Jon, 49, was first diagnosed with a very rare illness in 2014 that took him from being fit and independent to requiring a lot of physical help day to day. But Jon defied all the odds to stabilise his condition with the support of the team at St Margaret’s.

“I used to cycle, but after I fell off a few times, I found out I’ve got a cavernoma [abnormal blood vessels in the brain stem]. I’ve had two lots of surgery, but it can’t be cured. I came to stay at the hospice in October.”

When he arrived, Jon had very little mobility and his strength had deteriorated as a result. As well as being unable to walk, Jon now experiences severe tremors, has limited eye sight and difficulties with his speech. But Jon was determined to get home again, regain his independence and live as well as possible for as long as he can. “I couldn’t really get out of bed when I was first there.
They helped me do exercises to see what my legs would do, and showed me how to use some hand weights for my arms.”

After treatment in the hospice In-patient Unit, Ali and the team supported Jon to go home by arranging for carers to help him with showering, medication and mealtimes. They ensured that his home was adapted for his wheelchair, and the bathroom facilities were accessible. A referral for ongoing physiotherapy means Jon can continue with his rehabilitation from home.

“You don’t necessarily go to a hospice to die. You can still get through it.
All the staff were fabulous at the hospice, I’m very grateful.”

The community team at St Margaret's Hospice Care help patients like Jon live every day to the fullest, conserving their energy for the things that really matter to them - creating lasting memories with their families and friends, making each day count.

Jon's story is part of our Summer Appeal 2019, helping us provide the compassionate and individual care we all want for people in our community living with life-limiting illnesses. Please give what you can this Summer.

Donate here.