Bob's Story

“It’s the feeling you get when you walk through those doors and everybody’s there for you,” says Bob, who attends Phyllis Tuckwell’s exercise classes. “It’s a really good atmosphere. When I come here, I can relax with the rest of the group, and it helps me cope for the rest of the week. I know I’ve always got that help there, for me personally.”

Bob first came to the Hospice nearly ten years ago, not as a patient but as a visitor. “My work colleague was diagnosed with terminal cancer,” he explains. “I used to come to the Hospice to visit him, and I would take him out into the gardens in his wheelchair.” A few years later, Bob was diagnosed with Motor Neurone Disease (MND), a progressive disease which attacks the nerves in the brain and spinal cord, stopping messages from reaching muscles, and leading to muscle weakness and wasting.

“I started to go to Frimley Park Hospital to see the neurologist there, and he suggested that I come into Phyllis Tuckwell for physiotherapy. I was really against it, I said ‘no, I’m not going there, people die there!’”

Despite his reluctance, Bob was persuaded to come to the Hospice by Val, an advisor who works for the MND Association. He agreed to meet Sue, a Physiotherapist at Phyllis Tuckwell, who showed him around the Hospice and its grounds. “We went to the room my friend had been in, and then I went into the gardens,” he remembers. “I didn’t realise how much actually goes on here to help people – it really surprised me.”

Talking to Sue helped Bob overcome his fear of the Hospice, and he agreed to try some physiotherapy.

“To start with I was having one-to-one sessions with Sue,” he explains. “This was before the group had started up.” When the group was formed, Bob was asked if he’d like to join. “The disease affects the lower part of my body,” he says, “so I have trouble with my legs and my feet. I can’t feel my feet at all. I drive a disabled vehicle, but I drive using hand controls. At the class we have an exercise bike, and we do exercises on that for our arms and legs. We also do exercises on the rails and we have a treadmill too. I lift weights as well, that’s another one that exercises my arms, and we do group exercises too, sitting on chairs and putting our arms and legs out. There are a lot of small exercises we do before we go on the bikes and the treadmill and all the other major things. So there’s quite a lot that helps me as a person with MND. The bike gets my legs and feet working, gets the blood circulating, and I also use my arms as well on the bike, so that keeps the top part of my body fit. It’s a very good session.”

“I’ve made friends and I really like coming here,” he continues. “It’s like a day out for me; I don’t think about the terminal illness I’ve got. It’s not a thing that we all talk about; we don’t really talk about each other’s illnesses. We compare our exercises and we have a chuckle. It really boosts my morale. You do get the upsetting things – two members of our group died recently. We’ve bonded so well and when something like that happens it really upsets us all, but we all get together and try and get over it – you never forget the people, but it’s really helpful to have the rest of the group around you after something like that happens.”

“My wife has been disabled for 29 years and I’ve been her carer all that time. I thought that when we retired I would be the fit one, but then they diagnosed me with Motor Neurone Disease. There’s times when you feel that it’s getting beyond you, but this exercise group has helped me and I’m really grateful to Phyllis Tuckwell for that. I’m so pleased I got over my fear of coming here.”

“I want people to know how much care, consideration and love people who work in a hospice have. It’s something that people need to know about. To begin with I was very much against it, because I thought it was just where people came to die, but once I got over that I can’t emphasise how good it is to come here; to be part of a group and be looked after like we are. I just can’t say enough about the people here – all the Physiotherapists, and also Tina and Polly, the volunteers who help run the classes. I’m so glad I got over my fear of the Hospice and I’m very grateful that my friend was in here for the time he was, before he died.”