Hi, my name is DuckyYellow24! Assistive stretches for my son, anyone had a similar experience?

DuckyYellow24

DuckyYellow24

My 26 year old son is transitioning into Independent Living soon. I do daily assisted passive stretches with him, but our social worker says this will not be provided when he moves out. I asked our orthopaedic consultant if he could write a letter of support as 2 years ago, they suggested his support worker be trained to do the stretches with him, as he won’t get full range if he does them himself. The Consultant is now saying the research is ambivalent about their value and won’t support. I’m concerned that this stance is about driving down cost, because the research doesn’t come down strongly for or against, from what I can see and says more research is needed. I am not going to throw his mobility under a bus now. Adults with CP report better function and more comfort after doing stretches, but apparent this isn’t a good enough argument for Adult Social Care.
I am convinced the stretches have maintained his range of movement and prevented surgery. Has anyone here got any suggestions or are facing the same situation?

Adrian_Scope

Hello @DuckyYellow24. That sounds really frustrating for you all.

I'm going to tag our cerebral palsy experts @Richard_Scope, @SaraC_Scope and @Lucy_Scope to see if they can offer you any advice or support once they're back in the office on Monday.

Richard_Scope

Hi @DuckyYellow24

I think we spoke via email last year. As you know, I live with CP, too, and can attest to the benefits of passive stretching. Some I can perform myself, but the leg stretches I do with my wife's assistance.

The main barrier here will be getting a carer trained and agreeing to perform the stretches. It is difficult enough to find carers who will perform the basic functions of the role without what Adult Social Care would consider an "extra".

There has been some research on passive stretching but the benefits are still up for debate.

Here is some of what I have found:
The effectiveness of passive stretching in children with cerebral palsy - Pin - 2006 - Developmental Medicine & Child Neurology - Wiley Online Library
viewcontent.cgi (pacific.edu)
Stretches for Cerebral Palsy: Simple Ways to Improve Range of Motion (flintrehab.com)

SaraC_Scope

Hi @DuckyYellow24

Your thoughts around ongoing physiotherapy for your son are completely valid.

Richard has given some great advice.

I have right sided hemiplegia and as a young person my parents motivated me to do my physio. That's why my balance and strength on my right side is better than it could have been.

What we didn't know was the impact of using my left side for everything. I'm now 48 and recently learnt I have post impairment syndrome. This has been caused by years of over use of my left side. If I had more information about this heading into adulthood, I would have fought to continue my physio. I was discharged from all services at 18.

After a long discussion with my GP I was referred to physiotherapy last year and now have some additional support. I have exercises to do myself at home. Some of the hand exercises I require help from my husband.

I recognise now how important it is for young adults to keep going with physiotherapy, independently or with support.

I've included the link to Post impairment syndrome for you to read.

Best wishes

@SaraC_Scope

Cerebral Palsy Specialist

Lucy_Scope

Hi @DuckyYellow24,

I would say stretching is the most vital tool I use to manage my cerebral palsy. Mostly, I do an active stretching programme made my neurological physiotherapist.

Growing up my dad would aid passive stretches, and still does whenever I go back home. This helps as that additional pressure can aid a deeper stretch that I would not be able to obtain on my own.

As Richard mentions, there is a debate over passive stretches effectiveness - especially in gait and range of motion.

However, I do think working the affected muscles passively or actively is beneficial.