Kategoriarkiv: Posts in English

Third day of the Nordic Aphasia Conference 2019 #nordicaphasia @NAC2019Turku

Today’s theme at the Nordic Aphasia Conference is multilingualism (i.e. people speaking two or more languages). Treating people with aphasia who are multilingual is a real challenge!

The presenters, Mira Goral and Monica Norvik, raised some truly intriguing questions. How does the multilingual brain actually work? How do you know what to assess? If you need an interpreter during therapy, does the interpreter know enough about aphasia (and aphasia therapy) not to correct what the person is saying?

Since I am focused on issues of social media use, I found it particularly interesting that Monica said that social media may be used to get a picture of the person’s pre-onset use of the different language. The videos we make and post online thus become a tool for therapy, long after they were created.

The speaker to close the conference was Tom Sather from the USA. His talk was about ”flow”, or what it means to ”be absorbed in the moment” when living with aphasia. I have never come across anyone interested in this field before, and it is always fascinating to learn about new topics. He made an important point about a problem with ”aphasia friendly” material – do we over-simplify material to the extent that we take away the challenge?

Kati Renvall summed up the days by thanking everybody involved. Everybody did a very good job! I really enjoyed attending.

Finally, the next hosting city of the Nordic Aphasia Conference was revealed. It will be in Iceland! Yay! Reykjavik 2021, here we come!

Second day of the Nordic Aphasia Conference 2019 #nordicaphasia @NAC2019Turku

After a nice welcome reception yesterday evening, and a good nights sleep, the Nordic Aphasia Conference continued today.

Like yesterday, the programme was filled with interesting presentations. I loved listening to Annie Hill and Johanna Naamanka about telerehabilitation, to Ulla Konnerup, Jane Marshall (remember EVA Park?) and Matti Lehtihalmes about therapy in virtual reality settings, to Madeleine Cruice about social media accessibility and to Katie Monnelly about the acutal technology use among people with aphasia. It is obvious that technology is an important topic within the aphasia field. Katie Monnelly concluded by saying: Get it done!

Annie Hill talking about telerehabilitation in Australia

Annie Hill talking about telerehabilitation in Australia

Ulla Konnerup talking about virtual worlds and aphasia

Ulla Konnerup talking about virtual worlds and aphasia

Katie Monnelly talking about how people with aphasia use technology

Katie Monnelly talking about how people with aphasia use technology

I also had my own presentation today. I talked about stories of self and the need to renegotiate them when acuiring aphasia. My point is that multimodal literacy practices gives a person with aphasia a choice of what to include in those stories, i.e. they increase their narrative agency.

I must say that I am a bit overwhelmed over all the positive feedback I got after the presentation. I think I am going to print the mentions on Twitter and put them on my office wall. They will make any struggling day easier, I am sure! Thank you, all.

Helena Taubner föreläser om sin avhandling

I am presenting my PhD thesis at the NAC2019 conference. (Picture stolen from @NAC2019Turku on Twitter)

 

First day of the Nordic Aphasia Conference 2019 #nordicaphasia @nac2019turku

I am excited to be attending the Nordic Aphasia Conference 2019! This year, the conference is hosted by the University of Turku, Finland. (Last time the NAC was in Copenhagen, remember?)

Interesting presentations, inspiring conversations, new ideas and lots of nice people!

Kati Renvall opening the Nordic Aphasia Conference 2019 in Turku

Kati Renvall opening the Nordic Aphasia Conference 2019 in Turku

I especially enjoyed catching up with professor Madeleine Cruice from City, University of London during the poster session. Her work has been so inspiring to me, and I really like meeting her at conferences like this one.

Camilla Olsson from Uppsala University presenting a poster

Camilla Olsson from Uppsala University presenting a poster

Among the oral presentations, I was most inspired by Becky Moss and Abi Roper, both from City, University of London. They are both interested in writing processes of people with aphasia (which is not very common), and since that’s very close to my own project it really inspires me. I am definitly going to stay posted about their projects.

Becky Moss presented findings from a study about facilitating writing through voice recognition software, and there were some truly heart warming stories within her material. Being able to write (again) is not merely a question of putting letters together, but more importantly about keeping a story of self going and maintaining relationships.

Camilla Olsson from Uppsala University presenting a poster

Becky Moss (City, University of London) talking about writing and aphasia

Abi Roper (and a group of others, including people with aphasia) is working on a project about helping people with aphasia expressing themselves online (the INCA project). Part of the project is developing an app for ”Blackout poetry”. The app, called MakeWrite, is meant to stimulate writing in a fun and poetric way, and it is free to download. I can’t wait to try it!

Abi Roper giving a presentation about the INCA project and the MakeWrite app

Abi Roper giving a presentation about the INCA project and the MakeWrite app

The welcome reception starts in a short while, so the conversations will continue there!

 

Second article published!

The second (out of four) article of my thesis is finally published! It is titled ”Still the same? – Self-identity dilemmas when living with post-stroke aphasia in a digitalised society” and it is based on interviews and online observations of nine individuals with post-stroke aphasia.

The journal in which the article is published is Aphasiology, and it is available in a fulltext version at https://www.tandfonline.com/doi/full/10.1080/02687038.2019.1594151

The first article, which is about stigma management in the same individuals, was published in 2017.

