Cerebral Palsy and ageing in your late 20’s

I know what you’re thinking, your late 20’s is young! I agree with you. Yet I’m 27 years old and I’m starting to feel the premature ageing associated with cerebral palsy — and I’m not alone in that. 

Read more: Ageing and cerebral palsy (Scope)

In the last few years I’ve struggled more with fatigue and muscle spasms. I imagine this will only continue. I constantly I see posts on Facebook groups or Reddit of adults with cerebral palsy experiencing the same thing. Yet most of them didn’t expect this to happen, or at least didn’t expect to happen in their 20’s. 

I’m yet to experience a real physical decline, but things feel harder and different. It’s hard to explain. It’s almost like my muscles feel like they’re affected more, even if they doesn’t appear to be any different. 

A drop in support

Most adults with cerebral palsy have very little input from healthcare professional. We’ve stopped the support we received as a child and are left to figure things out for ourselves. For most people, the most they can hope for is a 6 week course of physiotherapy when things get tough. There are some great services out there, yet it seems to be a postcode lottery. 

So where does that leave the majority of us? Searching the internet for answers and anecdotes so we feel validated and less alone. Here’s my contribution… 

Sign the petition: Fund healthcare framework and pathways for adults with Cerebral Palsy

Post-impairment syndrome

It was only while working at Scope that I came across post-impairment syndrome. In a nutshell, it accounts for the extra strain that’s put on someone’s body when they have cerebral palsy. It’s the wear and tear from living in a body where the muscles don’t behave in the way they should.

Finding out about post-impairment syndrome gave me answers and accounted for the additional symptoms I’d seen others talk about online. Yet a healthcare professional has never mentioned it to me. 

Pain

For me, it was my late teenage years and early 20’s that took the biggest hit physically. Obviously I cannot account for what my 30’s and beyond will bring!

I was using a wheelchair a lot of the time and pain was at an all time high. Looking back, my nervous system was probably on fire. Studies have shown that young people are more prone to chronic pain as their brains are still developing, this is especially true for females. It’s only in early adulthood, when the brain becomes fully developed, that chronic pain calms down. 

Yet this is only one source. Things like pain are complicated, even more so when you have a pre-existing neurological conditions like cerebral palsy. But what I’m trying to say, is that it’s not all in your head. 

Similarly, UP, the adult cerebral palsy movement organisation, suggest that as many as 75% of adults with cerebral palsy experience from chronic pain. Which is frightening!

Fatigue

I honestly wonder how I got through school. How did I have the energy to be in school 5 days a week. Granted, it was only 9am until 3pm, but I think I’d struggle now. 

That being said, a big part of using my wheelchair was fatigue management, so I could actually get to the end of the day and continue to focus in lessons. I think people forget that wheelchairs are more than a physical tool, it can be to used to conserve energy and therefore give you the ability to do more. 

It is commonly known that cerebral palsy can cause fatigue and tiredness. This is many due to the extra effort we need to use to move and carry out tasks. So it’s no surprise that when things are becoming harder, my fatigue has become greater. 

I’m amazed at how much energy it now takes to do the most basic of things. Things that used to make me tired, now leave me exhausted. For me, this has probably been the biggest change I’ve experienced as I’ve got older. Even if I just compare to a few years ago, I’m becoming more fatigued and as a result, I need more sleep to recover from things. 

Muscle spasms

Well this is turning into a very cheery list of symptoms! Last on the list is muscle spasms. I’ve been on a muscle relaxant medication called Baclofen for over 10 years. Back then, it was to reduce general spasticity as this increased for me as a teenager.

The long term use of Baclofen has really helped me keep a good baseline. It’s probably the most common medication used to treat spasticity for people with cerebral palsy and I can see why. 

However, in recent years I’ve noticed that my muscle spasms have become worse, especially when I’m tired or I’ve overdone it. In the past, these were not visible and consisted of internal muscle twitches. While this is still true, I have started to experience involuntary movements.

Like I said before, things just feel more affected. This is not a welcome change and can be very frustrating, painful and tiring. Basically it triggers all of the symptoms! 

Acceptance

Surely there has to be some positives about getting older?

Having cerebral palsy used to really bother me. I wouldn’t let it stop me from doing things, but deep down I wanted it to go away. If anything, writing this blog has helped me to unpick my thoughts about what it means to have cerebral palsy.

But it’s through support, research and meeting others that have enabled me to be comfortable in my own skin. My cerebral palsy is not going away any time soon, if anything I’m in for a bumpy ride. But it feels manageable when you’re able to accept that. 

 ~ Chloe x