The other week me, Agnes, George and Dory were invited to talk to an audience of audiologists. We’d been invited by Sarah Bant, Principal Clinical Scientist & Lead for Clinical Improvement (Adult Audiology) – long badge needed!!
We wanted to explain the difficulties of having hyperacusis and coming out of lockdown, but also the complexities of having hyperacusis along with dementia, which very few audiologists understand.
It was playmate Agnes who first alerted us all to the existence of hyperacusis. It simply means a sensitivity to noise, just like children with autism often have, but with the quirks of dementia thrown in 🙄
You can download her Talking Sense booklet to find out more….either on audio..
Or a copy of the booklet
I was diagnosed a couple of years ago I think, you can read all about my wonderful audiologist and her explanation of the issues on a previous blog
We’re not necessarily going deaf, it’s just certain tones of noise physically rattle our brains. This is where the trouble starts though, as Agnes and Dory havn’t been able to get help even though they’ve been diagnosed with hyperacusis as they have perfect hearing. Whereas me and George both have hearing aids which are programmed to filter out the sounds we can’t tolerate.
So back to the conference. …….we need audiologists to help us cope with coming out of lockdown. We’ve been wrapped in a quiet bubble for so long that going back into busy street and cities will be difficult for everyone, but if hyperacusis is tagging along it will be even harder
I emailed my audiologist asking if there’s a way of calibrating my aids (not sure if that’s the right word, but fine tuning them), to reduce the amplication of sound whilst still keeping out the tones that physically hurt and distress me?
Sadly her out of office came back saying she was away until the middle of April, so I’ll have to be patient 🙄
This would help me gently get used to the noise of traffic again.
We all have that fear of sensory overload once lockdown ends. Some are saying they like living in their silent bubble now, I do, but I also like travelling on the trains and buses so need to find a way to get round all this…
Sooooo few audiologists understand the complexities of hyperacusis and dementia, that many playmates are fobbed off saying there’s nothing they can do to help. But there is if only they took the time to listen.
At the end, Sarah asked us what we’d like to say to all the audiologists….I said something like:
“We need you to give us, the experts by experience, time to explain the issues we have so that you can then use your expertise to solve the problems”