Sarah Scott, again

Remember Sarah Scott? Her latest video was recorded to be shown at an aphasia conference in Australia. In it, she talks about so many things that are relevant to my thesis!

She talks about how life took a very unexpected turn when she had her stroke, and how she had to think differently about her future. She talks about how digital technology is decisive for her to communicate with others, because it enables her to convert speech into text and send it to people. She talks about people’s lacking awareness about the fact that young people can have strokes, and the importance of media representations of people with aphasia.

All those aspects of living with aphasia are included in my thesis. Coming up!

 

So, what’s my PhD project about, anyway?

When people ask me what my project is about, I usually answer ”aphasia” and we end up in a discussion (or sometimes more of a lecture from my part, to be honest) about what aphasia is and is not. But, what is my project about, more specifically? Now that I have a year and a half left to the finish line, I am starting to have an answer to that question.

My project is about identity construction when living with aphasia in a digital society, and it is based on four studies. These four studies are at different levels, starting at the individual level (about stigma management strategies when communicating online), moving to the interactional level (about identity dilemmas) and the group level (about literacy practices), to end up at the societal level (about media representations). So my perspective gets wider and wider as I move forward through the studies.

And where am I right now? Well, study 1 is published (you find the full text version here and a Swedish summary here!). Study 2 is submitted to a journal and I can’t wait to hear what the reviewers have to say about it. Study 3 is what my mind is most occupied with right now, since I just completed the data collection. I conducted ethnographic research at a ”folk high school” with an education for people with aphasia, staying there with them for three weeks. It was great! So, the next step for study 3 is to analyze all the data (video, audio, photos, notes…). And study 4 is still being planned in detail, before the data collection can begin. Hopefully, I can soon share some more results with you!

avhandlingsprocessen

 

Go, Malin! – Defence of a PhD thesis about language abilities in persons with brain tumours

What happens to a person’s language abilities when he or she gets a brain tumour (or more specifically a low-grade glioma)? And when the person undergoes surgery to remove the tumour – what happened to the language abilities then? Those are the questions in the new PhD thesis  ”Language abilities in patients with low-grade glioma – detecting signs of subtle dysfunction” which Malin Antonsson defended today in Gothenburg. 

Malin’s work shows that even if the language abilities are severely damaged just after the surgery, the patients recover significantly over the following three months. That’s hopeful! 

The abstract and the frame of the thesis can be found at https://gupea.ub.gu.se/handle/2077/53612

Me and my aphasia – poem by Massell I. Smith

Photo by Diego PH on Unsplash

Aphasia! A time of frightening darkness
Yet in this darkness, I have found myself,
Where an interesting new life has open to me
And inspiration has shown, honest friendship is real

Aphasia! You spark determination and humility
Awake my soul to the wonders of life
From the glory of the sunset, to the fresh morning dew
The unique experience of being alive

Aphasia! What crowded mind, unscrambled thoughts
The future looks grim, uncertainty sets in
But the intelligent mind refuses to cave in
So the struggles go on day after day
As courage endure and inner strength shines through

Aphasia! Never stop learning as babies do
Laughter’s fill the room
As funny gestures and sounds act out words in my head
Elated I stand! Joyful sounds and cheers can be heard all around
As successfully my challenges are met

Aphasia! One message is clear
Experiences in giving, is pure and a delightful joy
Receiving is equal and a blessing from above
So thanks, Is forever spoken by these lips
It’s the love and caring
Sent from the heart
And the smiles that shine through
The receiving heart

Aphasia! Humiliation you bring
My eyes are red, my cheeks are wet
Angry works burst forth as tears flow
Why should I be ashamed?
I never asked for your coming
Yet you are here to stay
But my stubborn will, restored self confidence
Invisible though you are
Our lives are intertwine as long has I live

Me and my Aphasia.

…….

(Poem by Massell I. Smith, as cited in Shadden, Barbara B., et al. Neurogenic Communication Disorders : Life Stories and the Narrative Self, Plural Publishing, Inc., 2008.)

Recommendation: the Aphasia Access Conversation podcast

The multi-professional network Aphasia Access (US) is a true inspiration! Their mission is to grow ”a network of healthcare, business, and community leaders to advance lifelong communication access for people with aphasia” based on the holistic Life Participation Approach to Aphasia (LPAA). They ”believe a world is possible where all people with aphasia participate fully in life”.23482878_10155621027065664_431936211_o

Aphasia Access produces a podcast (available at www.aphasiaaccess.org/podcasts and where ever you find your podcasts) where professionals and renowned researchers such as Aura Kagan, Nina Simmons-Mackie, Audrey Holland and Barbara Shadden (who all influenced my work significantly!) share their stories, insights and aha moments. What a great way to learn more about their experiences!

 

Twitter list about #aphasia

Twitter is the most amazing way to get in touch with interesting people! Not least have I noticed that many aphasia researchers are on Twitter – so I made a list of organisations and researchers tweeting about aphasia!

The list is public for anyone to follow. At twitter.com/heltunik/lists/afasi you find the tweets posted by the listed accounts, and at twitter.com/heltunik/lists/afasi/members you find the members of the list. Please, let me know if you think I should add anyone else!

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