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Cognitive communication problems

My 36 year old son has had MS since he was 15. In the early days his problems were the typical physical tingling finger dragging a foot swallowing etc but these seem for now to have abated but he is left with a lot of cognitive problems. These cognitive symptoms isolate him because communicating and organisation are the areas of his brain most effected. His speech can be difficult to understand particularly when stressed and to compound matter further dyslexia limits communication on boards like this. I would be particularly interested in hearing from similar people or carers, he can’t be the only one out there.

Hi.

My wife has cognitive and comunication problems, so no you aren’t alone. She first developed MS about 30 years ago and is now in her early 50’s. The cognitive and communication difficulties started a couple of years ago. As it progressed I started to notice various ways in which she could gesture; eye movements, head nods, smiles and other facial expressions and have learned to interpret those. I have to ask questions very carefully, avoiding questions with choices and phrase them so that they only require a yes or no answer. And some times I have to be very patient and realise that when I don’t appear to be getting an answer it is because she thinks that she has answered but the MS has interupted that - so it is sometimes a case of trying several different ways for her to communicate an answer.

I don’t know if that is of any help, but at least you know you aren’t alone in facing this problem.

Regards.

Hi, And I thought I was having a hard time with my sons situation. I could probably learn a lot from you about early signs etc that your wife would have had but I have learned in life if you are not ready to face up to the answer don’t ask the question. I take it you are your wife’s career do you manage to get out at all? Mike

Hello again.

My wife has quite a large are package and we have carers in the house for getting on for 6 hours each day, though I am still the main carer. She has now reached the stage of being pretty much bed-bound. And no that does not mean that your son is likely to follow suit. A cliche I know, but it is true that no 2 people with MS have the same symptoms or outcomes.

It is difficult for me to get out much - I have manupulated carer visits so that I have a reasonable break in the afternoons - 3 hours between calls that allows me some leeway. I also have some respite (sit-in) time allowed by social services, a magnificent 1 hour per week - which I tend not to squander every week, but manage an evening at the pub about once a month, though I have to be home by 10pm as the carers can’t work any later.

I deem the afternoon break as ‘my time’ and do with it what I want - it is important to try to have some time just for yourself and to do some non-carer things. And yes I do break my rules sometimes.

Trying to watch for ‘early’ signs is just self-punishment - if you are the type of person who can be a carer, and I suspect that you are, then you might just as well jump in blind. Years ago my father gave me a guide in life that has really helped me to come to terms with things; he said “Only worry about the things you can have an affect on. Do what you can and then move on to the next thing. Never waste your time worrying about something you can’t alter - that’s just beating yourself up for no good reason.” I can’t affect the course of the MS but I can affect the quality of life for my wife, so that’s what I do.

Once again your comment bring me to a halt. I think I am too selfish to be a carer like you. I hope I never have to find out. I will take your fathers advice about not worrying about it today. That night you have once a month to go to the pub must be quite an event for you, hope they have to carry you home ha ha