Saturday, May 23, 2009

My White Knight

It’s funny where thoughts lead me

Remember how I came up with a name for my CI (cochlear implant) ?. I was thinking about rabbit ears, then I remembered Peter Cottontail, a children’s book about a rabbit. So Pete (or Petey) was the chosen name, and as an added bonus, if Pete were to have a brother…a CI in the other ear…it was going to be named “Repeat”. Pete and Repeat... (I remembered some joke about twins with that one, but I don’t remember how it went, though.)

The cane will be like an extended arm. It will warn me of obstacles in my path. In a way, it’ll be a bodyguard of sorts, my knight in shining armor, er, aluminum-all decked out in red and white, so it’s easy to see where my thoughts lead…I came up with a name for the cane. I was thinking that name of a knight would be fitting. Meet…Sir Lancelot (or Lance, for short). And it has a double meaning because it “lances” a lot. Yep, another male name. Heh, heh. (A result of too many females in my house??...heh.)

The fourth O&M session was somewhat a review of staying in step, crossing streets, and listening to parallel traffic. That can be a challenge. The instructor stressed that it was important to wait till the car that passed us to be out of earshot so an oncoming car wouldn’t be drowned out by the passing car. There were also lawnmowers to consider and if that were the case, then you’d have to wait till it was the farthest from you. The world is a noisy place and I pick up things differently or may not hear sounds at the same distance others do. I have a hard time singling out a sound. In a bar or at a wedding, the TV or jukebox/band/DJ would overpower anything else I want to hear, like conversation. So lawnmowers may beat out the noise of a vehicle. I am so used to using my vision to “hear” for me and I tend to “see” what I hear, if that makes sense..

The fifth and sixth sessions were pretty much review-making sure I use nearest parallel traffic as my cue to start walking across the street at two- and four-way stops and at traffic lights, whether there’s a signal for left turns or not.

I now have another cane, a fiberglass telescoping cane. It’s very lightweight and until the next session, I’ll have to make a decision whether I want to keep this one or the folding one, which is aluminum, btw. I am so used to using the folding one. I was also given three different rolling tips (each one larger than the last) to try out and see which one I like best. Rolling the cane versus tapping the cane makes a big difference in feeling the texture of the sidewalks (dips, cracks, or just worn down and full of tiny bumps). I even feel the cane go off the edge a curb more. But, it’s harder on my hand. I FEEL the vibrations as I roll it back and forth. I still tend to swing more to the right than the left so I’ll have to watch for that. I do like the fact that I’m not getting the jabbing into my stomach as I hit a crack with the tapping method, because the tolling tips go over the cracks better. So many things to try out.

Coming Out

A few days later, on a late Monday morning, I took the plunge. I got a hold of Onyx’s leash and Lance and took a stroll in the neighborhood. It was a bit nerve-wracking because not everyone in my neighborhood knows about my vision problem and would be confused or not understand why I was using a cane. I figured I might as well get used to it. Onyx was surprising good, staying close to my leg on the left side. She “heeled” very well. I was proud of her. I didn’t try it with Topaz. He tends to pull yet and I didn’t want to deal with that.

Some of the neighbors were out and about. One lady had her dog out, unchained. Before I was aware of it, she called her dog to the door. I looked up at her and she said, “He’s just behind your dog. Now he’s going to come by me.” It was strange to think that she felt she had to describe what the dog was doing. I could see him, but it only reinforces my belief that the public needs to be informed that not all cane users are 100% blind. There were lots of lawnmowers out. People relaxed during the weekend and maybe most had evening shift jobs. I did my “listening” for traffic, trying to weed out the sounds of weedeaters (pun intended) and lawnmowers. Then there was a garbage truck. Slow moving. Big road hog. Noisy. I pretty much used my vision to see if there were no vehicles coming before crossing a street. An older man was outside and saw me. He said that it was a beautiful day and “you enjoy your beautiful walk.” Again, the assumption that I couldn’t see anything and that he chose his words “beautiful walk” instead of “beautiful scenery” or something. I did have an emotional moment with that one, but I kept going. Onyx walked with me without a hitch.

Two days later, I braved it and took the plunge again. I saw a neighbor I talked to often. I don’t think she was aware I had a vision problem because I walked the dog(s) often. It felt weird. It’s going to take some getting used to, not only for me, but for those who knew me casually.

