Patient Story – Cath
Cath is in her late forties and lives in Middlesborough with her partner, Carolyn and one of their two grown up children, as well as their three cats.
She was diagnosed with spinal muscular atrophy, type two when she was four. Her condition means that her muscles are week, including those muscles which help her to breath and cough, and she uses a power chair for mobility.
Home ventilation was suggested when she mentioned that she was getting hot sweats overnight. She was waking up regularly and not getting a good night’s sleep.
Cath took to using the ventilator straight away. She put it on the first night and went straight to sleep. She doesn’t recall any difficulty adjusting to using it. It was very easy and assisted her breathing so she wasn’t fighting against it. Now she uses the machine every night and doesn’t sleep well when, for example her ventilator broke just before she went away, and she had a night without it.
She feels that the masks are constantly evolving to be more patient friendly. She has one now which means she can easily take her glasses on and off.
Cath also uses cough assist, without which she needs help. But the cough assist means that she can do it herself, particularly when she has a cold and cough.
Her advice for anyone for whom home ventilation has been suggested is to go for it. She feels that she is able to have a much more active life than without it.
She says, “When there is a need, my advice would be just put it on and let it do its job. But I would also say that if you’re having trouble with things like sores or leaks, these can be easily resolved, try different masks and speak to other patients if you can. There’s lots of different masks out there and I think that a lot of the problems can be solved by talking to people or researching on the internet.
My home ventilation team are on the end of the phone. They have given me a list of numbers so if I’ve got a problem, I just give them a ring or email them, and tell them what I need – if it’s new equipment or spare equipment, or if you’re going on holiday and you need them to do a flight test, or you need to take a spare ventilator with you because you’re going to be away for a long time, there’s loads of support out there, just give them a ring, they’re brilliant.”
Cath works for Pathfinders Neuromuscular Alliance, which is a peer led organisation for people with muscle weakening conditions. Her current project, Uplift, is a youth development project which supports young people with muscle weakening conditions to build skills and confidence, and a campaign for social change.
She feels that her ventilator has really been essential to allow her to maintain her lifestyle. As she gets older, she is keen to continue to be active and doesn’t want to stop burning the candle. But her ventilator means that she gets good quality sleep which allows her to play wheelchair football competitively with her local team, and to travel, whether to watch a game of football or to go on holiday.
She finds that her ventilator is very portable. There’s a battery attached to it, so she can easily taken it with her overnight. She has even used it in a tent and in a camper van. So it doesn’t limit her ability to lead her life to the full.
She feels that using a ventilator at home is just like using a power chair. It’s just a means to breathe at night, to give her a body a rest.
Cath concludes, “It’s a piece of equipment that allows me to live a much more active life than I would be able to without it.”