Extra, Extra!! Read All About It!!

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(To the tune of New York, New York... )

Start spreading the news.

I'm excited today.

I want to be a part of it,

A cure, a cure.

We've paid our dues...

I've heard some great news. Will this be a cure? Only time will tell. I try to stay positive that there will be a cure for us. It always seems that a "cure" that is a few years away ends up too far from reach. We've been hearing about "cures" the past 15 years. Dare we hope?

(Releasing some breath here.)

I don't want to get to excited. I don't want to be disappointed.

Foundation Fighting Blindness (FFB) has had some success with Gene Therapy. This was something I mentioned a while back when they first started clinical trials in London, England, with those who have Leber congenital amaurosis (LCA), a severe form of RP (retinitis pigmentosa).

Read all about it here. It's great news. It's a start.

Here is a video of this great news.

My inbox was flooded with emails about the success of Gene Therapy. Everyone's abuzz about this breakthrough.

FFB has many other research projects in the works for all kinds of degenerative eye diseases. Many people donate to FFB to help fund their research and clinical trials. I am one of them. I think it's a worthwhile cause.

Start spreading the news....

CI Users Among the Deaf

I wanted to share this video clip with you. It is CC (closed captioned) for those of you who don't know ASL. This is about CI implantees who are still Deaf (as in capital D-culturally Deaf). The CI didn't take them away from the Deaf culture.

Sweet Nothings in My Ear

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First of all, I would like to say that I wasn't as disappointed with the movie as much as I was with Andy in C Minor (Cold Case episode) and Silencer (Law and Order episode), but (yes, there's a but) there were some minor discrepencies.

First, I would be po'd if my husband went ahead with an appointment without telling me. So score one here.

I wondered what was the etiology of Laura's deafness, Adam's deafness? What caused it? I guess it wasn't that important, but "inquiring minds wanna know." At least this mind did.

When a witness came to the stand, she had a CI and she also had her child implanted. She could speak well and hear well. It's not always the case. Sometimes a CI recipient has to work on listening skills and have auditory lessons to speak well and listen for sounds. Some CI users can't use the phone or only hear environmental sounds, but cannot understand speech.

Usually in a courtroom hearing, lawyers will get professionals on the stand. Why wasn't an audiologist and/or an ENT put on the witness stand? They could have put their professional expertise and shared statistics and successes of implantation.

Since Adam had hearing and was speaking before he lost his hearing, he was a good candidate for a CI. That was true. If a child is born deaf and is implanted asap (at least before the age of 5), the success rate is higher. The child can develop speech better.

Dan, the hearing father, was saying that he did some homework on CIs and that CIs have 16 electrodes. There was an omission: Advanced Bionics has 16 electrodes, but there's another brand, Cochlear Nucleus Freedom, that has 22 electrodes. And Med El has 24. Either Hollywood was keeping it simple or Advanced Bionics was a sponsor. (Much like what brand of soda or even the car that was used by an actor/actress depends on the sponsor of a show. A product would be featured somehow, although I have to agree that the name was never mentioned.)

Deaf Pride and Deaf Culture was explained pretty well. I know enough that they prefer to sign and not use their voice. And that they are against any hearing assistive device, such as hearing aids and CIs, but welcome other technology that enhances their lives in other ways (like the TTY and/or video phones, special alarms that wake them/tells them the doorbell or phone is ringing and even tells them when a baby is crying.)

It is a hard decision. The Deaf mother was arguing with the father along the lines of, "What if he comes to me and asks, what's wrong with me? Wasn't being deaf okay enough?"

And the father counters that with, "What if he comes to me and says, why didn't you get me another chance to get my hearing back?"

There were arguments about how D/deaf people don't get high paying jobs. They don't get to have advancements like hearing people do. Some of that is true, but not always. Some are successful. Just like some hearing people, some don't get advanced education and have limitations to what they can do. Some don't get high paying jobs, either.

