Adapting to living with multiple disabilities

The last seven years have taught me a lot about people not just others but myself and my ability to cope with whatever life throws at me.

Although I had a slow start and disabilities as a young baby/child (due to been born with my thyroid not working at all and it not been found until i was nearly 2yrs old) I cant actually remember that period of my early life as I had epilepsy until the age of seven. I remember from around 8yrs old so I remember been at a regular primary school, I remember been hearing, been physically able to run about and ride bikes with friends etc.

I know I owe my experience of a 'normal childhood' (between ages of 7 and 16) to my parents who were very dedicated and determined.

At 16 I went deaf after been transferred from peadiatrics to adult thyroid doctor who felt my thyroxine dose was too high and promptly lowered it by 100mcg I started going deaf shortly after. By the end of my first year of mainstream local college I was struggling to keep up in classes and with no knowledge of how to lipread or compensate I was soon miles behind.

After long discussions with college and employment people my parents decided I would be better going to a college for the deaf to learn to lip-read otherwise I was never going to be able to hold down a job if I couldn't communicate with 'the rest of the world'. I think it was an hard decision for them after fighting to keep me out of special schools during my early years but I am glad I was allowed to go.

I learnt alot from other deaf kids who had been deaf all their life, and still been fairly young myself I adapted quite quickly, I was fluent in sign by the end of the first term (it was residential so was exposed to signing all day everyday) and although lip-reading took a while longer to master I was quite good by the time I left and able to follow most people. The other deaf kids though taught me other compensation strategies and I learnt to be aware of drafts, vibrations, reflections off any reflective surface and anything that might signify someone else was behind you or something else was happening based on other peoples body language and where they were looking etc.

So having successfully adapted to been deaf when I later started with ataxia and had to start using a wheelchair, I told myself 'it cant be harder than what I have already been through so just get on with it'. (my dad had also passed away from cancer at this stage just the summer before) it was very much our family motto 'just get on with it'. We had to. When my mum died about 20 years ago, my brother was only 15, I was only just out of my teens at 20 and there wasn't direct payments to get an helper in those days.

I had to find a local job with school hours to be around for my brother (I worked in a day centre for adults with learning and physical disabilities) my wages paid the food bills and stuff he needed for school while my dad worked nights on the ambulances (they got paid more) to pay off the debts from the funeral and other big bills, mortgage etc. You found a way to keep going or you went under it was as simple as that in those days.

I met a few people who were paraplegic at the time I was just getting use to using a wheelchair outdoors and wondering how I was going to manage if I had to go in it full-time. They taught me alot and they still lived independently which reassured me it would be possible for me too i just needed a few adaptions. I soon learnt to get out and about i lived fairly near town then and after getting a mobility scooter I was managing the dog walking and shopping myself again.

About a year after been moved into adapted property I started noticing other difficulties, my bladder was always playing up and I was markedly more clumsy with my hands knocking plates off worktop etc. Also people I didn't know seem to be having more difficulty making out what I was saying and I seem to get more tired just from trying to speak especially if I had to give long explanations.

Typing was getting frustrating as I'd hit the wrong key and sometimes same key several times which is a problem when you use a textphone to make phone calls and are relying on an operator making sense of what you are trying to type. As I'm deaf I cant hear enough to work out what people are saying, with my speech fast deteriorating too I couldn't rely on that. Something as simple as trying to write out what I wanted was getting frustrating I couldn't write a 'quick note'.

For months I would search on internet for a solution for me to be able to type as fast as I used to which was a futile and impossible mission really considering I was trained in Business Studies and touch typing and used to type over 200 words per minute! I spent over £1600 on a Mac computer with Keystrokes, (assistive software that provides word prediction, abbreviation-expansion and on-screen keyboards etc) and a special joystick so I could move cursor as fast as I used to be able to use a mouse.

I have been using a Nintendo Wii for last 2 years thinking if I worked hard enough I could stop it progressing, so did physical exercise everyday whether it was on wii or housework! I used to hate Housework but now it wasn't 'housework', .. for each job I had worked out what muscles it used and how much co-ordination I needed to do it, how many calories it burned off.. as jogging and using an exercise bike was out, as I wasn't able to do repetitive movements fluently like cycling motion with legs with enough speed to burn off calories.

For some things this intense exercise routine seems to have worked. I can still pull myself to standing, get in and out of cars independently, manage a few steps with either crutches, walker or human assistance (one on each side). My sitting balance is still good I sit on floor with legs in 'W' shape (like you do as kids) gives me a wider base and I can scoot around house like this on my bum (another good way for burning off calories). I use one of those 'Bean cubes' to sit on too with legs at either side and staying balanced and sat up straight while playing on games.

On the other hand ...all these exercises in co-ordination hasn't stopped my arms from getting more 'jerky' movements to them, though I guess it might have been worse if I wasn't doing as many hand-eye co-ordination exercises everyday. I'm starting to reach stage where I am using wrist weights to steady hands so I can chop vegetables safely without taking my fingers off and they are are useful for keeping arm steady when I need to iron or want to paint or draw. I don't like them on all the time though as having thin wrists they really ache alot after wearing them an hour or so. I learnt to steer electric chair using big sponge ball on top of joystick then using the underneath of my forearm rested on top of it I have mastered the art of controlling the chair without needing fingers and fine motor co-ordination.

Now I seem to have reached a stage where I have accepted that no amount of special software/equipment is going to allow me to move as quickly or fluently as I could naturally, before I had ataxia, and I have had to learn to be more patient with myself and less of a perfectionist.

It has been a steep learning curve and a long journey so far but as I reach my 40th birthday this summer, seven years after the ataxia started and although it has progressed quite quickly compared to most, I am still managing to live independently. I cant help feeling a little pride in what I have managed to achieve. Everything I haven't been able to do and wanted to I have found a way around. I think I wouldn't have managed this without the internet and the ability to communicate with people of all different levels of ability all around the world.

You Tube has also been helpful as there are many videos of people attempting to dress themselves and do other tasks with limited hand function etc which has given me ideas of how I can manage things now and in future as things progress.

I love my gadgets and already know which ones I need to get for further down the line as some of them can be a great help however simple the idea behind them and can sometimes be used to help in other ways than the original task they were intended for. For example I also use my grabber - originally designed for picking things up off floor, for opening the curtains and operating 'twiddling stick' on kitchen blinds (to open and close them).

And last, but by no means least.. my faithful little friend and companion through this journey.. my 'little girl' Inca. Who has been my ears when I needed her to be, my hands, my motivation to get up everyday .. who willingly learns every new task I teach her, without complaint so that I can stay independent for as long as possible. I definitely wouldn't have got this far without her.