According to the NHS UK, around three in every 100,000 people are thought to have a rare genetic disorder known as hereditary spastic paraplegia.
With symptoms ranging from gradual leg weakness and occasionally insufficient sensations in the feet, to more complex challenges including epilepsy and speech difficulties, the condition - although not usually life-threatening - can leave the recipient depressed, stressed and fatigued.
As the condition is family-related and thought to be caused by inheriting a faulty gene from one or both parents, we spoke to Ability Bow gym members - and siblings - Christine and Ken Lilley about their story with the condition and because of how they love our gym so much, why they’re generously leaving a gift in their will to us.
Christine and Ken’s Story
Christine and Ken Lilley are two siblings always likely to raise a smile; and share a story or two. Aged 60 and 58 respectively, they’ve certainly both lived a varied life so far.
“We’ve always got plenty of stories to tell, including one which relates to someone famous,” says Christine.
“We once had a vicar at the Isle of Dogs, John Dennis - where I attended Sunday School at the local church - and who became a bishop and had a son. His son, Peter, is now better known as Hugh Dennis (actor and comedian featuring within sitcom Outnumbered and Mock The Week among others). John (who’s now 87) is an assistant honorary bishop in Winchester!”
More Than A Gym
For the east London originating pair, Christine and Ken are fully aware that of all the stories they do tell, their day-to-day life has itself become an impressively ongoing narrative of ‘can-do’, and sheer persistence.
Diagnosed with hereditary spastic paraplegia (HSP) - Ken in July 2014 and Christine in January 2015 - their recent challenge left them puzzled as where best to turn for vital physical and emotional wellbeing support.
Ken - who joined our Ability Bow gym in 2015 after being referred by a London physiotherapist - says: “I was left with few options for enhancing my quality of life following my diagnosis.
“Being at Ability Bow though has helped me so much - in fact, it’s more than just being at a gym.
“For someone like me who has complex HSP, visiting Ability Bow is one of the few chances I get to head out for the day and I absolutely love being here and part of the gym’s great sense of community and hard work.”
Enjoyment In Life Again
Ken himself is no stranger to hard work. Involved for more than 30 years in the printing industry within just two long-term positions at Urban Ink in Enfield Lock and Dieformes in Shoreditch, the avid film and TV fan - who also enjoys classic comedies such as Only Fools and Horses - has been able to gradually adjust to his persistent health challenges admirably.
Coping with complex HSP-associated symptoms including varied speech and bladder discomfort, he says visiting Ability Bow - inner London’s only disability and long-term health conditions tailored exercise service - has transformed how he sees his illness.
“When you visit the gym, you think you’re ok even if you have problems, which makes such an amazing difference.
“I used to regularly enjoy visiting the cinema and as I’ve gradually experienced less feeling in both legs and stiffness - as well as throbbing sensations and sight problems too - I was left feeling disheartened as places with just one hand rail like those make someone with my mobility difficult to access.
“So that’s why Ability Bow provides a great solution to those desperately seeking enjoyment in their life again,” Ken adds.
Joining Ability Bow in January 2017, former civil servant Christine certainly echoes her brother Ken’s glowing assessment of our gym.
Working within the general medical and pharmaceutical sectors, Christine says after seeing Ken’s progress at the gym, she became inspired to join our service.
Christine says: “I remember being diagnosed with hereditary spastic paraplegia (HSP) a couple of years ago and it felt soul destroying at the time.
“I really felt I needed to do something positive at the time after initially feeling low and isolated and so I asked my GP to refer me to Ability Bow and the benefits are incredible; something special in fact.”
We Will Help
It could be deemed ironic Christine believes the gym’s impact is special. Many would most likely think both Ken and Christine’s decision to leave a gift in their will to our gym is similarly one of the greatest gestures you could give (as well as the many generous tasty treats they leave our members and staff).
But for humble souls like these two lifelong Arsenal Football Club fans (there’s definitely an impressive following in our gym), there was never a doubt where their legacy would be left.
Christine explains: “We’d only just started at the gym actually when we thought how much we wanted to protect this great charity gym’s existence for years to come and that’s when we thought of leaving a gift in our will to Ability Bow.”
With no immediate family members to offer any inheritance to after their death, both Christine and Ken thought as their Mum didn’t leave a will, creating one was vital in making a difference; although in this case a societal (rather than relation), based one.
“It certainly made a lot of sense to us to do one and as it’s practical and sets out clearly what you want beneficiaries to receive, it led us to contacting a solicitor - which there is a cost attached to, but for peace of mind it is worth it and clarified exactly how we had to do it,” says Ken.
One of the advantages Christine and Ken had was by leaving a legacy to Ability Bow, they were able to do so tax-free because of our service’s charitable status.
In addition to this, when outlining a will, some of the pair’s various top tips also include being clear about who you would like to give to, chatting to those close to you and making it clear as to why you’re leaving a gift in your will (if there’s ever any contention).
“For us, wills provide a greatly lasting legacy, offer a great amount of financial control and are very straightforward for the individual doing it.
“I also think mentally if you discuss wills, it means you don’t have to dwell on the idea later in life; which could otherwise become morbid and make you feel unsettled by arranging funeral plans.
“In any case, we were delighted to leave a gift to Ability Bow and so much so I even passed on financial gifts I’ve got, to the gym - as proceeds - instead,” Christine adds.
Why Christine and Ken Recommend Our Gym
With northern heritage (both Christine and Ken’s family hail from areas including Hull and Beverley in east Yorkshire), the siblings believe they have a unique combination of northern grit and cockney brashness.
But while they demonstrate these dogged traits, what makes them equally determined to regularly return to and utilise, our gym?
Chris - who keeps herself busy as part of a community singing group and attends our gym mainly once a week and occasionally twice when she can - says; “While I am able to exercise independently, I still wouldn’t go to a gym other than Ability Bow.
“I’ve seen with someone like Ken’s disability (as he has walking aids), if you placed him in what would be considered a standard gym, it would be quite visible and people may not understand the condition.
“Whereas being here, you have your needs met and tailored to and you don‘t feel different.
“Being at Ability Bow makes you feel included, as the gym is passionate about people, inspires recovery and essentially, makes you feel better.”
Ken adds: “Corporate gyms I've been to are quite quiet and a lot of people there tend to ignore you or have their headphones on a lot; there’s a very different clientele!
“Here you can keep going and don’t trail off, as like I say, it’s more than a gym.
“Whereas corporate gyms are like being customers in supermarket queues or at the tills, here, you’re always part of a family.”
Find Out More
To find out more about our gym’s range of specialist exercise services for people with disabilities and long term health conditions - ranging from strokes and cancer, to depression and anxiety - visit our Activities page.
If you would like to leave a gift in your will to our service - or would like to find out more about the legacy process email: firstname.lastname@example.org.