The poor kid was stuck in the middle of it. I thought about why he didn't say anything about wanting a CI or not wanting a CI. Then again, the show was more about the parents and the conflicts they were facing.

And as to the way the show ended by leaving us hanging...and wondering what was the outcome, again, the focus was on the parents, not the child.

All in all, from a one to five star rating, I'll give it a ****.

Why? The actors were convincing. Deaf Pride and Deaf culture were explained-just enough for a Hollywood movie. What else can you expect when it has to be explained in a two-hour time limit?

Share your views.

Another Reminder

Just a reminder...

The Hallmark movie, "Sweet Nothings in My Ear" starring Marlee Matlin will air on Sunday, April 20. Check your local listings if you are interested in seeing this movie.

It's another cochlear implant debate kind of show about a deaf mother and a hearing father with a deaf child. The father wants to have his son implanted with a CI, but the mother doesn't.

I hope I am not as disappointed with it was I was with the Cold Case episode.

Just by doing this, I am reminding myself and I don't forget. :)

Brandy

Hubby and I had discussed getting another puppy. When we met, I had Krissi, a Lab/Golden Retriever/Collie mix and he had a Black Lab/Beagle mix. Soon I had to put my Krissi down. She was getting old and sick. I grew up with dogs. I was never without a dog.

When my youngest was two, Hubby's dog was outside on a hot June day. We just installed central air and it was not compatible with our water heater. We had to get a new one. The water heater guy replaced our old water heater. She chose to sleep under the big, shady truck. The man didn't expect to have a dog under his company truck and ran over her.

Two years later, we talked about getting another dog. Hubby saw an ad in the paper for free Lab/Golden Retriever puppies. We named her Baylee. She was kept outside a lot. Hubby wanted to slowly housebreak her. The kids and I took her for many walks. One day, two months after we got her, she disappeared shortly after Halloween that year. Her collar was still connected to the chain. We never found her.

But, another few months later, that Christmas, Hubby brought home Brandy, a Shetland Sheepdog. (A Sheltie, for short, though I don't know why it's not Shetlie, but I digress.) She was no bigger than my hand at six weeks.

She brought more laughter into our lives. She was funny. She barked at everything that moved. It was the herding instinct. She was protective and a bundle of nerves. We were her family and no one was supposed to get near us. If we had family or friends visiting us, it took a little while for her to get her guard down.

The rabbits and squirrels taunted her. She was chained up outside and couldn't chase them. We had her run around sometimes without the chain or leash to fetch frisbees and tennis balls.

She was a part of our family. She did not like to swim, but tolerated baths. Her coat was so beautiful. I couldn't wait till she was two years old for the coat to really fill in.

But one day, two years ago, she got loose and took the opportunity to chase that taunting squirrel into the street.

The man braked, but it was too late. He felt so bad. It all happened so fast. My oldest daughter scooped her up into her arms while Brandy convulsed and drew her last breath.

Brandy (a.k.a. Foxy Lady) can chase all the squirrels and rabbits she wants now, with a full coat.

It took another year and a half before we got another puppy, a Black Lab, now almost 11 months old.

We'll never forget you, Brandy. We'll make room in our hearts for new pets, but you'll never be forgotten.

November 2004 - April 12, 2006

Pride and Independence

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During the past week, there was a heavy discussion in an RP support group about independence issues with RP. Is really about losing independence or being inconvenienced? Is it about mobilty? What's the difference? I'd say it's interrelated.

Let me describe what I felt after giving up driving before we move on to independence, inconvenience, and mobility.

At some point, some beyond that point, we realize we can not keep driving, for whatever reasons-vision problems, health, age, etc.

If you are still driving, but walking into things, do you really think you should be behind the wheel of a vehicle?

You think, Okay, I'll scan more; I'll look left to right more. I can't see anything below my nose, but I can quick glance down at the dashboard to check how fast I am going. (It's so easy for the brain to make you feel like you see more than you think you can.)

