Can CP get worse with age?

LisaGlass76

Hi there,

I'm a 48-year-old woman with Athetoid CP, and up to now, my involuntary movements haven't been a problem, maybe the odd month or two. However, every time I drink, my head flips back, and the drink goes all over my head. It has got to the stage where I'm scared to drink even though I'm thirsty.

I would really appreciate any help with this. I don't know if any medications would help with involuntary movements.

Lisa

Morgan_Scope

Hello @LisaGlass76, thank you for reaching out and I hope you've had a good start to the New Year.

I'm going to tag our Cerebral Palsy specialists @SaraC_Scope and @Lucy_Scope to see if they're able to offer you some advice and support.

LisaGlass76

Hi @Morgan_Scope, thank you so much. I hope you've had a good start to the New Year, too.

theirishlad

What I say to people cp can't get worse as you don't get more brain damage but the consequences is as we age has it but a bigger tole on our bodies. I use this analogy to explain to people. You have two garden plastic chairs exactly the same. On one of them people only sits on it leaning back with two front legs always of the ground and swing on it. The other one people sits on it properly. What chair will break first. Yes the one that people swing on. Same thing with CP we our bodies will not physically last as long as we need to use our bodies differently than what it was designed for

Claire293

Hi.

To answer your question, no CP does not get worse with age- it is not progressive. The original brain damage that causes CP in the first place stays the same. I have spastic quadriplegia myself. As we age, the impact and toll that CP has on our body can become more obvious/change and lead to other complications or co-occurring conditions e.g osteoporosis or scoliosis etc.

Due to having CP our muscle tone is by definition different to people without CP and aging can cause more fluctuations in tone due to excessive use of muscles (excessive use for people like us with CP could be through everyday tasks such as getting dressed as our muscles fatigue easily) that are already difficult to move/control. The overall term for these changes is post impairment syndrome.

In case you didn’t already know people with CP use 4 - 5 times more energy than people without CP for everyday tasks which often leads to significant fatigue which could be contributing to the increase in your involuntary movements. This fact is particularly pertinent if you have quadriplegia.

Personally as part of post impairment syndrome I experience significant fatigue and often my muscles feel really weak.

Could you use a straw bottle to drink from? I apologise if this suggestion seems too obvious but why not use a beaker with a lid on?

Below I have linked to a brilliant blog about CP and energy levels which you may find relevant or useful:

https://chloetear.co.uk/2019/07/cerebral-palsy-and-energy-levels/

Lucy_Scope

Hi LisaGlass76,

I am sorry to hear you are having difficulties.

 
As many have noted, our brain injury is non-progressive. But due to how our bodies move differently, and exerting more energy, we are more susceptible to premature ageing. This can look like having tighter muscles, increased in spasms, and muscle contractures.

When you drink have you noticed anything that triggers it? For example, when you are more tired, does this happen with both hands? 

I would recommend going to your GP and ask for a referral to a neurologist and or a Multidisciplinary Team.

Best wishes,

Lucy

Richard_Scope

Hi @LisaGlass76

You are most certainly not alone in this.

It's fantastic to meet you. You are not alone in feeling like this. Ageing with CP is a new challenge. I have quadriplegic CP and use a wheelchair and since I hit 40, I have felt the changes in my mobility and energy levels.  
As has been mentioned 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. Tiredness can increase involuntary movements and spasms. Also, hormone changes can have that effect too.
 
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.. Whilst the neurological aspect of CP doesn't change, the physical aspect certainly does. 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 GP (telephone appointments will work too) and talk to them about your issue with drinking because it may not be your CP and it's important to be healthy in all aspects of our lives. It might also be a good idea to get a referral to a neurologist or neuro-physiotherapist. You can mention the CP Care Pathway which instructs G.P.s how and when to refer. 
 
I'm pretty much always around if you would like to talk further. We're here to support one another. Don't feel alone. 

  

LisaGlass76

Hi everyone

Thanks everyone, for your advice; it's really appreciated!

I have a feeling it has to do with hormone changes, as I'm at that age. My involuntary movements have always got worse before my periods; it just seems like they last longer during and after now. I will try to get a GP appointment when I come back from holiday.

Unfortunately, I can't use a straw. I find my drinking gets better when I sit in my chair because my arms are strapped down, but I don't want to be in my chair in the evening watching TV with my husband; I prefer to sit on the sofa. Oh, in case you are wondering, someone has to give me drinks.

I will keep you posted.

Lisa

Richard_Scope

Thanks for the reply @LisaGlass76. Keep us posted and enjoy your holiday!