Meniere’s Syndrome

Networking


The problem with being deaf or seriously hard of hearing (HoH) is that unless we are part of a larger Deaf community or involved with organizations for the hard of hearing we tend to be isolated souls.  It is not that we want to be, it is simply a fact that oral communication is generally limited for us. However, now and then we have a breakthrough.

There are blogs for the D/deaf and HoH. Blogs dealing with Meniere’s and blogs about CIs. There are groups on FaceBook (FB) that cater to the D/deaf and HoH in a variety of capacities. I’m in 3 such groups – one professional, one focusing on ASL and another that is more conversational.

Not long ago one of my blogging pals, Wendy of Picnic with Ants mentioned she no longer needed her relatively new hearing aids (HAs) because she now has bilateral CIs. Recently on FB another individual mentioned a need for replacment HAs that could not be met because of no longer being a part of the work force.

A contact with Wendy and a contact with the FB gal (who happens to have a blog on ASL on a different blogging site) and a connection was made – much to the delight of both parties. And I was more excited than both of them together. 🙂

I’ve previously returned older, serviceable digital HAs to my audio service provider who sends them on to be refurbished and donated to children who cannot afford them. That’s great. But what about adults who are not working and cannot afford them?

In general, insurance does not pay for HAs. And there’s the rub, because it is now known that untreated hearing loss leads to a loss of brain density which is related to dementia. Dementia is a huge problem in our elderly population today and is a drain on financial resources. If $6k in HAs every few years could prevent tens of thousands of dollars or hundreds of thousands of dollars in custodial care costs it appears to me to be the height of stupidity on the part of the medical insurance industry not to market hearing insurance aggressively. Keeping people functional would be an enormous cost savings. What is wrong with the bean counters that they are missing this? I’m not sure, but I’ve a niece in the health insurance business so I shall ask her about her thoughts on this.

Back to networking:  It appears the Lions Club accepts donated hearing aids to benefit men, women, and children who cannot afford them. It also appears that the Starkey Hearing Aid Company accepts donations, but I’m not sure how they are handed out. Hearing Loss of America has a financial assistance program. In Massachusetts the Massachusetts Commission for the Deaf and Hard of Hearing helps individuals get hearing aids, although funds are limited. Not every state has a commission for the Deaf and Hard of Hearing, but it might be wise to contact state government and see if your state has assistance.  Of course, for individuals in the workforce your state’s Vocational Rehabilitation office can assist in paying for hearing aids so long as they are related to employment.

It is important that deafies or HoH folk network so that HAs that are functional but live in dresser drawers (unless they are the backup HAs one should have) find their way to people who need them. Behind the Ear (BTE) is the only kind that can be easily recycled (a new ear mold will do it) although In the Ear (ITE) can be donated and the parts used to build another HA. My hearing loss is at such a level that an ITE won’t work for me anymore – I’m BTE from here on out now.

It is estimated that only 10% of people worldwide get the support they need to deal with hearing loss. We need to start engaging in some serious networking and rabble rousing to have HAs covered by all insurance.

What’s the point?


At a new doctor today. When I am at a new place I wear a large lime green button (see below). If staff does not read it what is the point of wearing it?

BTW, once they understood everything has been great.

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Dog Talk


I think I mentioned a time or two before that my daughter has a mental health therapy dog who is very productive for folks who are depressed or suffering from stress.  However, she’s also a very bright and adaptive little gal and she’s figured out that I participate in Dog Talk, also known as Speaking Dog.  Her Mom hasn’t really seen us in action before and was flabbergasted when she saw “Baby Dog” (my pet name for her) and me Dog Talking.

When I came in the door I instantly knew Baby Dog needed out.  Her Mom said she’d never seen her that totally focused on anyone. Not long after Baby Dog started talking to me by first lying in front of me to catch my eye, staring at me, and then, when I acknowledged her, doing a very energetic dance to let me know she had to go out NOW.  She’s never done that with her Mom or anyone else.  Just me.  Why?  It’s Dog Talk.  Dogs talk with bodies – they’re largely visual communicators, although they pant, leave scent trails, whine, bark, and make other noises.  Baby Dog (aka ‘Kinley) knows I can’t hear her half the time, but I’m the visual one in the house.

Need food?  Walk to Grandma, walk to the dish (which can be out of my sight in another room) repeat until the old lady gets up to see what the message is (anyone remember Lassie doing this?).  Water – ditto.  Go out – catch the eye and do a dance – the level of desperation in the dance tells me whether to run for the door or wait for the leash.  She also does a more energetic dance if I need to take the dog poo bag.  And Baby Dog can do no wrong so it a very positive feedback environment for her.