I am always getting jabbed into the stomach by the impact of the tip getting stuck into a crack in the sidewalk. The cane bends like a fishing pole.

(This is another thing about me: I’m left-handed. I write with my left hand. I eat with my left hand. I used to play tennis with my left hand. I scrub with my left hand. But pretty much everything else, I do with my right hand. I bowl, shoot darts, and use the cane. Weird..You know that saying about how left-handed people control the right side of there brains and right-handed people control their left side of their brain…well I guess I’m only half in my right mind. Heh..)

Oh, I had another “Close Encounters of the Magnetic Kind” moment.

I was hanging the wash on the line and whaddaya know, I bumped my head on the clothesline and ol’ Pete decided to pop off my head and attach himself to a clothes pin. It was one of those plastic ones with the metal clips that holds it together. Well, they are MAGNETIC!! It was like scolding a wayward dog or child or…(dramatic pause here)… husband. “Come on now. You have to stay with me. “.

The other day, Flare was practicing her music and the high singing pitches (soprano) were getting to me. So I just turned off my hearing aid and demagnetized my CI. Isn’t that great? A whole new meaning to “selective hearing”....just turn everything off so I don’t have to hear it.

Hear, Hear.

I had my 9-month map earlier this week. I am pretty stable with my hearing, word, and sentence tests. There isn’t much to report here. I had the volume pumped up a bit more for the first two programs (P1 and P2) while P3 (focused listening) and P4 (music program) stayed the same. I did get the high pitches back, thus the sharp “sss” sounds when people say the “shhh” words. I’m just playing around with that again because things sound kind of “flat” without it. I’m hearing the details of the dogs walking on the floor again-padded paws along with their toenails clipping on the floor.

I still hear different birds chirping, but until I know which bird is what, I couldn’t tell you which ones they are. LOL. One day I was sitting on the porch, just looking around (or zoning out, lol), I hear a weird bird. I’m like, is that a duck?? Where is it? I’m looking up at the phone lines, rooftops, etc. Here Hubby was standing in the doorway behind me, using his fake duck call thingy he uses for hunting. I’m sure he got a kick out of that. Ha.

Okay, will try to make my blog rounds when I can. I’m so behind on everything again. Emails galore!!! I’ve been pretty selective with emails.

Tuesday, May 05, 2009

I've Got My Groove Back


The most recent session (No.3) was even better than the last two.

I learned some going up/going down the stairs techniques with the cane.

I still had a problem with my start up. No, not like a person who doesn’t know how to use a standard stick-shift vehicle, but I tend to take a big step with my left foot and swing too far to the right. That made me “off-beat”. (Now, now, be nice. I know what you're thinking- that I’m a little off-beat anyway…) Talk about starting off on the wrong foot…wait...I take that back, I DO start off on the right foot (actually, it's the left foot, but I degress), but I have to work on my first three steps. Hopefully, that’ll be worked out asap. I was also afraid to tap the cane too hard. I need to loosen up more, too.

I was encouraged to walk faster if that would help me stay in sync. It did. At the beginning, I still couldn’t tell when I was out of step. I was concentrating on my leg moving to the opposite direction of my swing, but I couldn’t focus on that. I was told that when my left foot landed, the cane should tap on the right side and visa versa. Suddenly, it clicked. It was easier to focus on my left foot landing at the same time the cane tapped on the other side. Whoo-hoo. (Patting myself on the back.)

I've got rhythm; I've got the groove. I'm marching to my own beat. Like I said before, just a little but of work on the first three steps. I'm hoping to fix that before the next session.

The instructor took me to an intersection that had 4-way stop signs. We worked on crossing the street. (Yikes, I don’t want to think about crossing the street with street lights yet. I know the day will come and I hope I don’t freak out. LOL.

I got to keep the cane this time. That must be a real good sign, eh? I practiced it on the upstairs/downstairs techniques so they’d stay fresh on my mind. I haven’t really gone outside to practice yet. I like to walk the dog(s) and it would be difficult to simultaneously walk the dog and cane (it sounds weird, but I’m trying to use the word “cane” as a verb.) at the same time. I guess I just have to go without them.

On the home front: Not a whole lot of news at this point. (This mom needs to get a life. LOL).

