I was writing a reply to a member on my Ataxia site, which included giving background as she was new. Only when reading it back did I realise how much I have managed to achieve in my life, despite almost been written off as brain damaged before I had even got to the tender age of 2 years old!
My mum had Toxaemia (blood poisoning) whilst she was pregnant with me, as her blood group was Rhesus Neg and mine is O+
It seems this affected the development of my thyroid, obviously whilst she was carrying me I had access to her thyroxine stores but once I was born I was unable to make my own so was very ill, as they didnt’ find it until I was nearly 2yrs old. My auntie told me they did thyroid check as last thing before I was to be sent down to Great Ormond Street, London for a brain scan as they thought I had brain damage as I was unable to even sit up, totally floppy, not feeding properly, and no where near been able to crawl, walk or speak.
They found after a Thyroid antibody count that my thryoid hadn’t developed properly and had never started working on its own so I have been on thyroxine since 23 months old.
I had Epilepsy as a child too and as I was behind in development I first went to Pinderfields Hospital School so I could receive intensive physiotherapy and speech therapy. I had to go to hospital every friday for blood tests as it was only way to check my thyroid levels.
My local school also agreed to let me attend part-time which eventually became full-time as the seizures stopped at around 7years old. After repeating the same year twice, I managed to catch up and end up back with my original class before moving up to secondary school.
I had about 9 years were I was relatively ‘normal’ for want of a better word! I had mild stammer and little clumsy but I could walk fine, ride a bike, skate, take part in PE etc.
After changing over from Paediatrics Dept to Adult thyroid specialist at 16, the doctor decided my thyroxine was too high as Dr Livingstone had always had it on the high side as to not stunt my growth (although I only got to 5ft 3and half fully grown!). After this I started to lose hearing and at one point was ‘profoundly deaf’ with over 100 decibel loss in both ears. Again the dcotors took some persuading that my thyroid levels were connected to this happening.
My mum had to contact my previous doctor who had gone into retirement and ask him to write to the new one, they restored my dose and my hearing improved a little but I still had to wear two hearing aids and I still struggled to work out what sounds were and particuarly speech. I went to a college for the Deaf so I could learn to compensate and learn work skills. The then ‘Employment Training’ scheme funded my place there for 2 years.
I learnt sign although I could speak well at the time and this allowed me to access University via a BSL (British Sign Language) interpreter, where it would have been impossible for me to keep up with lectures via lip-reading and trying to take notes. For some reason I started getting symptoms of an aura from fits and absence seizures and I was put back on Anti-epileptic medication. They had me on 500g Epilim and 500g Sabril. I didn’t know at the time that Ataxia was a side effect of these drugs, or even what Ataxia was, but I had some very weird symptoms whilst on the meds. Despite this I still managed to graduate with a 2:1 BA (Hons) in Deaf Studies with Special Education and worked with deaf children, and autistic children and adults teaching them sign to help them learn to understand language. And to think the doctors almost had me written off before I had reached my second birthday!
By my early thirties I had been off these meds for a few years as the ‘epilepsy symptoms’ had vanished as mysteriously as they had come on. But I started having problems with my sight going in and out of focus, I was sent for Evoked Potentials test to check for MS but it came back negative and the symptoms had worn off by the time I got the appointment in December 2002. We put it down to stress as my dad had passed away from cancer in august 2002.
In Feb 2003 I woke up hardly able to move and had to crawl to textphone to ring my brother, I could stand up with help but was extremely shaky and slow the doctor took one look at me and admitted to me Neuro ward for emergency MRI, again they were looking for MS, thinking it was possibly a second ‘MS attack’ and the sight incident had been the first one. By the next day my walking was better with a stick but still slow, it improved a bit over next few days but I always had to walk with a stick from then if was nothing to hold onto or I fell over.
By 2005 I needed a wheelchair indoors and out and used NHS vouchers to get a Quickie Easymax.It was a struggle getting around our tiny flat though, I couldn’t get over grass with manual chair, I had Inca by then so had got a scooter to manage her walks, which was also parked in hall making it difficult to get chair past unless I pushed it past folded in half to get out front door and also bathroom which was by front door and too tiny to get chair in.
I had no idea how I was going to cope and I did on occasion wonder if Inca would be better rehomed, my speech was starting to be more affected and they still had no idea what was wrong with me as once again they had discounted the damage my thyroid not working properly could possibly do. I went on housing list to be re-housed and acquired services of an advocacy service for the deaf to help me with telling housing people, doctors etc my needs and eventually it seems they decided I was right. A full bloods panel showed my T3 levels were dangerously low and my TSH (Thyroid Stimulating Hormone -in brain) was sky high as it was desperately trying to send messages to thyroid to make more thyroxine, which it couldn’t do as it has never worked.
The Ataxia never wore off despite doctors saying I would go back to ‘normal’ once levels were right, I was eventually moved into adapted housing in July 2006.
After a nightmare encounter with an ‘helper’ which I thought would never end, I managed to get back to living fully independently in my new bungalow. Despite now also having mild difficulties with my arms and Fine Motor Co-ordination I manage to do voluntary research on the internet for Living With Ataxia where I am one of the Community Managers, I also run my own site ‘More Than Words‘ on Daily Strength and Facebook and recently taken post as Technical Advisor for AAC & AT on a forum for Moderators.
Despite my daily difficulties, my days are full with activities and not at all how I envisaged I was going to ‘end up’ in the dark early days when I had no idea what I was facing.