RE Referal 
Tuesday, February 27, 2007, 04:33 AM
I have been to the GP today to request a private health care referral for consideration to be made for a second cochlear implant. The GP was very nice and has arranged for me to have a copy of the letter to give my insurance within the next two days.:yay:

Just have to see what happens from there....:wiggle:

I requested information about the new mini processor and was told in very blunt terms if you want the mini you can buy it yourself.

I donít really understand this attitude as surely it would be better for the NHS if I only used two batteries in said of three?

How would I get repairs/ insurance/ updated maps on a private processor Ė the NHS would refuse to touch it. They already refuse to touch hearing aids provided by other NHS Trusts Ė so I dread to think of the problems that I just know would occur.

But there you have it - it looks as though the mini is not going to be available on the NHS.:waah:


[ 2 comments ] ( 22 views )
RE Ear Mould 
Sunday, February 25, 2007, 05:21 AM
Ok, it does not fit well! :uh::sad: it squeeks a lot and worst it hurts! :sad: So I am back with my old ear mould and off to the hospital to get it redone. *sigh*


On a more postive note depending on your point of view!:

I can answer my partner's belly grumbling :eek:

I can (ew) now hear him actually make a nasty fart

I used to stand outside the door and talk to my partner when he was in the loo (coz he always rushes in there when I have something I just HAVE to know!) Not any more

I can hear people taking a tinkle if I stand to close to the door! :eek:

:wiggle:

[ 1 comment ] ( 10 views )
RE Aid assessment 
Tuesday, February 20, 2007, 05:08 PM
I went to collect my mould today and to my surprise it fitted well :eek: although it feels a bit odd/ different and stuck out quite a bit. I just have to wait now to see if I am allergic to it! :boom:

I asked about how long it would take before the assessment for a new aid

ONE YEAR! :Noooooooo:




[ 3 comments ] ( 22 views )
RE I am so Lucky 
Tuesday, February 20, 2007, 04:41 AM
I was watching TV about the world (possibly only) conjoined twins who share a body - two heads, two arms, one body, two legs. They walked, ran, swam, road a bike and later passed their test and drove a car. It was amazing to observe them as they were two people, but they somehow know what the other one needed - one twin could reach over and scratch and itch of the other twin even though she could not feel the itch.

I think what astonished me most was just how important it is to bring children up with no limits, no bounds, with expectations that they will live life to the full and reach their potential and this is so important because unless children are treated as individuals with unknown potential they will never achieve what is possible for them.

The reason the girls amazed me was because they achieved more than anyone would/ could or wanted to believe possible - but their parents always had faith that they could.

I think my disability by these standards is pretty mild - but when I was growing up I clearly remember being asked by the head of the education department if I thought my mother was "pushy" and if it worried me that she expected me to go to collage/ university/ get a job.

A lot of people have said to me "you really impress me, you work full time, you donít let being deaf hold you back. Not like some people I know who claim benefits."

They honestly donít realise what parents are up against because the central government and the local government create dependency by having low expectations and putting their oppressing views on children before they have a chance to see how great they can be.

Unless you have strong parents who have the confidence to say "your wrong" and bring their children up with the idea they can try their hand at anything it might not work but how will you know unless you try? Then children are never going to be able to reach for the stars.

I guess I am so lucky - coz I got to reach for the stars....:kiss:

I was speaking to a friend about implants over the weekend she is someone who found me via the blog. she reminded me of so many things that I had forgotten about being deaf and how sometimes we are not alone in our experiences as we think we are.

I have a draw full of old aids that I have been given over the years, but I had forgotten I also have a draw full of old ear moulds too. There is no logical reason for keeping them as they no longer fit and have discoloured and cracked. BUT what if :eek: I need them one day! It would be like throwing away a pair of trusted glasses or denatures that had served you for so long! So you chuck em in the draw and get on with life.

Some of them are still brand new in the packet; I even have one set with tiny butterflies set in the mould. Wonder how much I would get for them on eBay? :lol: They are no good to me as they donít fit - but on eBay who knows?


