I’ve been very lucky up until now, I have of course needed someone’s assistance getting into/out of bed, showering and getting dressed for years; but now at 33 years old I don’t just require assistance I require time, a lot of time, as well as assistance to carry out these everyday tasks. While my family have been amazing giving up so much of their time to help and accommodate me, I decided I didn’t want to burden them with as much of my daily care (getting up, dressing, showering) as well as taking me to hospital, consultant, physio, etc. appointments.
I spoke to my public nurse and filled out the relevant forms to be given PA hours over 15 months ago. I have RECENTLY started to receive those hours.
Having a PA has made me feel more at ease, mainly because it has taken some of the pressure off my family. It’s a great feeling of independence to be able to get up and shower at a time I choose rather than having to depend on my family to make time to help me. The biggest question I have is why did I have to wait so long for it to be approved?
I never wanted to be in the situation I am in today I don’t want special treatment, however why does the government expect people with disabilities to fight for everything that they need? I have no doubt if I stopped a stranger in the street and told them about a few of the battles I’ve had the with the powers that be in order to get equipment/PA hours – simple things that give me some dignity – that stranger would have empathy. Isn’t that the kind of society we want to live in? One that’s fair and equal for us all? So why is it that our government don’t??
Ataxia Foundation Ireland is a new Voluntary National Support Group for people affected by Friedreich’s Ataxia and other Ataxia’s. Their mission statement is “Our aim is to provide support services to people with Ataxia and their families and in order to do so, we have established this organisation which is run and managed by people with this condition.” They welcome any person who has Ataxia, their families and friends to complete membership forms, which are available on their website, under the “Members Area” tab, or by post on request. They have Liaison Officer whom is available to talk to anyone who would like to discuss a problem or simply chat to someone who can help.
They’re a very small organisation and they rely on your support to make their vision for people with Ataxia the reality for people with Ataxia across Ireland. If you’re interested in getting involved and helping them out with a fundraising event of your own, they would love to hear from you and will be there to support you every step of the way.