My house right now resembles a mobility store with all the gadgets and equipment in it, but each item plays a crucial role in my battle to stay independant.
From items as simple as jar openers, hobs built into worktops so I can do my own cooking, thermos cups with lids and straws so I can safely carry hot drinks from room to room without risk of burning myself or spilling it everywhere to High Tech Communication aids containing my medical information so I can be understood by strangers in a medical emergency.
My pride and joy is my beloved shiny iMac which sits proudly in my office and which I use daily with the help of Assistive software and special joystick and keyguard.
My scooter and electric chair are ‘my legs’ outdoors around the village, to get up the hills, over the fields and round the little local parks. They give me the independence to walk my own dog and get to the local shops myself.
My chunky old rollator is great for sitting on and pushing myself around the house backwards to get from room to room and around the garden. Its not easily folded but the sturdy seat means I can put larger heavier things on it like boxes, laundry basket, my butt!
The larger castors mean I can get onto the grass with it to play with Inca without having to get electric chair out if I don’t want to and its great strength training for legs as the grass offers much more resistance than indoors.
Although I struggle with crutches for more than a few steps they are handy for getting into smaller toilet cubicles or from car into families houses to save them having to mess about with wheelchair when I’m gonna be sat on sofa all the time anyway! So handy where I know I am going to have some human help available to steady me.
I have found the key to knowing what equipment was going to be best for me, was understanding my own body.
When you are first diagnosed with a condition everything seems very overwhelming, all the long medical names they (doctors/specialists etc) use, the thoughts of how you may end up and what would you do, how would you pay for things you need like electric wheelchairs, helpers wages etc. Will you end up in a care home with no choice? will you get separated from your beloved companions (pets) if someone else decides you wont be able to look after them?
I thought the best way to make sure we weren’t separated was to train her as my assistance dog, so I taught her to help me take off my shoes, bring my slippers, put them on footplate (if I was in chair), put things in washing machine/dryer, take them out, push and pull things – light switches, doors open or closed, drawers open or closed, help with undressing, carrying things, put her toys away or move them out of way of my chair/walker. Together we are a team and I am fully independant.
Of course, there’s only so much a dog can do, she can’t cook my dinner for me or help me with the computer mouse so I also studied Assistive Technology to see what was out there. The problem I had when first looking was there was so much I didn’t have a clue where to start!
Salesmen will always try and sell you stuff you don’t need and convince you their product is exactly what you need, after all they are working on commission! So in the early days I ended up with some items that were totally useless for me and got conned into my first scooter ending up paying double for it and by the time I had finished paying for it, it had broke down and could not be repaired. Enter another salesman trying to sell me another I couldn’t afford but would only cost me a few pound a week!
Anxious not to make the same mistake twice and by this time online I looked to a forum for people with disabilities to see what they recommended and finally found ‘the real experts’. However not all the information applied to me, some people were paralysed which brought with it a whole different set of issues, some were more mobile so how would I know which advise to follow?
My condition been very rare meant I met very few people like myself over the last 8 years. I had to go back to study, not a college course but my own body. I started by looking up Ataxia.
Although I have had the typical Ataxic gait from the onset I didn’t have the constant shakyness (tremor) but instead had more jerky movements of arms when trying to do things. Research only brought up conditions I couldn’t possibly have either mine weren’t as severe or they were things you had to be born with or not associated with ataxia. In desperation I got back in touch with the Neurologist who sent someone from the Neurological Rehabilitation Team to my home to assess me.
This one was more helpful, I learnt about ‘core muscles’ and stability and that I was trying to use my arms and legs to balance my body, she gave me some exercises to do and I got an old zimmer frame to use with wii fit board (as seat on rollator gets in way when trying to exercise with it). She noted my symptoms were more similar to a very mild case of athetoid CP. I had asked her about this as on several occasions in public with strangers they had assumed I had CP. (Cerebral Palsy – usually something you are born with).
At last I now knew where to look and knew some more terms, equipment that suited people with mild involuntary movements were often made more robust and ones for people with motor- co-ordination difficulties or Fine Motor difficulties often have bigger keys/buttons etc.
I had discovered Facebook and the Daily Strength network by this stage and found a few people with Athetoid CP to ask how they managed things. Again it wasn’t easy finding someone with exact same level, many were much more severely disabled and needed switches/head mice etc to access computers or couldn’t use their hands reliably for anything and many were children, younger people who had never known any other way.
Back to the drawing board and more research I discovered Adult onset Dystonia can also mimic Athetoid CP but start to come on in adulthood so emailed Dystonia association whilst waiting for reply I found some clips on YouTube, again these people seem to have much more severe movements than mine were. I still haven’t found anyone with a very mild case of this so I discarded that idea as I have no comparison.
One specialist has told me I shouldn’t discount the theory that I could have a totally unique strain of Ataxia due to it not been genetic and been caused by my Hypothyroidism, fluctuating levels could be causing the fluctuating muscle tone or I could have more than one condition and in some cases symptoms from one condition can cancel out symptoms from the other, or I may only have few specific symptoms from each condition resulting in an unusual combination of symptoms overall and causing confusion over my diagnosis (which has changed a few times over the years).
Finding equipment designed with specific set of symptoms in mind when you have a unique combination of symptoms is no easy task! Some standard equipment has to be adapted and sometimes you can come up with your own solutions.
It has been a steep learning curve over the last 8 years, but I have accumulated a great depth of knowledge on Assistive Technology and AAC and finally feel I understand how my body is working (or not working). My creativity skills have certainly developed as I have had to come up with solutions for doing things and one of my greatest enjoyments has been able to pass on this information to help others.