[ add comment ]
RE had an excellent chat with my mate Deb 
Monday, February 19, 2007, 11:13 AM
I had a excellent chat with my mate Deb for hours and hours! (it must have been a while as my ear was burning from where I press it so tight in order to be able to hear her voice as loud as possible.

I dont think I actually need it pressed against my ear - it probably would be better pressed up against the processor - but this is tricky as if I move the phone I hear wind sounds.

It seems to work better if I hold the phone as still as possible. As I have never had to use the phone before it takes some getting use to. I occassionly get cramp in my arm, sometimes in my foot or leg from where I keep so still while talking for so long! :lol:

I seem to hear my mate Deb much better and easier than I do my partner and this may be something to do with the fact that she uses a landline and my partner is on the mobile.

Mobile to mobile is not as clear as
Mobile to landline
Landline to mobile is not as clear as the above
landline to landline is fine unless there is a lot of background sound then I am stuffed.

Still, it is getting easier and easier. I had quite a complicated call the other day and I feel that I got most of it. Occassionly I will ask them to email me a summary of what was discussed so I can go back over it and confirm I have heard it all correctly - which seems to work well.

I am also answering the phone when it rings now and have spoken to random people about various things which normally would get left for my partner to do. So I am gaining in independance.

I know it sounds odd but I never had the confidence to drive far from home, I always called myself slightly car phobic. Now I no longer belive that. I think it was down to the fact that I was really really scared :eek:of what would happen if:-

I broke down on the motorway (I could not use a phone then and I would not be able to hear the SOS phone on the side of the motor way)
If I got lost (cant call for directions)
If I could not find my way back (above applies)
If I got stopped by the police (I would not be able to call a friend to say help!)
If I got attacked by someone with road rage
If someone creepy came over because I was broken down (what the hell would I be able to do!)

The whole idea of driving to far from home (say 60 miles) really scared me. Well I drove 600 miles last weekend, I had my STAT nav, my mobile and I knew I would be ok regardless as if I did break down I could call the RAC and if someone creepy came over and would not go away I could call the police. If I got lost stat nav would show me a new way and the trip went fine.

See, hearing gives you a peace of mind! Who would of thought!

:ahh:

:sigh:

[ 1 comment ] ( 5 views )
RE nearly a second implant birthday! 
Saturday, February 17, 2007, 04:22 PM
It is hard to believe that its two more months and then my implant will have its second birthday! Time flyís so fast!

I noticed our clock sounded different last night normally it sounds like a tic tic tic. But now it sounds like a tic tock which I think is pretty impressive!

I went to our doctorís surgery on Tuesday to see the nurse for a flu jab due to the heart problems - but I had the flu :eek:so she said she would do it when I felt better... *sigh*

While I was there I booked an appointment to see my GP as I would like him to make another referral for a second implant to the Manchester Royal Infirmary cochlear programme as I want to see if my private insurance would consider paying for it. I have a feeling that they will say "bloody hell thatís expensive, NO!" but itís worth a try as I personally feel that I am disadvantaged with only one implant. My reasons are as follows:

a) Lack of overall sounds forces me to sit sideways at meetings and prevents me from hearing from my deaf side.

b) My hearing in my right side is not getting better, in fact itís getting worst

c) Research and consultants state that its best to have an implant before the hearing goes completely - as the brain adapts better when it has been hearing sound.

d) A second implant would improve my overall quality of life and be an asset to my confidence and career.

e) I would never have to have an ear mould made again!

f) I would never have to change the tube again!

g) I could just order my batteries via phone and never have to go to a hearing impaired clinic again

So quite a lot of reasons why a second implant would be good.

A bit of info for all those who do not understand the significance of having to go to a hearing impaired clinic.

