FA & I: Celebrating 25 years together
My diagnosis
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Using a wheelchair
My powerchair
Foot surgery
Using a catheter
My diabetes
The other stuff
As FA progresses
Ataxia UK Coventry and Warwickshire Support Group
Independent Living
Getting the care I need
Using a hoist
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The Open University
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Walt Disney World

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Last updated: July 2017

Getting the care I need

For a fthe firrst few months of having care I found it all very undignified and I felt so self-conscious, but now I completely feel at ease - I forget that it’s “personal care” they give me and focus instead on chatting to them. I appreciate that anything I’ve got they’ve seen lots of times before - the part of my brain that says “oh no I’m naked” switches off when the carers are around and I don’t even think it anymore.

I also still slightly marvel at the fact that they’re here for an hour in the morning and I sit there at 9:30am toileted, showered, hair washed and dried, dressed and eating the breakfast they gave me. 6 years ago all that would have taken me 2/3 hours and then I would have little energy left over.

Now I sit at 9:30am full of energy and ready to start the day. Every day I’ve got somewhere to go or something to do. I never could have envisioned being carer-dependent and being as fulfilled as I am now when I was a teen.

Promoting Independence

For the first 6 weeks I had something called Promoting Indepence where I was challenged to do what I could do myself, find out what what I couldn't and from this determine how much care I need. I found this a stressful time and I was being told to do silly things like mop my own floors and handle hot food - I had to argue hard for some of the care I knew I needed. But in hindsight I got a lot out of being challenged - I'm a lot more independent than I ever thought I could be.

I am very happy with the amount of care I now receive. I get Direct Payments with which I employ PAs to help me with personal care, exercise, shopping and looking after my home.

My care package

I have 4.5 hours care in total every day - two hours in the morning in which my PA helps me to get out of bed, showered, help me stretch my feet and put splints on (which I've worn since having foot surgery), get dressed, prepare breakfast; followed by 1.5 hours where I stand up using a standing frame, my PA helps me to anything that needs doing around my home, deal with any paperwork that I need help with, and doing any domestic work or washing/drying all sometimes I will use that whole 1.5 hours to go shopping; and one hour at night when my PA helped me to use my exercise bike, get medication etc. ready to be able to take throughout the night, help me brush my teeth, help me to take my splints off and stretch my feet, and help me into bed.

Physically I depend on other people a lot. Te way I see it that care helps me to be independent.

Agency care vs. PAs - what Direct Payments were really meant for

When I first moved in I started to receive Direct Payments and with the help of Penderels Trust's adviceI became an empoyer. This allows me to employ whoever I like to provide my care, who I pay using a Direct Payment from Social Services which is paid into my bank account together with my contribution (the care component of my Disability Living Allowance).

For the first three years I used my Direct Payments to employ an agency to provide my care. Dealing with this agency was a constant stress and I found it impossible to plan my life around them - they were regularly two hours late, and I had little control over the care I was given as they'd follow a "care plan" laid out by Social Services and the agency. I really longed for the freedom of PAs but as I used a mobile hoist to transfer, Social Services had stipulated that I need two people to help me transfer and I wouldn't be insured with any less. So I always thought I'd be stuck with an agency as I'd have no chance of finding two PAs who work together.

I would often have a little rant about the agency on Facebook and after a particular rant a Facebook Friend messaged me saying that she and her sister would be up for being my PAs. They then popped round for a bit of an informal interview, some papers were signed which put them onto my payroll and a week later I had my PAs! Penderels Trust make the process of employing and paying PAs easy.

Carers who work for an agency have to abide by agency rules whereas my PAs only have me as their employer to please. I wrote my own contract which states the hours of work that fit in with me and lists duties that I need. I'm fortunate in that I've found some REALLY good PAs - they feel more like friends than employees and I enjoy having a chat and giggle with them - I feel far more relaxed now than I did with the agency. I can rely on them to be on time, ask them to be flexible when needed and be confident that they know my needs.

Getting food

Many people have asked in the past how I manage with food. We'll start with breakfast: in the morning I'm not very coordinated so my PAs will either put porridge or a Wiltshire Farm Foods cooked breakfast in the microwave or if I feel coordinated enough to use a spoon and can reasonably trust that I won't get milk everything they'll put some cereal with dried fruit in a bowl before they leave. By the time dinner time comes around I'm feeling coordinated enough to prepare my own meal; I order microwave meals with a difference from Wiltshire Farm Foods. These are proper meat and vegetables, pre-cooked that you just heat up in the microwave (see the picture of one of my orders below) - as well as being very tasty the packaging has been designed to make the meals really easy and safe to prepare. They are delivered on the same day and time every week so I know when they're coming and the delivery driver even puts them in my freezer! When my PAs come back in the afternoon they will prepare a sandwich, soup and toast or I will put a jacket potato and some beans in the microwave. I bought a desktop fridge so I have easy access to what's inside.

Wiltshire Farm Foods order


Microwaving other food safely

I use this method when cooking other things in the microwave:
There is too much risk of me throwing hot food all over myself if I was to a) pierce the film on a microwavable food container during cooking, and b) take the plastic film off after cooking. So what I do is take the food out of the container before cooking by cutting open the film and emptying it into a measuring jug and place a Tupperware box on top to prevent any splashes (my dad cut a hole in it so that it fits over the measuring jug handle). The Tupperware box can easily be removed and replaced for stirring the food halfway through and holding onto the measuring jug handle ensures a firm grip whilst doing this and whilst taking to the food in and out of the microwave. When finished the food can be eaten with a spoon/fork straight from the measuring jug.


This website has been around sinse 1998, and although it's changed a lot over the years it's always been about me and my disability. Over the years I have used many different hosts and website design packages. For the past ten years or so I have used 1&1 as my host and I have always been very happy with it. I have always wanted to learn how to build a website from scratch using Adobe Dreamweaver, so about three years ago I got in touch with Polar Solutions and arranged for a trainer to come out to my home to teach me at my own pace. So I now design this website using Adobe Dreamweaver and the skills I learned on that course. I designed the buttons using Cool Text.