Improving the lives of people with aphasia and their families

 
 
 
   
 

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Follow the links to Tom’s videos on using
Apple Technology and talking about aphasia.

My name is Tom and I’m in my 20s. I live in my own unit in the city with my dog Jack. Before I got aphasia I got a scholarship to Bond University on the Gold Coast, and I thought how exciting to go to Queensland, so I enrolled in Law and International Relations. I got some work as a bookie’s assistant and then with an accountant and I liked both jobs. When I was at Uni I decided I wanted to make a radio station and my friend and I did that and then later we made a TV station as well. I’m very proud of it because later on we won the Best Up and Coming Club Award. I like creating new things, like when I was at High School I started a student paper – I’d seen them in America when I was an exchange student and I thought they were good. I played sports like squash, cricket, swimming.

My aphasia

I was hit by a car late one night and suffered a severe head injury, fractured skull and a punctured lung and other things. When I was in Intensive Care I had a stroke which killed the part of my brain which does communication. It was about a month later when I came out of the coma they discovered I had aphasia. I was 19.

My therapy

I had speech therapy once a week for a few years and I made progress but it was slow. I can’t read, write, speak properly or understand. My speaking is the best. I don’t sleep very well because of the brain injury so I don’t get up until the afternoon. My English teacher from High School used to come once a week and we did things like philosophy. I’m not sure why but I really like philosophy and I’m learning very slowly, but I enjoy it. I did an Adult High School photography subject at Thebarton but I couldn’t follow a lot of it and there were lots of assignments which my Mum had to write. I did lots of WEA courses, like building a website, African drumming, selling on Ebay, drawing, and some of them were really good.

My main therapy now is through my computer. I use the text to speech function on my Mac to do nearly everything. I’ve been doing IT at TAFE and some things online through the Kahn Academy, which has lots of courses (www.khanacademy.org) and they teach through short videos.

Living with aphasia

I’ve had aphasia since 2006. It’s like a hidden disability. Most people don’t really understand what aphasia is and they think I can understand things. For example, I can’t hear the radio, but I can mostly follow TV. Now that we have foxtel I can stop the program and replay so I can listen again. I’ve got some software that reads a word document to me which really helps. I can stop it and replay. I got a Kindle but it’s useless for aphasia because it reads too fast.

I have to concentrate a lot to understand what people say. It helps a lot if there are no other distractions – noise, activity. It is good doing something with one other person too – in a group I can’t understand when lots of people are talking at once.

It is difficult to keep in touch with friends and new people I meet because I can’t easily do emails and facebook and other things. It’s very frustrating. It takes a long time to read over and over what people say. I got a new phone a few months ago which is the best thing ever – I can talk to the phone and it writes what I say. I can copy that into an email or facebook. It’s fantastic. But it takes a long time to do a few words.

My speech therapist ran an Experiencing Aphasia session with my friends one night so they could understand aphasia more. Bev had some exercises for them to do so they could feel what it was like when it’s hard to find words or read or follow instructions, and how tired it makes you when you have to concentrate so hard to find the word or hear what people say. My friends thought it was terrific.

Current activities

I spend a lot of time on my laptop. I read the news and stuff. I found a radio station in Adelaide for the print handicapped - RPH 1197 - and we went to see them to see if I could volunteer there but you had to be able to read. I’ve been taking my dog to obedience once a week and I think Jack likes that. I’ve made a few batches of beer and that’s been good – takes a long time to bottle it.

I joined the Talkback Committee late in 2009 and that’s been good. I’ve met other people with aphasia and I like what the committee does. They had a big fundraiser which Danny and his family mostly organised and six of my friends came so we had our own table and we all enjoyed the night. The committee is talking about getting a young person’s project going but we can’t find any other young people with aphasia for me to meet with.