Quick description of retinitis pigmentosa (RP)-the first signs are night-blindness, followed by loss of peripheral vision. Central vision (tunnel vision) may be retained or slowly get narrower.

The first thing I did, though, was stop driving at night. I hated being caught in the dark. If I was driving when the sun started to set, I would panic and hope I made all the green lights. I wanted to get home as quickly as possible.

There is a train that cut through town. It always chugged through between 4:30-5:00 p.m. When I got home from work, I had to get to the other side of town to pick up my daughter and it almost never failed, I got stuck by the train on the way home. (We all know in the winter hours, it gets dark around 4:30. At least, it does here.) My oldest daughter and I would sing, "Train, train, go away. Go find another way."

I made arrangements to get rides with co-workers, because it got too dark in the morinings to drive. I paid them for their gas.

I did a lot of things to narrow down any distractions while I was driving. I didn't want any talking while I was driving. Towards the end of my driving "career", I kept the radio off. I thought I was hearing sirens when it was coming from the radio. I wanted to be on the lookout for ambulances and fire trucks.

I avoided left turns unless I was at an intersection that had either four-way stop signs or traffic lights. Sometimes I went out of my way and added a few extra blocks to my route because I made a right turn.

I was doing okay driving in the daylight hours. Soon, the lengthening shadows of the trees from the late afternoon sun made it too "dark" for me to see the road clearly. And on rainy days or when the roads were wet, it cast a shine (glare) on the road that made it hard to see. (Glare is another enemy to us RPers.)

What made me to finally give up driving was the fact that I got "whiteouts". This would happen when I had to adjust to the sunlight after being inside a building. Just stepping outside (it didn't matter if I had sunglasses on or not) made everything appear white until my eyes adjusted to the light. Imagine driving and making a right turn--facing the sun. My eyes would get instant whiteouts. It took a few seconds to adjust before I would give the car a little gas to speed up. Finally, I told Hubby I had to "hang up" the keys. For good.

To be honest, I don't know if he was "listening". Was he in denial? Did he think it was safe for me to continue driving? I guess I was glad that I did this on my own. No one took my driver's license away. I knew it was time. I was ready. Around this time, we were planning a trip to visit my FIL and his girlfriend.

Ironically, it was they who finally drilled into him that I shouldn't be driving.

Within days I was snappy and depressed. At times I was tempted to hop into the car and drive. No longer could I just go anywhere I wanted, when I wanted. I had to PLAN. I had to give advance notice if I wanted to get anywhere. I lost my independence.

Sometimes I got a taxi; sometimes I walked. I didn't want to ride a bike, because I didn't trust my hearing to listen for cars. I grew more frustrated, because I like being punctual. Taxis are late or busy. At first I gave my husband lots of space. I didn't want to "bother" him. He was used to doing his "thing". I did all the "boring" stuff. Go grocery shopping. Get the kids new shoes. Take them to the big park. Visit some relatives. I felt like a burden, that I was inconveniencing others. It didn't matter if it ended up inconveniencing me to fit their schedule, especially if it meant I could get something done. In other words, I was not the only one adjusting. My family had to adjust with me. It's getting a little better, day by day. I don't drive. That's that.)

I've had to swallow my pride. I hated, and still hate, to ask for rides. I was afraid of being turned down or appearing desperate. When someone offers, sometimes I'll take him/her up on it, sometimes I don't. It depends. Most of the time, I walk. Dentist appointment? Walk. Hair cut appointment? Walk. I want to be sure I am on time. Sometimes I can't depend on taxis unless I tell them to pick me up an hour earlier than the appointment time just to ensure I am on time if they are delayed. (It's more of an inconvenience, if you ask me.) I find I am shorter on patience these days. Don't get me started on city transit. To get from Point A to Point B, it can be an hour an a half. Might as well walk a half an hour to get where I need to go.

