Survivor Survey – “Normal?”

Q: Have you found “normal”?

Many survivors report that they feel different to pre-SCA and struggle to get back to their “normal”, some find a new “normal” and adjust to that, what about you?
Responses with name, age at SCA and time since


It as took me nearly 7 years to get back to some semblance of normal I have to take things at a slower pace and realise my limitations.

Lisa,  40, 7 years

I can’t reverse what has happened. I can, and have, accepted where I am now and who I am now.

Andy,  51, 5 years

Will never be the same

Michelle,  43, 5 years


Anon,  36, 11 years

I was lucky got back to normal very quick.

Sue,  51, 8 months

Somedays I feel normal. Others I dont.

Lisa,  35, 4 months


Kym,  40, 3 years

Lost my personality

Anon,  70, 10 months

We now have a new normal and it took a while to get my head around that

Michelle,  50, 1 year

Life will never be normal again

Joanne,  48, 23 months

No I don’t think there will ever be a ‘normal’

Ben,  32, 1 year 2 months

Not yet accepted the ‘new’ as normal.

Mark,  56, 14 months

I feel pretty normal, but until I get genetic screening results, things could always change as I may or may not get a diagnosis.

Clare,  31, Almost 5 months.

I am still not back to ‘normal’

Carly,  34, 1 month

Don’t know yet. Too early to tell.

Joe,  52, 4 weeks

Normal? Pink Floyd summed it up ‘There’s someone in my head and its not me’. The old me is gone.

Brenden,  56, 4 years

Apart from walking I am fine

Maureen,  68, 7 years

Have learnt to adapt with life 90% of the time

Lee,  37, 5 1/2 years

i feel normal

Lynne,  47, 21 months

It took a good 6 months and a further year for it not to be at the forefront of my mind. Now it’s just something that happened

Natasha,  25, 4.5 years

New normal

Stewart,  53, 3 years

Certainly a ‘new’ normal. I will never be the person before, and to be honest, not sure I want to be. The ‘before’ me was a worrier, a little OCD, world on their sholuder’s type, had a stressful job, and somewhat annoying circle of friends. Since, the ‘new’ me, is so much more relaxed, I rarely plan things and just go with the flow, I work for myself and I purposely distance myself from negative people/friends. I keep calm as possible in challenging situations and look at the small things with different eyes, sunrise, sunset, birds singing, smell of rain, laughter….soppy I know, but these end up being so important and get missed so easily. I think the only possible negative things (if it is negative) is I have zero tolerance for other people’s minor ailments. I have never been a sick note kind of person, but now if I hear someone complain seriously about a cold or a headache which they feel they should attend A&E (drama queens) I can be very annoyed and feel disrespected. I guess it may be my own problem, not theirs.

Judy,  39, 3 years

My new normal is no different to my old normal. I was able to take it all in my stride with the support of my family and friends.

Mark,  46, 23 years


Pat,  51, 15 months

I actually found it easy to adjust. It was off to I’ve an ICD bit I didn’t struggle wth it. I was mpre forcused on recovery. You have to think of it as your new normal.

Amy,  17, 14 years

I have a new normal

Graeme,  36, 10 years

New normal

Tracy,  50, 3 years

I think I’ve found a new normal

Dawn,  48, 3 years

i felt different but in a good way. I’ve always looked as what happened to me as a positive and it’s made me a much better person.

Imogen,  21, 2 years

Feel different to before but in a positive way, i am happy with life and as i am

Julie,  31, 8 years

I did notice differences over a monthly period as the were so gradual. I would be able to say I couldn’t do this a month ago. I havent done that in some time so I guess the changes have stopped around at 12 months. But I do notice that its not getting better now but things seem to be getting worse. Eg my arthritis pains are back, I have my first cold since SCA

Robyn,  57, 18 months

Definitely us a new normal but you have to think you are alive and make the most of it

Anon,  56, 15 months