I shall set the scene for you:

Imagine a small room with chairs placed around the wall of the room, the reception is to one side and is close off by frosted glass (and the receptionist tends to be very grumpy very rude and takes great offence if you dare to ring the button that said press here for help) and there is a big sign that says take a ticket. I am serious, the same thing that used to be in tesco when you would point out your cheese and ham. The main client group tends to be 60-99 years of age and some of the dears (bless em) tend to shout, spit, (and smell of wee or just plain smell, which unfortunately is one of these things when you get old Ė you either cant smell it or you just cant do any thing about it) Ok, so imagine a room full of rather frail elderly people who have not just had the misfortune to gradually lose their hearing they also tend to have eye problems, hip problems, mobility problems and occasionally very obvious bladder problems. They cant hear a thing thatís being said, some of them ( but not all) may have missed the opportunity of learning to lip-read on the account of losing their hearing late in life, they often have badly fitting hearing aids that whistle, or they tend to not be able to take care of the tube (that is replaced every six weeks and another story Ė which I will get to shortly) or ear mould (which should be wiped or cleaned daily) and the aid checked yearly but somehow never is (I personally have never been called in for a hearing aid servce or MOT so I am guessing most of our elderly have not either.)

I tend to be one of , but mostly the only youngest person there by a good 30-50 years and I have had to go to this department since I was four. I am sure there are plenty of young deaf people that use the department Ė I just never see em.

Now back to the main subject of the story, the department is only open from 1-5pm which is no good if you work full time so in this case I have to take an afternoon of work unfortunately as the department is quite popular and ALWAYS very busy the trick (on my life) is to get there very early like 8 am or earlier if you can and take a ticket and then go to work. Then at one pm you arrive at the small manky room which is now full to the brim of people. At this stage I am generally reminded that this is my future (ie one day I too will be elderly) which is not a pleasant experience by this I mean I am forced to try and not stare too much at people who are clearly in pain, uncomfortable, struggling with their daily life, who are frail and ill and to top it all deaf as well. I dread the day when I will have to suffer the misfortune of being shouted at because the younger generation will assume that I am just one of them elderly dears who are a bit deaf (which I bet the majority of the room are not in that category).

It gets kind of depressing if I have to go there too often. I then get evil looks from every body in the room when they realise I have taken (stolen) the first ticket of the afternoon.

That is, unless some clever (sly) b*gger has been before me and gets to go first. Now what is meant to happen, is the large screen will flash the number of his or her ticket. Now for the life of me, I have never been able to work this out, but what tends to happen is the technician calls out the number (to a room full of very deaf people who are only there because a) their hearing aid is broken or not working or b) they are deaf and need a hearing aid) normally when standing at the back of the room out of clear line of vision and gets frustrated when no one calls ďits me!Ē and staggers over. I say to them every time I go there Ė you do realise your working with deaf people who canít hear you when you call the number Ė but they just donít get it, I guess itís due to their perception that once presented with a hearing aid you now hear as well as any hearing person. I mean if they are that ignorant what chance has the rest of the population got!!??

Now then the thing or problem with tubes.

Tubes go from the ear mould to the aid. The tube is nice and soft and bendy so the sound travels through the aid to the ear and down the normal channels much much louder.

The problem with tubes is they go hard with time. When they go hard they need changing. Simple you may think right? Wrong!

Sometimes the NHS provides a tube which is either slightly smaller or bigger than the hole for the ear mould. There is no way to tell this until you pull the hard tube out of the mould (which cannot in most cases unless your desperate or lucky, be put back) So you end up standing there with a ear mould and a tube that does not fit thinking ďnow what do I do?!Ē and have to take a dreaded trip to the hearing clinic that you hate and have the cheek to charge £3.60 for a full day even though your only there 10-15 minutes.

There have been times when I have snapped the tube and not been able to get it out despite using every pair of pliers in the tool box. My partner has become very good at getting to small tubes into an ear mould Ė but the sound quality is not as good.

The other major bug bear of mine is the quality of ear moulds. For those of you who have never suffered the agonies of ear moulds - a quick lesson. They mix some putty and squirt the stuff in your ear to make the mould. It sets they pull it out and send it off to one of many manufactures. You in theory should get back a perfect mould of your ear with a tube popping out of it.

