I discovered in August 2009, aged 43, that I’ve got some mild mid-frequency (so called Cookie Bite) hearing loss in both ears which I’ve probably had all my life. You can read about how it was discovered here. I’ve been completely unaware that I’ve had a hearing loss up till now and I can hear perfectly well in quiet environments. Unfortunately my job as a lecturer on an art and design course involves conversing with groups of students across a noisy open-plan space and this is beginning to cause me a degree of difficulty which feels disproportionate to the small amount of loss I actually have. I am investigating ways of working round this, and hope that some of the strategies I’m about to unleash on my unsuspecting colleagues and students might actually improve the learning environment generally. Watch this space…

 

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134 Responses to “About”


  1. 1 deirdre nelson January 8, 2010 at 11:15 am

    hey moira
    jo has told me of your blog so i must get reading ..
    catch up soon southside

    deirdre

    • 2 moiradancer January 8, 2010 at 11:37 am

      Hi Deirdre,
      happy new year, hope you don’t feel scared after reading it!

      Moira

      • 3 Paul Masters January 7, 2015 at 3:22 pm

        Hello Moira,
        I’m not sure if I will manage to get this letter to you, nor if my attempts will be welcomed, but I feel moved to get in touch with you after discovering your cookie-bite blog. It is lovely to read something on the internet that is so beautifully written and illustrated, and I wanted to thank you and congratulate you. It’s all right, though; you don’t need to pay me, nor even acknowledge my note. You have already more than fulfilled your side of the bargain.

        I, too, was a teacher. Foreign languages, in my case. French in particular. Luckily most of my life was spent in private schools where the classes were small enough and the pupils generous enough to allow themselves to be disciplined into keeping quiet when I requested peace. As a result my Headteacher and the Board of Governors never learned they were employing someone only partially suited to the work of listening to the developing pronunciation of the pupils in my care. And fortunately the pupils themselves didn’t play up either since they were also unaware.

        But they were not alone, since even I had no idea that I was partly deaf.

        One of your blogs was about an unheard burglar alarm; my moment of truth involved the alarm fitted to the piggery at a local farm, which functions if the temperature exceeds a certain limit. It often sounds in the summer months, apparently, but I had never heard it before wearing hearing aids.

        I live in France, and always excused my lack of understanding on the locals, who never speak English. Or perhaps they do. All I know is that I cannot follow their conversation, whatever language it is in.

        Like you, I enjoyed music from the earliest years. But no choir ever managed to get its balance right, in my opinion. The Altos were always to blame, I’m afraid; they sang so softly that they were almost inaudible.

        I probably reached 55 before suspecting there was a problem and now, at 67 live alone in more ways than one. Your beautifully crafted little blogs have brought a rueful smile of recognition to my lips, not unlike my reaction to reading David Lodge’s novel ‘Deaf Sentence’ (try it, if you have not already). Thank you!

        Meilleurs voeux – Paul

      • 4 moiradancer January 7, 2015 at 6:58 pm

        Hi Paul, what a lovely letter, I really appreciate your comments and you have brought a smile to my face on a very dark and dreary day in rainy old Glasgow.

        Fascinating, too, to hear about your school teaching experiences in France and the fact that you were unaware of your hearing loss until some overheated piggies brought it to your attention! You may even have given me an idea for a new post on the cookie bite moment of truth, watch this space 🙂

        It’s amazing how long cookie bite hearing loss can go undiscovered because we all find a way to justify not hearing certain things. When I moved in with the spouse after living alone, I was very puzzled by his habit of listening to the radio at an almost inaudible volume whilst reading the weekend papers in bed. I genuinely assumed he just liked a bit of faint musical background noise and didn’t want the radio commentary to intrude on his reading…

        David Lodge’s novel is indeed a great read, so I am very flattered to be mentioned in the same sentence!

        Meilleurs voeux to you too,

        Moira

    • 5 carologuswoodruff July 15, 2016 at 5:10 pm

      Today I got my first set of hearing aids. I figured this would be a day of discovery–hearing things I havent heard in a long time, figuring out how to put these objects in and around my ears, seeing if I can hear my colleagues without staring at their mouths; you know the drill.

      The last thing I expected to find was a website that cracked open a hidden vein of humor. I stumbled upon your site searching for skins or covers or anything to funk up my hearing aids. Somehow landed on your site and have spent most of my lunch hour reading and laughing. (The automatic captioner is brilliantly diabolical or possibly diabolically brilliant.)

      Somehow you have managed to make humorous a rather grim fact of life and be snarky and whimsical all at the same time. I thank you.

      Is your catalog of Innovations ready yet?

      -Carol

      • 6 moiradancer July 21, 2016 at 12:38 pm

        Hi Carol, thanks for your comment, and delighted to hear there is an audience for the diabolical Kookybite Innovations, I just can’t think why my brilliant ideas are being overlooked by the major hearing aid manufacturers 😉

        Hope your new aids are working out for you, and that you are now enjoying the novel experience of being able to turn your colleagues on and off at the flick of a battery compartment!

  2. 7 Mary McQueen February 8, 2010 at 11:31 pm

    Hi Moira!

    Just bumbled across your new blog whilst looking for news about hearing aids to compensate for the cookie bite trouble.

    I’ll follow your blog, keep going!

    Myself, I tried expensive hearing aids 3 years ago. Maybe I’ll try again soon. For me, the volume required to amplify the mid tones made the volume of the sounds I could already hear…unbearable.

    good luck to you.

    Mary

    • 8 moiradancer February 9, 2010 at 9:37 am

      Hi Mary, my loss is pretty mild but I’ve been really surprised at how clever these digital aids are. I’ve got better than normal bat frequency hearing in one ear, but really loud things seem to get cut out automatically, so clanking dishes, pneumatic drills, fire alarms, etc don’t seem to get amplified. Only thing that’s unbearable is people whistling, but I’ve been cured of my own incessant whistling habit overnight!

  3. 9 Paednoch May 20, 2010 at 1:05 am

    Umm…post your audiogram. I would be willing to bet your hearing loss is worse than you are willing to admit.

    Also with new multichannel hearing aides the frequencies that are normal can be programmed not to amplify. Therefore no more out of this world amplifications in ranges your hear. I suggest an aid that has at least 16 channels.

    SIncerely,

    King Cookie bite (less than 10dB in the 250Hz and Less than 10dB in the 5k Hz)

    • 10 moiradancer May 20, 2010 at 12:44 pm

      Alas, as an NHS patient, I don’t have a copy of my audiogram, but I was told it’s all in the Mild range. I have Moderate to Severe powers of hyperbole though…

      • 11 Anita March 9, 2015 at 1:41 pm

        I admire your blog so much, it’s very funny indeed.

        I have profound ‘ski slope’ high frequency loss which the most advanced hearing aids cannot cure; I have some – but unfortunately the daleks I can hear do not currently speak English. Perhaps they will do so with more practice.

        I do have a copy of my NHS audiogram, though. I find if you ask, they will give you this vital and personal information (extraordinary it’s not done as a matter of course).

        Thank you for the laughs and I wish you all the very best.

      • 12 moiradancer March 10, 2015 at 11:40 am

        Thanks for your kind comments Anita, and hope the technology will one day become good enough to send your unintelligible daleks packing!

  4. 13 paulinelazarza June 15, 2010 at 9:14 pm

    Hi Moira, just found your blog – gosh! you’ve been through the mill!

    Pauline xx

  5. 15 Morag July 13, 2010 at 2:29 pm

    Well just spent a very enjoyable half hour hee hawin at your chronicles. I have the same cookie bite problem and the same sometimes hysterical situations. Only got diagnosed 2 years ago at 45 and am so chuffed to have found your site. All the best.

    Moon

    • 16 moiradancer July 13, 2010 at 7:48 pm

      Hi Moon, thanks for that, this site is so niche that I feel like the old man living alone with his cats in the wreck of the Whitehouse in the Jenny Agutter version of ‘Logan’s Run’. Whenever anyone passes through I’m amazed and delighted! All the best to you too.

  6. 17 paulinerafferty July 25, 2010 at 12:04 pm

    Hi Moira,
    Tom says many thanks for the photos you sent him! That his Cultural Identity card from the Glasgow schools trip he was part of had survived so many years really amazed him. He’s been winding Moira up for many decades now about being the only person in the house with a bona fide cultural identity & here at last is the proof!

    BTW – Mart & I are in Rothesay on Thursday/Friday this week if all my complicated train travel plans work – if you happen to be around, maybe you’d fancy a small refreshment or two…
    love, Pauline xx

  7. 18 Sara Paton October 25, 2010 at 8:26 pm

    Hi Moira,

    I was just diagnosed with mild to moderate cookie bite hearing loss and I am also a professor at a university who teaches alot. I am enjoying reading your blog, thank you!

    • 19 moiradancer October 25, 2010 at 9:32 pm

      Hi Sara,

      very nice to hear from you and welcome to the club…I’ll bet you’ve got a lot of mumbling students too!

      • 20 Sara Paton January 26, 2011 at 3:39 pm

        Yes, tons of mumbling students 🙂 I am experimenting with my first set of hearing aids and still not quite used to the whole experience. I got them less than a week ago and the first 2 days felt like I was in a different universe as everything sounded different. The hardest for me was the voices, my children didn’t sound the way they were supposed to. I have my first class with hearing aids tomorrow, should be interesting.

      • 21 moiradancer January 26, 2011 at 8:50 pm

        Would love to hear how you get on Sara. I felt totally overwhelmed by the noise in the first few days too, but the difference in hearing in certain situations at work totally surprised me and made me persevere. Know what you mean about familiar voices, wonky initial settings for me caused the spouse’s dulcet tones to make the hearing aid rattle really unpleasantly whenever he got within a couple of feet of me. I decided for the sake of marital relations not to let on that the sound of his voice now made me want to claw my own ears off, but fortunately a bit of tweaking to the settings later on made everyone sound totally normal again.

        Good luck tomorrow!

  8. 22 cyborginafield January 19, 2011 at 3:17 pm

    Hi Moira, Just been reading yer blog and remembering how it was with hearing aids, hee hee, funny woman you are.

    I have a cookie bite hearing loss and got my first aid at 18yrs second at 21 now I have got( only last aug) a cochlear implant. I have only just found out it was cookie bite hearing loss, I didnt realise it had a name!!

    Just wanted to say, fab blog. Please feel free to read my experiences about my C.I

    Cheers
    Soozie

    • 23 moiradancer January 19, 2011 at 5:47 pm

      Hi Soozie, lovely to hear from you, and I’m looking forward to having a proper read of your blog after having a quick sneak peek just now. It looks like I should be able to wave to you from Bute!

  9. 24 Sara Paton January 31, 2011 at 6:31 pm

    Hi Moira,

    Well the first class went okay. I’m not sure it helped alot in that situation. I still had to walk near to the student asking the question in order to understand what was said. Maybe it is unreasonable to expect the hearing aids to do that? I am getting used to the sound differences. There are benefits definitely, I can hear the people on the movies now instead of asking my husband to tell me what they said 🙂 I’ve had a few noisy situations and that was not fun yet. I had a Girl Scout meeting at my house one evening and 15 loud girls about did me in, at one point I found myself backing away from the group with my hands over my ears! I agree with you though, I think I need to persevere and get some tweaks on the aids later this week!

    • 25 moiradancer February 1, 2011 at 7:20 am

      Hi Sara, glad it went okay. I’ve found that I still need to get close, unless there’s that rare person with a nice loud voice in the group. The aid doesn’t make an earth-shattering difference to me in the classroom, I just don’t feel like I’m straining so much in certain situations, although there’s still a lot I don’t catch in the large group scenarios. I think that teaching environments are really tricky acoustically, and it’s much easier to clearly identify improvements in more ‘standard’ listening environments. The novelty of hearing the tv in its full glory at home will never fade!