Her Mom was highly entertained and wondered why only I get this very focused and full body communication treatment.  Because only *I* pay attention to her in an almost totally visual way.  Her Mom wishes Baby Dog ‘Kinley would communicate with her as well when she needs to go out.

In addition, she lets me know when someone is at the door with a bounce off my leg (at her weight a little dog bounce is no problem) and, of course, I can hear a modicum of her bark.

She’d make a fantastic hearing ear dog.  But she’d miss her other family pack members too much if she got certified as a hearing ear dog and left with me when, someday, I move on.  But it just goes to show that the size of the dog is irrelevant unless one needs a dog to help steady the hearing impaired person – as in the case of Meniere’s.

Meniere’s and Tinnitus: a personal history


I was 14 years old and bored out of my mind that summer, so I enrolled in a summer school typing class.  It was during that class that I had my first Meniere’s attack. I felt light-headed and then nauseated; my balance was so bad I could not get from the typing desk to the door. After Mom got me I spent the next 24 hours clinging to the sides of the bed as the room spun around me, vomiting and sweating like I had the flu.

Only it wasn’t the flu. I ended up sick day after day, sometimes getting a day off, most times being sick part of each day. I was too sick to do my chores, ride horses, or much of anything else. I couldn’t walk, read, watch TV or turn my head without feeling as if I would be flung off into outer space. The low-level tinnitus I’d had all my life was raging. My hearing, never great, was in free fall and when I could hear my ears rang with sounds no one else could hear.

No one knew what was wrong. Doctors poked and prodded, drew blood, even hospitalized me for tests, including an EEG and a spinal tap. Then, when I was 16, a doctor got the bright idea to do the ice water in the ear test and as I spun out of control (and vomited) they congratulated themselves for finding out I had an inner ear problem.  I was sick for days after that test.  Oddly enough, no one ever tested my hearing.

Walking was my new final frontier. Walking a straight line was next to impossible and to this day I tend to veer to the right and bump people walking next to me. I learned how to focus on one spot like a dancer focusing on a spot on the wall. In time, I developed some control. I learned I had an “aura” and could identify when an attack was coming. I could drive because I had enough advance warning that I could pull off the side of the road and let the waves of dizziness and nausea pass.  I started focusing on reading – one letter at a time.

Once, in a bookstore I was surprised by an attack that hit so hard and fast I would have fallen down if not for grabbing onto a pole.  Those are called “drop attacks” and signal the later stages of the disease, although I didn’t know it at the time.  I lived on Dramamine. Salt restriction, mega-vitamin therapy, you name it – nothing helped.

My hearing, absent on the left side for as long as I could remember, went into a sharp decline on the right.  My ears felt full almost all the time. However, I never had ear infections until I was an adult and those infections were caused by an allergy to the plastic in my hearing aid.  Go figure.

In my late teens I developed severe headaches diagnosed as “cluster headaches.”  They often struck in the middle of the night with such ferocity that I literally fell out of bed and ended up at the hospital. I now see Migraines and Meniere’s tend to go together, so that those headaches may have been Meniere’s generated – or just an unlucky coincdence.  Between the headaches, the light-headedness and the dizzy spells I’m amazed I functioned at all.

I was 25-years-old when the Meniere’s finally burned out and the cluster headaches burned out with them. I’m still headache prone, but I no longer want to cut my head off to stop the pain. The dizzy spells are gone, but I still feel light-headed at times. I can’t abide rocking chairs or office chairs that tilt back. The tinnitus comes and goes.  Sometimes it is a low-level noise that goes on for days; sometimes it vanishes for a time and then comes back with a vengeance.

Wearing my hearing aid can exacerbate the tinnitus.  Or it can cover the tinnitus with other sound.  There is no rhyme or reason to these almost ultrasonic or subsonic noises in my head.

Loud, abrupt sounds are like getting hit on the head with a two by four. No matter how good my hearing aid is at cutting off abrupt noises, there’s a bit of a sound wave that gets through before the override kicks in, and for that one millisecond it is like I’ve had my brain stuck in a socket.  That’s all it takes to leave me reeling, light-headed, and disoriented.

It seems that there are so many more diagnostic tests these days than in the late 50’s and early 60’s, but the reality is that I don’t see much more than can be done to help people with Meniere’s or Tinnitus.  They are what they are.  All one can do is buckle down, endure, and hope for the best.