Fatigue and mild ataxic cerebral palsy

Galadriel

My daughter was born following a lengthy 54 labour and emergency Caesarean section 26 years ago. She had zero blood sugar levels at birth and made medical history at Bristol Maternity hospital by producing 40 x too much insulin. I was an undiagnosed diabetic with a faulty HNf4a gene (MODY) which I passed on to my daughter and subsequent son. Hence the problems at birth. My daughter became a diabetic at age 12. Jenny was a poor feeder, never able to sit up or crawl, she used to roll around to get to what she wanted. By 19 months, she tried to walk but after a fortnight refused to walk again. At this point the consultant told us she had mild ataxic cerebral palsy.
I sent her to tumble tots, and swimming to help improve her coordination, which was successful. By the age of 4 when Jenny started school, she was wiped out with exhaustion by 3 pm. She used to go straight to bed and then I'd wake her up for a meal and straight back to bed. This carried on for years. Her handwriting is poor despite 3 years of private tuition with a home tutor. She never mastered joined up writing. She can't walk in straight line or throw and catch a ball. Something the school could never understand when physically she looks so good.
The fatigue has and will continue to be an ongoing problem for her. By the time she's finished work, she's a project manager, she's ready for bed. Unlike other people she's unable to keep going. Jenny's biggest problem is other people look at her and can't understand why she can't do more. I've tried explaining it but she says unless she can see something definitive to show people that it's down to the effects of her condition, then she is stymied. Is there anything explaining this problem with mild CP?

JadeB

Hi I also have mild ataxic CP. so I heard it only affects one in ten cp cases. I like your daughter also appear quite 'nomal'. Apart from the curve in my spine and my limp. I also become very tired through the the day. Apparently we use more energy than non disabled people to move around. In my experience I think that cp and fatigue are linked. I often have a nap half way through the day even for half an hour and I find it gives me a boost. xx

Stayce

Hi - It may be worth your daughter being referred to Occupational therapist for Fatigue Management (this is something I am doing at the mo). Occupational therapy has changed somewhat to what I remember as a child. The occupational therapist can (if you would like) speak to your daughter's employers about the effects of CP on an individual. Hope this helps Best wishes

JenniferU

Hi @Galadriel,

You might find this discussion by @Annabelandalex09 helpful: 
https://community.scope.org.uk/discussion/29480/feeling-tired

Best wishes,
Jen

Lena Welch

I have mild ataxic CP too and when I'm finished my hours at work I'm shattered. Like you say we look normal, nobody can tell that I have CP or visual impairment in fact