From Sydney to Scotland; Frank shares his MND story

Frank Lyons' diagnosis with MND has seen him move his life from Australia back to Scotland. He shares his personal story with us.

From Sydney to Scotland; Frank shares his MND story

Posted : 23/04/2017

We’ve been speaking to Frank Lyons, 63, who has shared his personal MND story with us.

Born and raised in Hamilton, it was nearly ten years ago, in 2007, that Frank decided to make the move 'down under' to Australia with his wife Rebecca. Based in Sydney, Frank worked as an executive manager in the Housing Association sector, where we worked to deliver more affordable housing.

He said, “My sister moved to Australia in 1981, and my daughter, Ruth (38), moved in 2006. I have other Australian relatives from my great grandmother’s side, who emigrated to Australia in 1925. So I have always wanted to go to Australia."

“In 2007, Rae [Rebecca] and I were sponsored to work in Australia. While we did not expect to stay forever, we did stay much longer than originally planned. But Scotland will always be home and I decided I wanted to return permanently earlier this year, to spend the rest of my time with my friends and family; my son, Francis (36), lives in Scotland.”

It wasn’t until late 2013 that Rebecca became concerned when she began to take notice of changes in Frank.

He continued, “My wife first noticed my speech was slurring… and I was having difficulty swallowing. Soon afterwards a neurologist told me that I had had a minor stroke. I saw a speech therapist, but after several months there was no improvement and I started to lose weight. I then saw a new doctor, and he referred me to the Brain and Mind Institute at the University of Sydney."

“We do not know what causes MND, but I think stress played a role. The final six months of 2013 were overwhelming. I found out my brother had cancer a year before I was diagnosed, and around the time I started showing symptoms. Also in the same month I found out that I would be made redundant before Christmas. My brother then passed away in December. I was, however, then lucky to start with a very supportive employer, in April 2014.

“When told the diagnosis in September 2014, we were about to visit Scotland for my son’s wedding. My doctor later admitted that he nearly didn’t tell me the diagnosis before we left. But confirming the diagnosis gave me the chance to tell my children. It was such a struggle to have to tell them. We did not tell anyone else until after the wedding, but many friends could see that there was something wrong.

“After the diagnosis, the only thing I could think of was that most people with MND last between two and five years. I felt like giving up. I told my wife that ‘we are going home’. I suppose I took the same view as my brother had when it became clear that his chemotherapy was not working: he stopped treatment to spend his final time with his family.”

Frank retired in January 2016 because of his illness and he and Rebecca moved back to his hometown, Hamilton, in April 2016 so they could be with friends and family during this difficult time.

“At the beginning I struggled to listen. I was in shock. My wife and I have never experienced any major illness, and there is nothing I can do to get back to how I was. I am challenged by the necessity of adapting to a new lifestyle and taking new medications. Sometimes I agree to try a new drug or a new way, but then I give up. The deterioration of my speech, combined with my difficulty swallowing, lack of appetite and large weight loss, at times make me question ‘why am I doing this?’ Nothing will actually make me better.

“I have technology to help me speak, which is good, but it is not the same as talking. It can be exhausting. I can use the iPad, but it is not the same.  This just depresses me at times. MND is more variable than I thought possible, and no one else experiences it in the same way.

“The first time I couldn’t swallow it was very scary. It happened in the middle of the night, and I could barely breathe. I don’t like going to restaurants any more either. I can’t eat the food – I’ve had to spit it out in the past – and I have no appetite. And I can no longer enjoy a Guinness or a gin and tonic.”

“It has been very difficult for the whole family, especially with one child in Sydney and one in Motherwell. For my family dealing with the impact and then the decision to come home was really challenging.

“Just before I moved back to Scotland I got in touch with MND Scotland, which really helped in putting my support and service plan together, so I had everything ready to go when I got here. I have also received a grant from the charity to help upgrade my wet room and purchase a new bed which can move to provide the correct support for me, and the team helped us gain access to the welfare and benefits we were eligible for.

“People have a negative perception of MND. I am normally a positive person: you can’t just sit in the dark the entire time. But there are dark days. I get frustrated. I think that is selfish. But living with MND is hard. I have no motivation to do anything, and although I know that is so hard on Rae, I struggle to change. They say very few people with MND live for ten years.

“Although it has been an extremely difficult journey I am more positive than I was and have settled back into life in my homeland.”

On the future, Rebecca said, “We don’t talk about it. There is no cure, so we focus on managing each day. But we have to look at the dark side. We need to talk about a carer’s plan, our future lifestyle, and Frank’s wishes.”

Frank added, “I have a terminal illness for which there is, at this stage, no cure. I have to deal with it, but I am trying to do it my own way. My life is at an end, but it has been a good one.”

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“It has been very difficult for the whole family, especially with one child in Sydney and one in Motherwell. For my family dealing with the impact and then the decision to come home was really challenging.”

Frank Lyons

Frank Lyons

MND Scotland is the leading charity in Scotland providing care and support to people affected by Motor Neurone Disease (MND), as well as funding vital research into finding a cure.