A PLEA FOR HELP

I normally do not like to draw attention to myself but I do wish to get my story out.

I need help. I think it's difficult to ask for help when I so much feel other people could use the help instead of me. 

Here's my situation:

As you know I am deaf and blind by Usher Syndrome. I have lost nearly all of my remaining vision. I have one Cochlear Implant that works very well. However, I am in need to get the left ear Implanted. This is a medical necessity rather than a mere option due to blindness.

Secondly, my wife suffers from a brain injury from a car accident four years ago. She is no longer able to support the family. By obtaining the 2nd CI would enable me to retrun to the Division of Services for the Blind and Visually Impaired, recieve training, and pursue my graduate studies so I can provide for my family. 

Communication has been the big barrier for someone who is almost totally blind and profoundly deaf. Now the gift of hearing has been given back to me, I can return to pursue my dreams.

I need to raise $15,000 to pay for my out of pocket portion of the surgery. These do not come cheap. It cost $75,000 just for one implant. 

Will you help me? Does anyone know of a Private Family Foundation or other charitable group that would wing me to raise these funds? 

I am at a loss and surgery is scheduled for June 27th. 

Lost More Sight But Not Vision

For the past couple of years, I had suspected that I was losing more of my sight. It was confirmed in my recent visit to my ophthalmologist. 

Here is a run down. In 2009, I had roughly 15 degrees in each eye (normal human eye has 120 degrees of vision). That is about 13% of visual field remaining. My right eye had dropped to 5 degrees or 4%, the left eye dropped to 10 degrees or 8% remaining. 

Visual acuity measured at 20/500, by seeing fingers at 3 ft away. 

The definition of legal blindness is having no greater than 20 degrees of visual feild in the better eye or having 20/200 or better with correction in the better eye.

So what does this all mean? 

You just keep on truckin'! Being or going blind does not change my personality or who I am. Certainly I will have to adapt, make some adjustments. Does this mean I become less independant? It depends upon your perspective.

How many of you who have normal vision depend upon yoru car? Does it make you a slave or does it increase yoru independance? What happens when your car doesn't start when you are late for a very important meeting? You are now a slave and dependant upon a dead car. If your car starts, you are independant and free to do wherever the roads take you. 


There are many tools out there that will help me. Many of them are expensive, and to be frank, exploit those with disabilities by their outrageous prices! 


You see, I have a viosn. A vison of continued independance. I will be getting training at the Blind Center. I will be able to obtain the necessary skills to be employed. More importantly, get the skills I need so I can finish school and pursue my Master's degree. (Back when I graduated in 2004, it was taking me 2-3 hours just to read one chapter! Too much on the eyes to keep up with my Grad Level work so I took a leave). Now with my Cochlear Implant, it opens up so many new doors such as breaking down communication barriers and allowing me to utilize digital books, including audio books for Grad School. 


There is always hope. Hope that one day they will find a cure for retinitis pigmentosa, the very eye disease that causes my blindness.
 

Cochlear Implant a SUCCESS!

I wanted to update everyone that my December 23, 2011 surgury for my right ear to be implanted was a HUGE success! I never thought I would anticipate the success of my CI. 

Here is what is happening:

I was activating on January 10, 2012. I only heard environmental sounds and was able to pick things up quickly. I thought I was hearing a vent pushing air out but it turned out to be the fan on the laptop that my audiologist had! She asked me "Can you hear this?" and I told her it sounded like someone rubbing on top of a table. Turns out it was her rubbing her hands (remember, I'm blind so I do not always see things). I was so impressed.


The next appointment cam Feb 10th in w hich was the first time I had a hearing test to see what exactly I was hearing. Here are the results:


-20-30db range (20 or less is normal hearing!)
-I understdood 28% of single syllable words (before implantation 10%). 
-I understood 89% of sentences in a quiet environment (before nothing)
-I understood 42% of sentences in a noisy background (before nothing). 


I had a very emotional and poignant moment in Feb when I went home to visit my parents. I sat at the piano, something I have not done for nearly 20 years. I wanted to see how it sounded to me. As I started to play scales that I could remember, I realized that I did indeed hear each note distinctly. So I proceeded to start playing a hymn that I used to play quite often. I quickly found out that I was making mistakes, not hitting the right notes. The next step was to test for "playing by ear" and see if I can correct my mistakes. I was able to do this! Once I realized that I was able to quickly correct for mistaken notes, tears started flowing down my cheeks. Oh what great joy! To know that I can play by ear again, something I have not been able ot do since I was 10 or so. 


I had my 3 month follow up appointment on April 13th. Here is what I was hearing:


-Sentences in quiet environment went up to 93%. Not huge but a very good gain.
-Sentences in a noisy environment, jumpt to 90%! A HUGE improvement over 42%! 
-Single syllable words: Jumpted to 82%! 


I feel so blessed to have such great success and modern technology.