      Ooh you have my sympathies with the shrieking girl scouts, it took me a few weeks to be able to cope with a lot of noise, but sounds that are still unbearably loud once you’ve got used to the aids can definitely be cured by a bit of tweaking. Hope you have a shriek free few days!

      • 26 Sara February 2, 2011 at 7:04 pm

        Thanks Moira for the notes, they are really helpful to me. Husband is good to sound off to and supportive, but doesn’t really understand what I’m going through obviously.

        One interesting sound I hear now is the crackling of paper. I could hear it before, but not as crisp and loud as it is with the aids. I am enjoying “hearing” certain things. I have the aids that go in the ear, that is taking some adjustment as well. My right ear is having a harder time adjusting than my right?

        I wanted to ask you if you have found any good information/literature on cookie bite hearing loss? My ENT and audiologist seem very vague in the prognosis of the loss and I am curious as to whether in general it gets worse, and how worse. I have done some online searches and a PubMed search but all I really find is what a cookie bite loss is, without much depth.

        We are in the middle of an icestorm, I am in Dayton, Ohio. This is our second day off from work/school and we were without power for 16 hours.

  10. 27 moiradancer February 3, 2011 at 8:43 am

    Hi Sara, gosh, that icestorm sounds dramatic, hope you’ve got heating.

    I originally started this blog because I wanted to give the long-suffering spouse a break from my running commentary on what was currently going down in my auditory cortex!

    Glad you’re enjoying some of the new sounds. it seems that hearing aids just love listening to paper, as I discovered when I said to 50 students “Right, now take your sheet of A1 paper and fold it into eight” during a workshop. Ouch.

    Re the literature, that was another thing I originally intended to put on here, but couldn’t find that much beyond the first couple of pages of Google, and although there’s tons of stuff about teaching students with hearing loss, there’s not much about teaching with a hearing loss. My ENT wouldn’t be drawn on the prognosis either, but he said that because it’s a congenital loss, if we’d had children, I’d have been offered genetic testing because they can apparently identify which part of the chromosome is affected and thus which mutation, which I imagine could give a prognosis. I come from a big family and extended family, but no one else has this kind of hearing loss, so there’s no clues for me there. My guess is, that if you have the milder form which becomes noticeable in middle age, it’s fairly stable, but the normal age related loss in the high frequencies that everyone gets will be much more noticeable for people with an existing cookie bite loss, causing it to appear to get worse.

    It would be great if there was anyone out there (especially audiology types!) who could shed some light on this, or submit interesting things they’ve read because I know people who search for ‘cookie bite prognosis’ and ‘cookie bite hearing’ will be disappointed that there’s no factual stuff on here, just my ramblings! Time for me to get on the case with a new page, I’ll try and collate some of the things I’ve read!

  11. 28 Silja August 8, 2011 at 11:48 pm

    Just found your blog and absolutely love it. Hearing aid chocolates! “I’m breaking them in for my granny”! Keep it coming!

    My hearing loss: I’m 37, have perfect low and high frequencies, up to 50 dB loss in the middle. It’s progressive with me, I’ve lost about 15 dB in the 5 years since I was diagnosed. I got hearing aids (Siemens open type) 2 years ago, definitely wouldn’t be able to teach without them. (Also tried to get red ones, which they had, but somehow they ended up beige.. there must be a conspiracy.)

    I teach college-level German language classes. I’ve had the multiplied paper crackling (yikes!) and the impossible-to-understand students; however, I also see some positives: I tell the students I’m hard of hearing the first day of class, and from then on out, I have a valid reason to ask them to sit in a U, to repeat things clearly (which in a language class is helpful) and not to talk over each other. Group work situations are really tricky, but I have to do them all the time. Note-taking while chalk or a whiteboard marker is squeaking over the board, oh yeah! Same effect if somebody’s typing on their laptop with the keys clicking.

    I’ve stopped going to some of the department get-togethers, they’re more annoying than anything. I can’t make out a thing, it’s just white noise. If I go, I grin, bluff, curse wildly inside my head, eat too many nibbles (so I’m not expected to talk), and leave as soon as I feel I’ve made a token appearance.

    Love your diagram about the lose-lose spouse.. my daughter (10) gets so annoyed sometimes, she told me the other day, “Mom, you’re just pretending all this, you have perfect hearing and you just say you can’t hear me to make me mad!” I had to laugh inspite of myself.

    A way to distinguish true from false friends via hearing loss: The false ones, even after being told, will still talk from around the corner, or with their back to you, while washing dishes, or from 15 feet away, and expect you to understand and/or move. The true ones, once they know, will come close to you without being told 🙂

    I’ve researched the issue a little, but even looking at actual studies, there isn’t a lot about us, we’re just too rare (one source said 50-100:1 for regular high frequency hearing loss as compared to cookie bite and/or reverse slope). My doctor told me in the beginning when I asked about causes that they could do some expensive testing, but it wouldn’t change the treatment – hearing aids.
    The agreement in research and on other blogs seems to be that with this type of loss, the majority is caused by genetics; there’s a few exceptions like Meniere’s disease which has low frequency loss, but it has such a clear profile that we’d probably know if we had it. Sooo, we’re working on the symptoms and not the causes. Until someone finds out how to replace those gazillions of hair cells and their intricate process of transmitting sound to the hearing nerve, that’s probably where we’ll be.
    The cochlear implants attempt that, but are a far cry from the real thing at this point. I have American Sign Language skills, and frankly, I’d rather use those and electronic communication rather than have surgery and learn to interpret what is reported to sound rather like a broken radio in the best case scenario. However, I’ll cross that bridge if/when I get to it.

    • 29 moiradancer August 9, 2011 at 10:37 am

      Silja, thanks so much for this, it’s really interesting to hear about your experiences and glad you enjoyed the hearing aid chocolates as much as I did!

      Thanks in particular for sharing the info on your progressive loss, it’s so difficult to find much meaningful stuff for the layperson in the formal literature, and “is a cookie bite hearing loss progressive?” is the most frequent search term on this site. Every little bit of real-life experience helps build a picture of what seems to be a very variable gene.

      It’s great to hear from someone else who’s teaching, and reassuring that you’ve found ways to manage the dreaded group situations. I’m going to take a leaf out of your book and be more upfront with the students about being hard of hearing. I’ve just not been assertive enough about this, and the more I think about it, the lack of assertion is the main cause of most of my difficulties. It’s also great to hear you say that some of your strategies, like getting students to repeat things clearly, are helpful for everyone. I’d hoped that would prove to be the case with my own teaching, but I just haven’t followed it up because I’ve gone into avoidance mode which is not helpful in finding solutions. Teaching languages with a hearing loss strikes me as one of the most challenging teaching situations there is, so hearing you be so positive about it inspires me to get back on the case.

      The department get-togethers really made me laugh, that could be me! Also the mysterious phenomenon of how tiny laptop keys can drown out speech. The other thing that drives me nuts is people “pssss-psss-psssing” in my proximity as they whisper to the person beside them in meetings, it seems to over-ride everything I want to hear and I can’t even make out what people are saying when they whisper directly to me anyway. Bizarre, irritating and fascinating all at the same time!

      Your comment is a great little post in itself on cookie bite hearing loss, so I’m sure others will find it just as helpful as I have, I really appreciate you taking the time to write it, and guest posts are most welcome anytime!

      Do keep in touch

      Moira

  12. 30 Francis Lovering August 10, 2011 at 11:17 am

    I am not convinced that the Hearing Aid manufacturers design their instruments for Cookie Byte hearing. As most people lose most at High frequencies the Aids are designed to boost them, which is not what we need. I find that mine, even though they are set up to boost the mid frequencies, still result in a tinny sound. Maybe they are not set up right but it can take numerous visits to an audiologist to tune them, and the NHS cannot really do that.
    My Audiogram is here

    • 31 moiradancer August 10, 2011 at 5:59 pm

      Hi Francis,

      I lost a couple of comments yesterday by accident yesterday and yours was one of them, so sorry about that (and to the other person too), glad you wrote back! That’s a very handsome audiogram you’ve got there and not dissimilar to mine which is a bit milder…may I ask if your loss has been stable or progressive since you were first diagnosed? I’m guessing you’re a wee bit older than me from your work dates, and the fact that the ‘bite’ hasn’t hit the bottom end of the chart gives me hope!

      You’re right, hearing aid manufacturers don’t design for cookie bite losses because they’re just too rare, therefore not profitable, but by all accounts modern digital HAs should be able to achieve a good fit for a cookie bite loss despite all the stuff kicking around on the internet saying they’re impossible to fit. I suspect a lot of that is historical from analogue and pre-open fit days. The key seems to be having the right spec of aid (invariably the more expensive!) with enough channels in the right areas, and someone who knows what they’re doing when they fit it. Sounds like you’re with the NHS just now which limits your option on the aid itself somewhat, but you’ve got every right to ask to get them adjusted correctly if they don’t sound right. I was demented for the first four months with wonky settings, but I didn’t know any different and thought that must just be the way hearing aids are. The consultant had told me that an aid would be no use because of my good high frequency thresholds, but I did eventually get it sorted with a bit of intervention by Siemens and everything sounds totally normal now. It really is a tedious and frustrating process though!

      If you have a look at hearing aid forums.com, there have been a few good threads recently about the best aids to get for cookie bite loss which might be interesting for your research. From memory the audiograms listed were in a similar range to yours, and the users’ experiences very mixed…

  13. 32 maureen September 3, 2011 at 8:21 pm

    Hi,

    I am a lecturer also, (about ten years older than you), but my relatively recently diagnosed rare problem affects my eyesight, not my hearing. If that started giving me problems as well, I do not know what I’d do, although I’d endeavour to keep positive and cheerful, just like you.

    Anyway, I thought I’d endorse the earlier post, and say it is much better to come clean with everyone, colleagues and students, when there is an issue such as ours.

    I tell the new students that I am adorned with shades, partly because I am a ‘cool cat’, but also because of my visual problems. I am fighting these like a dog, (the problems, not the students).

    My colleagues are fabulous.

    I’ve only recently been drawn to look at photographs on blogs, (my eyes nipped too painfully heretofore), particularly about Rothesay, as I have family connections there. There is even a ‘Buteshack’, (does that mean a holiday house?), on the island.

    I live in the suburbs on the south side of Glasgow, which is not a bad life, but often wonder about where I might retire to.

    Anyway, I like your amusing blog, and its fantastic photographs!

    All the best,
    Maureen.

    • 33 moiradancer September 4, 2011 at 11:18 am

      Hi Maureen, lovely to hear from a fellow southsider, lecturer and Bute fan, it’s like getting a present whenever I find a new comment on here! Thanks for sharing your experiences, it’s really good to hear that your colleagues are supportive of your visual problems and that the ‘come clean’ approach is the way to go in finding solutions. You must have had to cope with a lot of adjustments to your daily life with your sight, so it’s really inspiring to hear that life goes on if you make it. I’m lucky because my hearing loss is only mild, but I’m completely rubbish at asserting myself, and it’s that which lands me in all the farcical situations I get myself into. I used to ask people to speak up all the time for the benefit of the group when I was blissfully unaware that everyone else could hear fine, but since I discovered the lugs aren’t what I thought they were, I’ve gone all self-conscious. Time for a change!

      Glad to hear you’ve been enjoying the Bute photos, it’s a very special place. Like many Glaswegians, I went there as a child and have returned like a spawning salmon years later! The Buteshack (which is actually a wee tenement flat) got its name because it was rather rudimentary when we got it, but it’s scrubbed up nicely. We both love it, keeps me sane when things get horribly busy at work.

