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Items filtered by date: March 2017

We met a lovely lady from Northern Ireland at a Molly Watt Trust ‘In it Together’ event in Edinburgh in October 2015, she has been a hearing aid user since she was 4 years old and was managing very well.

At that particular event we were very fortunate to have a presentation from GN ReSound’s Graham Roberts who was able to share with us the many impressive hearing aids and products available from the supplier.  

That presentation together with Molly’s in depth and ongoing testimony of her GN ReSound LiNX² and how they have enhanced and enabled her life led to an influx of enquiries about how and why these enabling smart aids are not available to those living with Usher Syndrome (deafblindness), particularly as they offer far more than most hearing aids provided by the NHS.

It is fair to say everybody at that event, particularly those using hearing aids where very interested in the enablement smart hearing aids can provide.

Molly coped with standard Phonak hearing aids provided by the NHS until she was 20 years old, however, from 14 years old when she became registered blind, deafblind she struggled and the reason for this in the main was because of her blindness.

For 6 years Molly insisted her hearing had deteriorated even though test after test showed her hearing, thankfully remained stable.  

In actual fact what had happened was her ability to lipread, to use facial expression and body language had gone along with her sight, her ability to access sound and communicate had dwindled, demonstrating just how much the deaf rely on their eyes to hear.  In other words she could no longer ‘fill in the gaps’ that her eyes had enabled.  

It is a fact that the deaf hear with their eyes.

GN ReSound LiNX² provide a hearing experience those who have experienced really benefit from.  They provide an incredible clarity of hearing, they enable directional sound meaning that whilst Molly is blind she can now turn towards a sound, something she could not do with her NHS provided Phonak hearing aids, she can also identify not just where sounds are coming from but most importantly she knows the sounds of danger - just imagine how important that is to safety for the deafblind.

These hearing aids have incredible bluetooth connectivity to iPhone and applewatch, also android devices giving the ability to many deafblind to access aurally things they could only dream of previously.  Using a telephone as a telephone for the first time ever is most certainly a huge positive.

Not only can they be adjusted be independently adjusted but enable a very personal hearing experience and in so doing bring great confidence and independence.

Our friend from North Ireland was one of many desperate to have access to GN ReSound LiNX² and indeed has asked her NHS audiology department, their response was somewhat bizarre - an appointment with the Cochlear Implant Clinic!

Cochlear implant is amazing technology for the deaf, however, not only is it not for everybody it is also incredibly intrusive, expensive and most importantly not what the patient wants why not consider more enabling hearing aids which happen to be a fraction of the cost. 

Figures suggest the cost of 1 cochlear implant would be close to the cost of 10 pairs of best quality smart hearing aids!

There are lots of people who have been hearing aid wearers a long time and like Molly have gotten on very well with them but now need more as Usher Syndrome/ blindness looms close.

GN ReSound have a variety of hearing aids including the ENZO2 for those with a profound hearing loss and whilst they are the creme de la creme of smart hearing aid technology their cost in comparison to cochlear implant is very reasonable.

Cochlear implant involves surgery, it is considered that deafblind people should have two implants to enable directional sound for safety and rightly so,  directional hearing is a must for the deafblind, safety is imperative for all, whatever hearing aids worn. 

Most get one implant at a time so often two surgeries after each substantial aftercare and rehab at huge cost.  

I’m not saying this shouldn't be the case, of course it should where appropriate, however not every deafblind person wants such invasive surgery preferring an alternate option.

Patients should always have a say in their care as it tends to be them who are the real professionals and who will have done the research based on their condition.

I know there is a long and in depth assessment for cochlear implant and so there should be but surely every patient’s individual requirements should be considered?

My friend in Northern Ireland was told there is a 3 year waiting list is this acceptable?  Why not consider best hearing aid options?

We continuously hear that our NHS remains financially fragile, that it needs more funding but very rarely do we hear about solutions, about genuine savings that do not include reducing staff - surely this scenario has to be seriously considered

I would like to say our friend in Northern Ireland’s scenario is unique but sadly it is not!

Tuesday, 14 March 2017 14:59

The love of Unis

Unis came into my life when I was 16 years old.  Looking back I know I did not thoroughly embrace her, I also acknowledge the constant bullying and questioning of my needs had a huge part to do with the way I felt.

Having been born severely deaf and coping well with hearing aids and my daily support, having a service dog of any kind had never entered my mind, why would it?

However, at 12 I was diagnosed with Usher Syndrome meaning I was going from deaf to deafblind and along with that diagnosis came a whole multitude of change.

Unis was a huge part of that change.

I loved her the moment I met her but it took me along time to get my head around having her.

The fact that deafblindness is a hidden condition meant I had been able to hide my condition if I chose to and back then I chose to more often than not, after all I just wanted to appear to be like everybody else!

As beautiful as Unis was and is she made me stick out when it was the very last thing I really wanted.

Behind closed doors she was my everything, she understood me more than anybody, she was always there for me, she never doubted me accept on the occasions I refused to take her out with me - stupidly, back then I would rather fall over and hurt myself than be seen safe and sound with my guidedog.

I look back now and can see my being able to accept myself had been made harder by the thoughtless people around me in school.  They made my life miserable by offering no encouragement or reassurances that I was ok, that I was doing the right thing in having and using Unis as my sight diminished, in actual fact they went out of their way to suggest I did not need Unis and that I should return her.   Without a doubt these were the attitudes that made my life all the more challenging.

That was a time in my life I look back on rarely accept to say this disgraceful treatment of vulnerable children should never ever take place and if in my work I can make that never happen again my suffering was not for nothing.

Unis saw me through those hideous times, she knew how distressing I was finding life, she would sit at my side leaning on me so I knew she was close.  In my time of denial and feelings of depression and isolation she has been with me.

On days when I feel anxious she has been there to calm me down.  Snuggling up to her and stroking her beautiful silky fur has been assuring and also enabling.

Caring for Unis was initially overwhelming but doing so strengthened our bond.

I am never alone with Unis, she understands me better than anybody.  Unis knows when I am at my most anxious, she has been calming and encouraging and has made me go that extra mile on many occasions.

Unis has been more than my eyes over the 6 years I have had her, she has been my best friend, even my therapy, she has kept me sane through the most difficult times.

Sadly Unis has found working with me difficult over the last year and we have together reached the heartbreaking decision that she should retire and enjoy her retirement rather than struggle on looking after me now she has developed anxieties of her own.

Naturally I am devastated and hope my family can keep her as a pet when my new match is found.

Unis will always be special to me, we have been through so much together including some of the most unpleasant experiences in my life and for that I cannot thank her enough.

Even though she cannot deal with the pressures life as a guide dog brings she is still always here for me, she helps keep me calm and focussed on the days I don't feel I want to leave the house.  She knows I care more for her than anything and that I need to give her the same consideration and that means having to go out when I really don’t want to and strange as it might sound once I get out I always feel so much better.

Without Unis on those bad days I might have no need to leave the house and my mental health would absolutely suffer.

Before https://therapypet.org I would not call myself a ‘dog person’ in actual fact as a little girl I was quite afraid of dogs.  My parents bought a dog to try and help me over my fear, I accepted the dog but had little to do with her, however, when she died I was devastated and when the next family pet dog was brought home, the most gorgeous and fun boxer dog called Dexter I grew to love him, he grew to be big and bouncy but also incredibly affectionate and protective of us all.  Without Dexter I would never have opted for a guide dog and in effect missed out on all the positives they bring, not just in guiding me but in everything she has given me over the years.

 

 


  

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