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Tuesday, 25 June 2019 14:11

The evolution changing Usher Syndrome

Usher Syndrome is a strange thing, strangely it is evolving even though it hasn’t changed. 

It remains a condition without a cure. There are variations in level of deafness, in level of blindness, in chosen mode of communication, in chosen method of mobility aid(s).

We all have daily challenges living with deafness and progressive blindness but it doesn’t mean we are incapable of living fulfilled lives.

Since my diagnosis and acceptance of my condition I have learnt lots of things not just about the condition but also about attitudes towards it.

Sadly there is still ignorance surrounding it and also far too much negativity.

Usher Syndrome is a challenge for all living with it, however the challenges vary from person to person. 

Communication is an interesting one, age is definitely, in my opinion a big factor. 

It is wrong to assume all with a profound hearing loss communicate using sign language.  At 24 years old I have met lots of people with usher worldwide and my observation is that the older generation of all usher types with varying levels of deafness are more likely to use sign language to communicate, but there are some younger people still using sign language, that said some do communicate orally too.  There must always be consideration of the varying communication types. 

The younger generation, our millennials, are much more likely to be oral, though again some do sign.  I believe the reason for the change is because hearing aid technology has never been better.  Cochlear implants have made an enormous positive difference along with the complete evolution of hearing aids in my lifetime from analogue to digital and more recently the smart hearing aid - yes, assistive technology wins the day. 

It is actually technology that is evolving, not Usher Syndrome and we need to embrace it.  To really embrace it there needs to be more understanding of needs and what assistive technology is available and the biggest ask is we need funding for real enablement.

Ever considered a pair of smart hearing aids would cost less then the equivalent of somebody being unemployed for a year and that is without considering the health and wellbeing of a person able to be an active part of society, to be included is priceless in my book.

Neither cochlear implant nor hearing aids are a cure for deafness but an amazing aid for listening, hearing and accessing communication and information, but that is only the beginning.

Did you know the *smart hearing aids I wear have bluetooth connectivity to a plethora of mainstream technology.  What this means is that sound is streamed directly from my iPhone, applewatch and to my ears, as a result I can now hear and use a telephone which might not sound much to many but when you consider how often help is still only available via the telephone, it shouldn’t be that way but it is.  Using a telephone is also very enabling in the workplace.

Being deafblind and able to hear clearly brings access to the many apps that amongst others Microsoft have developed for the blind that can only be accessed aurally, for instance I can point my phone at an object, person, environment and the app (Seeing AI) will describe it to me.  This enables me to be more independent to not be fearful of not having somebody to ask when I am out and about, on that note I should mention the importance of directional sound for somebody deafblind.  Since wearing smart hearing aids I have benefitted enormously, I can now not only hear a sound, be it speech, a siren, a sound of danger or an alert of any kind I can turn to that sound and act accordingly.  I can now rely on my ears to compensate for my eyes, for me this has been the greatest thing I have experienced since losing my sight.

I always thought I had pretty good speech and I did but since wearing smart hearing aids my speech has improved. I hear speech differently, tones and clarity, a sort of warmness I hadn’t experienced before and has made so much difference. 

I no longer feel the isolation I used to in what was a pretty silent dark world.  Doesn’t everybody deserve that? 

For your information:

These two youtube pieces demonstrate the change in my speech - check me out at age 14, excuse dodgy hair and glasses! https://www.youtube.com/watch?v=z8tXf36Qx6E 

then compare now, thankfully dodgy hair and glasses gone too https://www.youtube.com/watch?v=Hq6rRQTIoqM - don’t we want this for everybody?

 

*Smart hearing aids worn LiNXQuattro by GN Hearing

I regularly champion assistive technology, it has changed my life beyond recognition and I want that for all living with Usher Syndrome who can and would without a doubt benefit.

 

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