Naughty But Nice

It was great to see a central storyline in BBC’s popular Saturday night hospital drama Casualty involving a person with Cerebral Palsy. Well done to Cara Readle for showing a person with Cerebral Palsy with dilemmas. Not only that, but a person with Cerebral Palsy who was fun loving but fallible because she drove while over the drink drive limit. I’m not celebrating the criminal offence but I am celebrating the inclusivity involved. Disability does not always mean a halo!!! Long may it continue….

All You Need is a Cuddle

I heard an amazing article on BBC Radio Five Live’s Up All Night Programme tonight about Cuddle Volunteers in Chicago USA. These are specially trained hospital volunteers who undertake to give one to one physical contact to premature babies in the neonatal unit. This gives parents respite and the ability to return to work if their baby is still an inpatient after a number of months. Clinical studies have shown that premature babies are much more likely to survive and their overall physical and mental development improves markedly.

As an extremely premature baby in 1966, in an incubator in hospital for 6 months, subject to the best available care at the time, but subject to the lifelong trials and tribulations of cerebral palsy, I wish that this study was enacted all those years ago! It is a great improvement to neonatal care, and perhaps gives a special indefinable something to improve the life prospects of those impatient little ones

The Blue Genes Time Bomb

I’ve been in very reflective mode recently, with the anniversary of my mother’s death at age 41 releasing a number of memories, both quirky and sad…

I was distraught at 16, holding her on her last morning during a severe asthma attack, until I was moved out of the bedroom by the GP attempting resuscitation. My mother had contracted tuberculosis, a rarity in 1980, and because of asthma from her childhood, didn’t really have a hope of recovery. In her family, chronic asthma skipped a generation, passing from her grandmother to my mother. tick-tock, tick-tock… It is also present in a couple of my nieces and nephews, but with the hope of improved medication, they have a good hope of avoiding fatal asthma attacks.

I am now 42, a year older than my mother was, and yet on the morning of her death, a relative said that she thought that it would have been me to die before my mother. I suppose she had a bit of a point. I was born at 27 weeks, weighing less than 2 kg, given only 5 minutes to live and the almost inevitable cerebral palsy afterwards, due to the infancy of neonatal care in 1966. Follow that with meningitis as a toddler, Type  1 diabetes at 10, with all its hypoglycaemic comas and an accidental medical personnel-induced hyperglycaemic coma which sent me into intensive care 60% dehydrated, and doing a very good impression of an Egyptian mummy! tick-tock, tick-tock!

There is no doubt that the asthma gene eventually played a major role in the death of my mother. My development of type 1 diabetes, where my own immune system caused the disease. It destroyed the smallest, most delicate and, as research into the side effects of diabetes is now showing, one of the most important organs, the Islets of Langerhans within the pancreas, which produce insulin. tick-tock, tick-tock…

This consequence of this genetic destruction, with the visual, kidney, circulation, hearing, dementia, depression and other problems that we are told are in store for us if we don’t try to slow it down, is a genetic time bomb of nuclear proportions. tick-tock, tick-tock, tick-tock…. BANG

Roll on stem cell technology, our best help for genetic disarmament!!!

My Own Wetsuit/Transportation Device

After speaking about Pierre in my last Blog, let’s broaden the subject a little I was musing about wetsuits, not being the most boyant of beings myself (in my first school, I was awarded a Great Endeavour Badge for trying and failing to swim but not giving up – otherwise known as sinking a lot!)

Pierre’s wetsuit helps him cope with life and as a modern disabled person with Cerebral Palsy, I also need things to help me to deal with a world which doesn’t quite fit me. I have a stick which helps me walk without falling over, but like Pierre, this medical help doesn’t complete the job. Pills and potions didn’t seem to help him, and my limited mobility is only safeguarded not improved in the modern world.

The world is more and more motorised, towns seem to be planned for motorists. Getting from place to place is difficult on public transport and parts of my town are inaccessible to most pedestrians, let alone those with a disability. So, I needed a figurative wetsuit. As Star Trek type transporters weren’t available, my wetsuit is a wonderful Emotion Red Nissan Micra Mobility Car, and I will take my Driving Test in a couple of weeks.

You could say that I’m beginning to float at last…