“I never thought about ageing I just carried on… physiotherapy even at my age has made a huge difference to how I can move.”
Jackie Maciera is 65, has worked for 32 years, been a local councillor and now works with the NHS. Here he reflects on the difference recent physiotherapy has made to his mobility.
“I was born with CP and I’m now 65. It took until I was I was five to be diagnosed. I was a floppy toddler. I couldn’t sit up. I went through a lot of pioneering operations. At 14 years old I started to get up and walk with sticks and I did that for a few years. I went to Kelburn School which meant I was able to have therapy every day. Once I left school I didn’t get any physiotherapy after that. I didn’t think about it, I just carried on with life.
If I’d had physio throughout my life it would have kept the tone of my muscles supple and kept everything ticking over, but it never happened. It was only last year I discovered that Cerebral Palsy Scotland were doing an adult therapy programme. It’s made a difference even at my age to how I can move. I’ll never be able to walk any great distances because I’m mainly in a wheelchair, but it’s helping, it’s keeping me slacker.
The benefits of therapy
When I think about how stiff I was physio has made a huge difference to how much more relaxed I am. I couldn’t lift my leg to put my shoe on. After the therapy it was much easier to bring my leg up. I’ve got a sock aid that puts socks on, and I could put my shoe on. It’s a case of for a short while I don’t feel so stiff and I don’t get as many spasms. That was the first physio I’d had since I’d left school.
Back then we never got any information at all, so we just accepted what was there. But now you shouldn’t be accepting it. Seek out what help you can get. When you move into adulthood that’s the main part of your life, you want to go to work, have a family you do all these things. Seek out opportunities, organisations you could work with.
I’ve worked all my life, 32 years and then I became a local Councillor and moved into the NHS. It’s been great fun. I’ve done a lot. Employment is still a big issue and support for employment is still a big issue.
I never thought about ageing, I just carried on. I was active and into sports in a big way, swimming basketball. I think if I’d had more physio in life I would have been walking a bit more but hindsight is a wonderful thing. I don’t look back. The pioneering surgery and work they did then probably led to what they have now.
It’s difficult to find adult services and sometimes it’s about getting the right social worker. It has to be a partnership and listening both ways.
Cerebral palsy is so varied and the level of disability you have is so varied, but my advice to anyone turning 18 now is to not fall into the trap I did. Don’t just because you’re young you can climb the world, think about what help you had when you were in children’s services and think about which services you might need to continue being at your best. Seek out help, find it and be prepared to fight for it.
To mums and dads I’d say I know you love your child so much but don’t wrap them up in cotton wool. They’ll outlast you and you have to prepare them for independence all the time. Let them do sport, let them do things. My Dad was tough on me; you have to be prepared for life.
Would I change anything about your life? I’d get physio every day, but other than that I wouldn’t change a thing. I’ve done more in my life than a lot of able bodied people. I’ve done things, seen things most people never do.