      Really nice to hear from you, hope your eyes stay settled, and good luck for the rapidly approaching start of term, eek!

  14. 34 maureen September 4, 2011 at 7:07 pm

    Hi Moira,

    Thanks for getting back to me so soon! I read the rest of your blog on the lap top last night, after my post to you, and I was laughing out loud when the phone went, (daughter number one from London). I said (between laughs at the antics of you at the window, cupping and uncupping a hand behind your ear, trying to locate the source of the burglar alarm, then jumping away because your scantily clad nightwear and hand actions might be misconstrued)), ‘Hi darling. No, it’s never too late to phone, and, no, I’m not drunk, I just can’t stop laughing because of this very funny blog…’

    You are a very good writer, and have excellent timing for describing the comic moments that can arise during misunderstandings. I also thought your description of leaving the contact lens in when sleeping was funny, although, please be very careful.

    My visual acuity waxes and wanes, and sometimes my perception of depth is very strange. One time, the traffic lights had failed on the Fenwick Road, and this chivalrous gentleman said to me: ‘Let’s join arms and cross together now.’ When we reached the other side he said: ‘Many thanks, I can hardly see a thing, as you no doubt have noticed.’ Help! Talk about the blind leading the blind! I didn’t like to say that I had thought he was helping me!

    The eyes are good at the moment, thank God, because, as you say, the start of the new term looms.

    I am at the university along the road from you. I used to drop the weans (now two grown up ladies) at the school near to your building, on my way to work.

    Daughter number two is well on her way to becoming a lady doctor,

    She is bemused at my condition, but she is not the only one, what with it being so rare.

    Fortunately, my consultant is marvellous, and we share an optimism that all will be well.

    Best wishes,
    Maureen.

    • 35 moiradancer September 5, 2011 at 9:46 pm

      Thanks Maureen, it’s great when people say they’ve enjoyed laughing at my ramblings, makes it all worthwhile even if everyone else thinks we’ve all gone mad! Your chivalrous gentleman escort made me laugh too!

      Onwards and upwards!

      Moira

  15. 36 maureen September 10, 2011 at 12:34 pm

    Hi Moira,

    I went to the routine clinic visit, and was admitted for surgery, so I now have a brand new cornea, so my wonderful consultant has restored my eyesight once again, although it is rather hazy at the moment. It’s very early days, so we shall have to wait and see if the massive immunosuppression regimen does its job over the next year or so.

    I will enjoy continuing to read your very funny blog over the ensuing months

    • 37 moiradancer September 11, 2011 at 7:35 am

      Wow Maureen, that’s absolutely amazing, must have been a bit of a rollercoaster week for you to say the least. You’ve got such a fantastic attitude, none of this can be easy but you’re so calm and positive it’s genuinely inspirational. I’m so pleased you’ve got the chance of restoring your sight in that eye, your consultant sounds great. Fingers crossed for a nice uneventful recovery, hope you’ve got your feet up, with everyone bringing you choccies and treats! btw, feel free to drop me an email any time, you’ll find me in the deepest recesses of the GSA website.

      Take care and take it easy!

      • 38 maureen September 17, 2011 at 7:55 am

        Hi Moira,

        Thank you! Sorry for the delay in replying, but I’ve had to build up e-mail and internet activity etc. very slowly. My good eye has ‘come out in sympathy’, (this often happens in eye surgery particularly with an autoimmune component going on, but it will continue to settle down).

        I have had the house cleaned as much as this is possible, because my immune system is being totally suppressed by medication, so that the rogue autoantibodies do not attack other organs or even the peepers. The autoantibodies can flare into action when the disease process is cut into, but this is a calculated risk of the surgery, which I and my wonderful consultant decided to take.

        People are running about after me all over the place, and I am really grateful, also imbibing chocolates etc. in large amounts. The massive dose of steroids makes me ravenous, and I am now about ten times the size I used to be, before all this started. However, I should eventually lose some of the weight once the steroids are tapered off, in about a year’s time.

        I am feeling on top of the world on the medication, full of energy and ideas, and well able to make the weekly trek to the ophthalmology clinic, where the staff are great. I am dreading the stitches being cut out of the eye, though, because it is so hard to sit still when the surgeon is doing this.

        Thanks for saying that I am inspirational! I don’t know if I am, really, but I am trying to make the best of things, and definitely have a lot to be thankful for.

        I think it is great that you have set up this blog. I would not know where to begin, and I think it’s wonderful that others can read your funny anecdotes, and see how you appreciate life.

        I too spent many childhood holidays in Rothesay, and just love the place. I was thinking in a whimsical sort of way about retirement, as some of my colleagues seized the chance to bow out early, but I think that I would miss the place. I like the idea of living in Rothesay, because of the sea and landscape, the writers’ groups, the social life in the pubs, and my aunt and friends have some good weekends there. However, if this is a life long condition, I might be better staying put, where I can nip to the consultant’s clinic by train (or taxi if feeling tired), rather than struggling through the wild winds to catch a ferry.

        I’ll try and send you an e-mail, and please feel free to do likewise to me, as I am logging on a bit more now.

        I am now going to dust and organise the bookshelves, (cleaning the study before the cleaner comes on Monday to ‘gut’ that particular room), and see what old tomes I might perhaps like to dip into once again. I used to be an avid reader, but have lost touch with so much in the literary world since all this happened.

        My bosses provided me with a portable magnifier, which was really kind, and this eases peeper strain, when I am researching academic material. The good thing about the electronic age is that it is easy to enlarge material on the laptop, or to put the narrator function on, so I am lucky it’s 2011!

        I hope that you and your family are all well, and I’ll read more of your blog later, once I’ve administered the lunchtime pile of eye drops.

        Best,
        maureen.

      • 39 moiradancer September 17, 2011 at 11:13 am

        Hi Maureen,

        wow, so many things to consider with your new cornea (bet you never thought a tidy house was going to be one of them!) but well worth it for the chance of restoring your sight. It’s great that from all this upheaval you’re full of ideas, I’m sure there will be plenty of good things to emerge from this once your eyes settle down and you’re back in your own routine. How tantalising that you might be able to get back to your reading…take it easy in the meantime though!

        I’d hoped to have some nice Bute photos to put on here as a relaxing interlude, but life is conspiring against my Rothesay Ferry plans at the moment! Like you, I love the idea of being by the seaside, but love aspects of the city as well. We shall have our cake and eat it, somehow!

        Enjoy poking about on your bookshelves this afternoon and dreaming of future plans. Oh, and you are inspirational!

        Moira

  16. 40 maureen September 18, 2011 at 9:10 am

    Hi Moira,

    I had a wonderful day yesterday, sorting out the books and arranging them on the shelves. It’s amazing how dust collects, and this is quite dangerous to the inflamed eye, so I managed to catch clumps on those electrostatic type disposable cloths. What I don’t want is huge dust clouds flying through the air and irritating the wounds. The cleaners are going continuously to eradicate all dust and cobwebs, but they are doing this one room and contents at a time, as well as scrubbing everything that stands still with bleach and disinfectant.

    I am at the stage of life where, sadly, older relatives pass away. One dear aunt owned some truly beautiful furniture, with glass shelves. Her daughter and husband delivered this to me, so I will do away with the open shelves, meantime. I think.

    It is great to know that I will be able to read more eventually.

    I may also eventually be able to travel a bit. This has been just a little risky hitherto, as I had to be able to get to the hospital ideally within 15-30 mins or so, should the diseased cornea perhaps show alarming signs of impending perforation. Once this new cornea settles in, the risk of this should be over, but we’ll have to wait and be patient, over the coming months.

    I read your post on Leamington Spa. Great place! I just love Shakespeare,and have been to the nearby Stratford Upon Avon often in the past. A lecturer does the tours of the place in between performances, and I think he and his wife live in Leamington.

    I also read crime fiction avidly, and I liked the Ian Rankin novel set in the art world, although this took me many months to read!

    My sis and her husband were languishing in their Bute Shack on the Port when they received the message I had been unexpectedly admitted. I think they had to drive through chaos because the ferry closed early, in order to reach the other one. This was good of them. They, like us, cannot decide whether they want to live by the sea or in the city, so they do a bit of both.

    I think that a famous singer from the 60’s pop scene lives on the Port also, but I cannot remember the name of the group. I think the island is full of very interesting people, and there is always something happening. The line dancing and balloon trips during the September weekend is next, I think.

    I am arranging boxes and boxes of medication and drops in my cupboards and fridge today, and will look again at your other posts and photographs once I’ve done the lunchtime round. I love looking at photographs even more now, (postoperatively, seeing things in stereo). You would think I had never seen a leaf before. I’m even going out into the garden and enthusng about the early autumnal colours to the neighbours, who are all beautiful people, and very kind to me.

    Another sackload of medication will be coming tomorrow, so I am trying to be organised, and to use the stuff in a logical manner, (expiry dates etc.). The fridge got accidentally short circuited the other day, (weird electronic panel on the front should not have been cleaned), but a new fuse sorted it again. However, this caused problems with the antibiotic eye drops, (boxes of individual drops), stored there. I should have bought a simple fridge freezer when the old one blew up a few weeks ago. I did smell smoke at the time, but thought the neighbours must be having a BBQ. Then I heard buzzing! Oh no, a wasp under the fridge, and me with a phobia! I ran for the spray, and then bang!

    I hope that you are well!

    Best,
    Maureen.

    • 41 moiradancer September 18, 2011 at 6:24 pm

      Hi Maureen, I have total bookshelf envy for your closed shelves, our house is a dustbowl and the bookshelves look as if they’ve been engulfed by a volcanic ash cloud! Sounds like you’re having fun putting everything in order, and I hope the electrostatic cloths are doing their job nicely…take it easy, though!

      Sods Law that the fridge decided to blow up on you just when you need it most. Hope everything’s been saved. Fridges are sneaky, ours expired in the week before Christmas last year, defrosting all the spouse’s lovingly prepared Christmas goodies. Typical!

      Just back from a sneaky quick trip to Bute and I’m away to look at the photos now to see if there’s anything nice…watch this space!

  17. 42 maureen September 19, 2011 at 1:44 pm

    Hi Moira,

    I am looking forward to seeing the photos! Are you popping to Bute during the holiday weekend? I think that seeing people in balloon flight over Rothesay bay would be so cool. Many ladies I know are also going to dress up as famous film stars. Pity I’m too ill to go, as, with the shades and floppy hat, I am half ways there already!

    The house is beginning to look so much better. The windows were ‘manky’ apparently. I am so ashamed, but will get over it any second now.

    The local foxes and cats have taken to using all of our gardens as a toilet. One advantage of the formerly poorer eyesight was that I thought the long cylindrical shapes were pretty autumn twigs or such adorning the lawn. Nope. Huge clods of faecal material. I gathered them up, wearing three pairs of marigolds. One neighbour is going to buy the special repellent gel, and maybe electronic sensors, to chase the furry things away. Their garden is clogged with the stuff, and they have young children.

    The area under my tree is the worst – bald patches on the ground, in which bluebottles are breeding on the ‘soup’. I inserted soap powder, and tied a bright toy snake to the lower branches, to frighten any animal from using this again. It’s undulating up and down in the wind as I speak, like a scene from the Garden of Eden.

    Dinna ken what the gardener is going to say when he comes this week. I’ll be at the clinic getting my bloods checked because of the medication, but I am sure he’ll admire the bleached scrubbed paths! The lengths a person has to go to when the immune system is being suppressed is unbelievable, but totally worth it.

    Best wishes, and hope that you are doing well,

    Maureen.

