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We with hearing loss have no real community

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@cvkemp
My Father was a radar officer on British cruisers in WW2 Back then they had a real shortage of people with your skills.

In reply to @1Bluejay

I see many references to how good the Phonaks are. Over the last 8-9 years I have had all Oticons. Originally RIA2, worked well. As my hearing has declined, I went to OPN3, which never seemed to be adjusted very well for speech. So at the next opportunity, I got the More1, and a different audi. Hoping to improve my speech comprehension. Other things I can hear, birds, kitchen appliances, what have you, speech is still not what I had hoped for. The one year no cost access to my audi has expired, so I have gone . I did save his original programming, usually begin from there and explore. Sometimes maybe closer, but never the clarity of speech that I’m seeking. Makes me wish I had tried Phonaks! Sadly, my insurance used to help out every three years, but they just changed to 5 years…

I have been with Oticon aids now for 14 years. Yes i have tried the other brands of aids but i keep coming back to Oticon. I have been wearing aids for 20 years, the me now Oticon aids are my sound standard. I also understand that clarity is objective and depends on the person and that persons hearing loss. I volunteer at my clinic and do what I can to help other Veterans to understand what they are getting into when they start wearing aids. I also help with pairing their aids to phones, computers and tablets. I also have seen Veterans that don’t use any type of phones at all. And even a number of homeless Veterans. My latest adventure has been talking to Veterans that have been told they need aids, then the audiologist has me do a one on one with the veteran to determine the level of technical skills, and to set expectations before they select what aids the want. At first i didn’t want that responsibility but i am finding it quite rewarding. My audiologist said even if we had a 50-50 record we were doing great. So far we are hitting 80% success. The main thing i will not recommend is which brand. That is a personal issue that only the patient and audiologist should do. I will say that brand wise the clinic does more phonak than any other brand, with Oticon next followed by the rest of the major brands. If a veteran comes to the clinic that has been wearing aids before they come to the clinic i use then unless the veteran ask for a different brand they are fitted with what they have been wearing.
At this clinic i was standing in line waiting for it to first open as a brand new VA audiology clinic. I was actually the clinic’s first patient. And I pray daily that my audiologist never leaves the clinic.

Hi Chuck, how are you? Have not heard from you for a while. Oops the word heard does not apply to us, and we forget.should have said have not seen you here in a while. Hope you are well.

I am in mourning right now I just lost my oldest daughter to type one diabetes. She had had it over 40 years.

Take care, Anita

In reply to @landers44

@landers44 said:

Sadly, my insurance used to help out every three years, but they just changed to 5 years…

GOOD ON YOU taking the bull by the horns and becoming a DIYer! I wish I had that skill.

Have you thought about changing insurance plans? My supplementary GAP coverage now offers hearing/vision/dental option. Yes, it may be more money, but unless you find out, you’ll never know. Explore your options.

Five years in the hearing aid world - especially if we’re seniors! - is simply TOO LONG. These insurance providers hope we just up and CROAK or maybe get so feeble from brain + ear connections severed that we don’t even know or care what we’re missing.

Hearing is a critical sense. Boggles my mind how the OLDER we get, the MORE insurance companies diminish our options and string out the replacement. Declare insanity or depression at any age, and help is just a phone call away.

Can anyone explain the logic here to me? Other than, well since MOST ol’ folks will need aids, we’d go belly-up as an insurance company offering any kind of valued service or payments to them. :face_with_diagonal_mouth:

Yes, it can feel that way. However, I have found that my hearing disability is not as frustrating and as negated by others as my loss of my sense of smell. I find people are more understanding of my hearing loss. However when I mention my loss of smell, I am laughed at and belittled. Seriously people have laughed and directed told me that losing your sense of smell is not a disability. Only when COVID came did some people understand. Imagine not smelling smoke smell from your car when driving, the gas smell from your heater, or something burning in the kitchen. By the time the alarm comes on, the damage is done. We have high tech hearing aids to assist us with our hearing. Unfortunately there are no smelling aids invented yet. This forums is great! I’m sure there is a support group on facebook as well.

