Spastic diplegia at 44

Tommyc38

Hello there, my name is Thomas I have just turned 44, and suffer with Spastic diplegic CP, in the last year I have noticed a sharp rise with chronic fatigue both physically, and cognitively, it is causing me to burn out much faster, and is impacting significantly on my ability to work, I currently work 4 days a week, even with reasonable adjustments in place, I am still exhausted especially when having to concentrate, for a period on a task, my daily life and social life is also becoming more impacted, I wanted to get advice from anyone in their 40s going through the same thing, and any advice on whether or not, it may be time to give up work, is there any research on CP and middle age. All feedback greatly appreciated

SaraC_Scope

Hi @Tommyc38

I'm Sara one of the CP Specialists at Scope. I can relate to your situation. I'm in my late 40's and have right sided hemiplegia. I noticed a change in how I was feeling about 5 years ago. I was developing aches on my left side and I was finding it hard to retain information, more than I had previously. (I also have epilepsy).

I approached @Richard_Scope in the CP Network who explained that although the our CP doesn't change, our bodies are impacted because of the overuse and compensation of our other muscles and limbs. There is a condition called Post impairment syndrome. I'm not sure if you have heard of this. It was a lightbulb moment for me.

I've included the link to a great article Richard wrote about the condition.

https://forum.scope.org.uk/discussion/56078/post-impairment-syndrome-and-cerebral-palsy

We also have our CP Network which you are welcome to join. You may already be a member, but I've included that link as well. https://www.scope.org.uk/cerebral-palsy-network

If you have any other questions, feel free to get in touch.

Rosie_Scope

Hi @Tommyc38, sorry to hear things are becoming difficult at work. Hopefully some of our members will be able to share their experiences soon but I'm also going to tag a couple of our CP Network Team. I'm sure they'll have some helpful advice to share.

@Richard_Scope is our CP programme lead and @SaraC_Scope is one of our CP specialists ☺️

Tommyc38

@Rosie_Scope Thomas here thank you so very much in really appreciate it

Tommyc38

@SaraC_Scope Thomas here, thank you so much for all this information its so hard to find anyone who can really relate, its reassuring to hear that im not on my own in this, I will definitely check out the network!

Richard_Scope

Hi @Tommyc38

You are not alone in feeling like this. Ageing with CP is a new challenge for sure. I have quadriplegic CP and a wheelchair, and since I hit 40, I have felt the changes in my mobility and energy levels.    

We CP folk use up a lot more energy than non-CP people, up to 5 times more because of the way we move or walk, etc. This can lead to fatigue.   

The key is learning about your body and planning your day around that as much as you can. Plan the bigger tasks at the time you have the most energy, etc.   

There is also something called Post-Impairment Syndrome that is related to CP. This refers to additional conditions that might be acquired by someone already living with CP. 

Here is an excellent blog post about it:   

What Post-Impairment Syndrome Means to Me   
 

What I would advise is that you book an appointment with your G.P. (telephone appointments will work too) and talk to them about how your CP has changed. And get a referral to a neurologist or neuro-physiotherapist. You can mention the CP Care Pathway, which instructs GPs how and when to refer to the UCLH Cerebral Palsy Service.  

Tommyc38

@Richard_Scope, this is great advice and im glad to know that my symptoms have a name, in the Post Impairment Syndrome, I read your article on it too, you all do great work at Scope, thank you

Richard_Scope

Thanks, @Tommyc38