On the tip of my tongue - talking about Aphasia
Jonathan Hirons's journey following his stroke and diagnosis of aphasia is both inspiring and informative. Here’s a summary of his experience and insights about aphasia:
Jonathan's Experience with Aphasia
1. Initial Incident:
In January 2019, while in a business meeting, Jonathan began to feel strange and soon realized he could not communicate effectively. His colleagues quickly called for medical help.
2. Medical Emergency:
He was rushed to University College Hospital, where scans revealed he had suffered a stroke due to a bleed on the brain. He spent five nights in the hospital and was diagnosed with aphasia.
3. Impact on Daily Life:
- Jonathan struggled with basic tasks such as speaking, reading, and writing.
- He had memory issues, recalling only his postcode but not his full address or other personal information.
- He faced challenges in understanding spoken language but could still sign his name.
4. Support from Family:
His wife, Ann, played a crucial role in his recovery:
- She encouraged him to read aloud daily and used flashcards to aid in word recognition and writing.
- This early intervention was vital for his rehabilitation.
5. Progress Through Therapy:
With the help of speech therapy, Jonathan made significant improvements:
- He regained much of his ability to read and write, although he still experiences difficulties, especially when tired.
6. Advocacy and Awareness:
- Jonathan has turned his experiences into a creative outlet by producing films, including "On the Tip of My Tongue" and "What is Aphasia?" These films aim to educate others about aphasia and its challenges.
- He actively shares his story to raise awareness about aphasia as a hidden disability and the ongoing need for support beyond initial rehabilitation.
Understanding Aphasia
Aphasia is a language disorder that affects communication abilities, including:
- Speaking: Difficulty in forming words or sentences.
- Understanding: Challenges in comprehending spoken or written language.
- Reading and Writing: Problems with reading text or writing coherently.
Key Takeaways
- Aphasia is often a result of brain damage, commonly from strokes, and can significantly impact daily life.
- Early intervention and support are crucial for recovery.
- Awareness and education about aphasia can help reduce stigma and improve support for those affected.
Jonathan's story highlights the resilience of individuals facing such challenges and the importance of community support in their recovery journey.
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On the tip of my tongue - talking about Aphasia
Robert Baldock's Voice of Recovery, Music and Aphasia
Overcoming Aphasia: Robert Baldock’s Journey and Advocacy
This episode of 'On the Tip of My Tongue' features Robert Baldock, a Scottish-based composer and new media artist who experienced a severe ischemic stroke in 2017, resulting in acute aphasia and severe verbal dyspraxia. Robert shares his journey through his stroke, the challenges he faced with communication, and his path to recovery. He discusses his innovative use of technology and alternative communication methods, including a synthetic voice developed from his radio recordings. Additionally, Robert talks about his advocacy efforts for the reinstatement of the thrombectomy procedure in Scotland, demonstrating his resilience and commitment to helping others. For more information on strokes and aphasia, listeners are directed to several helpful resources.
00:00 Introduction to Robert Baldock
00:50 Understanding Aphasia
01:33 Robert's Stroke Experience
03:26 Life After Stroke
07:09 Communication Challenges and Solutions
08:43 Advocacy and Campaigning
09:33 Conclusion and Resources
For more information about Robert and Andy Fielding (AKA MC Zirconium) is on their website
https://www.projectmoonbase.com
Robert's original music can be found on his Band Camp website
https://aleatorymusicsystems.bandcamp.com/music
Support the show: Donate Now
This podcast is funded by https://www.bas.org.uk
To watch Jonathan’s film: https://tipofmytonguefilm.com
http://x.com/buffaloloungeuk
https://www.linkedin.com/in/jonathanhirons/
The Tavistock Trust for Aphasia website
http://aphasiatavistocktrust.org
Robert Baldock's Voice of Recovery, Music and Aphasia
@Rob: [00:00:00] Robert Baldock is a Scottish based composer and new media artist. In 2017, he suffered a severe ischemic stroke, which left him with acute aphasia and severe verbal dyspraxia. This combination of impairments makes all forms of communication, both verbal and written, extremely challenging to cope. He relies on alternative methods like drawing gestures and facial expressions to convey his thoughts and feelings.