Sounds simple right? Wrong! You occasionally get back a strange shaped mould which looks nothing like the one that was taken of your ear. It can go into your ear to deep and need shaving of the end to make it fit. Or it can be too short to fit and you end up with EVERYONE trying to be helpful by telling you that youíre whistling. Or it just will not fit your ear no matter how hard you try and pops out.

That is just the start! An ear mould is like a pair of shoes Ėonly it cannot be broken in and I canít apply a blister plaster to the inside of my ear like I can the heel of my foot.

The manufactures use a variety of material ranging from hard to soft, silicon like to more bendy.

Some are more comfortable than others, some make the ear wet some donít, some hurt like you would not believe and some that you would expect to hurt like the b*ggery because they are hard plastic Ė donít.

Its one of those life mysteries to why this might be the case and the only way to find out if the ear mould suits your ear is to wear it. I have on occasions reacted to the material in the space of 10 minutes and my ear has been sore and blistered, and on other occasions it has taken a few weeks or months. The problem starts when you have a sore ear, itís wet, blistered or worst infected. The only thing you can do is leave the hearing aid out until it heals. I hate having to do this Ė however a new mould takes as long as 3-6 weeks so we donít have very much choice in the matter.

As a deaf person using the NHS I do not get a choice in which manufactory does my ear mould and I do not get a choice in how long it takes to arrive. I am expected to sit and wait patiently however long it takes.

To be honest I am sure I would get much better service if I had the opportunity to go private as the NHS waste a lot of money when the ear mould a) does not fit or b) I end up being allergic to the b*astard thing.

Also if a hearing person was told look you need this [thing] its terribly important for your day to day life just so that you can function and get by but its going to take 3-6 weeks for it to arrive and it may or may not be a perfect fit and we cant guarantee you wont be allergic to it. And erm no there is nothing you can do to speed this up, youíre just going to have to be patient and lump it, no there is no complaint procedure thatís the way it is Ė deal with it. I am sure there would be a national outcry.

But for me, its just life.

Donít get me started on RNID and the textphone, lack of mobile suitable for deaf people and lack of interpreters! Now that is another story and a half!

It may seem like to some that I am moaning, or ungrateful. Believe me I am incredibly grateful to all the professionals who made my implant possible. Once a person has experienced life on the other side of the fence where the grass is greener and the people are nicer Ė naturally you want to stay there.

It is a postal lottery for each area and some boroughs provide better service of hearing aids and digital aids than others. Some have a bigger budget and therefore you naturally have a better range of digital aids some have a smaller budget and can only offer you the lower range of digital aid.

Deaf people who have a profound on going sensory loss do not benefit from the lower range of digital aid which provides clarity. This only benefits people who have a mild loss which is stable and not likely to get any worst. People like me get these type of aids thrown at them, and they help very little Ė I needed it to be louder in both ears. I got told it could not go any louder thatís as good as they could do. I mean what a waste of money giving me something that was no benefit to me Ė but could be for someone else. We moved to a different area and bingo I got a digital aid provided by the Manchester cochlear implant programme that worked for me as I could turn it up high enough to get some benefit.

The only bad thing about this particular aid Ė as good as it is Ė is every time I take the hook part off to clean it, I canít get it to go back on tight again. Currently I have a bit of drinking straw (yep on my life) acting as a seal to keep it tight.

The problem is due to the fact that the cochlear implant programme covers my postal address, but my local NHS is not based in Manchester and therefore wonít touch the aid as it comes from a different area.

When I complained to the local NHS hospital about it all they could do is offer me a new assessment and provide me with a different hearing aid based on their recommendation and range of aids *sigh* rather than fix the problem! I would have to go back to the Manchester hospital to get it sorted if I wanted to use that brand of aid. I have tried several times to do this but they ether a) give me a new aid which only fixes the problem if I do not remove the hook (it needs cleaning I have to remove it!) or they give me new hooks which does not solve the problem either.