What makes it harder is that sometimes it's not just for me. I have to arrange rides for my kids, too. (Sometimes for the three of us.) I've been lucky that their school was only eight blocks away so that they didn't really have too far to walk/ride a bike to school.

Now, my oldest is entering high school (a good 45 minute walk/20 minute bike ride) this fall. I may end up asking a neighbor who has a teenager going to the same school, if she'd be willing to pick up my oldest on the way to school.

Because the elementary school my kids were going to is getting old and there is no room to modernize it, the church and school is building a new church and school on the outskirts of town. I've mentioned my dilemma to the principal. The school bus service won't pick up my kids because they aren't a "special needs" child. (I wrote about this in a previous post.) So far, I haven't heard anything. (Moving out to the country just to get bus service is not a good option for me because the proximity to other services/businesses I have now would be gone, too.) I may start calling some parents to see if they drive by or live in the area and can pick her up/drop her off for me. Paying for gas is not a problem. As far as I am concerned, I have no car payment, no car insurance, no maintenance or gas to pay for, so it's not a big deal.

Getting back to the words "independence", "inconvenience", and "mobilty", what do they really mean?

Dictionary,net-1) The state or quality of being independent, freedom from dependence, exemption from reliance on, or control by, others, self-subsistence or mantenance; direction of one's own affairs withour interferece. 2) Sufficient means for a comfortable liveihood.

What is inconvenience?

Dictionary.net-1) The quality or condition of being inconvenient, want of convenience, unfitness, unsuitableness, inexpediency, awkwardness, as, the inconvenience of the arrangement. 2) That which gives trouble, embarrassment, or uneasiness, disadvantage, anything that disturbs quiet, impedes prosperity, or increases the difficulty of action or success, such as, one inconvnience of life is proverty.

What is mobilty?

Konsult-ease of moving about. Often specifically meaning access to a priviate vehicle for travel.

St. Louis Great Steets-Movement of people or goods within the transportation system.

Word.net-Quality of moving freely

Giving up driving is a loss of independence. It is an inconvenience to rely on others. Is it, then a state of mind? You can be "independent" as far as making decisions for yourself, but it would take a lot of adjustment to change the mindset that "independence" isn't about having your own car to go anywhere at a moment's notice. You just shift your "dependence" on your car to "dependence" on others. It is far easier to "depend" on your car and provide your own transport.
Transportation is a big issue. In our society, it is the norm to own your own car, thus providing your own transport at your convenience. I do not live in NYC or Chicago where subways are a common mode of transport. I do a lot of walking so I can retain some semblance of "control" over my independence.

Where does mobility come in? Finding other options of getting around.

There will come a time when just walking around freely may be just as "dangerous" as driving was. I will need to find other ways to remaim mobile to stay "independent". This will be my next step: The white cane. (Scary prospect, but for me to maintain mobility and independence, I will have to face that.)

I am a "closet" RPer in a lot of ways. Some people just don't realize I have a vision problem until I tell them. If they did notice something was wrong, they may attribute it to my hearing loss. If someone is trying to talk to me, I may scan my eyes to find the speaker. They may just think that I am trying to find the speaker by sound, not by sight. I will have to overcome my fear of coming out of the proverbial closet. The only way that can be done is to start doing it. The more you do it, the easier it is. As one RPer said, "I am too busy watching where I am going to pay attention to people's reactions."

Thanks for "listening".

Abuzz

Whoa. I thought there'd be a lot of buzzing among the Deaf community about the Cold Case episode. I do not know all the "rules" of Deaf Culture.

I learned some things, like a suspect of a murder cannot interpret for other suspects (conflict of interest). That does make sense.

As usual, we know that the media thrives on drama and TV/movies are no different. They aren't going to do a lot of digging to get things "right".

I am not going to say much about it because, like I said, I don't know a lot about Deaf Culture. I don't want to step on anyone's toes here. I am too much of a peace keeper and I don't like arguing.

This link can lead you to other blogs about how the Deaf feels about the episode and the negative image it casts on them.