Hi, and welcome everybody, and we hope you enjoy this podcast called On the Tip of My Tongue. Now I'm Rob Edwards. And I'm Jonathan Hirons. And this podcast is a follow up to a film which Jonathan made about aphasia. So what is aphasia? Well, it's a condition caused by some kind of injury to the brain, which is often could be a stroke or could be just falling off a [00:01:00] bike and it affects your a bit of.
To use language in all its forms, speaking, writing, reading, sending texts, whatever. 350,000 people in the UK suffer from a debilitating condition called aphasia. Fewer than half this number suffer from Parkinson's, and yet most people have heard of Parkinson's. Whilst almost nobody has heard of aphasia.
Jon: Thank you Robert, and thank you for coming on the on the tip of By Tongue podcast. It's great to have you with us.
So you had a stroke in 2017. So tell me a bit more about that because I know everyone has a different experience.
Robert Baldock: Following a day out with friends, I began to experience a migraine like headache. The pain increased and started to experience ocular disturbances. At some point, I became aware that I had no control over my right arm. I tried to call out that the words weren't there. It was very confusing and frightening.
These [00:02:00] sensations subsided quickly enough, but I decided to get myself into the nearest A & E.
I was given the appropriate tests, which all came back negative. We now know I'd suffered a TI, often referred to as mini stroke. I was sent home and told to call the hospital on Monday to arrange a CT scan. Sadly, I didn't get that chance, and four hours later on Sunday morning, I suffered and survived a serious EMIC stroke.
A scan revealed a large clot in my brain caused by a carted arterial bi dissection damage to the interior of an artery in my neck. Normally, you might be administered a clot busting drug, which can restore blood flow to the brain. However, my friends and family were told this treatment wasn't going to be effective for me.
Things didn't look good at all.
If you have an ischemic stroke caused by a blood clot in your brain, you can sometimes receive a procedure called a thrombectomy. A surgeon carefully threads a tiny catheter through an artery in your groin all the way up and into your brain. Once the catheter is in place, the surgeon [00:03:00] uses a tiny mechanical device pushing past the clot, which opens up like a little neck to break it up and remove it.
It's quite remarkable.
Thankfully, I was able to have the thrombectomy that saved my life. I spent 10 weeks in hospital and a further six months in a neuro rehab unit in Edinburgh. Throughout this time, I focused with a fair amount of determination on rehab, using drawing, photography, and field recording to occupy myself positively and past time.
Jon: So you are no stranger to podcasting and radio. Uh, what's the story there?
Robert Baldock: My background is in linguistics and artificial intelligence, which I studied at Edinburgh University in the 1980s, but my outlet has always been music, whether playing in bands, collecting vinyl, building analog and modular synths, watching at club nights and events, radio and podcast casting were a natural progression.
My musical passions lie in the obscure, strange, and exotic. Initially inspired my dad's fifties and sixties record collection, which featured among many things, the Enoch like Albums Spaced [00:04:00] out and Tony Moo Guitar Factory. These records sparked my lifelong appreciation of Mr. Light, inspiring me to create the spaced out website dedicated to all aspects of his career as a pioneer of stereo and quadraphonic recording.
Project Moon Base was a long running, retro, futuristic radio show and podcast, which I produced and presented with my co-host Caesar Coum with the tagline, the Historic Sound of the Future. It had a simple manifesto, music to surprise, do delight, and occasionally horrify you and music you've never heard before.
That will put a smile on your face. Open your third island Lake UANs.
Robert Baldock: The show often included some regular sections such as the Unnecessary News, numerous science fiction related news stories, and cover versions of the jazz Song Caravan, which over 350 exists.
Aphasia brought an abrupt talk to my broadcasting career, but I have continued to work collaboratively creating playlists for shows such as it came from Enclosure three, a weekly podcast exploring other worldly electronica, old and new, and Manchester Best Charity Shop [00:05:00] Classics, celebrating all the very best sounds to be found around the globe in charity thrift and op shops.
