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Disability

Being an adult with Cerebral Palsy…What now?

21st September 2019

Today’s post will be talking about a topic that I feel like isn’t spoken about much – adults with Cerebral Palsy accessing regular treatment after the age of 16. This may be different for everyone, so I can only write from my own experiences. I will be discussing my treatments I accessed when I was younger, and then since turning 16, how this has impacted on my condition.

I have Hemiplegia, a mild form of Cerebral Palsy affecting my left-hand side (mainly my leg) where my muscles are tight causing me to naturally walk on my toes. Sometimes, it causes me pain and I experience fatigue, as well as affecting my fine and gross motor skills. 

From a very young age after my diagnosis, I saw physiotherapists and consultants almost weekly. I used to see manly physiotherapists who would treat me for my Hemiplegia. I would be given different exercises to do at home and at school. The exercises would mainly help strengthen the muscles in my legs, and I would also do rebound therapy – completing exercise usually on a sunken trampoline – to help build my core strength and work on balance and making me as “two-sided” as possible. I was also encouraged to take part in sports where possible, particularly swimming. 

From what I have been told, I have worn Ankle and foot orthotics (AFOs)/splints since I was about 3 or 4 years of age. These helped me with my gait (walking pattern) as I walk toe-heel rather than heel-toe (how you normally walk). I have worn three different types – a hinged AFO, a solid AFO and a DAFO. I mainly wore a hinged AFO during the day when at school and a solid AFO at night when asleep. You can find more about treatments for Hemiplegia and their benefits on Contact’s website – They are a charity providing support for those with Hemiplegia and their families.

When I was between 12 and 15 years old, I was introduced to new treatments – the first being botulinum toxin (botox) injections. In my personal experiences of them, I had them on 3 separate occasions. Each time I was referred by my physiotherapist to see the consultant to discuss my treatment plan.  I would usually have them injected into my calf muscle on my left leg, and be sedated with local anaesthetic and gas and air (laughing gas). Usually, that same week I would then be cast for a new AFO as my muscles would be less tight. I was also given new physio exercises. 

As well as botox, which was fairly successful, I also had serial casting – a non-surgical procedure where my leg was put in a cast (much like when you break a bone) for 4 weeks. Each week I would have the cast changed to move the position of my ankle, to help increase my range of movement in my leg and ankle. 

Fast forward a few years, I was just about to start college, and I had my final physiotherapy appointment of being under children’s services. My physio gave me the contact details of the local Physiotherapy and Musculoskeletal outpatients departments. I had decided not to continue wearing my AFO during the day but still had one to wear on a night, as well as continuing with exercises at home. 

Accessing services as an adult

During my second year of college, I started experiencing pain in my left hip. I thought it might improve if I took some painkillers and maybe had a bath or put a wheat bag on it. Weeks turned into months and it still hadn’t improved or disappeared completely. I saw my local GP to try to get some answers as to what it might be, in the space of a few months I had been struggling with my attendance at college because of being in pain. 

After various trips to my GP, we decided it would be best to self-refer myself to the local Rehabilitation team who deal with Musoskeltal problems to see if they could help. I was eventually seen after a month and a half of waiting. I had a few appointments with a physiotherapist and specialist there, who suggested swimming and more exercises for me to do. 

Eventually, after trying these for a few weeks, the pain seemed to wear off a little bit, but I ended up seeing my GP for a final time when she prescribed me with Gabapentin – a medication usually used to treat epilepsy and nerve pain. This seemed to treat the pain I was experiencing and after a month I was pain-free. 

I can’t remember how long this whole process took – however after having time to reflect on my experiences as a whole, I personally think when we reach the age of 16, treatment should be compulsory unless an individual decided otherwise. That way, the individual’s information would still be passed onto the relevant doctors (I have lost count the number of times I have needed to explain the same symptoms over and over to different people). 

Since then, I haven’t needed to access any more treatment as an adult, but if I do I hope my experience is somewhat better.

If you are an adult with any condition, how is your treatment managed? Do you think when you reach 16 years old, treatment should stop? Let’s have a discussion in the comments!

Ella

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