Both girls are so looking forward to the end of the school year. This mom is, too. All those papers they bring home!! I am not talking about homework, either…aacckk. I’ll be glad to get a break from that. But it also means another step up the school ladder, another year, another grade….it just seems the older the girls get, the faster time flies. (No, I will not go there…you know, the older they get, the older I get…)

But summer break also means finding a replacement driver for Angel. The driver who currently picks her up from school won’t have a need to go there anymore because her daughter will be moving on to the high school. (Sad face). I’ll look through Angel’s yearbook and start calling other parents. Some kids stay after school for extracurricular activities so it narrows down my choices. (And I really appreciate the driver making an extra trip to the school after school because her daughter was active in afterschool activities. That was super nice of her.)

Now that the weather’s been nice lately (with no on-again, off-again winter surprises), Flare’s been riding her bike to and from school again. She can do that at the beginning of school in the fall. Hopefully, by the time winter (oh no, that "w" word again) rolls around, a neighbor kid will acquire his driver’s license and she can start riding with him. I’ll have to worry about her getting rides home during football and basketball season, though. (Note: She can take driver's ed this fall, but she won't be 16 till the summer of 2010.

I’ll be getting my 9-month map for my CI (cochlear implant) next week. (I can’t believe it’s been nine months already!!) At this point, I don’t think I need any tweaking done on the CI, but maybe it’s subtle and I don’t know it. Kind of like the RP progression: It’s subtle at times and by the time I notice a drop in vision, I’ve adjusted to it somehow. I do remember a lot of things I used to see well, like stars and fireflies. Speaking of which, they will be out soon. I can just see Angel squealing with delight over the bugs with built-in light bulbs, and I will just live vicariously through that moment with her. :)

Speaking of marching to a beat I mentioned earlier, Flare looked at my cane and wanted to try it out. I told her how to grip it and-without even getting into the “n’sync” chorographic details, she took off like a natural. I couldn’t believe it. She was “in step”. Of course, she’s a color guard in Vanguard. She knows how to march and follow the beat. She knows a thing or two about “footwork”.

That’s it for now. I don’t want to make this post a long one (like the other one), which I could have made into two separate posts. Oh, well.

Talk to you later.

Friday, May 01, 2009

Operation Raising Cane

I have session two behind me. (I used “raising cane” in the title in reference to learning…kind of like raising kids. You make mistakes and learn.)

First thing we did was to go a few blocks away, to an area nestled out in the neighborhood jungle. I felt self-conscious, hoping that no one would recognize me from my “good weather” jaunts with the dog(s). (Yeah, “coming out of the closet” is a hard thing to do. If I don’t know them, it doesn’t bother me half as much as it would if some stranger, like a cashier, knew me as a regular customer at a store. I guess this is also something you just have to get out there and deal with it till it gets somewhat easier.)

Hubby came along for about 15 minutes to learn the sighted guide routine. Once he got that down pat, he was free to go.

After looking at the address system in town and gauging how much I can see in the distance (i.e, traffic lights four blocks away and how far I can see cars in the distance ahead of me or behind me and whether I could read address numbers and street names), I got to practice caning at the local mall.

I still need work on being “in sync”. Here my athletic prowess shines through NOT. Winks. It’s more that I am focusing too much on all the things that I have to do (keep hand by my stomach, move the wrist left to right while staying in step. I tend to “overstart”. I take my first step a bit too long and swing the cane too far and then I lose it. Or I move the “magic wand” too fast and I am not walking as fast to keep the pace and then I am out of step again. As I said before, it takes practice. Some people are a natural. Some are a quick study and pink up on things fast. I’m just one of those who need to work on it. Sometimes I can tell when I’m not doing it correctly. I feel “off-balance” and know I need to straighten up somehow. It is a challenge.

*Many thanks to my Usher friends who are cheering me on and giving me enocuragement that I'll "get there" because some have "been there". (((Group HUG)))

I wanted to make a minor correction from the previous post (which I already editied). The folding cane usually has four or five sections, not three. I was thinking that the top part is called the grip, the body of the cane is called the shaft, and then the bottom is called the tip. (Don’t to confuse “tip” with being the top. In this case, it’s the bottom.)

