Cerebral Palsy and Aging

dingdam

Hi all, 

I have only just joined the forum but have been a long time lurker on various threads. I am 23 [M] with cerebral palsy (mild spastic diplegia affecting mainly my right leg).  I am fully independent and can drive, walk etc with no walking aids needed.  However, recently I have become growingly concerned about the impact of CP as I age. I am aware this is a non-progressive condition, however I fear that I may lose my ability to walk and drive as I age or that pain (which I currently do not have of any sorts, thankfully) becomes so unbearable that I able to perform daily tasks or work in order to be financially independent once I reach my late 50s.  I know this has been discussed previously in other threads but could someone provide an insight on life with CP as you age further with regards to the ability to work, move around/walk and travel independently? 

Kind regards and all the best to all.

chiarieds

Hi @dingdam - & welcome to the online community. As everyone is different, so it can't be identified as to how you will be. You may have come across Scope's online advice about CP & ageing, see: https://www.scope.org.uk/advice-and-support/ageing-and-cerebral-palsy/    so altho CP isn't progressive, it can still impact as you grow older. The best person to discuss this with is @Richard_Scope our CP Specialist Information Officer, so I will ask him to help.

Tori_Scope

Welcome to the community @dingdam It's great to have you as a non-lurker.

I'd definitely recommend reading through that information and advice page that chiarieds has linked, and I'm sure that Richard will be able to provide some insight for you as well, along with other members. 

Chloe, who works for Scope, has a great blog where she talks about living with CP, being visually impaired, and a host of other things. She has a post on her experience of ageing with CP so far, which you might like to check out. 

P.S. I deleted your duplicate post, and moved this one into the CP category as it already had a comment. 

WestHam06

Hi @dingdam, 
                       Welcome to the community and thank you for joining us. How are you? You are right, though CP is not a progressive condition, ageing does have an impact, as it does for those without CP. I can see that you have been given some great advice already and know that @Richard_Scope is a fountain of knowledge, all I can add is to remember that everyone with CP is affected differently and no two people are the same. It's also important to seek support from your GP if you feel you need this but please try not to worry to much, my advise would be take a day at a time. I have Cerebral Palsy and have noticed the impact as I've become older, but through medication and physiotherapy I am able to live life and look forward to achieving my goals. Thank you. 

Reg

I have mild CP , mainly affecting my right leg and hand though I am told that the tone in other limbs isn’t right but I don’t notice that.

I have however found that I have aged quicker with CP so people in their 60s 70s and above are all speedier and fitter than I am . My advice to my younger self would be to do the activity type hols and sporty things I want to do now but whilst young and semi fit and to go to as many Pilates and yoga classes that can be fitted in (as they combine many of the physio exercises we are all encouraged to do to keep fit when older) . 

Final bit of advice to my younger self would be not to worry about ageing with CP as worry won’t help and that walking with a crutch and using aides means I am still really fortunate in what I can do.

Apparently Mark Twain said “age is a question of mind over matter - if u don’t mind it doesn’t matter” 

I try to think of mild CP as like age and mind over matter so I am still up for adventures and challenges! 

Richard_Scope

Hello @dingdam
How are you? I see that you have had some great responses already.

The physical aspect of your CP may change as you age but that doesn't necessarily have to be the case.

Learning to manage your CP with stretches and exercise at a level that is comfortable for you is so important. Strength training and cardio are areas that you should focus on. 

The importance of movement with CP. Pain, stiffness (more than your normal) and discomfort can be a sign of a lack of movement. 

With CP, our nervous system is affected - how is different in every single one of us. Our nervous system, which is our own computer, keeps us alive and gives us the ability to move. 

All our bones, joints, tendons & muscles are all connected & rely on signals received from our nervous system.  

So the less we move, the less our nervous system is working, the fewer signals are being sent to connecting parts (muscles, tendons etc) the less we use our muscles the tighter they become, (pull an elastic band & this is what a tight muscle looks like, a muscle should look like a non-pulled elastic band ) our joints become stiff as they don’t know what they need to do.  

So, imagine you have a laptop, it’s about 10 years old, you turn it on, but it takes an hour to fire up so you can use it. This is what your body is doing the less we use it, and why we get pain.  

After the age of 30, in both sexes, we lose our ability to form bone. Our bone mineral density process reduces, which can lead to osteo (bone) conditions. Again, exercise can help reduce this process down.  

Strength (resistance) training is the best type you can do, it strengthens the muscles up, especially around affected joints. It makes sure you stay strong & keeps sarcopenia at bay, it helps speed up your metabolism, helps you lose weight, it helps the body with the latter 2 even at rest. (You can use anything as weights from milk bottles filled with rice or water, wine bottles, tins of beans, shampoo bottles, shower gel, washing up liquid etc) this can be done seated or standing. 

I have noticed a change in my mobility over the last 3 to 4 years but that is in part down to me not doing what I needed to do to maintain it. Sometimes life happens! Poor excuse I suppose but it's the truth. That said it hasn't ever prevented me from working, travelling and being a parent. 

If you make small changes now there is no reason why you should have to give up anything.