IFHOH Day Three, Part II

Day three-- part II

The first workshop we attended Friday was called Accessibility Awareness Collaboration and Hard-of-Hearing People given by Sami Virtanen from the Finnish Federation of Hard-of-Hearing People. Like the the real-time text workshop, I found it exceedingly difficult to pay attention. Tired of reading CART, and feeling full from the large lunch I nearly fell asleep. The late night, early morning routine was catching up with me. Virtanen spoke mainly about Finnish policies, especially with regard to required captioned television programming. The US has had that since 1990. I think the information presented was probably more useful to those in the political arena of policy change, because several representatives from HLAA, CHHA and various other HH/deaf organizations around the world stood up to comment.

I wanted to leave then, but Creating Consumer Awareness through Policy Change turned out to be a surprise. Sherri Collins was a firecracker from Arizona. After waking us all up by handing out prizes she detailed her personal hearing history, and drew a thought-provoking analogy between independence and accessibility. It was US Independence Day. I had forgotten.

Next, Sherri expanded on events leading up to a policy change requiring Arizona audiologists and hearing aid dispensers to provide information about the benefits of telecoils to consumers. Telecoils seemed to be a recurring theme at IFHOH.

Following her presentation, a few people commented they felt a law seemed unreasonably harsh. A man from Michigan spoke about how pressure had been placed on an airport to loop it without resorting to policy change. A woman from New Zealand detailed a sad story about an HH/deaf American tourist who was hit by a passenger train when he got off at the wrong stop after failing to hear an announcement. All NZ trains were looped for telecoil after that. Sadly, she said, it took a death to change policy.

One man remarked that telecoils should be called "accessibility coils" or a-coils since they were used for much, much more than the telephone. Discussion ensued about telecoil vs infrared and privacy concerns in courtrooms, federal buildings and other sensitive areas, since people with telecoils can sometimes hear outside looped rooms with the doors closed. Others protested that hearing aid manufacturers were making smaller, more attractive aids for the Baby-boom generation, dropping t-coil in the process. Two more concerns were voiced:

1) Policy to require telecoil induction loops in public buildings could become obsolete within a few years if hearing aid manufacturers stopped making hearing aids with telecoil capability.

2) Hearing aid manufacturers should be encouraged to include telecoil capability in their newer models because of the many, many benefits.

The final workshop of the day was Experience Working for and With Those With Meniere: A Non-Medical Perspective I attended this one mainly for my husband who was diagnosed with Menieres about six years ago. Dr. Henk de Graaf from the Netherlands reported on the results of a twenty-five year study of Menieres patients in his country. Then he led a discussion of alternative treatments for Meneires. One woman had some success with a chiropractic procedure where the feet were adjusted. Several people mentioned using vitamins, exercise, acupuncture, eating certain foods, not eating certain foods, reducing stress, yoga, marijuana-- you name it. Someone else mentioned the Meniett device. Hoping to discover something new I could share with my husband, I came away feeling deflated. No one knows of a cure.

That night Lorne went to a football game. In the mood for something ethnic, Kate, Ann and I sniffed our way up Davie Street, and found a little Mongolian Grill.


IFHOH Day Three, Part I
IFHOH Day Two
International Federation of Hard of Hearing Congress -- Part 1

Menieres Hell

Today I awoke to a familiar sound-- my husband puking in the toilet. Retching must fall in the 250 hertz range on an audiogram because I can hear it perfectly without hearing aids. 250 hertz is my only normal score. Sometimes I wonder if God preserved just this one frequency so I would always know when he was having a Menieres attack. I'm deaf to most of his speech.

I got out of bed. "Can I get you anything?" I already knew his answer would be no, but he often needs something. He only says no because he wants to be left alone. Our usual routine is I suggest things until he angrily waves me away because I feel so helpless knowing how miserable he is and not being able to do anything. Somehow it doesn't seem right to go about my usual business ignoring him, which is exactly what he wants me to do.

"How about a pillow or blanket?" This is code for 'Are you almost done throwing up?' I don't want to ask outright if he's done, because it's sort of negative. The throwing up phase can last hours and hours. His longest attack so far lasted about eight hours. Though that's not exactly correct, because I'm only talking about the throwing up part of it. People think when I say he had an attack that lasted eight hours, it means eight hours of flu-like symptoms. No, it's not like that.

It's eight hours of throwing up with head in the toilet. What I mean is he cannot move his head away from the toilet for eight long hours. He feels he's going to fly off the edge of the earth if he moves his head or legs or any part of his body. That's vertigo. Your world spins out of control as if you're on a hellish ride at an amusement park. It lasts hours and hours and hours until he collapses. If he weren't so strong he would collapse earlier, and I would need to call 911 so he could be taken to an emergency room, but so far we've been able to avoid that spectacle. Afterwards, he needs to sleep and can have days and days of not feeling 'right' in the head.

Talking makes him throw up. This morning I couln't hear his response to my question about the pillow and blanket because his head was in the toilet and I needed to see his lips.

"Can you sign?" I asked. Sound came from the toilet but no sign from his hands. I assumed he wanted to be left alone and found a quilt to put over his back and shoulders. That's all I could do.

Last Friday he had an attack on his way to work and hadn't shown up by 1pm. Everyone was out searching for him. I took two hours off work to drive his route just in case he had pulled off the road somewhere, and was in need of help. My imagination ran wild with thoughts that maybe he flipped his car due a sudden drop attack. I've heard nightmare stories of this happening. The other worry that kept running through my mind were the similarities between initial onset of a Menieres attack and initial heart attack. What if he thought it was Meneires and pulled off the road, but had a massive heart attack instead? I didn't find him and was frantic by the time I got back to work. Luckily when I arrived a message was waiting that he'd been found in the parking garage of his office. He had been missing for six hours. He had his cell phone, but wasn't thinking clearly, so turned it off and didn't call anyone to let them know where he was.

He's in a deep sleep now. Later today I'll pump him with liquids and he'll bounce back quickly because he's so fit and basically in great health. When he isn't sick he works out two hours a day.

Menieres disease also causes hearing loss. I've told this story to many friends. He is one reason I am sure of God-- but I won't debate religion with anyone. The first time we met, I shook his hand and I got a message he was THE ONE. It was weird because we met at work. He didn't ask me out for months, but I knew the entire time he was going to be my future husband. I even told my mom. It wasn't like I was into him or anything. I didn't know him well enough to be that into him. That's how strange it was.

All these years he has been so patient while I've been losing my hearing. I've heard the complaints from other late-deafened friends-- husbands who wouldn't allow TV captioning, or wouldn't repeat more than twice, and couldn't handle all the hearing loss issues. My husband has been so great about it. NOW he's losing his hearing, and I'm in a position to help him through this. I can't help thinking it was meant to be. US-- I mean. Not the hearing loss. He doesn't deserve this hell.