Multiple Sclerosis: friends & family experiences

Norma

I just couldn’t understand why after working and being so full of energy would you suddenly start going to bed at midnight and would still be asleep at 5 o’ clock in the evening, not being able to walk in a straight line. He had a gait in his walk. He developed tremors in his hands and he would not admit to all this.

Robin

So, it was my wife who realised that she’d got MS and she went along to the hospital and got diagnosed and came out and told me and I was thunderstruck, I couldn’t believe it had happened twice in the same family especially with being assured by the doctors that there was no genetic component to MS which we now know is not true.

Jean

My son was relieved. That was his first reaction to it. He thought he had the brain tumour and so he thought he was given a space and he thought, well, the news wasn’t so bad.

Louise

Well, I am a carer, definitely but I suppose for a long time I kind of resisted. I do still resist it. I mean, you know, I don’t tell a lot of people, particularly in my workplace, that I am a carer. I’ve kept that private. You know, that’s been my choice.

Kate

I still, I actually still object to the word, to the word carer, very much so. And when people say to me, “You’re his carer” I say, “No, I’m not actually. I’m his wife. I’ve been his wife for a long time.” So, we don’t look at this as caring at all.

David

So, it always feels like we try, you know we’re constantly trying to juggle things to keep us all going, but also to sort of keep us cheerful. That’s not always easy when you’ve got an illness like MS, because it can lay you flat, it can just all of a sudden knock you for six.

Morris

They always say behind every negative is a positive. And I’ve seen people triumph out of tragic, tragedy so it’s that that I’m focused on. So, you know, we speak yes, I can speak to my dad about all now. So, it’s improved, my relationship has improved dramatically from not talking to being able to tell him absolutely anything.