan moved to Scotland because her son Gary and his family relocated to Coatbridge where Gary’s wife is from originally.
“I stayed in South Africa for a year after Gary left but I missed him and my grandkids terribly. He joked ‘You better get over here and mind the kids for me’. So I did; I moved in with them and helped look after the kids. I’m also glad I moved as I’ve gotten to see them grow up into wonderful people.
“When I came to Scotland I had to go through tests again and they came to the same conclusion as the doctors in South Africa; Motor Neurone Disease. That is when I first met Laura, my MND nurse. Laura is fantastic – I love when she comes to visit and always helps me in any way she can.
“Now I live on my own, but Gary is still just around the corner and we’ve done a few things to the house over the years to help me. I have a button that I press to open my front door and a ramp outside my house to get in and out more easily. I use a walker to get from A to B. Once I got this I got so much more of my independence back. I want to keep walking for as long as I can but I know I won’t be able to forever, and will eventually have to use my wheelchair full-time. I recently had a fall on holiday and again at home, so I’m not as steady on my feet as I used to be.
“I can feel my arms getting weaker and I can’t lift them as high as I used to but I try to keep exercising them. My voice is starting to become affected as well, but I certainly exercise that as much as possible,” she joked.
Joan is a keen traveller and hasn’t let her diagnosis get in the way of trips to Quebec, Malta, Budapest, Istanbul and many more. Recently she went on holiday to Majorca and used an MND Scotland Time Out Grant to help her do so. The charity’s grant aims to help give carers and patients a break from their usual routine.
She said, “I’m still going on holidays by myself. When I’m on holiday I hire a scooter to give me the freedom to get out and explore– I would be lost without it. I love cruises because I can scope out where’s best to have my next holiday! One place I’d still love to go is Graceland. I am such a huge Elvis fan, so if they’ll let me travel that far I will go.”
In the face of the on-going and progressing challenges Joan faces in her life, she still remains positive and lives life to the fullest, as best she can.
“I want others like me to know you don’t have to wallow in MND. If life gives you something don’t sink down low. Live your life while you can. I am lucky to have been able to live my life the way I have. I feel so sorry for the young ones as they might not get that chance.
“You know; it does get me down sometimes but I’ve done a lot with my life. My view is that you’re put on this earth to do a job, and once you’ve done it, you go. It doesn’t matter what it is. I still don’t know what mine is, or why I’ve lived with MND for so long, but maybe it’s sharing this story and raising awareness of MND.”
Craig Stockton, MND Scotland’s CEO said, “I’d like to thank Joan for bravely speaking out and sharing her story and the challenges she is facing. Joan has been able to live a long life, keeping much of her own independence, but unfortunately for most, this is not the case.
“MND Scotland is here to help every family in Scotland affected by MND through financial, emotional and practical support. We also fund vital research which is taking us a step closer to a cure. If you’re currently affected by MND please get touch by calling us on 0141 332 3903, or by emailing firstname.lastname@example.org.”