In reply to @landers44

I had a Medicare Advantage plan and could get premium aids for 699 US dollars copay each but they were Truhearing private brand aids made by Signia. I didn’t want to get stuck with private brand aids. I switched to another healthcare provider and l get 2500 dollar allowance per year for a pair of aids. If the cost of the aids is above 2500 dollars then l pay the difference. It depends on the healthcare plan. I’m happy with Phonak aids. I wished Oticon by now came out with a replacement for Xceed hearing aids.

I can see what you mean about not having a community, but the other side of that would be that it’s a success story of integration into wider society. This forum is a great community where I have found so much information and knowledge.

I have a chronic neurological condition and although I look fine on the outside, on the inside I am suffering. I have no community other than my online community with the same illness and that’s where I get my support and I think this is the case for many people with all sorts of different conditions and challenges.

In reply to @DJ11

DJ,
Have you always had loss of smell ? Have doctors mentioned the reason ?
For 30 somewhat years my husband and I have been married, he has had loss of smell.
Not 100% but a lot. 6 months ago, my husband was diagnosed with Parkinsons. One of the symptoms is loss of smell. I’m not trying to be alarming, but might be something to look into. Now that he is on medication, some of his sense of smell has returned.
Laura

I agree that it’s a constant struggle. I have severe to profound loss but hearing aid technology, mainly Bluetooth, has given me the ability to hear on the phone again. Speech to text can help but fails when in the environments that we need it the most. I resort back to using communication strategies to function as best as I can. I need to be close to the person talking which is intimidating to many. Disclosing the hearing loss helps. I attend a monthly luncheon with other members of the gym I attend. I miss much of a conversation but talk mostly with people next and across from me. The folks at the gym know I have hearing loss and know I’m not ignoring them and know when my hearing aids are out, to not try to talk to me. They sometimes forget but I go into a “sign language” mode (I don’t know ) to remind them.

This forum has been great for me. I don’t post much but I do ‘listen’ and learn from, you all. I also am a member of the Hearing Loss Association of America (HLAA), a National organization, but with over 100 Chapters and Support Groups throughout the country. It has taught me to advocate for myself as well as for others. It also has given me an outlet to talk out problems as well as educate others on what I have learned in my 20 years of late onset sensorineural .

I sulked around for 5 - 7 years before getting actively involved with HLAA. Going to one of their Conventions was the best decisions I’ve made since discovering my HL. Everyone involved is going through the same things we on the forum re going through. But I’ve learned a lot about the different assistive listening devices that are available and use them on a daily basis. I don’t got to a doctor appt. without my partner mic or the captioning app on my cell phone. It isn’t perfect but it helps a lot and helps reduce the amount of frustration I used to have. The last thing we want to do is let the HL lead us into isolation and depression. I don’t know if there is a HLAA Chapter in Arkansas but many Chapters meet virtually. Also, they have a Veterans Chapter that meets virtually each month and is solely for Veterans to meet and discuss their particular issues they are experiencing. I highly recommend giving it a try.

Good luck.

Thanks for touting HLAA here on the Forum! They are a great group and various of their info is posted online, YouTube etc. I was v. active in my old chapter (different locale), in fact, helped start it. We had great speakers/meetings. In my new home, I’m not as happy w/ the chapter and, since Covid, they are meeting mostly online. I find in-person, with a live speaker, so much more useful. And speakers, too, who aren’t just selling something!! Our best programs were fellow-users telling how they navigated a learning curve, new tech, etc. If you are new to , see if there is an HLAA chapter in your area. I, too, found the 2 conventions I attended, VERY valuable!!

Having worn aids for 35 years, I can agree with your remark about “a constant struggle to communicate”. My hearing has worsened now to the point of taking my wife with me to medical appts to be my interpreter. tell me I’m long overdue to go cochlear, which isn’t going to happen because I’m running out of the time needed for them to become useful.
I’m now waiting ON of delivery of a new pair of Jabra EP20s (Costco) and hoping they’ll help more than my 5-yr-old pair of Phonaks. (I’m also hoping I’ll last longer than they will, but that’s getting iffy - LOL)
Beyond that, though, I don’t think I, or anyone else who is is much worse off than the millions who have different problems - diabetes, heart disease, cancer, rheumatoid arthritis, blindness, etc. As our hearing problems are unique to us, other’s problems are unique to them. But we’re all in this life together.
I suspect the best we can do is try to be tolerant of ourselves - and others.

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