I have Cerebral Palsy and use my toes to operate a computer: This page covers how I have become independent at home
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INDEPENDENT LIVING
I had a plan. I would study hard at school, get a good job, meet a nice woman and live happily ever after. It was pretty much the same plan as many young people I suppose although now I have reached my 40s I am a little more worldly-wise having seen many a fairytale wedding end in the nightmare of divorce.
Therefore at school the daily half hour of physio appeared to be a painful waste of time. I wanted to be learning things that would increase my chances of employment. I expected to find a wife who would dote on me just like my mother; someone who would care for me and attend to my physical needs. The problem is all the women I have met were looking for a man to dote on them!!!
When I reached 30 and found myself still living with my mother (dad passed away when I was 15) I wondered about the future. What would happen when she was no longer able to attend to my needs? A social worker came out to perform an assessment and she calculated that the cost of providing a level of care equivalent to that given by my mum would be £1,000 per week. She hesitated before announcing at that rate the care would likely to be given on a residential basis (this was 1997 so things may have changed since then).
Residential care is not necessarily a bad thing but, given the choice, I think most people would prefer to live in their own home. I decided to make myself as independent as possible to reduce the amount of care that I required. I didn't know if I could make any significant difference but if you don't try you don't get anywhere.
The first thing I needed was some space. I knew if I tried to do anything for myself my mum's instincts would take over and she would be there helping me in a flash. Thus we performed some modifications to our home, knocking two rooms into one to create a "bachelor pad".
While my mum was tolerant of all the motorsport and football that I loved to watch on TV, I think we both revelled in our new found freedom with regard to viewing decisions.
As soon as the room was completed I put in a request for a powered wheelchair. I had one at home 10 years previously but used it so little that I handed it back. I would come home from work and sit infront of the telly while my mum fluttered around me. What a slob I was!
Roughly 6 months passed before the new wheelchair was delivered. In the meantime I did a little experimenting to find out what I could do. I still remember the look on my mum's face that said "Just what are you trying to achieve?" when she walked in to find me with my T-shirt off after I had pulled it over my head. What she didn't know was that this small success had finally come after 4 evenings of trying!
When the powered wheelchair arrived I soon learned to get in and out of the armchair. This enabled me to come and go whenever I wished although it was a culture shock to my mother after 35 years of always being able to find me where I had been left!
Having practised dressing/undressing prior to the arrival of the 'chair I was soon able to get changed and put myself to bed. (So long as I was not wearing clothes that required buttons or zips to be undone.)
Best of all I learned to adjust my clothes and get on and off the toilet. This is probably the most liberating achievement as it means I don't need someone around incase I get "caught short". It has given both my mum and me lots of freedom. The one problem is I have to get on the bed to pull my trousers up (there is not enough elbow room to do this in the wheelchair) so I can only perform this task at home. Social services also provided a Clos-o-mat "wash and blow" loo which relieved my mum of a most unpleasant task.
2011 update: I have now learnt to pull my trousers while perched over the toilet. This means I could use the toilet without assistance when I am out and about - this would increase my dignity and would mean I could spend more time with people who don't know me well enough to help with toileting. It could open up allsorts of possibilities. However my powered wheelchair is an "indoor only" model that I cannot use outside of the house. Steps to obtain a more versatile 'chair are currently "ongoing".
Oh yes... I learnt to close the curtains too! It's seems a small thing but I never dreamt I would be able to do this.
By now it seemed as though nothing was impossible. As it took an hour to be fed a meal, this was the next area to be targeted in my quest to reduce my care needs. In hope rather than expectation I searched the internet for a foot-operated feeding aid. I found one called the Neater Eater.
Social services agreed to fund one if a trial was successful. To my delight, and the amazement of my mother, the engineer managed to adjust the device so that I could use it quite easily.
I now feed myself whenever it is practical - which equates to 80% of the meals at home. I prefer it as I can eat at my own pace. Life is much easier for my mum as she can begin the washing-up while I finish eating. It also means she can leave me some non-perishable supper (usually chocolates) while she enjoys an evening out with her friends. It is on these occasions that the scale of my independence is realised.
This leaves showering which is the one aspect of my personal care that I have yet to "crack". I have tried using sponges on sticks but these soon fall apart.
Away from home a hands-free drinking mug purchased from QED reduces my reliance on others when I am out and about.
The latest technology that is available on the High Street has also aided me in the quest to take greater control of my life. I can operate the TV Remote with my toes. A hard drive TV Recorder means I no longer have to ask my mum to load video tapes and putting all my CD's on the computer enables music to be selected without asking her to find the disc I want to hear.
All this activity has strengthened my body dramatically. I have developed some pretty impressive biceps! While others are losing their faculties as they reach middle age I am gaining them. In many instances each task I master unlocks other possibilities.
For the first time ever I am willingly performing exercises, largely to keep fit and stem the ageing process. Once a day I hold on to the bar next to the toilet and put weight on my legs. Recently I have built up enough strength to let go of the bar with one hand. I feel close to momentarily being able to stand up unaided - how cool would that be?
But I can't progress as fast as I wish, if I over-do it my muscles become stiff; particularly those around my pelvis which I have never used before. On occasions they have become so tight that I can hardly move with the result that all my hard won independence is relinquished. It's very much a balancing act; I'm trying to improve without pushing my body too far.
So do I regret not being a more enthusiastic subject for the physiotherapists at school? If I knew then what I know now then my attitude would definitely been different. Had I done more when my muscles were supple earlier in life, who knows what I could have done with my wayward limbs. But I was never really concerned about being disabled (I'm still not) and so I didn't have the motivation. Only now can I see the possibilities on offer.
However I tend to prefer to have one big objective to aim for. When I was young it was to obtain the qualifications necessary to get a job and now it is to live as independently as I can. I am not sure I would have been able to cope with tackling both goals at the same time.
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