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


I have a new normal

Graeme,  36, 10 years

I am still not back to ‘normal’

Carly,  34, 1 month

I think I’ve found a new normal

Dawn,  48, 3 years

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 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

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

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

Julie,  31, 8 years

Have learnt to adapt with life 90% of the time

Lee,  37, 5 1/2 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

Not yet accepted the ‘new’ as normal.

Mark,  56, 14 months

I was lucky got back to normal very quick.

Sue,  51, 8 months


Pat,  51, 15 months

Somedays I feel normal. Others I dont.

Lisa,  35, 4 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

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

New normal

Stewart,  53, 3 years


Kym,  40, 3 years

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

Don’t know yet. Too early to tell.

Joe,  52, 4 weeks

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

Ben,  32, 1 year 2 months

i feel normal

Lynne,  47, 21 months

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

New normal

Tracy,  50, 3 years

Life will never be normal again

Joanne,  48, 23 months

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

Anon,  56, 15 months


Anon,  36, 11 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

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.

Will never be the same

Michelle,  43, 5 years

Apart from walking I am fine

Maureen,  68, 7 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