Jon: You create, experimental music under the name of AMS. So are you still performing?
Robert Baldock: Those first days at home following more than nine months in various hospitals were almost as frightening as the stroke itself. I live alone and I quickly realized I couldn't remember how to operate even the most familiar things, the tv, my laptop, the stereo, or even the microwave. The more daunting still was the thought of ever being able to return to the complex world of visual programming to create music.
Neuroplasticity, the brain's ability to rely itself is nothing short of extraordinary, and I've lived through that reality.
Everything felt like starting from zero, but the brain has this incredible capacity to adapt to find new routes when old ones are damaged. Through determination, repetition, and a lot of frustration and patience, I'm slowly relearning. It hasn't been easy. I'm very focused on returning to performing in the near [00:06:00] future, but happy to be creating music and getting it out there via music platforms such as BandCamp.
On the 100th anniversary of Compose, Eric Satie's death are recently released. Broken reimagining is no science through the lens of stroke, thrombectomy and aphasia, deconstructing their fragile forms to reflect my own experience of lost language recovery, and undermine slowly rebuilding itself in sound.
Enjoying the podcast, subscribe [00:07:00] for more episodes and support the journey, please go to tipofmytonguefilm.com in the description. Thank you.
Jon: Now we have to, we have to talk about the way you communicate. Um, so you've got a, a number of techniques. So what, what, tell, tell me a bit more about that.
Robert Baldock: I now live with a suite of profound communication impairments, acute dysphagia, I know what I want to say, but have difficulty at times finding the words and severe verbal dyspraxia, and the words are there. I have difficulty motor planning to create the appropriate sounds, or if this makes communicating difficult, often it's easier and quicker for me to draw, write a require.
Speech and language therapy has been invaluable and allowed me to explore my strengths in communication. Not being able to speak means I have had to learn to use other communication resources to make myself heard. I used drawing, writing, sign and expression prior to my stroke. I was a fairly shy and understated chap.
I've had to force myself outta my show and become a lot more [00:08:00] expressive.
AI has provided me with an excellent tool. I can build the bones of my communication using it for word finding. Then for fleshing out the structure of sentences, losing my ability to speed naturally because of aphasia was incredibly difficult. My voice had always been a big part of who I am, especially after spending years presenting radio shows and podcasts.
I've been lucky enough to work with an Edinburgh based company called Speak Unique, whose voice design technology allowed me to create a slightly more personalized synthetic voice for use in a communication aid. Because I had recorded hundreds of hours of my voice while presenting Speak Unique, have been able to use those recordings to build a voice that sounds a bit more like me.
It's not perfect, but feels more authentically me.
Jon: You've shown a, a strong commitment to advocacy and, and you've campaigned for the reinstatement of, NHS procedure. How would you describe yourself?
Robert Baldock: As a stroke survivor, I know firsthand how life-changing [00:09:00] quick and effective treatment can be. I was shocked to discover that I was possibly one of the last people in Scotland to receive a thrombectomy before the procedure was withdrawn for a number of years. I.
If I'd survived at all, my life would have been very different. That's what drove me to Campaign for its reinstatement. Advocating for thrombectomy has been a vital part of my recovery. It gave me a sense of purpose and helped me turn something traumatic into something meaningful. And while I can't change what happened to me, knowing that my campaigning efforts might have helped someone else get life saving treatment makes it all worthwhile.
Jon: Thank you, Robert. It's been one of the most fascinating episodes we've done. Your resilience and persistence is extraordinary.
@Rob: Before we go, we should mention Robert's co-host Andy Fielding AKA Mc Zirconium, who first suggested he approached Speak Unique, who created his synthetic voice. Finally, [00:10:00] you can find out more about Robert's work on Project Moonbase, www.projectmoonbase.com.
[00:11:00]
@Rob: Thank you for listening to this on the tip of My Tongue podcast. We hope you found it helpful and informative. Now, if you want more help and information about strokes and aphasia, please go to stroke.org.uk. Say aphasia. That's SAY aphasia, or one word.org or the aphasia page of nhs.uk.
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