I don’t know if I mentioned this or not, but a few months ago, I noticed I couldn’t read the paper. I got frustrated and didn’t read it for a few weeks. I didn’t know if it was age-related or if it was the RP progression. So I called the clinic, but my regular ophthalmologist retired. Oh, bummer. I hate starting over with a new doctor and go through the process again. Then, weirdly enough, I could read the paper again. It wasn’t blurry and I didn’t have to squint too much. After that, it fluctuated-one day I could read the paper and the next, I couldn’t. What’s up with that? And since Flare was getting migraines all the time, I thought I’d make an appointment at a local discount store for an eye exam for both of us. Maybe Flare just needed glasses and with all the reading she has to do for school (besides reading tons of books that interest her-right now it’s the Cirque de Freak series). So, it turned out she needed +2.25 OTC (over the counter) reading glasses. (Contact lenses may follow.) Her major headaches are gone. She’s not missing classes. There’s still some catching up she has to do, though..

As for me, I only needed a +1.00 OTC reading glasses. Anything stronger and it was blurry. It did magnify what I needed to read. I still have days where I can read better on my own than others.


Here’s a couple videos about a woman with Usher syndrome type III. Since it wasn’t closed captioned (cc) and there is no transcript available (for my deaf/hard-of-hearing readers), I have included her brother's blog about it below so you can read what it was about.

First video:

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This is the most important story I've ever told. It's also the toughest. My sister, Rebecca, is smart, kind and hysterically funny -- truly, the most remarkable and impressive woman I've ever met. She works as a practicing psychotherapist and to make ends meet she teaches 15 spin classes a week. She does all of it despite a disability that's robbing her of her vision and her hearing all at once.

Stop for a second -- think about that! Doctors have told my sister she will likely go completely blind and deaf within the next 10 years. As my sister describes it, "It's like I am slowly being taken from the world around me -- like the end of an old Warner Brothers cartoon on TV where the picture becomes an increasingly smaller hole until it finally fades to black."

Rebecca has a rare genetic disorder called Usher syndrome, type III. It is among the cruelest of disorders -- progressively stealing normal life away from roughly 16,000 people nationwide. And, currently, there is no treatment or cure. Rebecca lives courageously each day with the hope that a cure will be found before it's too late. My family and many others are determined to help through our involvement with the following organizations.

An extraordinary research effort is already underway through the "Usher III Initiative" at Hope for Vision where a dedicated team of scientists is focused on Rebecca's specific disorder. I recently spoke with Dr. David Saperstein, Scientific Director of the Usher III Initiative, who says their researchers are working on a multi-faceted approach to slow or halt the disease's progression, including the development of a targeted drug and gene therapy.

In addition, the Foundation Fighting Blindness funds research on a broad spectrum of retinal degenerative diseases, including Usher syndrome, and was involved in the important early work that helped characterize the gene that causes Usher syndrome, type III.

I asked my sister to share some personal stories about her experience living with Usher syndrome, type III -- her fears and the challenges she faces:

Second video:

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More from Rebecca...

There isn’t an hour that goes by where I am not reminded or challenged by my loss of vision or hearing, but this is my life and these are the cards I was dealt. I'm not frightened by the progression of my condition, but I am saddened by the things I can no longer hear or see.

I have the same hopes and dreams as any fully-sighted and hearing person and my dreams haven't faded with the progressive loss of my vision and hearing, but my disability has made me more driven and eager to take on each day. When I began to lose my hearing, I learned sign language and have found a sense of belonging among the Deaf and hard of hearing community. When I started coming to terms with the idea of going blind, I sought out a mobility specialist to teach me how to use a cane so when the time came that I needed it, I'd be ready. I don’t have time to sit around and think of all of the possible things that could happen to me. I simply don’t have time.

I have always insisted on living my life independently. So, it's been a challenge to ask for help from others. However, as my vision and hearing have continued to decline, I have become more comfortable asking for help. In fact, it's felt very liberating. It has allowed me to really connect with others and has enabled others to become more comfortable and open with me about their own lives. I'm incredibly lucky to have a wonderful, loving family and very loyal, close friends. The more I have come to accept myself and face my own challenges, the stronger my relationships with others have become. What I have learned is that we cannot live life on our own. We all need each other for support in so many different ways.

Sadly, many of my biggest fears already have been realized. I’ve been rejected by people I’ve dated when they found out about my disabilities. I’ve been left alone in a really loud and very dark bar by people who didn’t understand that I needed them to stay by my side. I’ve even been hit by a cab. You name it; it’s likely happened to me! But I can’t stop living my life because of the obstacles I face each day. My disabilities have made me passionate and energized to live my life to the fullest.