    • 43 moiradancer September 20, 2011 at 12:43 pm

      Hi Maureen,

      just slurping down my soup in the office and chuckling at your previously unidentified ornamental ‘twigs’ in the garden. That’s fab that you’ve got such an improvement in your vision already, although it will be good when you get to enjoy more edifying sights! The activities of the local wildlife will hopefully be curbed by all you and your neighbours excellent deterrents. I can recommend a Super Soaker watergun as a kitty repellent if you can catch them at it, and you can have fun practising your aim through an open upstairs window. Just watch out for the gardener though!

      Btw Maureen, your descriptions of things are entertaining and very vivid…I bet you could do a mean blog

      ps the ballooning event sounds great, I’m going to look out for it if we manage to get over, thanks for the tip-off. Shame you can’t go just yet, especially with your film star accessories…but all in good time 🙂

      • 44 maureen September 20, 2011 at 2:04 pm

        Hi Moira,

        Thank you! I would not know where to start with a blog, (I had to be dragged into all things electronic) – pretty scared of it really – although the younger lecturers bend over backwards to help me set up Power Point and play all sorts of video clips half way through the material. If the students look restive I immediately perform some impromptu stand up comedy, in relation to the material, so, when they are laughing, they are happy. I am getting a wee bit better, but often yearn for the bygone days of chalk and talk and wipeable acetates!

        I am so grateful to you for providing this blog. I hope that you do not mind me putting on a reply just about every day, as I am using this as therapy for the peepers, (gradually increasing the maximum amount of time spent on line, in tandem with the doctor’s specifications).

        In this way, by the time I am allowed back to work, I should be able to cope with supervising master’s students’ research dissertations, as these are often on-line, and are of course about 20,000 words long. I love doing that, although it is very exacting, and keeps me on my toes!

        I hope that you continue to have a good week at work. We are so fortunate to have such brilliant and interesting work, I think.

        Speak to you soon,

        Best wishes,

        Maureen.

    • 45 moiradancer September 22, 2011 at 6:09 am

      Hi Maureen

      Ah wipeable acetates…I remember them well! The students proudly show off bits of cool retro technology that they’ve acquired for their projects, and a lot of them I still view as recent developments!

      Having a strong Luddite streak, I asked my whippersnapper colleague to set this blog up for me one lunchtime and he had it up and running in 5 minutes. About 4 minutes of that was me choosing a password and saying, “Oh…I thought it was going to be a lot more complicated than that.” Posting really is as simple as doing emails, the software’s designed to make it easy peasy, All you need is a visitor under the age of 35 to get you set up and off you go!

      Delighted that you’ve found this blog useful, and if it’s an enjoyable way to build you up for scanning masters’ dissertations, I’m really pleased.

      Hope that everything’s coming along nicely with your eye, and that you are now relatively dust-free and cat-free!

  18. 46 maureen September 22, 2011 at 3:57 pm

    Hi Moira,

    Yes, your blog is really an enjoyable way for me to re-enter the world of short bursts of electronic reading and writing. This is because it is partly about Bute, (I am thinking a lot about the magical place, so the stories and photographs are just wonderful),

    I also really like your funny anecdotes, and it is good to hear about the experiences of another lecturer, from the bonny south side!

    Daughter number two may know how to set up a blog. She is working at a hospital at the moment, but is popping over one day after she finishes this stint on the 30th.

    Mind you, I don’t think I’ll be doing a blog for many months, because it would be too much for the eyes. Because they have cut into an autoimmune process, the autoantibodies will try to flare, and attack the peepers, and possibly rage through the bodily systems. This would be a disaster, but the immunosuppressant regimen should prevent this from happening. I am a good responder to any medication that they have tried so far. However, I have got to preserve a balance between activity and rest, not least because there are other related and complicated issues within the inner eye.

    I did peruse a blog with people who have esoteric autoimmune vasculitides of one form or another, (kind of similar to me). However, these poor people were not responding to the massive steroids, or indeed to the concomitant mycophenolate (immunosuppressant), or even to chemotherapy. The rheumatologist had told one of them, (after being asked, what else could be done), that they may not be able to be helped at all. I did not join that blog, because it was so very sad, and I do not know what I could say to be of any comfort.

    The world is a very strange elegiac place sometimes, but I believe that I can, with help from God, ‘will’ things to happen with a happy outcome.

    I think it is important to think happy and creative thoughts, maybe write short stories, that kind of thing. More should be made of using creativity therapeutically, as I think it promotes healing and health. I am a member of a writers’ group, but have not been for ages, although I may discuss some points by e-mail in the future. I think there is plenty of scope for a novel set on the Isle of Bute, kind of like Iris Murdoch meets Ruth Rendell, when you consider the interesting people who live there!

    The gardener came a day later, on account of the rain yesterday, and howled with laughter at the dancing snake!

    Have a great weekend, and thank you for allowing me to participate in your blog.

    All the best,
    Maureen.

    • 47 moiradancer September 23, 2011 at 12:42 pm

      Steady on Maureen, blogging induction can wait, dinnae overdo it with the online visual activities…just yet! Mind you, I’m looking forward to your novel set on the Isle of Bute. It could go something like this: A mysterious woman in film star shades arrives off the ferry at Rothesay and hails a cab. There is much speculation in the Guildford Square bus queue about the glamorous stranger in town.

      “Take me to Ettrick Bay, driver, and keep the windows closed”, says the mysterious woman as she puts her handbag on the back seat.

      “Sorry, where? I didn’t quite catch that, I’m a bit, er…” says the cabbie, a scruffily dressed woman of about 45 with hair of the most curious texture. She is wearing a hearing aid, but it doesn’t seem to be doing much.

      The mysterious woman patiently repeats her request while she reaches into her handbag for a tissue.

      “Oh,” says the cabbie suddenly, “you’ve dropped something there”. She points to a single yellow Marigold glove on the floor…to be continued

      I think you’ve got such a great approach to your condition, with your positivity and creative thoughts. I totally agree about using creativity therapeutically. For me, that’s how this blog came about, and I’ve found that writing about all the annoying, inexplicable, embarrassing things, in a humorous way, helps me get it out of my system. It’s a great delight that others recognise similar things in their own experiences and can laugh at them with me. I was terrified initially that I might offend people by seeming frivolous, especially to anyone who was profoundly deaf and who would love to have my level of hearing, but I’ve been really heartened by people’s reactions. I love the John Glashan quote (he was the chap who did the wonderful ‘Genius’ watercolour cartoons) ‘Humour is seriousness in disguise’. It kinds of sums things up.

      Keep up the regime, physical, medical and spiritual and have a great weekend, too!

      ps I think we’ve created the Maureen and Mo Show, see Liselotte’s comment!

  19. 48 maureen September 24, 2011 at 10:38 am

    Hi Moira,

    Love the start of the novel set on the Isle of Bute!

    I know exactly what you mean about the humorous approach – I should absolutely hate to offend anyone either, e.g. in making jokes about my situation, (although this really does help me), particularly when donor organs are in such short supply, and someone was breathtakingly generous in donating their cornea to me.

    I understand that one poor family is going through the horrible process of bereavement right now, (and I know how grindingly painful this can be), but, beneath the humour, I would say to them that I am profoundly appreciative of their sacrifice, and will be forever.

    The thing is, we have to express our individual personalities, and I like being happy and enjoying life. and I do see the funny side of everything that has happened to me.

    There is a radio 4 programme for those with visual problems of varying severity, and this often includes jokes about eyesight difficulties, so maybe many people with the related issues see the funny side.

    I will look into John Glashan and the watercolour cartoons, and I like the profundity of his quote. Artists are often very good at literature and philosophy, I think, (although my knowledge of art is sadly quite limited).

    I will go straight to Liselotte’s comment, and I do hope that she keeps posting. I would love to hear all about her country.

    I will hold off on the blog induction. Don’t laugh, but I do not think I would have anything to say, (!) – I’m more loquacious if someone else starts things off, like on this blog.

    Some of my relatives visited me yesterday, feeling sorry for me ‘cos I’m missing the country and western line dancing September weekend at the Buteshack. (We’re all calling it that now). They brought me some ‘bling’ costume jewellery, (which the lassies are going to adorn themselves with, as they take to the floor, dressed as film stars). They also brought an apple pie and a Lladro figure, which was very nice indeed of them.

    They admired the utter cleanliness of the hoose – everything smells slightly of bleach and disinfectant, just like a hospital, really. The cleaning ladies will be back next week,and I am looking forward to that, as they are so pleasant as well as very hard working. They even washed my tins of food in the store cupboard!

    Best for now,
    Maureen.

  20. 49 maureen October 12, 2011 at 1:30 pm

    Hi Moira,

    I have taken the liberty of adding a few lines to your introduction of the Bute thriller!

    Shady Lady Visits Bute.

    A mysterious woman in film star shades arrives off the ferry at Rothesay and hails a cab. There is much speculation in the Guildford Square bus queue about the glamorous stranger in town.

    “Take me to Ettrick Bay, driver, and keep the windows closed”, says the mysterious woman as she puts her handbag on the back seat.

    “Sorry, where? I didn’t quite catch that, I’m a bit, er…” says the cabbie, a scruffily dressed woman of about 45 with hair of the most curious texture. She is wearing a hearing aid, but it doesn’t seem to be doing much.

    The mysterious woman patiently repeats her request while she reaches into her handbag for a tissue.

    “Oh,” says the cabbie suddenly, “you’ve dropped something there”. She points to a single yellow Marigold glove on the floor.

    The cabbie, who had been witness to all manner of strange behaviour from her customers throughout the years, was nonetheless taken aback at the violent way in which this glamorous piece yanked off her seatbelt, and bent to retrieve the offending yellow cleaning glove, looking feverishly out of the cab windows, first to the right, then to the left, as though scanning for possible witnesses. Just what was inside this glove that might be so important? Drugs? Money to be laundered on Ettrick Bay? Or, were the fingerprints of a dastardly deed ingrained on their very tips? Did the glamorous stranger hope to eradicate these on the sands and rocks?

    The cabbie then felt the cold fingers of fear traversing down her very spine. She was a witness, and the glamorous piece knew it. She had to come over all nonchalant and friendly, making out as though she did not suspect a thing. She did not want to be found dead on the coast road in the morning! She wanted to live, so she put all of her effort into maintaining what she hoped was a convincing and innocent grin.

    “Planning on staying in these parts for long, then?” she asked, beaming wildly into the mirror.

    Her heart skipped a few beats as the lady just stared back, issuing no answer or even recognisable facial expression……… to be continued.

  21. 50 Grace Franklin January 3, 2012 at 10:53 pm

    Hallo Moira, I’m a journalist with a hearing loss. It isn’t the Cookie Bite situation you have… just losing hearing at lower levels of sound. Have decided since I wear glasses to see better I might as well wear a hearing aid to hear better! It also helps if I do since I can then report more accurately what people are saying!
    I was looking for pictures of the storm damage of today for my website: http://www.localnewsglasgow.co.uk when I came across your really amusing blog. I wondered if you’d be able to let me use your tree on the car picture if it is in Glasgow, please? I’d be happy to give a name credit to the person who took it.
    Hope you see this in between composing your next funny blog. Did enjoy your sense of humour.
    Thanking you in advance
    Say that again, Sam?

    • 51 moiradancer January 3, 2012 at 11:48 pm

      Hi Grace,

      nice to hear from you, you’re welcome to use the Queen’s Drive tree picture from yours truly. The damage seems like small fry after today’s storm which has left the Queen’s Park Bowling Club pavilion with another tree on its roof and loads more round the park snapped off at the roots. You know when you’re woken up by the wind noise and the hearing aid’s asleep that the storm’s a corker!