So over all, I am sure nobody would disagree an implant processor is a lot less trouble.

At the beginning when I got my first freedom processor they did initially have problems with cracked battery packs and split coils and the occasional processor threw a wobbly and stopped working. However they resolved the problems (teething problems I guess) and for the last 12 months I have not had any of the above problems and the processor seems to be quite strong with not a single spilt coil.

With two processors all that would be required would be a monthly telephone call for batteries and a annual check up to make sure the maps are ok with the added benefit that I would be able to hear overall sounds all around me and (I personally believe Ė despite the fact that research disagrees) better hearing.

Phew glad I got that rant off my chest! So the upshot is that I am going to see my GP about a second implant and that will be on the 22.1.06 (a whole 18 days they made me wait lucky I am not dying really!)


[ 2 comments ] ( 4 views )
RE OH POO!  
Tuesday, February 13, 2007, 05:06 PM
:grrh: I managed to lose a some of my blog after our server crashed and died and we were unable to save it *sob* It should have been backed up but the posts from over Christmas and new year seemed to vanish into cyber space never to be seen again. *sigh*

Still could have been a lot worst eh.

I canít quite remember what I said in the last month or so, but I can summarise I guess.

Let me see..... :eek: erm

Well, I did not cope as well as I was expecting when we spent our Christmas in Australia. Which made me realise I still would need a period of settling in before I would start to cope as well as I do with the UK accents.

It was kind of an isolating experience for some of it as I truly did not follow the conversation.

A cochlear will always have limitations (although these are far less than the limitations that hearing aids had)

I felt kind of sad that I could not hear the kids laugh and chat when we went swimming - but I am assured that one day some clever person will design a totally water proof processor. Preferably one that I can leave on my head with no ear section all the time even when I sleep - maybe solar powered so I no longer need to change the batteries? :wiggle:

Over January we had some hail stones which normally I would miss due to the fact that I would not hear the noise. However on this occasion I heard the hail against the window and just knew it were hail stones before I looked out side!! :clap: Never has hailstones been so exciting!

Letís see what else..... Well, I finally realised that in a way I am no longer profoundly deaf but I still have a very real hearing disability. My identity has changed to that of someone who is profoundly deaf in one ear - and with moderately good hearing in the other - with the added complication that I have lip-read for over 30 years and my brain keeps telling me I can hear when I canít see people. EVEN THOUGH I BLOODY WELL CAN. But no my brain remains stubborn and insists that I canít possibly hear what is being said!

Itís like believing something to be green with pink spots for 30 years when everyone else says they are blue. After an operation you can see they are blue but you still think of them as pink even though you know they are really blue

I have reached the stage where I have come to realise that my box of tricks no longer work. I can bluff and pretend to hear if I chose too but it makes life harder. I can depend on BSL signers at big seminars - but I can generally hear much better than I can sign which is a disability in its self but only a recent one!

I have finally realised as an individual with a hearing lost on one side I need to embrace my new disability as being "deaf in one ear" and start to put into play new safety nets and ways of coping.

When I think back to my recent position where I would struggle to hear new people's names and hope that I would eventually pick it up in a conversation or other. It would have been much easier to have said to someone look I'm deaf in one ear would you mind writing down everyone's name on my note pad in order of where they are sitting as I find it difficult to catch them? No one would have minded.

Itís just that this never occurred to me.

Some tricks come naturally - such as sitting in the room with my good side facing the main speaker. Other tricks take time to come to me.

It did take me a while to figure out what my identity is too! This is a little tricky on the phone as I'm using the good side. I have settled on "partiually deaf in one ear" although it feels like I should be saying partiually hearing in one ear! But I guess that would be confusing for other mare mortals....

But I still say I'm hard of hearing "could you speak up" "move away from the noise" "say that "word" again"

Every day is a learning curve!

:ahh:


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RE Back to normal 
Tuesday, November 28, 2006, 01:23 PM
:uh:I got the map changed back to the orginal on Thursday and it has made a difference even though apprarently the change was so tiny. It just seemed to affect me in a big way and sounded really odd and unclear. Like being underwater or listening to a different langugage.

