Me and a few playmates, George, Dory and Agnes, have been working with some brilliant audiologists to create a guide for people who are sensitive to noise to help come out of lockdown.
If you’ve read some of my previous blogs you’ve seen how difficult it’s me for me, so I jumped at the chance to be involved in this. George, Dory and Agnes also have hyperacusis.
It all began when the 4 of us spoke to an audiology conference, indicating how they have the expertise to help those of us with dementia with noise sensitivity – hyperacusis.
I’m very lucky that I have my own supportive and wonderful audiologist and her advice contributed to what I had to say. Some Audiologists are without doubt experts in hyperacusis but few understand the part it plays in dementia, so to have them listen was a true bonus and has led to this poster being created
If you read it, although it’s aimed at people with dementia, it can apply to anyone fearing the noise of coming out of lockdown. Many people have been in silent bubbles so many people will find it helpful advice. Also children with autism, those with learning disabilities – the possibilities are endless……
With the street becoming busier, the world becoming noisier and my experiences entering back into the world around me, it was so important that I saw my audiologist, especially after the experience of the last few blogs this week…..
Becky kindly allows me to contact her via email to avoid having to use the phone or someone else having to ring for me. I was due to see her the week before, but she was poorly on the day but she rebooked me straight away for the following Monday.
It was lovely sunny day and my appointment was at 1.30pm, so I decided I would make the 6 mile journey on foot with my camera (although I hadn’t twigged it was 6 mile 🙄) as the buses didn’t fit in with the time.
So off I wobbled, the pond my first stop and Terence and Teresa were both basking in the midday sunshine
And the ducklings were giving their parents the runaround
Along the road now and a blue tit sat perched on the road sign, with a comical quiff being blown into place by the breeze
I was hoping to see the town cows, now released onto the Westwood for the summer, but no sign of them; they must have been on the racecourse side….
Passed the gatehouse, whose garden is filled with all manner of musical instruments
And the blossom on the cherry trees now coming into its own..
Through town and out the other side, I eventually got to the hospital with 15 minutes to spare
Becky then came to get me and there began a wonderful 90 minutes of informative discussion – she’s such a great listener and adapts the outcome to suit the person.
I did confess to not having worn my hearing aids during lockdown. The hyperacusis absent in the silent bubble I was in, so I felt there was no need. However, when you do start to wear them, obviously the world will be much louder, as the amplification to accommodate my hearing loss will make everything seem loud. The brain doesn’t like change from one to the other so I know it’s important to wear them all the time, but it just takes some getting used to when they’ve been absent. It’s like when your ears have been blocked and you have them syringed, the world suddenly seems so loud. I totally understand why some people don’t want to wear their hearing aids as the silent world is sometimes more comforting than the real one….
So I wanted her to turn down the sound while still blocking out the sounds that physically hurt my ears; the sirens, the noisy traffic, metal on metal etc, just while I got used to the world again.
She tried various adjustments, but because we were in a quiet office, I couldn’t tell the difference, so eventually we walked outside and she said she could immediately see the distress in my eyes as lorries rumbled by. I couldn’t process anything . We went back inside and she made her last adjustment.
TIP for audiologists – take your patient outside to see the effect of a true situation….
She then gave me some tips to try…..
Sometimes for hyperacusis it works better for some people not to wear hearing aids at all but for me, the amplification being turned down, should work better. Maybe when the world gets too chaotic, in a room full of chatter where no single conversation can be deciphered anyway, it might be best to remove them, simply to turn the volume down on the chaos.
I could try wearing one hearing aid, depending which side of the road I was and which ear was facing the traffic…..but the loveliest suggestion, was the simplest – spray something on a handkerchief that reminds you of home, for me it would be my perfume; then when the noise becomes overwhelming, breathe in the perfume deeply and it would immediately relax you. She liked the fact I use my camera as a calming method, but this sounded good too.
She told me how someone with autism, loves horses, so rubs the handkerchief on the horse and when the world gets too noise, they smell the horse and instantly becomes calm. She has horses herself and says that if you approach a horse sideways on, then take a deep breathe, the horse will know you’re not a danger. She said it works with other animals too…..all makes perfect sense..
Finally, having a relaxed posture and muscle tone also convinces the brain that the loud noises aren’t such a big threat.
We had such a lovely chat, Becky explaining everything as she went along and wrote things down for me to take away….I felt very fortunate as I left that this healthcare professional listens and doesn’t expect me to slot into her world, but adapts her knowledge to fit my experiences……
I emailed her afterwards for advice re playmates who have perfect hearing, but have been diagnosed with hyperacusis…..her response was:
“Generally when someone has normal hearing and complains of hyperacusis then they have had a bad trigger and then started to avoid noise, often wearing ear plugs in an attempt to protect their ears. This reinforces the brains concern around the hearing system and so the volume appears increased, making the hyperacusis worse. So its all about continuing to experience the noise but with gradual exposure and keeping the ear stable. Also its important for the ears to receive noise information so that the negative association isn’t reinforced. Obviously having a relaxed posture and muscle tone also convinces the brain that the loud noises aren’t such a big threat. “
So the handkerchief tip may work at relaxing the body, but everyone has to find their own coping method..
I felt I understand hyperacusis better now than when I walked in, simply because she explained, she drew diagrams, she listened and took her time explaining and re-explaining. Time is knowledge for people with dementia and a very underrated commodity.
All done and hearing aids in situ, I was hoping to catch a bus back into town, but wasn’t sure where the bus stops were and just missed one without realising it as it sailed by. I walked along further but stopped at the next bus stop as I saw another bus hoping it would get me into town for the village bus. As we turned into the bus station, the village bus was just pulling out 🙈 so I had no choice but to walk back home again 🤐…..
Camera round my neck, the sun beating down, it was a very warm tiring trundle but lovely at the same time. Back through the Westwood and even the golfers were finishing for the day
It took me 2 hours altogether. My legs were protesting and when I looked at my Fitbit I couldn’t believe my eyes
Think I might stay in the village tomorrow ……😂
P.S….a week after writing this I lost one of my hearing aids 🙈…the dreaded masks we have to wear flips them off easily and I didn’t realise. Turns out its happened to lots of others too 🙄…..