  22. 52 Ciaran Buchanan January 9, 2012 at 8:57 pm

    Hi Moira,

    You’re dearest and eldest nephew here. Hope you have recovered from the annual West Kilshukie liver bashing!! As you are no doubt aware my dad likes to go on a bit and he as been bigging up your blog and I must say very well done, you’ll have a slot on the 6 o’clock news in no time!

    Drop me an email as Katy is intrigued by the tales of the Bay and I was thinking of wining and dining her at the Kingarth.

    • 53 moiradancer January 10, 2012 at 3:35 pm

      Happy New Year to you and Katy, Ciaran, hope you’ve recovered from my vivid description of an unorthodox use of the Archimedes Principle!

      An inaugural visit to the Bay for Katy sounds like a grand plan, I’ll drop you an email once I’m back in circulation at the end of the week.

  23. 54 tjppnw January 13, 2012 at 3:38 am

    It is good to find your blog…my son was diagnosed with a cookie bite loss, mild/moderate in Kindergarten and he is now in 2nd grade. We are trying out an FM system. We thought it would be as simple as hearing aids, but it doesn’t seem like it is that simple.

    And there are all the questions about how it will or will not progress…

    It was great to hear about your classroom experience!

    • 55 moiradancer January 14, 2012 at 9:33 am

      Thanks tjppnw, classrooms are tricky, and but hopefully the FM system will bring some benefits for your son once everyone gets the hang of it. My management of my own classroom experience continues to require a little problem solving!

      The progression factor must be worrying for you as a parent, I hope your son’s loss turns out to be stable, as mine appears to be.

  24. 56 Peggy January 21, 2012 at 8:13 pm

    Hi Moira,

    Thanks so much for this blog. I was diagnosed with a mild to moderate cookie bite loss about six years ago, at age 41. It seemed crazy to me that this loss had been there all my life, but your blog and its responses validates that. And it certainly explains a lot about my poor results at school – one of the first things my audiologist asked me was if my teachers reports said “in a world of her own” “daydreams” “could do so much better”. Yes, yes and yes.

    The audiologist also proved to me that I was really efficient at lipreading. An amazing skill I never knew I had! So, I had good coping mechanisms till my early 40s when peri-menopause, stress and a challenging career combined to allow me to finally notice that I had a problem. I also had a new husband, who actually let me know that he thought I wasn’t hearing him a lot of the time. My first one probably just stopped talking to me…

    The last couple of years I have felt that my hearing is getting progressively worse. I went back for a test two years ago and was told that nothing had changed. A few months ago I went to another audiologist because I could not believe it wasn’t going downhill. Even my husband and my colleagues have noticed that I am hearing less. Same result, no change in my actual audiogram. My theory is that it takes a lot of effort to listen, as opposed to those who can hear, who just hear without listening, so age and stress and exhaustion and distraction can take its toll in that way.

    My audiogram looks almost identical to the one posted by Francis, although my left ear is 240-4000 Hz sensorineural loss. I don’t know if that’s worse or better than his? I really don’t understand the numbers yet.

    Anyway, as my job takes an extraordinary amount of listening and communication (I am in charge of donor relations at a charitable organisation) I have finally decided to bite the bullet and look into hearing aids. I’d love to know what kind you have, and also why you only have one. I keep getting told by audiologists and specialists that two are always better.

    I have enjoyed most of what I have read here so far, and have bookmarked it. I hope to talk to you more, although our time zones are different. I am in Montreal, Canada.

    Please keep this blog up!

    Peggy

    • 57 moiradancer January 22, 2012 at 12:51 pm

      Hi Peggy, really nice to hear from you. Thanks for sharing your story, it’s fascinating to hear how everyone discovered they were in the Cookie Bite club, and your change of husband is the most novel yet! Like you, I just couldn’t believe that the hearing loss had been there all along, but when I really think about it now, it kind of figures.

      In terms of understanding the numbers on your audiogram, this article will give you an idea of how to read it. Any numbers with Hz attached are frequencies at which the hearing is tested and the ones with dB indicate the degree of loss, 0 being no loss and 120 being profound loss.

      From my own experience, I’d say it’s definitely worth giving hearing aids a go to see if they’re helpful, it depends on your lifestyle and the degree of loss whether they’re worth the money and the hassle, and the only way to find out is to try them and see. I’ve still got good high frequency hearing and only a 45dB dip in the middle, so the ENT chap initially said that hearing aids would cause more problems than they would solve and told me just to get on with it and come back in a few years. I can see why he said that, but I have found a hearing aid useful in certain situations, especially when standing up in front of a group of 50 students 🙂

      The first aid I got was a Siemens Reflex L (which didn’t work out), followed by a Siemens Chroma S. These models are both branded specifically for the NHS by Siemens, who held the NHS contract in my area at that time. On the NHS, you basically get what you’re given, and it’ll be beige. I’m hopelessly unassertive in the face of people trying to rush me out the door, and didn’t have a clue about hearing loss or hearing aids at the time, so I didn’t know what questions to ask. I’ve subsequently read they’re supposed to offer you two aids if you’ve got a bilateral loss. I’m not sure why they didn’t, but suspect it’s because it’s half the cost to just offer one. I’m curious to know whether two aids are better, I know I can read an extra line on the eyechart with two eyes rather than one, but I don’t know if ears work the same way. Certainly, with one hearing aid, I get no benefit in background noise and my sound localisation is much worse with the hearing aid than without, which makes for great fun trying to work out which of my 50 students is speaking, but at least I can now hear them…one has to weigh up the pros and cons!

      If you’ve not already come across it, Hearing Aid Forums.com is a great resource for finding out about hearing aids, and there are a few cookie biters on there. Good luck in your quest, and feel free to ask me anything you like, I’d love to hear how you get on 🙂

  25. 58 Peggy January 22, 2012 at 3:43 pm

    Thank you for the links. I explored the hearing aids forum a bit yesterday (thanks to your blog) and will find out more over the next days, weeks. I feel like I just want to get this fixed NOW, but I’m learning that there is no quick fix. I’ll give it a shot though, because I really am feeling disadvantaged these days.

  26. 59 Peggy January 22, 2012 at 5:22 pm

    Moira, are you able to take out my last name in my first post?

  27. 61 Carl Green January 24, 2012 at 12:29 pm

    Moira, If you’ll allow me to pipe in here. I wear two hearing aids. I have a dip in the 1K to 3K range it goes to 45db. The rest is pretty normal except for that dip! I have the same in both ears. Why they didn’t give you 2 aids is a mystery indeed! I tried one hearing aid in my left ear the first day I went to get my hearing tested. I can say that the right ear did feel very deaf! Two aids makes you feel balanced and it’s a joy to be able to hear out of both in terms of directionality, makes for a “fuller” hearing experience I think. I wear Oticon Ino mini RITE’s in both ears in a smart black colour 🙂 (I think they look like little whales love them!)

    • 62 moiradancer January 24, 2012 at 5:37 pm

      Very interesting Carl, good to get an endorsement of the binaural approach from someone with a similar degree of loss, I think I’ll ask them about it next time I’m in. Although I joke about it, being unable to locate who’s speaking when I’m interacting with a large group while teaching is a real pain. I miss all the visual cues from the speaker while I’m scanning the room for the source of the voice, and I must look somewhat deranged into the bargain.

      I did consider going private at one point, but I’m a total tightwad!

      • 63 Carl Green January 24, 2012 at 5:46 pm

        I hear you with the money issue as hearing aids are NOT free! Being here in Canada the province covers some of the cost but not all so that helped a bit but it was still very pricey. I think maybe going private would help but why not try to get the NHS to give you 2?? They might and it might be perfect! Problem solved. Also, the aim of hearing aids is to make everything as normal as possible to the point of forgetting they are there! Kind of like glasses (I’m horribly myopic myself) So, if you only had one and are constantly pushing the slipping dome back in, then how is it improving your quality of life? It’s make you adapt to IT not the other way around!

        I shall stop my preaching hehe but I think we can get more out of them than we think!

        Carl 🙂

  28. 64 Kristen Bush April 30, 2012 at 5:56 am

    I’m learning a lot from this blog. I have the cookie-bite too. I’m 42 and just today ordered some hearing aids. After walking around the clinic with the trial pair, I nearly cried after hearing all the sounds that previously weren’t there. I’m actually a student now, having returned to college after 20 years! bah hah hah. So I knew I had problems in class when I can’t hear people asking questions who sit in front of me or the math teacher who talks sideways while he solves problems on the board. Both scenarios were quite challenging. I’m excited. I hope it will become bearable with the louder sounds because it looks pretty tricky to get them working just right. I’m not going to give up too soon. The audiologist said she would tweek it every week…whenever I want. Best of luck to you all…..

    • 65 moiradancer April 30, 2012 at 5:53 pm

      Hi Kristen, good to hear from you, welcome to the club! I’m sure your new hearing aids will get a thorough workout at college, and if you can get them tweaked to work there, they’ll work anywhere 🙂 It takes a few weeks to get used to them because everything sounds so loud at first, but it just takes a bit of professional fiddling with the settings to sort out anything that’s not right. Sounds like your audiologist is up for the challenge, enjoy your new ears!

      • 66 Peggy May 1, 2012 at 1:31 am

        Welcome to the Cookie Bite Club, Kristen! 🙂 I am now test driving a hearing aid too. The acousticien (this is what they call hearing aids specialists in Quebec) that I went to told me that people with this loss wake up on their 40th birthday not being able to hear properly! He is joking, but seriously, this seems to be a pattern, early forties diagnosis of something that has been there all our lives. He also told me something interesting about one hearing aid vs two. He says eventually I will need two, because my brain will get accustomed to making sense of hearing out of the ear that is aided, will become reliant on it, and will start to use the pathways in the other ear for other functions and I will lose the ability to hear from this ear. Basically, it’s the old adage of use it or lose it.

  29. 67 Tina Penman May 25, 2012 at 2:14 pm

    Thanks for the great laughs! It’s awesome you have a fun sense of humor.

  30. 69 Shiver Carr June 13, 2012 at 2:58 pm

    I can’t thank you enough for such a great blog. I am another cookie biter who figured out why everyone mumbled when I was hmm, 39 or something? I received a call from my audiologist recently who was pleased I was still answering the phone. He is expecting me to finish going (mostly) deaf one one these days. Very strange being a cookie biter. lol

    Anyhow, from the indentations to the abdominal regions from leaning on tables to wait… birds chirp? I really enjoyed your writing. I plan to spend the day re-rereading, cleaning the house and hoping my daughter hears the ice-cream truck when it goes by. I certainly can’t hear it now unless it is close.

    The cruelest cut of all I think.

    • 70 moiradancer June 14, 2012 at 10:50 am

      Hi Shiver, great to hear from you, glad you’ve enjoyed the blog! Missing out on a passing ice cream is indeed a terrible thing and must be avoided at all costs 😉 Sounds like there’s a big bite out of your cookie, do you mind my asking how rapidly your loss progressed?

  31. 71 Shiver Carr June 14, 2012 at 3:33 pm

    I don’t mind you asking at all. Unfortunately I don’t have a good answer. It has been stable since I was tested about four years ago. So my worst hearing loss is only -50db at the 1000hz range (both ears). Honestly, I should be able to hear that ice cream truck much better then I can. Perhaps it mumbles.

    I have been told by that it won’t be a slow loss, just nice big bites out of the cookie. The audiologist thought 7 years max before I get the CI. I did have my hearing aid tested before as a child and as a younger adult it was fine. So this really was the magical genetic cookie bite snack attack that happens when we turn 35-40. I let my parents know they owe me ice cream.

    • 72 moiradancer June 14, 2012 at 9:35 pm

      Thanks for getting back Shiver, the mumbling ice cream truck had me in stitches! Glad everything’s currently stable and long may it continue. Myself, I’ll know the game’s up the day I can’t hear a cava cork popping at a hundred paces 😉 Hope you got your ice cream!

