Neuropsychology

Today I went for a neuropsychology appointment to check my cognitive function as my memory has worsened as my ataxia progresses.

The problem is I haven’t had this test before so can’t compare the results. Overall the results were good with a few areas showing a reduction in ability but the doctors don’t know if these areas have always been deficient or whether it is recent.

So I’m having to go with my own knowledge and that of my families that my memory has reduced in ability and I’m not storing information as well as when the ataxia did not affect me.

So I will carry on and try not to multi task as like a man I can’t anymore!

So one thing at a time and the next thing is eating a big slice of cake!!

Absent Minded

Over the last few years as my ataxia has got worse my memory has also declined. I regularly forget names, numbers, day to day things and turning off the hob.

As the weather cools I thought it would be nice to make some soup and spent hours simmering chicken bones, garlic and celery to make a nice stock. I then added swede, carrot and potato for a lovely veggie soup.

Leaving it simmering on the hob I went and sat down promptly forgetting about it and setting a timer. Having fallen asleep I was abruptly woken by the smoke alarm so leapt up, fell over, staggered to kitchen, fell over, turned off hob, fell over, turned off smoke alarm and collapsed in a heap on my sofa.

If anyone wants to bring me homemade soup they can!!

Welcome to my blog

I’ve lived my entire life with a rare disease and now I’m living with a second one. Growing up the hospital was my second home and I felt it was time to share my story. Over the coming days/weeks/months and years I will slowly be sharing parts of my life that have shaped how I live and manage.

This blog is not to make you feel sorry for me but to raise awareness of rare and genetic disorders. Raising awareness leads to better understanding and treatment from others in both a medical capacity and a day to day capacity.