Most nights I go to one of my friend’s houses or we go out. I played cricket one summer and I’ve played indoor cricket too. Sometimes we play poker or play station and other things. I like swimming but it’s hard to find a quiet pool. I’ve been playing a bit of golf. I really like going to the movies and with the Companion Card I can go with someone and they get in for free as my companion. This Companion Card is always complicated though because the staff never seem to understand how the card works and there’s lots of arguments when I go to the movies. I get agitated before I go wondering what the staff will say this time.

I’m doing photography at TAFE, and earlier I did computer programming and website design, but it’s hard when I can’t read or write and TAFE read and write software doesn’t work or doesn’t get installed. The assessments are always difficult – they know I can’t read or write, but one subject I still only got a hard copy of the exam questions and nothing electronic. TAFE has budget problems so they can’t provide much support any more.

I like WEA (adult learning) because I can walk to the centre and they have a good variety of courses.

Being Co-Chair of Talkback is good and I chair the meetings now.

I like living in the city and being able to walk to lots of places, especially nearby restaurants. I’m also a member at the Adelaide Oval and it’s easy to get there to watch cricket and AFL.

I like catching up with my friends but many of them are moving interstate now with their work.

I like wrestling with my dog Jack and taking him for walks in the parklands.

Best Things I’ve done since getting aphasia

Getting my driver’s licence back was pretty good as it gave me some independence. Before that I was riding my bicycle but it’s a bit slow.

Getting my unit in the city was terrific. It’s a lot of work organizing everything, but I really enjoy having my own house and gradually renovating it.

I really enjoy travelling and I’d just returned from East Timor when the car hit me. About 18 months after the accident I went to Burma because my Mum was working there and that was really good – very peaceful. Later that year I went to Viet Nam where my mum was but I had whooping cough so that was terrible. They didn’t know I had whooping cough and they thought there was a hole in my windpipe and were going to send me to Singapore for surgery. I went to the Hanoi Clinic every second day and spent my birthday there as well. Viet Nam was great fun.

I went to Hong Kong in 2010 to visit my cousin for a couple of weeks and I went to Nepal with a friend in 2014. It’s good finding lots of different foods and learning about other countries.

I bought a Mac on ebay and that’s really good.

My phone which does speech to text is fantastic.

Getting Jack, my beaglier, is the best thing that’s happened since I got aphasia.

Most challenging thing

Every part of communication is challenging when you have aphasia and it affects every aspect of daily life. You can’t read or write, you don’t understand things, you can’t talk properly.

I used to really like reading books and today I still buy books and I hope that one day I will be able to read again.

It’s hard socialising when you can’t really understand what people say.

I’ve got speech software and I talk and the computer types it out but it doesn’t really work. I’ve got another software program which reads to me what I wrote. I can hear that it’s wrong but I don’t know which words are wrong. So I try and guess what word is wrong; I delete that word and then it reads out to me what’s there and I can hear it’s wrong again; so I guess another word and try and correct it. It can take half an hour to write a short sentence and even then it’s still not right. It’s very frustrating.

Plans for the Future

I’m hoping to improve my reading, travel, learn the keyboard, do some photography and maybe later on do philosophy.

Hearing about Talkback

My speech therapist, Bev Dodd, told me about Talkback. We first went to a National Aphasia Day run by the Talkback committee in 2008 which was on the second anniversary of my accident. They did some interesting things on that day and we learned about aphasia and the association.

How Talkback helps me

We joined the Talkback committee in 2009. I enjoy the monthly meetings and planning our activities and hearing what is happening. We went to the Australian Aphasia Association National Conference in Sydney in 2010 and I met another young person with aphasia – but he lives on the Sunshine Coast so it’s a long way away. It’s good to meet with people who understand aphasia – the committee has members who have aphasia, carers and speech therapists so it’s a very supportive environment. It helps my mum too because she hears about resources and information and meets other people who are carers.
 
     
     
     
 
  Telephoning: 08 8443 5555 The Talkback Association for Aphasia Inc.
302 South Road, Hilton.
South Australia, 5033
talkback@aphasia.asn.au