  32. 73 Sue September 20, 2012 at 11:14 am

    Moira

    Just discovered this blog, and am so glad to hear that I’m not the only one struggling with getting hearing aids adjusted. I was diagnosed with reverse slope three and a half years ago, and so far the hearing aids aren’t working all that well, but you’ve inspired me to keep on trying with the NHS…thank you!!!

    • 74 moiradancer September 21, 2012 at 6:10 am

      Hi Sue,

      good to hear from you. Reverse slopes and cookie bites are comparatively rare, and in my experience you really need a sympathetic senior audiologist to have any hope of getting the best out of the technology. The lady I saw latterly really knew her stuff technically, and went out of her way to help me out, for which I am very grateful. There are good and bad fitters in both the NHS and the private sector, and when you find a good one, you know it!

      There’s no getting round the fact that it’s all a tedious and protracted process, but don’t be afraid to ask for a senior audiologist. Reverse slopes, in particular, need to be fitted with a bit of human judgement, rather than the Autofit settings dictated by the computer. The best of luck in your quest, Sue, and do let us know how you get on 🙂

  33. 75 Jennifer October 14, 2012 at 1:38 am

    I haven’t look at your blog for a while…my son is doing just ok with school and we continue to problem solve. Hearing aids were static-y the start of this year, so now they are in for repair and He just had a quick hearing check and it went down 5 at 1000 and 1500. The audiologist said it was still within the standard deviation, but I am worried…

    • 76 moiradancer October 14, 2012 at 3:12 pm

      Hope the aids get sorted quickly Jennifer, and that you manage to find a workable hearing solution for your son in the classroom, so that you can feel he’s not being disadvantaged in that environment. It must be worrying for you grappling with all the unknowns, and I only wish I had some practical advice to offer. I do hope things work out with the classroom strategies and that you get to the stage where you feel your son is thriving as he should…

  34. 77 Tina C. November 6, 2012 at 7:52 am

    Thanks for writing this blog Moira! I haven’t got cookie bite hearing loss, I’ve got otosclerosis, but the effects on life are pretty much the same. I teach too ( I teach English in Italy where I live) and reading your blog has given me my first hearing-loss related laughs ever! Which I think has done me good! keep up the good work.

  35. 79 Amber November 17, 2012 at 1:02 pm

    Hello Moira, you are so right, there’s hardly any info on this type of loss. I think I’m the first one my audiologist has had, not to mention the youngest at 40. I know I’ve had my loss for a long time, but now that I’m participating in meetings and such, it’s become too much of an issue. I was first fitted with domes, tried a size smaller too, but for me too they pop out. I now have molds which stay in place very well. I’m not sure how to explain to my audiologist how I need them adjusted– I’ve had them for a couple months now. Just had them adjusted again yesterday, which really is my first adjustment since previous visits were about fit. I had taught a class (wow is the a recurrent theme) and tried wearing them, but I found it just made it worse, like listening through glass or something. How many times did you go in before you felt you had the best adjustment? What kinds of words did you use to explain how they sound so they know how to adjust? He said it can take a little bit to get use to the new frequencies. Thank you for having this blog and keeping up with it.

    • 80 moiradancer November 17, 2012 at 4:04 pm

      Hi Amber, nice to hear from you. I got my hearing aids through the NHS in the UK, and aftercare tends to be a bit of a hit and miss affair because of lack of resources, so my experience may not be a good reference point when looking for answers! With my first Siemens aids, I went back a handful of times, but it was mainly to sort problems from bad fittings which rendered the aids useless. I got them usable, but realised that fine tuning was not going to happen on the NHS 😦 From reading stuff on Hearing Aid Forums and the like, I imagine that it could take many adjustments to get the optimum performance out of aids, even in really expert hands.

      It’s so difficult describing sounds, and I must say my descriptions were very untechnical. “That sounds really crap” and “Is it meant to sound like there’s a deep-fat fryer in the background?” were among the most commonly used 😉 An audiologist who knows their stuff and takes the trouble to ask about your listening environment can translate even the most inarticulate utterings into usable info, so I wouldn’t worry too much about the descriptions. It’s their job to recognise and troubleshoot particular scenarios.

      My current Oticon aids were set up on autofit and, despite that, work pretty well for most things…apart from my work environment. It certainly does take a good couple of months to get used to new sounds, but I’m still finding background noise in the classroom really problematic, which I think is a bit of a fact of life for teachers with hearing aids. Take the aids out and background noise disappears, but then you can’t hear voices that are more than a couple of feet away. Bah! I’m going to ask about it when I’m next in, and I’ll post if there’s anything to report.

      If everything sounds less clear after your latest tweaks though, you’ll probably need to go back. I’ve always given any dodgy adjustments a week or two to prove that I’ve shown willing, and to get a chance to note any patterns in what the aids are doing/ not doing.

      Sorry I can’t be any more useful cos of my lack of techno know-how Amber, but I do hope you manage to get sorted. Let us know how you get on.

  36. 81 Amber November 17, 2012 at 11:32 pm

    That is helpful Moira- it’s such an unknown that it helps to hear your experience. and know that it’s perfectly fine to go in multiple times for adjustments. The guy comes to town every other week, so I’ll have a two week trial time. I was reading on some board today someone likes multiple channels. I’m assuming then you would have more control in different situations on your settings. Mine has two and a usb hookup thingy. I think I have a time period to upgrade without loosing the value of these…. i’m contemplating. I will let you know how it goes!

  37. 82 Susan April 4, 2013 at 12:21 am

    Hi, I was just diagnosed as having cookie bit hearing(I am only 30). Interestingly enough, many people on hear are teachers. I wonder if more people have this hearing loss, but don’t realize it. I only realized that I had hearing loss when I couldn’t fully understand my students, but other teacher’s in the room could. It is nice to read all your posts.

    • 83 moiradancer April 4, 2013 at 7:47 am

      Hi Susan, nice to hear from you. That’s an interesting point about teaching revealing the loss, and I think it could well be true that many others who don’t need to regularly interact over distance have it without realising. I initially wondered if my long dead dad, who said “Eh?” to his mumbling offspring every 5 minutes, was the missing cookiebite link for me. I then decided the fact that he was a schoolteacher and never mentioned it didn’t fit 🙂 He was an art teacher, though, so it would have required more one-to-one interaction, and classrooms were decidedly quieter places in those days, so perhaps the theory could be true after all…the plot thickens!

  38. 84 cyborginafield May 9, 2013 at 9:41 am

    Hi, did you get a chance to go and see We Are Northern Lights? Its on for another week at cineworld! woohoo.
    Hope to get up and see Gills degree show. Maybe we could meet for a coffee?
    my email is soozietark@googlemail.com
    X

  39. 85 gleamcreative August 14, 2013 at 4:00 pm

    This is a good hearing aid and has help clear up a bit of confusion for me, soon as they turned it on – I could here the difference – a big grin came across my face. I can now hear my clients. You can seriously get cams for these things? what ever next…

    • 86 moiradancer August 15, 2013 at 5:00 pm

      Happy hearing with your new aid, you will also find that the ability to turn it off during some meetings is an equally wonderful thing 😉 The aidcam is currently just a Photoshop flight of fancy on my part, unfortunately, but who knows what may happen in future!

  40. 87 moira August 15, 2013 at 3:22 pm

    Wow Moira – I am also MOIRA – from sunny south Africa… I am so blessed to have come across this site – I have had the dreaded cookie bite for the last 15 years or so. I have stubbornly ( and am embarrassed to say – selfishly) ignored my deteriorating hearing loss for all these years.

    I will be 50 in September and have only had my hearing tested once – all those many moons ago… I was told by a rather young audiologist that I have a ‘rare’ hearing problem called a cookie bite- it would progressively get worse and that there is no treatment for it. She exclaimed that I am either 1. an extremely good lip reader or 2. a very intelligent person who is able to read body language and ‘make up’ what I interpret the other person is saying..

    Well of course I chose to believe that number 2. applied to me!

    So now that you have finished laughing…. hehehehehe.
    Anyway – for the past 2 days I have got that ringing in the ears – Tinnitus, So hence the reason I stumbled across your site while doing research.
    I would like to know if anyone with our ‘special condition’ has had cochlear implant surgery and if they have been successful?

    • 88 Peggy August 15, 2013 at 5:10 pm

      Hi Moira from South Africa! I’m originally from there myself and that is my sister’s name! I’m now living in Montreal, Quebec, Canada. The one thing I have to say is that I’m not sure that if you have cookie bite loss your hearing is deteriorating, unless there’s another issue added to the mix. My audiologist keeps assuring me that my hearing is not and will not deteriorate with a cookie bite loss, even though it feels that way to me (see my comments above for a theory on why that happens). I’ve now had several follow up tests and so far she seems to be right – no change in the audiogram but it feels to me like I’m losing it! I’ve put that down to age and stress combined. Lip reading (which you’re definitely doing) gets harder because you have to focus! Getting a hearing aid really has made a difference to me, although, like you, it took me a long time to finally get with the program.

    • 90 moiradancer August 15, 2013 at 6:03 pm

      Greetings Moira 2, lovely to hear from you and, yes, we are superior beings indeed!

      Cochlear implant surgery can be highly successful for cookie bite hearing loss which has progressed to the stage where hearing aids are no longer an option for speech comprehension. It’s not a given that everyone’s loss progresses to that stage, but a couple of commenters on here are cookie biters who lost most of their hearing by early adulthood and have had CIs. Check out the lovely Soozie at http://cyborginafield.wordpress.com/ She’s had her life transformed by getting a CI fairly recently, and her story in her blog is incredibly poignant and well told. Also check out the wise and witty Not Quite Like Beethoven at http://notquitelikebeethoven.wordpress.com/ he’s fabulously informative about all aspects of hearing loss, and there are also loads of hints and strategies for communication on there. The site is in German, but Google translate does a reasonable job.

      When I first found out I was in the cookie bite club I had a complete panic thinking I was going to go completely deaf practically overnight, but my hearing has remained stable since I was first tested.

      Do you think you’ll bite the bullet and get re-tested?

  41. 91 Sydenham Leave October 2, 2013 at 12:24 pm

    Your agony column made me wet myself! Excellent dx

  42. 93 Kristen Brakeman October 16, 2013 at 5:54 pm

    HI – I have a cookie bite loss – just diagnosed! Here is a piece I wrote about it and how hearing loss seems to be made fun of by many. I’d love any feedback (and votes) It’s called
    DON’T HATE ME BECAUSE I CAN’T HEAR YOU
    Thank you!!
    http://blogger-idol.com/2013/10/16/week-3-voting-starts-now/

    • 94 moiradancer October 17, 2013 at 8:02 am

      Hi Kristen, welcome to the Cookiebite club! Great piece, think anyone who has been on the receiving end of homicide-inducing hearing aid ‘quips’ from their nearest and dearest will relate to it. Also, if it can make people think twice about doing their comedy lipspeaking routine to their hearing aided colleague on the other side of the office, many lives might be saved…

      Good luck with the competition and the new ear gear. Hearing loss quip victims…get voting!

  43. 95 Shirley June 11, 2014 at 4:15 pm

    Hi – I’m at the beginning of my mild hearing loss journey (age 38), presumed to be genetic (although my Dad was in his 60s when he started losing his hearing, so go figure) and am grossly under informed presently of the frequencies I have difficulty with – so not sure if I’m a CookieBite or not. I also have tinnitus (no idea how to measure how much of that I have) but it’s pretty constant but doesn’t bother me too much; far more irritating are loud noises e.g. on the phone when someone clears their throat (obviously I have the volume on the phone turned up loud anyway, so innocuous little noises sound huge and ring into my head). My reading to date has said that hearing aids can be configured to turn down sounds where sensitivity is high; wonder if there’s a config for TV ads? And irritating talent show audiences?

