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Novelist seeks help. I am a novelist writing a book based on a close friend and colleague who had CP

Suds

Hello everyone. This may be an extremely annoying question, but as someone who does not have CP, I am trying to make sure that what I am writing is as correct as it can be, My friend could walk, although with difficulty, and he pushed himself. He never discussed the day to day difficulties he had, particular things he had to wear, how tiring it was to live with CP and work full time. He did a lot of yoga. He swam (I think) and tried to keep as fit as he could. He always wore hefty walking boots. But I know nothing about what speech therapy would have been like for him, although I know he had a lot. I have no idea how it feels to have the tight muscles that were evident in him. Is it being intrusive to ask you all, as a community, all with different experiences? I would be grateful. Remember, of you respond, I am ignorant. Many many thanks. Suds

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Chloe_Alumni

Hi @Suds and a warm welcome to the community! It's great that you are wanting to make sure it is accurately portrayed! People with CP can be affected very differently but of course there will be similarities. I have cerebral palsy myself but I have never had speech therapy so would be unable to help you with that aspect unfortunately. I am tagging my colleague @Richard_Scope who is the cerebral palsy specialist and may be able to signpost more people towards this

Suds

Thank you, Chloe. Speech therapy apart, would you be prepared to tell me about those things that make your own daily life difficult and exhausting? Could be big things like getting about, or pain, or having to plan everything. Or more detailed things like writing, pouring a drink, threading a needle? Anything would be a great help. And thanks again.

Richard_Scope

Hi @Suds
We have a speech and language expert on the community that may be able to give you an insight into the process @NicolaLatheySLT

Everbody who lives with CP has a very different experience of it and their lives are impacted in different ways. I am happy to help where I can.

Suds

Thank you, Richard. I wonder if it would be possible to talk face to face?

Connie00

Hello @Suds

My Name is Connie00

I am one off the community Champion’s here at Scope. it’s really nice to meet you.

A very warm welcome to the Community.

Thank you for reaching out to us. I trust you are having a good day today.

We are always here to lend support, help, and advise where we can

Have a good day

@connie00

Suds

Hello Connie, and thank you. Perhaps you could advise me: what do you think is the best way for me to ask questions? I am hoping the people of this community will describe their day to day lives coping with CP. but am I asking too much? Should I be asking a series of smaller questions, such as how difficult is it getting dressed? Doing up zips and buttons? What do people use to help them? Or questions about cooking? And so on. Please everyone. Tell me how you think it’s best for me to approach this? Thanks again.

Connie00

In my opinion its good to be direct, you could ask all people with CP if they wouldn’t mind answering your questions, I know we have many of our community champions and some work in London in our head office.

I am sure many off our members will be only to please to help you @Richard_Scope I believe is our expert,

@Chloe_Scopehas CP These are the two people you need to be talking to,

Richard_Scope

@Suds
As @Connie00 has said it's good to be direct. People will either want to answer or they won't. I am not able to meet you face to face but I'm happy to answer some questions but my answers will not be representative of all people living with CP.

Suds

Thank you, Richard. They don’t need to be representative of all people with CP, because after all, no one is representative of everyone in a particular group.
Could I start with getting dressed? Starting in the morning and working my way through...What’s difficult or takes a lot of time?
if you don’t mind, I might pester you with questions as they come to me. Not all in one go.

Richard_Scope

Well, @Suds
It begins with getting out of bed and into my wheelchair. Then, washing and dressing. Socks are a particular nemesis! By the time by working day begins I feel like I've already completed half of a shift.

Suds

But can you describe how difficult it is to wash and dress? Is it because your fingers won't do what you are trying to get them to do? Do they feel clumsy? Another friend of mine, who developed a form of dementia called PCA, could no longer put her clothes on because her mind could not see which way round they were. And she could not, for example, cut a slice of bread or pin washing on a line because her mind couldn't see what was in front of her eyes. The nearest example she could use was that everything she did was like doing it in a mirror. I realise it's different with CP, but in what way? Why are socks so difficult? Sorry to pester! And thanks.

Richard_Scope

The dexterity and fine motor control aren't there. Everything takes much more time and effort. People with CP expend 3 to 5 times more energy than non-CP people. Did your friend not talk to you about any of their experiences?

Suds

He avoided it because, insofar as I knew him, he didn't want to seem to be complaining. Nobody would have thought he was, but that was his character. It's what I saw. He was a journalist, and typing was exhausting. Yet he did it. Sometimes he dictated to a young secretary (they existed then), and that was a good partnership. He preferred to talk about the books he read, and plays and operas he saw, and constant political conversation there was in the office. He may well have talked about the day to day difficulties that CP gave him, but never to us. I know he got up when it was still dark, often, in order to be at work on time. So much so that if we were out in the evenings he wanted to get home to bed really early because he had already been awake much longer than any of us. This is why I have made this appeal on the forum, to hear from others what I did not hear from him.

forgoodnesssake

I think one thing that you have to bear in mind @Suds is that you are asking for very detailed descriptions of things that are in most cases just part and parcel of a person with CP's lived experience; and it can be incredibly hard to describe things in that way of you have never known any different. Sorry, hard to explain, but I think it is actually very hard indeed for a non-disabled person (of which I am one) to REALLY get to grips, especially in a novel, with the fine details of CP, or any other life-long impairment. And the more details you include the more glaring can be the mistakes!

I am thinking of 2 particular novels, both sort of "crime dramas" where the key character has CP and is non verbal; one is dire and the other less so. Both have obviously done some detailed research...but not nearly enough and also both have chosen to use rather a lot of artistic licence with the impact of the disability in order to further the plot!

I'm not going to name and shame but you may be able to find them...both female authors and both quite recent.

Suds

Do you think it would be worth my while posting some segments for people to comment on?