Alan Kyle

I like to be busy, so after I got the shocking news that I had MS at the age of 35, it was another 12 years before I gave up my job as a consultant project manager.

I’m Alan, born and bred Glaswegian. I’ve got three kids and I live with my wonderful mum, June, who is my full-time carer. I want to tell you how Leuchie’s broad approach to respite care goes beyond its’ walls, to improve the lives of its guests, like me, long after returning home.

Before my diagnosis, I travelled regularly to Libya for work. In 2008, I went there for a week and, when I woke up the morning after I arrived, my body from the base of my neck to my toes was red hot. I felt like I was on fire. I thought it was strange but dismissed it as a reaction to jags I’d had a few days before. When I got home, I took another attack. The doctors thought I’d had a heart attack or a stroke but, by Christmas, I’d been given the devastating news that I had relapsing remitting MS. Over the next four years my condition rapidly worsened until, on Christmas day 2012, I sat down after my meal and couldn’t get back up. I never really walked again.

I tried to live on my own for a while but, when it became unmanageable, I moved in with mum. She does everything for me and, although a trooper at 76 years old, it’s getting a wee bit much for her now. That’s the last thing I want. I want to enjoy time with my mum without feeling like a burden.

We keep as busy as we can. We take our Golden Retriever, Libby for walks every morning and I get into town as much as possible. I kept working until two years ago, when I felt I just wasn’t pulling my weight anymore and couldn’t justify it. My MS was making it harder to concentrate and I was working weekends to catch up. To lose my career of 25 years was like pulling away a security blanket.

I had to start thinking about the future. Mum desperately needed a break and I needed to do something to keep myself active mentally and physically. A colleague had told me about Leuchie a couple years before, so I decided to try it out.

Respite should be for people who want to live their lives

I admit when I first came to Leuchie I was nervous, but within an hour of arriving, I was quite at home. The team are patient, friendly and skilled. Leuchie has all the comforts you need, which is important when you can’t do much for yourself. The best part is, while I was there, mum was able to catch her breath and spend time with my sister and her friends.

There’s something for everyone at Leuchie, whether an after-dinner quiz, live music or getting out and about in East Lothian. For me the highlight of my stay was trying out the enabling tech with help from the digital team. Using voice commands to turn lights on and off, open and close curtains, or control the TV may sound simple, but constantly asking someone to do these things for you is annoying both for you and your carer.

It was amazing to have the opportunity to try things out for the first time and see the difference it will make for my mum and I at home. So much so, I’ve had something similar installed since returning from my last break!

A brighter future for people with neurological conditions

Leuchie offers much more than ‘just a break’ to people living with neurological conditions like MS, MND, Parkinson’s and stroke. Their nurses, carers, physio, OT and the digital skills team are committed to getting to know you and your condition over the long-term, to identify and resolve issues before they become debilitating.

Like me with the tech, you are given all the tools you need to live with your condition in the way you want to, while relieving your carer of some of their responsibilities. This holistic approach is a clear way to empower people with neurological conditions, like me, to live more independently, so it’s surprising that Leuchie is the only place like it in Scotland. Without Leuchie, my only option would be an ‘old folks’ home and that’s just not for me, or for others who want to keep living their lives to the fullest.

The future looks brighter, knowing my stays at Leuchie are going to help me transition to the “new normal” as my condition progresses. With huge pressures on our care system, and little or no support in the community, Leuchie’s essential when the need is at its most urgent. That’s why your gift, no matter how small you may feel it is, will give hope to people like my mum and I, so we can focus on enjoying our lives together.

Thank you,

Alan Kyle
Leuchie Guest