    Anyway, I’m waiting for my first hearing aid appointment to come through so I can try some of the little beige nasties, for now I just concentrate hard on the phone and ask my boyfriend to repeat himself, repeatedly. Mentally I’ve decided to approach the whole as “an experiment”, one which if successful may mean I can hear what American actors speaking with their backs to camera are saying; so that would be a boon even if that’s all I wear the dang things for.

    Having shunned my day job for the last couple of hours in favour of reading your blog, I am also compelled and delighted to say – thank-you for the colourful customisation ideas for the little beige thing coming my way (that was how Google first recommended your site) and an even bigger thank you for sharing in your posts your wide variety of noise-related, completely hilarious anecdotes. They are instantly recognisable to me and I can see I’m already building a collection of my own crazy noise stories. (Particularly like the illustrations e.g. how to ask someone whether they have their hearing aids in or not; my boyfriend is constantly talking to me whilst I’m yawning, or should that be I’m constantly yawning whilst my boyfriend is talking? I have sent him the image for future reference. He replied with OMG. Ha.)

    Anyway, I’ve signed up to your updates and resolved to get some more info on my own hearing Hz ranges. Wish me luck with the fitting of the little beige beasties, I’ll let you know how my fashion customisations turn out.

    Thanks 🙂

    • 96 moiradancer June 13, 2014 at 10:22 am

      Hi Shirley,

      lovely to hear from you, glad you’ve enjoyed reading the blog and thanks for cheering up my day. Once you get your ear gear, you’ll be amazed at what you’ve been missing, but don’t get your hopes up for hearing American actors speaking with their backs turned, someone needs to invent a hearing aid specifically designed for that one 😉

      It’ll be interesting for you to find out what ‘shape’ your audiogram is, there are some aspects of hearing loss experience which are common to all configurations of loss, and others which are very specific to particular types, e.g. the male voice difficulty with Cookie Bite. Perhaps laughing at particular anecdotes might identify different types of loss and become a low-tech diagnostic tool in future. Definitely more fun than pressing a button in a sound-proofed booth!

      Hope all goes well with your hearing aid fitting, and would love to hear how you get on, and how your customisations turn out 🙂

  44. 97 Juliet July 18, 2014 at 5:26 pm

    Hi Moira

    If you feel it is appropriate please could you post the following in case any of your blog followers would like to support this campaign? There is an Action on Hearing Loss petition on their website too. If north staff goes ahead it is likely that other trusts will follow. (I am not part of the charity, just someone recently diagnosed with hearing loss).

    North staffs are proposing to stop supplying hearing aids on the nhs to people with mild to moderate age related hearing loss. This is a false economy as the earlier hearing aids are introduced the better tolerated they are and thus don’t end up in a drawer because they are just too difficult to adapt to if they aren’t introduced until a later stage of hearing loss. Please consider supporting the thunderclap campaign being run by Action on Hearing Loss at http://thndr.it/1nj9nbK

    Thank you 😊. Juliet

    • 98 moiradancer July 25, 2014 at 12:18 pm

      Hi Juliet, thanks for raising this, I’ll post something just now, it really is a cut too far. I tried to embed the Thunderclap link, but it doesn’t seem to support WordPress, so I’ll repost your link from here.

  45. 99 Juliet July 25, 2014 at 1:00 pm

    Thanks Moira. Let’s hope our objections don’t fall on deaf ears (groan)

  46. 100 Dookist August 7, 2014 at 10:50 am

    Hello… I have just come across this conversation whilst googling cookie bite hearing loss.. I didn’t realise there was such a thing but looking at an audiogram, it would seem that there is a problem mid range… No wonder my bog standard hearing aids are not helping… Still can’t hear speech, but other sounds are unbearable loud!

    • 101 moiradancer August 8, 2014 at 8:08 am

      Hi Dookist, if you are new to aids, the loudness thing you describe is the biggest shock to the system with a mid-frequency loss, but you do get used to it in time. If you’ve had them a while, it’s worth seeing if there are any adjustments that can be made to give you more speech clarity…good luck in the quest!

  47. 102 Dookist August 8, 2014 at 8:49 am

    Thanks! I found it a huge shock… Then it is just very irritating.. I find my long hair gets tangled up and also brushes against the receiver and there is a constant rustling noise…

    I think if I could find a CIC, it would be better…

    • 103 moiradancer August 8, 2014 at 10:15 am

      When I walk briskly with my hair down, it sounds like being stalked by someone with a pair of maracas. A CIC would definitely cure that problem!

      You do eventually get used to the hair noise, although I must say I do still find it irritating. One of the first things I did when I got my first aid was tie my hair back and it’s stayed that way pretty much since 😉

  48. 105 Dookist August 8, 2014 at 10:26 am

    Ha! I am not really a hair tied back person… Especially in the winter…! The noise is like walking through a pile of straw… Awful! I am also being bothered by tinnitus recently… Not the high pitched musical chord type, which I find ok, but a low intermittent buzz… A bit like a bee trapped in a jam jar… I am finding it keeps me awake, and stops me concentration, as it is more a vibration than a noise…

  49. 106 Juliet August 25, 2014 at 7:12 am

    I don’t have cookie bite hearing loss but still found my aids too loud when I started wearing them in February. I experimented with a phased introduction by turning the background noise off all the time to start with and it certainly eased the adaptation period for me.
    I’m still working on a solution for the annoying problem of not being able to eavesdrop any more ……..

  50. 107 Tim August 27, 2014 at 7:10 pm

    I’m 57 yoa, retired LEO that has driven CMVs part-time for several years. Recently got real tired of the “ringing” in my ears, yes the years of guns and truck engines and exhaust have taken a toll on my hearing so, I bit the bullet and saw an ENT. Mid-range loss, worse than it was 6 years ago. Audio. guy that works with the Dr. is a Belltone rep. Audio. guy say to make an appt. with Belltone for an aid, I told him that I don’t mind asking people to repeat what they say but I’m rather tired of the “ringing”. He said that the aid can stop the “ringing”. Read reviews on Belltone and I don’t like what I read. Is there a particular brand/model, to your knowledge, that would be best for the cookie bite loss and the “ringing”?
    I work in a quiet environment, mostly, and the “ringing” prevents me from hearing the judge or the court clerk when they talk to me.
    I thank you and/or anyone else on here that can help me.
    ( I am going to make an appt. with the hearing center at our local Costco in a few weeks for a hearing test that will take longer than the 10 min. test I got at the ENT)

    • 108 moiradancer August 28, 2014 at 4:30 pm

      Hi Tim, I’m not very technically clued up, but it seems that successfully fitting a mid frequency loss needs an aid with plenty of channels available for adjusting in the mid frequencies. Unfortunately, those tend to be towards the more expensive end of the scale 😦 It also seems that the expertise of the fitter and their willingness to make repeated adjustments to the aids, are arguably even more important than the brand/ model. From what others have said, you may have to shop around a bit to find a fitter who listens and whom you feel you can trust to give you impartial advice on the right type of aid for you. Reactions to the sound quality of different brands vary from person to person, so there’s no one brand (sadly!) which suits everyone.

      Re the tinnitus, depending on the severity of your hearing loss and the tinnitus, the amplification from any hearing aid will help to reduce it a bit. It basically gets masked by all the background noise you weren’t hearing before. My tinnitus is mild and I can’t hear it at all while wearing aids. You can also get hearing aids which are specifically designed to mask tinnitus. The NHS Danalogic i-fit 71 aids I had at one point (made by ReSound I think) also had the capacity to add tinnitus masking noise, although I didn’t need that function so can’t say how effective it is. It could be worth asking your audiologist about aids which also have a tinnitus masker if you’re in a quiet environment and your tinnitus is very bothersome.

      Good luck with your Costco appt, and hope you get a bit of relief from your tinnitus.

      • 109 Tim August 28, 2014 at 4:48 pm

        Thank you for the reply! The gentleman at Costco was very helpful when I stopped and talked with him. He even put a pair of aids in my ears, WOW is Costco noisy and the “ringing” disappeared. He said it would take an hour and a half for the exam. ( compared to the 10 minutes at the Dr.)
        I will making the appt. after we return from vacation. Will update then.
        Tim

  51. 110 Dookist August 28, 2014 at 9:32 am

    I have exactly the same thing with my hearing… Dreadful tinnitus in both ears…it really does affect your concentration, doesn’t it?!

    I had to defend myself as a litigant in person last year… When I got to the court, the audio link was of the wrong type… The judge refused to adjourn and insisted that I continue for several hours of questioning… I couldn’t hear anything and had to withdraw, leaving me to pay my opponent’s huge costs… I am still fighting the case…

    I was interested that you say you work in a court environment and wondered if you have ever encountered discrimination against deaf people… I think the judge should have adjourned as I made him aware that I was waiting for hearing aids to be fitted… My hearing loss is quite severe and I can only hear vowel sounds.

    • 111 Tim August 28, 2014 at 5:01 pm

      My job descrip. is Courthouse Security ie: baliff and check point, work the metal detector etc.
      The judges, clerks and attorneys are good about repeating and speaking up when I have that confused look on my face.(We are a small county and most of the older attorneys, I’ve known since they started. One of the judges, I went to public school with.)
      Our court rooms were equipped with a sound system years ago. Back in the ’80s we had murder trail where the defendant was really hard of hearing and the system was put in the Circuit Court room as a result of that case. When the courthouse was remodeled in the ’90s every courtroom was “wired” for sound.
      Jury boxes are equipped with hear phone jacks, if needed.
      You didn’t say where your trail took place but, I’m guessing it was in a bigger town/city than ours. I don’t think any judge in our courthouse would have done that to you. They probably would have continued the case for a couple more weeks so you could be fitted. Unless, the other party wasn’t willing to or had traveled a long distance for the trail.
      Good luck with you legal battle!!
      Tim

  52. 112 Jennifer Thomson October 18, 2014 at 9:35 pm

    Hi Moira
    Was thinking about a remark my audiologist made about my audiogram the other day – “like a bite out the cookie” – and just happened to google it and found that it’s an actual thing!! I can’t believe it. After 12 years of struggling and being dismissed by NHS, I finally took the plunge and went to a private audiologist in July this year, the main motivation being that I’m a teacher and struggling to hear all day at work was making me absolutely exhausted. Now 30, I’ve finally got some help. I’m only 3 months into wearing my hearing aids and its a whole new experience but I’m hopeful that things are going to get better. Just wanted to let you know that I have loved reading your blog over the past few days. So much of what you’ve written resonates with me and I hope you continue to share your experiences.
    Jennifer Thomson

    • 113 moiradancer October 19, 2014 at 10:59 am

      Hi Jennifer, lovely to hear from you, and glad that you’ve finally got some help. Going by many of the comments above, being a teacher definitely seems to expose an undiagnosed cookie bite loss very efficiently, indicating that a relatively small amount of hearing loss can be quite disabling in that particular environment. I was amazed that I wasn’t asked what I did for a living when I first had my hearing tested with the NHS, it has a real bearing on the amount of difficulty which is encountered on a day to day basis.

      Hearing aids in the classroom are a mixed blessing for the cookiebiter, but with a private audiologist you’ve definitely got the best chance of getting the adjustments and advice you need to get the most from your aids. The technology is coming on in leaps and bounds, so who knows where we’ll be in a few years’ time! Hope things continue to improve for you, and do drop by here anytime.

