“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.

“It’s a battle to get her to do half an hour of physio, but she’ll do two hours of gymnastics.”

Melissa’s mum Jennifer offers her advice on the difficult early years, why you should always be prepared for surprises, and why confidence is probably the greatest improvement to come out of therapy.

“The best advice I got from one therapist was;  “We don’t know how this child is going to turn out”. It all depends on how much input they get and how they respond. The most annoying thing is that you desperately want to know how your child will turn out. However, as hard as it is, it is absolutely the best way. Just do as much as you can for your child and they will surprise you.

Melissa is kind of wobbly, she has athetoid cerebral palsy, she’s not well co-ordinated, and her balance isn’t good. But she does make herself understood. She does walk, and she does career around like a madwoman, especially if there’s a soft gym mat under her.

Advice to other parents

It is a very scary thing when you’re diagnosed but actually it’s just a different world. It’s not as bad as you might think. When Melissa was younger I’d think parents were looking at me feeling sorry for me because I had a child who was different, but there’s a lot of worse things in the world than CP and Melissa can’t imagine life without it because it’s part of her. You do just get used to things.

Going to nursery

Melissa went to mainstream school from specialist nursery. The staff in the specialist nursery worked so well I was worried about her leaving that environment. Our physio made a request for Bobath therapy in the summer holidays before she started school.

Melissa wasn’t actually walking. Her therapists asked “Can you stand?” “How long can you stand for?” Can you do this?” I think Melissa suddenly thought “Oh I’m doing a lot of things I didn’t think I could do. I think that’s what put the idea into Melissa’s head that she could walk. Two nights into the therapy we were at home and she just said “I’m going to walk” and she did, right across the living room floor. She was ready but she didn’t have the confidence.

Once she was on her feet it made everything so much easier, dressing, going to the loo, and now she can join in with different activities. She always wanted to go to a dance class, once she was on her feet she just pitched in with everybody else and then she started to go to gymnastics and different things like that.

Primary school

Melissa wasn’t continent or walking at four so she did a year in a special primary and started mainstream school a year later.

She has a specialist OT and a physio and they go into school and support the PSA and teachers to keep her on the straight and narrow and provide her with the equipment she needs.

Melissa is a sociable kid and enjoys school. Sometimes she gets left out. She’ll have friends here after school but not always get invited to other people’s houses. The parents who do have her round tend to work in the care sector – they get it. Some parents are scared, they don’t know what to make of Melissa, they worry about not being able to understand her, as it affects her speech. That’s quite difficult.

After school activities

Melissa does canoeing, gymnastics, drama and dancing. She doesn’t get wrapped in cotton wool at home. I don’t think she is ever that keen on structured therapy. It’s a battle to get her to do half an hour of physio, but she’ll do two hours of gymnastics on a Saturday and hates to miss that.

Kerry is mum to Cooper and Lewis, two gorgeous boys called who are three years old, and who keep her very busy. Cooper has Hydrocephalus and cerebral palsy.

“When the boys were babies we didn’t really notice. But there comes a point when the differences become obvious. Ours was at 16 months old when Lucas was walking and Cooper was still lying on the ground. I found that really upsetting because I was comparing them.

“I know it’s difficult to do, but you have to try not to compare them and just focus on how brilliant they are together.

“It is easier as they get older. You begin to see more and more of their personality emerging. Cooper is the one who loves being funny. He loves singing, loves stories and loves swimming.

“They are just different boys, like any other brothers.”

“He is becoming a lot more aware of the fact he is different. It can be difficult to answer these questions but I just try to answer him honestly and explain that everyone is different in some way.”

Elaine shares her family’s story of diagnosis and life with twin boys, Ryan and Jack, who has cerebral palsy.

“Jack is one of twins. They were supposed to be born by elective section however they decided to come early and I had natural births at 30 weeks plus four days. The boys were born 14 minutes apart, Jack was 3lbs 3ozs and Ryan was 3lbs 6 ozs. They were transferred immediately to the neonatal intensive care unit (NICU) and I had to learn to do everything through the incubator for those first weeks which was really strange.

“On day three, doctors told us that Ryan’s brain scan was fine but that Jack’s had some pinpoint holes which meant there was brain damage. At that point we hadn’t even known that they had brain scans done! It was such an emotional rollercoaster and it didn’t help that the boys were in different wards, as Ryan had to remain in the NICU for breathing problems but Jack had moved to special care.

“Cerebral palsy was not mentioned at that point and I really struggled with the lack of information about what to expect over the next few years. They only thing we were told was to look out for differences in development between Jack and Ryan.

“The boys were transferred to a hospital closer to home after 10 days. Ryan took Group B Strep and nearly died three times. We owe his life to his consultant who was amazing with him. The boys eventually got out of hospital on their original due date. After discharge they returned regularly to the development clinic where they saw their consultant and two physiotherapists who monitored their progress.

Early development

“At one year old Jack’s care was transferred to an NHS community care centre.  He continued to progress but I felt at times that I did a lot of the hard work and that the therapists could be a bit negative about Jack’s potential. I was told he would never sit up; but two weeks later he was sitting. Two weeks after that he started to commando crawl. It is his left side that is affected. Sometimes he sat at a funny angle and would forget to use his arm, but he kept improving. When he started to walk he got fitted with a splint on his left leg to help him come down off his toes and this made a big difference.

“At age two, due to boundary changes, Jack’s care was transferred again and he got a new NHS physio who is amazing. She has a fantastic rapport with Jack and she explains so much about his condition and what to expect and she sees Jack every week. Toilet training was  difficult, but the occupational therapist and physio worked with me and Jack to help with technique and aids, such as grab handles close to the toilet.

Primary school and onwards

“Our physiotherapist, occupational therapist and visual impairment support have been so supportive, particularly as Jack moved up to primary school. The school have been great at putting the changes in place which were needed to help him.

“As well as splints, Jack also has a Lycra suit. He started with just a jacket but now has a full body suit to help control his arm and his lower back. He doesn’t always enjoy wearing it but it definitely helps him to remember and use his left side. It also helps with his concentration levels and the school have noticed this too.

“Jack gets pain in his legs, and Ryan offers to massage it “the same way mummy does”, because the physio showed me how massage can help. Jack also gets his CPIPs measurements carried out every year to monitor his hips.

“Jack has had Botox for his calf muscles which worked really well the second time around. There was a possibility he might have needed it in his thumb but so far the Lycra suit is working well to improve this. It’s good to have regular reviews and NHS staff who can help us to decide when some things are needed.

The future

“I feel that early on I would have benefitted from having more information available. If I had been told all the options and what we might be facing over the following years it might have helped to calm me down. My advice to anyone facing diagnosis would be to keep calm and talk about what is going on with close family and friends. We didn’t do that to start with. But bottling it up doesn’t help.

“Having local NHS services like the physio and occupational therapist, and the visual impairment teacher at school takes a weight off my mind because they help me to think outside the box with Jack’s treatment. They provide a support network and access to information. The occupational therapist also suggested the HemiHelp group which provides a network with other parents for sharing information and I find this really useful.

“Jack is now starting to question why he is different and whether he will get cerebral palsy in his right side too. He is becoming a lot more aware of the fact he is different. It can be difficult to answer these questions but I just try to answer him honestly and explain that everyone is different in some way – and he certainly doesn’t let it hold him back. Everything he has done he has done his way. He has learned to adapt to being that wee bit different and nobody would know walking past us in the street that he has cerebral palsy.”