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Glitter Graphics

(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....

My Skeleton

My brother, sister, and I were sent to a school thirty minutes from home. We had daily auditory lessons. The oralist mentality was strong in the 1960s. The audiologist told my parents NOT to learn sign language. “Make them talk.” If we learned signs, it would make us “lazy” and not talk. My brother and sister were mainstreamed into the local school in the first and second grades. I remained in the self-contained classroom with other deaf kids. (Most of these kids were deafened because their mothers had German measles. The vaccine came out in the late 1960s.)

I had the advantage of signing at school. (We were encouraged to both talk and sign.) But when I was at home, it was a total oral environment. I was, and still am. culturally hearing.

Some of the deaf kids singled me out because I had some hearing. I wasn’t “d/Deaf” enough. (I wasn't immersed in the Deaf culture and I also had some hearing.) I wasn’t mainstreamed until I was in 8th grade. What a wake-up call!! I had to study to keep up with my peers. I was on my own. No interpreters. No teachers who knew sign language. It was a total oral environment. I struggled with my identity. I wasn’t d/Deaf enough, but I wasn’t “hearing” enough, either. Where did I fit in?

My self-esteem wasn’t very strong. I felt like I was constantly being criticized. I was different. I was sooo focused on that. I felt like everyone knew I was “different”.

After graduating high school, I had a hard time finding work. Who would hire a hard-of-hearing (HOH) person with no experience? I was honest and told potential employers that I was HOH. I didn’t have to hide my disability. I was coming to terms with it.

I remember when I was working at a factory, a new hire was assigned to work with me. He was told by other well-meaning co-workers that I was HOH and that he needed to face me as he talked to me. We found out that we lived in the same town (the factory is a 35-40 minute commute). We talked about where we went to school. We found out that we attended the same high school. He was a grade behind me. He exclaimed, “I knew you looked familiar. I didn’t know you had a hearing problem.” That made me realize how focused I was on my hearing loss. That I felt like everyone knew I was HOH. I was a very insecure person in high school. I wasn’t “popular” and I just felt like I didn’t fit in. I gave my parents a hard time because I wanted to go back to the other school with my old school friends. I resented being mainstreamed like that.

Just when I was already coming to terms with my hearing loss, I had another disability to deal with-vision loss. I was already in my late 20s, noticing that I didn’t see so well in the dark anymore. My peripheral vision was diminishing. I had a lot of gaps in my peripheral vision that made it so hard to get used to the fact that it was going. Imagine horse’s blinders next to your eyes, but poke some holes in it. You can still still see something and sense some movement out of the corners of your eyes. They call it "islands of vision" or holes in your vision.

I have yet to come to terms with my vision loss. I feel a myriad of emotions-anger, frustration, acceptance, depression….I am continuously going up and down. I can never get through one step of the grieving process to the next. Every time I notice that my vision is getting worse, I start the grieving process all over again. I am pretty much not denying my condition anymore. It’s deteriorated to the point that I know it’s there. I can’t ignore it anymore or pretend that it’s not there. I don’t want pity. I want compassion. I want understanding.

I should prepare myself by learning Braille, getting mobility training (white cane), learn tactile sign language, computer-enchanced technology, and independent living (cooking, housework, grocery shopping, labeling food, laundry). Support from family is soooo important. I feel like they expect me to make it easy for them, not the other way around.

Some people with Usher Syndrome spend months (six months, nine months, a year-depends on how much you need to learn to be independent) at Helen Keller National Center. This is a great opportunity for people who are deafblind-even if they have a little hearing and sight left. For me, I can't even think about leaving my family for six months to prepare myself for independent living. Some do. They know they are doing it so that they don't end up relying on their family-they can be independent. This is something I have to think about. There is a center in Milwaukee that does some of these things, but I still would have to leave my family for a certain amount of time and that sucks. I don't know what I am going to do. This is where "support from family" comes in. Do I have it?

I cannot comprehend leaving my family for a long time. The best I can do is work out a plan of some sort. Maybe one week of O & M training here. Doing other things at my own pace.

I need to change my mentality. Coming out of the proverbial closet is not easy. I don’t care if people know I am HOH. I lived with it my whole life. I like to wear my hair up in a pony tail to expose my hearing aids. That way people see it. Some already can tell just by the way I act and talk.

If I had vision loss all my life, maybe it’d be easier. Kids are so resilient that way. You don’t know what you are missing if you never had it or much of it or if you just grew up with it.

I do need to face it; I am not getting any better. I need to prepare myself. I can choose to wait and hope that a cure will be found, or prepare myself anyway to make life easier for me.

(Easier said than done.)

Extra! Extra! Read All About It!!

This press release offers hope to those who have certain diseases such as Parkinson's, Alzheimer's, spinal cord injuries and retinal disorders (like RP/Usher Syndrome). I am surprised it didn't mention diabetes. Wasn't there something about stem cells helping those with diabetes?

I haven't lost hope for a cure. I do hope there is one in my lifetime.

I am torn with the use of stem cells. Is it ethical? Is it moral? Is it okay as long as it is from adult stem cells?

The article did state that they are working on alternative "therapeutic approaches" so they don't have to use stem cells. That would take care of my dilemma.

I am just going to see where this goes, too.

There's so much talk about the retinal chip and gene therapy, too.

Only time will tell.

Sign Language

I use sign language websites to brush up on my signing. Most of the signs I have learned are 30 years old. Some signs have been modified over the years.

This website is good for looking for a word you are not sure of. It's also great for beginners, too. I enjoy using this website to verify a sign for a word. You simply click on a letter at the bottom of the web page and then scroll (on the right) for the word you want to look at.

This website is also a fun one. I use the "QuizMe!" to check my knowledge. There is even a section for teaching babies sign language. I remember teaching the girls signs for 'mommy," "daddy," "more," "please," "thank you," "drink," and "milk." This enabled them to tell me what they wanted-especially at mealtimes.

I think it's important to learn the manual alphabet before learning the signs. This is because when you don't know or aren't sure of the sign for a word, you can fingerspell it. Believe me, though I know a lot of signs, I couldn't believe how rusty I was. I didn't use sign language for a long time until I went back to the tech college. A lot of the signs stayed with me, but there were times when I didn't realize a sign had been modified or updated or I just didn't know a sign for a word.

Here is a website to practice your fingerspelling.

ASL (American Sign Language) is not the same as as BSL (British Sign Language) or signs in other countries. There may be similarities, but I really haven't taken the time to compare and really look at the signs used in other countries.

I just thought that I would share the websites with those who are from the States or the UK (BSL).

I will be looking at BSL and look at the differences in ASL. It's interesting.

I want to make a note here that I am not the best at ASL as I am with SEE (Signed Exact English) or maybe even PSE (Pidgin Signed English).

I don't know when or how I will practice tactile signing. This would mean touching the other signer's hand(s) as he or she is signing. It would be another step I don't want to think about. It would be like giving in to Usher Syndrome. It's hard to explain. I know that it's best to be prepared for blindness and learn all I can, but there's still this part of me that wants to hang on to hope that a cure would be found. Maybe I am still in denial. I am continously going through the grieving process (denial, bargaining, anger, depression, and acceptance). I take steps backwards and forwards all the time. I have to keep adjusting to the disease so I start going through the process all over again. I don't just want to sit around and wait for it to take away all my sight. I don't want to give up.

Then again, it could come in handy if I did know tactile or even Braille. I have met so many wonderful and seemingly strong people who have Usher Syndrome nationwide. They are all supportive. They give helpful suggestions and share experiences. They keep me strong.