      • 114 Jennifer Thomson October 19, 2014 at 5:05 pm

        Thanks Moira. I know! When I first had my hearing tested, the loss wasn’t perceived to be that bad ( I think there was a dip down to 50db in one of the mid frequencies) and I was advised to concentrate harder! It is amazing though how you do develop strategies and can tell what people are saying without really hearing. The aids are helping but find that I’m not yet fully understanding a lot of things without using visual clues etc. I’m hoping it will improve.

      • 115 moiradancer October 20, 2014 at 4:55 pm

        Hi Jennifer, I’ve found that aids are wonderful in some situations, but I still have to rely on visual cues in the classroom for much of the time because of background noise issues. My searching gaze for moving mouths during discussions has led to many a poor student being asked ‘Were you just about to say something there?’ when they were harmlessly reaching to push up their glasses, fix their hair, etc. Not as bad as buying something by accident at an auction by scratching your nose at the wrong moment, but not far off 😉

  53. 116 Maria November 27, 2014 at 9:54 pm

    Hi Moira,
    it has been great to find your blog. I am 37 and know to have a hearing loss since 10 years ago. However, it has been now when I moved into getting hearing aids and I have just found that I have cookie bite hearing loss (none of the doctors told me about that diagnosis). I live in Spain and here all the aids have to be privately bought, but I will be moving with my family to UK in a few months. I have read that NHS provides hearing aids for free. My concern is whether they provide good digital RIC ones or not. The ones I have been proposed to use now are a pair of RIC Siemens Pure (digital, very small). I would appreciate any help about hearing aids provided by NHS because I am not familiar with the UK public health system.
    Thanks a lot!

    Maria

    • 117 moiradancer November 28, 2014 at 6:52 am

      Hi Maria, nice to hear from you and glad you’ve enjoyed the blog. The type of hearing aids which are available on the NHS varies across different parts of the UK, and some areas have more choice than others. I live in Scotland and my local NHS trust dispenses only one brand of aid (Danalogic) as standard, but because I have a cookie bite loss and the Danalogics aren’t suitable, they were able to order a different type. Most NHS aids are fairly decent mid-range digital models, and I think some trusts will prescribe RIC if needed, but not all.

      If you know which area of the UK you’ll be moving to, your best bet is to go on to the UK Action on Hearing Loss forum, and ask for advice there. Others from that area may be able to say if they were prescribed RIC and what brands are available. You might get advice from hearing aid dispensers working in the NHS on there as well.

      Hope your move and your hearing aid quest goes well, and do let us know how you get on.

  54. 118 Kathy March 12, 2015 at 5:44 pm

    Hi Moira, I’m a fellow cookie biter and was delighted to discover your blog which I happened on by chance today. I’d just returned from a frustrating session with the occupational therapist at work, where I had tried to explain why being relocated to a small office shared with five others was proving difficult for me, and why I was dreading the prospect of being moved again to a new large open plan building in the summer. The latest suggestion is to put noise reducing screens around me and I have a vision of me being enclosed in a sort of Tardis in the middle of the room, emerging at intervals blinking in the daylight. Arrrgh!

    Like you I only discovered my hearing loss by accident in my 40s (I’m now mid-50s) and am finding it increasingly problematic as my aging brain struggles to fill in the gaps. Started off with NHS aids, went private (for vanity), then back to the NHS where I think I’m stuck for the foreseeable. Like many of your other correspondents I work in education (though not teaching) which I agree presents a special set of challenges.

    I loved your stories of your mishaps and misunderstandings. Glad to find I’m not the only one who is muddling through at work and play. Last Saturday I went on a nervously awaited first date at a noisy restaurant and was embarrassed to realise that his question that I’d understood as “So, how long have you been on eHarmony?” was actually “So, how long have you been into gardening?”. No wonder he was looking at me like I was crazy as I burbled on about it being a matter of days! Still, I guess if he turns out to be my soulmate it would be something to share a laugh about in the future, but I’m still groaning about it. The fact that my hold-up stockings fell down on the way from the car pales into insignificance…

    • 119 moiradancer March 15, 2015 at 5:44 pm

      Hi Kathy,

      lovely to hear from you, I share your occupational therapy pain!

      Thanks for taking the time to comment; when I started this blog I genuinely wondered if I was going mad, so it’s been really reassuring to find out from everyone’s comments that others in the same boat can identify with my trials and tribulations. Your first date experience made me chuckle in recognition, I hope you find a nice quiet spot for your next date and that it’s the start of something good!

  55. 120 Nigel September 29, 2015 at 10:24 am

    Great blog! Just been down ot get my first hearing aid today, came back linking my wounds and was googling something about them (spirit zest) and found this. Ha very very good – put a smile on my face and made me feel much better about the whole experience. I’m now meant to be WFH but reading th blog instead! Thanks Nigel

    • 121 moiradancer September 29, 2015 at 5:27 pm

      Hi Nigel,

      that’s great to hear that you’ve enjoyed reading the blog, and hope all goes well with your new ears. I am envious of anyone who is in an Oticon spirit Zest dispensing area, my new Danalogics are not a patch on my old spirit zest…sniff

      Now get back to work 😉

  56. 122 BadBunnyEars December 13, 2015 at 7:16 pm

    Hi, seasons greetings and I hope you get working hearing aids for Christmas.
    Please tell us how your getting on, yours is the best account of hearing aids in the real world I’ve found

    • 123 moiradancer December 22, 2015 at 6:22 pm

      Seasons greetings to you too Bad BunnyEars. Official update coming soon, now that I’m freed from the shackles of work, but suffice to say I’m missing the dainty size and light weight of the old Spirit Zests, their easy to remove tubes, the recessed microphone hole, push button volume with 12 increments and plenty of welly at the default setting, programme button that toggles in both directions…

      How you getting on with yours?

  57. 124 Stella February 1, 2016 at 11:12 am

    Hi Moira, I have thought of writing a blog about my hearing aid experiences but having found yours I don’t need to. You’ve said so many things which resonate with my experience. My loss is Moderate to Severe cookiebite (diagnosed at 43) which has explained (to me) why i dropped out of education when younger and why I’ve always had high anxiety in group situations I think. I work full time which is becoming harder and harder (in the community with people with difficulties so understanding essential) and these days I am just exhausted by the sheer effort of hearing all day. Your blog is a welcome ray of sunshine and makes me smile.

    So few people understand how much even a mild loss can isolate the sufferer. I’ve never worked out if it’s better to be open about it at work and socially or keep the HAs a secret; I’ve done both in the past and unfortunately experienced extreme discrimination and abuse at work when I have disclosed, so I now keep very quiet about my hearing and just hope for the best. I am expecting to be made redundant soon so am not looking forward to the job search! (have some embarrassing stories to tell about complete failure to understand interviewer questions in the past!).

    Keep writing when you have the time please, you’ve got an audience.
    🙂

    • 125 moiradancer February 3, 2016 at 2:30 pm

      Hi Stella, good to hear from you, thanks for your lovely comments.

      I can identify with the fatigue and anxiety which accompany a job which has a large degree of ‘responsibility’ attached to hearing correctly and, like you, I swither about whether to be up front when disclosing, even though I know that’s theoretically meant to be the best approach. Fortunately I’ve never had any abuse at work, but on a bad day, even the occasional impatient rolling of eyes can be enough to make one wonder whether it’s all worth it. Mind you, the upside of having a cookie bite loss at work is that you can never catch anyone saying bad things about you when you walk into a room unexpectedly 😉

      Sorry to hear about the looming possibility of redundancy, hope it turns out not to be the case. Would love to hear your embarrassing interview stories, and if you decide to start your blog, you’ll have an audience too!

    • 126 rebeccalooa April 30, 2017 at 10:25 pm

      Hi there – hope everything is going well for you. I’m 41 and have just been told I’m moderate to severe cookie bite. It’s all very unsettling! I’m loving reading people’s journeys though here.

  58. 127 Halley P. October 12, 2016 at 6:06 pm

    Dear Moira – I hope this message finds you well! My name is Halley Profita and I am a graduate student at the University of Colorado Boulder. I have been researching DIY and expressive wearable assistive technology (and how we can leverage new materials to advance this) for my dissertation topic for the past 5 years. I have a particular focus on decorated and modified Hearing Aids and Cochlear Implants that reflect a user’s personality. In an effort to understand how we can create better design practices to support DIY and expressive AT, I spend a lot of my time looking at what is being done right here, right now. Doing online research, I stumbled across your fantastic blog and am writing you to see if you would be open to an interview.

    I greatly look forward to hearing from you and please let me know if you have any questions!

    Halley Profita

  59. 128 Carol Woodruff October 13, 2016 at 4:27 pm

    Wonderful research. Please let us how we can see or hear the interview.

    • 129 Halley P. October 14, 2016 at 7:55 pm

      Dear Carol – So nice to hear from you! And absolutely! I’ve actually used what I’ve learned about leveraging design and assistive technology to create fashion-forward assistive devices. One is a dress that can detect environmental sounds for individuals with hearing impairments: https://halleyprofita.wordpress.com/projects/flutter/

      Other research I’ve done entailed partnering with Microsoft Research to create fashionable accessories to administer light therapy for Seasonal Affective Disorder: https://halleyprofita.wordpress.com/lightwear-an-exploration-in-wearable-light-therapy-for-seasonal-affective-disorder/

      For my next phase of research, I am interviewing individuals who do their own decorating and stylizing of their hearing aids and cochlear implants. I would like to learn more about what people are doing to create devices that reflect their personality. It doesn’t have to be extremely fancy – it can even be more simplistic such as ordering a device in a favorite color. Ultimately, I’d love to learn more about how people are choosing to design their devices (and what they want) so that we can hopefully create more design materials (or even get manufacturers on-board) to have more options for users.

      If you or anyone you know is interested in participating in an interview you are more than welcome to reach out to me via email: halley.profita@colorado.edu. I look forward to hearing from you!

      Halley Profita

      • 130 moiradancer October 15, 2016 at 11:38 am

        Hi Halley, sorry for the slow reply, I’m just back from a student field trip to the Scottish wilderness and have been thawing out for a couple of days. I’m delighted to get your request and would love to do an interview; I totally concur with Carol about the wonderfulness of your research and I remember seeing your Flutter dress online at the time, and being totally envious of the technological collab and ingenuity in the making. Working from the seclusion of my low-tech artistic bunker, I’m all sticky back plastic and Heath Robinson in my fabrication attempts, but I suppose it keeps the local art shop in business and gives fellow squashed train passengers something weird to look at in the real world when they look up from their phones 😉

        I’ll drop you a note of my email address and we can take it from there,

        Best Wishes,

        Moira

  60. 131 It is time to speak. December 20, 2016 at 3:03 am

    Have you ever thought about selling any of these amazing creations on etsy?! 🙂

  61. 133 rebeccalooa April 30, 2017 at 10:03 pm

    Hi there – I love your posts! Im 41 and have known for at least five years something dodgy was going on with my hearing. Last week I finally got it checked out. I have Cookie Bite loss measured at moderate to severe in both ears. Total shocker! I thought I was exaggerating as is my tendency, but nope, I actually have a real life actual problem with a medical name. I’ve spent all weekend googling hearing aids and I have to say I’m very unimpressed. I’ve decided I’m definitely not a hearing aid type of gal. I have absolutely nothing in my wardrobe that is going to work with this new situation for starters. Thank you for throwing some light heartedness at the subject – you definitely made my first weekend as an actual slightly deaf person a bit better.

    • 134 moiradancer May 2, 2017 at 5:26 pm

      Hi Rebecca, thanks for your comments and welcome to the club! If you go for aids, you will acquire all sorts of superpowers made possible with the latest technology, including being able to listen wirelessly to your music collection through your aids during boring bits of meetings. As for wardrobe, beige might soon become your new favourite colour 😉

      With a moderate to severe loss you’ll really notice the difference, so definitely worth a try to see if they work for you.


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