Andrew's story

I’ve worked for 35 years in the arts including as the Director of the Scottish Sculpture Trust and Northern Architecture. My wife, Elizabeth and I have been married for 40 years and we have two children, David and Catherine, and three young grandsons. About 13 years ago, I started experiencing worrying symptoms, a lack of movement in my left arm and loss of smell. We couldn’t get to the bottom of it but then, in 2011, life took an unexpected turn – I received the devastating news that I had Parkinson’s Disease. Although this was a huge blow, I still managed to do much of what I enjoyed, like cooking, gardening and walking - Elizabeth and I even completed 150 walks around East Lothian in 11 months, totalling over 400 miles!

That same year we received the wonderful news that I had been accepted to have a potentially life-changing surgery called Deep Brain Stimulation (DBS), where they implant electrodes in your brain to help treat movement disorders like Parkinson’s. When I finally got taken in for the operation in 2022, we were excited about what this might mean for our future together. Unfortunately, three days after my operation I suffered a stroke. This meant that it became too complicated to work out which symptoms were due to the stroke and which were still Parkinson’s and, in June this year, I was told by the specialist that they had done all they could for the time being. My physical movement and speech got much worse and activities I enjoyed became a battle.

I became a ‘high falls risk’, meaning I could not be left alone and suddenly our world shrank. Sometimes I find it unbearably frustrating – wanting to do something, but my body simply won’t let me. It has been tough on Elizabeth, too. She wants to help me continue to do the things I love, but I know how exhausting it is for her. We needed support but, with the care system so stretched, we struggled to find anything that would work for us. This was when our social worker told us about the unique (and free) ‘Leuchie at Home’ service that Sally runs.

Sally helps me in the garden, with cooking, going for walks, or with speech therapy – nothing is too much. She brings lots of experience, local knowledge and acts as a bridge to Leuchie and all the expertise there which is hugely helpful. We were getting on really well with Sally, but our situation became more difficult when Elizabeth had knee surgery earlier this year. It was an eye-opener of the great responsibility she carries daily and hugely stressful to arrange to have someone supporting me. It was then we booked a holiday for me at Leuchie so she could have the respite break she desperately needed.

Leuchie is beautiful and grand and not in the least institutional, with woodland all around. The extraordinary staff to guest ratio ensures there is always someone on hand to help, and the team are kind, patient and have an amazing ‘esprit de corps’ - like a family. There is always something to do if you want to, or it is okay to do nothing if you just want to rest and take it all in. At Leuchie you get the CHOICE and that is empowering when you are losing control of so many aspects of your life.

For the first time in 2 years, Elizabeth went to London to spend time with our children and grandchildren and had a wonderful relaxing time and even went to an art exhibition, something we used to do together regularly. I can understand why Leuchie is so well-respected. Through services like ‘Leuchie at Home’, the holidays they provide, and the real, long-term personalised support, they are already succeeding in their ambition to widen their impact and help more people affected by neurological conditions. Leuchie can only continue to impact real lives with the support of donors, like you. Anything you can give will help them to extend their life-changing service beyond their walls.

That’s why I wanted to share my story, because everyone should see what an important charity Leuchie is, and how the commitment of Leuchie’s team will change how people, like Elizabeth and I, experience our lives. I feel confident about the future, knowing we have our family, friends, professionals, Leuchie and Sally at our side.

Thank you and best wishes for the festive season

Andrew Guest