Giving a voice to individuals with apraxia of speech
Living with primary progressive apraxia of speech
Chris Kamara
He’s known for his famous catchphrase ‘Unbelievable Jeff!’ during his football commentary each weekend, but in 2020 Chris Kamara found himself struggling with his speech. He was later diagnosed with a rare condition called Apraxia of Speech (AOS) which is the subject of his new documentary ‘Lost For Words’. Chris joined the Britiish channel ITV alongside his close friend Ben Shephard to share his story. . Watch his film Chris Kamara: Lost for Words - ITVX
Https://merseysportlive.co.uk/2024/06/09/chris-kamara-on-apraxia-diagnosis-and-lack-of-uk-funding/
Chris Kamara's autobiography
The smash hit Sunday Times bestseller. Winner of Autobiography of the Year at the Sports Book Awards
Presenter, commentator, (sometimes masked) singer, footballer, manager and campaigner, Kammy has done it all. His irrepressible enthusiasm and a couple of legendary gaffes on Sky Sports have seen him become broadcasting royalty.
Now Kammy reveals all in this funny and moving autobiography. What happens when you double-cross José Mourinho? What's it like to play with Vinnie Jones? Who comes off better: Kammy or a rampaging gorilla? How did Kammy end up releasing his own top-ten record? What's the real story behind his infamous line, 'I don't know, Jeff!'?
But, despite the crazy tales, it hasn't all been plain sailing. Kammy had a tough upbringing, faced racism during his playing career and has, in recent years, dealt with a rare brain condition apraxia that has affected his speech and saw him say goodbye to Sky Sports. Sharing the details of his battle against the condition, Kammy shows how he’s met every challenge with courage, determination and that trademark infectious smile.
Rory Barnes
Shouting from far away: three poems about living with speechlessness
Rory writes poesm from personal experience of living with primary progressive non-fluent aphasia and primary progressive apraxia of speech. The poems provide a window on this illness ‘from the inside’, and vividly illustrate how intellect and inner life may survive strikingly intact, even after speech is lost. Rory turned to writing after a long career as a solicitor. In 2016, at the age of 74, he began to experience difficulty articulating words when conversing. This deteriorated insidiously, and 3 years later, Shouting from far away: three poems about living with speechlessness | Practical Neurology
at the age of 74, he began to experience difficulty articulating words when conversing. This deteriorated insidiously, and three years later he was diagnosed with primary progressive nonfluent aphasia. His illness has been characterised chiefly by severe speech apraxia, which has largely destroyed his ability to talk. His speech is now limited to sparse, barely intelligible words produced only with considerable effort and there is an accompanying apraxia of other orofacial movements. He currently uses an iPad with a voice-synthesising app to communicate in person. His typing is clumsier, and he now makes some spelling mistakes, as well as occasional binary reversals (‘yes’ / ‘no’ confusions).
Shouting from far away: three poems about living with speechlessness
Shouting from far away: three poems about living with speechlessness
Buy Rory's book (all proceeds go to Rare Dementia Support, https://shop.nationalbrainappeal.org/collections/merchandise
‘Primary progressive apraxia of speech’ can be remarkably pure, leaving many aspects of language and general intellect unscathed. Rory’s case is a particularly striking illustration of this. It is a perplexing syndrome, presenting something of anosological dilemma. A neurologist may see it as the harbinger of atypical parkinsonism on the corticobasal degeneration–progressive supranuclear palsy spectrum. A neuropsychologist might wonder if it qualifies as an aphasia at all. A neuropathologist will generally characterise it as a primary tauopathy. But to convey the bane of speechlessness after a life’s work trading in words requires a poet.
Barnes RJ, Warren JD
Shouting from far away: three poems about living with speechlessness
Practical Neurology 2023;23:176-177.
The last sweet
Do you remember sucking the last sweet, Long in the past, making it last
As long as possible?
Now is the time to suck away
To savour the juice of life
To run your tongue over the texture
To tease out the flavour
To let the sweetness slide down your throat without swallowing.
Cheating time to let the seconds chime Concentrating on what you’ve got
Not what you’ve lost:
The less you have The more precious it is.
An evening out
Around the table
I clear my throat.
And everyone is silent.
To hear my words.
I must take care.
To say something worth their effort
And not to make noises
That silence the conversation
When I have nothing to say.
And pray they will understand my speech And not pretend they have
When they have not.
Fifi
Fifi is my granddaughter.
Aged nine and clever
She called her favourite teacher
Long tempered.
I was looking forward
To arguing with her When she was grown and beautiful
And accomplished.
Now I cannot talk.
I have missed the boat
And must find another role
But I am still her grandpa
And I can write her poems
She can read instead.( Rory JQ Barnes)
Tim Schut
In 2021, Tim Schut learned he had developed Primary Progressive Apraxia of Speech (PPAOS), a rare neurodegenerative syndrome, which will rob him of his superpower: speech.
When community builder, connector, and family man Tim Schut realized his superpower, speech, was slowly diminishing, he didn’t suspect an extraordinarily rare degenerative brain disorder as the root cause.
Buy Tim's book
He also didn’t expect to hear the doctor share a shortened life expectancy of ten to fifteen years. Yet this prognosis has not slowed Tim’s determination or drive to help others. Rather than hide from this disease, he’s choosing to share his story.
In this book, Tim has documented his life and the lessons he’s learned to benefit his children and future grandchildren. Today, Tim has a new superpower, optimism, and in these pages, he’s sharing the wisdom and perspective that has propelled him to incredible levels of family, community, and career success. Read this book and learn from the
stories of a man deeply connected to the elements of life that matter most.
John Corvino
John Corvino
One of Philosophy’s Most Influential Public Voices May Lose His Own. This newspaper article focuses on John Cornino, a US philosophy professor “Basically, the parts of my brain that tell my mouth how to produce speech are gradually shutting down. He is quoted as saying "Over time my speech is likely to worsen, and eventually I may not be able to speak at all.” he shares that he was diagnosed with an unusual neurodegenerative disorder, Primary Progressive Apraxia Of Speech (PPAOS), which is resulting from FrontoTemporal Degeneration (FTD) in the right front lobe of his brain.