Chris Leak is 58 and living with Huntington’s disease (HD). A father of two, Chris has found purpose and peace in his life again through our Living Well with Isabel services.
Huntington’s disease is a life limiting neurological condition, defined as an illness caused by a faulty gene in your DNA. It affects the body’s nervous system and is wholly categorised as having an impact on three areas: movement, cognition, and behaviour. In Chris’ words “It’s a bit of everything”. You can live with the faulty gene for years without symptoms, but they will develop at some stage and as yet, there is no cure.
The gene is genetic and can only be inherited. Chris saw his mum diagnosed in 2003 and knew this meant he had a 50% likelihood of carrying the gene himself. He said, “it just seemed like the right thing to do at the time. So, me and my sister got tested in 2006 and I was gene positive”.
Chris’ mum died from Huntington’s disease in 2015. It was 12 years after his diagnosis that Chris became symptomatic in 2018. He said “During that time you’re always trying to push it to the back of your brain. Having seen my mum go through it, it really is the most horrible genetic disease. It’s Parkinson’s, it’s a bit of motor neurone disease. You eventually lose all strength in your muscles, you can’t speak, you can’t communicate, and I saw my mum go through all of this.
“I think it’s part of the isolation I’ve suffered having a Huntington’s disease diagnosis but also seeing somebody going through it. It’s the loneliest place because you know it’s going to happen at some point.”
It was this isolation that ultimately prompted Chris’ referral to Isabel Hospice. Chris was referred to our Living Well programme by Rachel, Specialist Advisor, from the Huntington Disease Association who have offered him so much support and care. He said, “I was not wanting to go out which is really unlike me, so me and Rachel talked about the exercise group.”
Our Living Well with Isabel approach provides support for patients and the people who love them, to adjust to the changes that come with living with a life-limiting or terminal condition. Our wellbeing sessions cover a range of emotional, physical, social, and spiritual issues or anything else that is impacting on someone’s health and wellbeing. Our priority is to help you maintain independence and enhance the quality of your life.
Chris began by coming to the weekly exercise group, “just knowing I could come along every week and be made to feel welcome. For me even the familiar faces turning up every week and knowing the class was chair based and safe was all so reassuring. The exercise group has physically given me confidence in my balance and it’s improved my core strength. It starts here but it goes on outside the doors. It might sound simple to someone else but even the fact I can now play pool, stand up and bend to hit the ball.”
Chris was then able to find out more about the other groups and sessions available to him. He said “I didn’t really understand the meaning of holistic care when I started coming and now it’s the best thing I’ve ever done. At first I thought, I don’t need complementary therapy but that was just my prejudice. The things I have learned from the classes and treatments have impacted me in a really positive way. The therapy has been amazing. I’ve now had acupuncture, shiatsu massage and reflexology which have all brought my stress down and reduced my anxiety, including lessening physical symptoms like my psoriasis.
“It’s not just what they do within the room, it’s the space they create. They are so understanding, it’s a safe space. They sit and have a chat with you beforehand and its very cathartic and sometimes just what you need.
“I’m a man. I’m 58. We’re not great on talking about things we don’t want to. So, the big positives are being able to just come in and open up to the team but also through the neurological support group, which is once a month, interacting with other people who are here, the volunteers and the staff, because I’m happy to share my story. I’m happy to talk.”
When asked if Isabel Hospice has made a difference in his life, Chris said “Yes and so much more. I get so passionate about it. Everybody here has had a huge impact on me, whether they know it or not in some way or another. When I come in, nothing is too much trouble. There are some members of the team who I don’t really know but they know me. Everyone that sees me says ‘hi Chris, how are you?’. One of my things is short term memory, so I forget people, but walking in here, it’s that reassurance that they all know me and my condition.”
Chris has been able to discuss his advance care planning with the support of the Living Well Team. He said “I’m not afraid of dying, I was just afraid of dying alone. Since coming here, I now know I could come to the In-Patient Unit in my final weeks. It’s as simple as that. I don’t have to worry about that anymore.”
Chris is flying the flag for Huntington’s disease which includes speaking at conferences to share his story and being part of research treatment with the National Hospital for Neurology and Neurosurgery. Chris said, “The Living Well team have given me a sense of purpose because now I’m able to do more for the HDA and raise awareness.
“Sometimes I feel I’m being greedy using so many of the services Isabel provide. I’ve seen people be encouraged to live a life again. People don’t come here to die. I think I am very loved, and I think I’m here to be reminded, if I needed any proof of that.”