I went to court on Monday and I am still struggling to get names/ dates/ times and keep up with the general conversation. I dont think court work is ideal for me.

One to one is much better and easier now. Short telephone calls which are not complicated and do not have noisy backgrounds or confused people :eek: as I tend to get confused myself then :cool: are easy to follow anything complicated then I get lost :sad: and unfortunly my job tends to be complicated.

I still have a black processor and I think it looks really cool :cool: so I am much happier with that.

There is a guy at work who is blind and we have communication breakdowns most days. He tends to mutter and sometimes I hear him but I dont always realise that he is talking to me. Sometimes he shouts and I do hear it but I block it out as again I dont realise its directed at me. I have tried to explain to him the problem but I dont think he really understands. He knows I sometimes hear very well and sometimes I dont. He has a bad habit of making a joke (which I miss every time) but when I say "I did not hear that say it again" he always replies "Oh i was only joking dont worry!" :uh::eek::sad: so I never get what his on about.

Its strange how some people I can hear really well (normally the ones I dont wish to) and others who I really want to hear I cant!

I think the new setting showed that I am really dependent on it now and my lipreading has gone to pot! I have noticed that if I have it on setting 2T (telephone) and someone tries to speak to me I just cant lipread them any more! Not even my partner and I always used to be able to lipread him no matter what. I think thats quite scary! Losing a really usful skill and there are still so many occassions when I really need it! *SIGH*

I kinda wish I had the confidence years ago to study something that did not require working with people as its still quite hard trying to listen to all these new voices and sometimes I just cant make the words out. I am not from the north orginally and the accent still throws me sometimes and I just cant make out what is being said. I tend to find women easier to understand than men.


I speak to so many people on the phone these days my brain simply just does not work fast enough. So even when I do hear the name of the person I end up thinking who the heck is Lynda???

If anything my brain is working so hard to hear I tend to be slow at making decsions about other things and generally end up in a bit of a mess which I hate as it stresses me out!

I sound quite blue at the moment and I am blaming the winter and my cr*p job for this!

Roll on christmas! That should chear me up!

[ 1 comment ] ( 17 views )
RE its horrible 
Wednesday, November 22, 2006, 05:16 PM
I have actually begged the center to let me come in asap (tomarrow) to get the settings changed back to how it was. They are going to leave the whisper setting as it is as that does work.

I was watching TV today and I did not hear a single word. Normally I can pick out the words from the theme tune "Friends" but it sounded muffled and no oral words came through.

I am starting to predict what people are going to say (I have always had the knack of doing this before) rather than actualy hearing them. It feels like I have a moderate hearing loss because I have to lipread.

I have misheard my partner ever since it was remapped!!! I keep having to ask him to repeat things over and over again.

Its like I can hear the sound but it might as well be french as I cant understand it at all.

:sad:

[ add comment ]
RE Implant to quite 
Sunday, November 19, 2006, 11:45 AM
I was still having trouble with things being to quite. I found soft spoken people very difficult to hear.

I went back to the clinic to see if I could get it turned up. Also now I am using the phone quite a lot, well every day in fact for work. It would be easier if it was on setting two so I do not have to struggle to chnage settings each time the phone rings.

I explained the problem and I was informed that the software has been upgraded now and they have improved the settinges whisper and beam. Which I do not use but the whisper might help with soft spoken people.

I also mentioned how disapointed I was when we realised I was allergic to the silver processor! As I really hated the pink one. I was offered a black one as apparently it can look like a shaddow and is less noticable.

I actually think it looks quite posh, and really like it. Black is always in!

Its been a week since I had the settings changed and I dont know if its any better. If any thing my partner thinks I am hearing worst. It does seem to be cleaer on the phone and louder as well. But I find my self turning to lipread when having one to one conversation as I do not seem to be able to pick the words out any more.

I have the radio on now and I have not been able to pick out a signle word!:eek:

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