Hello, my name is Sharon Meintzer, and I was diagnosed with Progressive Supranuclear Palsy about two years ago (at age 54), but my symptoms really began at age 50.

I had started writing very small, illegible within one year, and also had started to have trouble getting up from a seated position. My balance was also starting to be affected, and I began to fall a lot. I was diagnosed with Parkinson’s disease, which is what happens with most people that start out having my symptoms.

However, when I began to lose my voice very early, I sought out another physician, and I found a very good movement disorder doctor at the University of Colorado of Health Sciences Center by the name of Dr. Deborah Hall, who gave me my current diagnosis. Meanwhile my voice kept getting worse and worse, which really hindered me at my job, because I was a nurse. I was responsible for giving people information about their upcoming surgeries, and I was also responsible for instructing all of our new OB patients about being pregnant (i.e., what meds they can take safely, what foods they should eat and what they should avoid, etc.). It was getting harder and harder. Then the doctor that I had worked for retired and I decided that since I couldn’t write or speak anymore, I must retire also.  :-(
   
One of the things that bother me most about this disease is the fact that it is very difficult to communicate with people! Many of them either write their responses to my questions (which I have typed up ahead of time) on a piece of paper, thinking that I am deaf I guess... or they ask me to write down what I am trying to tell them. Either way it is very frustrating for me.
   
First my husband and I tried to get a Dynawrite by our insurance company, this was before we found an Echovoice machine.  The insurance company turned us down, saying that they thought that I should have had "progressive Parkinson’s disease" in order to qualify for one!
   
Then Jill, a very sweet speech therapist, who then worked at Assistive Technologies in Denver, showed my husband and me an Echovoice, which really seemed to work for us! So we forgot about our insurance company, other than to send in the bill, to try to get them to pay for it. They never responded to us.
   
So my very sweet husband decided to buy me an Echovoice, which is a little voice amplification system about the size of a digital camera, and that has a microphone, which goes over your head and rests right in front of your mouth. It amplifies everything that you say. He got that for me Christmas of 2004, but by the time this last Christmas came around he could no longer hear me with it. In fact, sometimes when I try to whisper in his ear, he still can’t hear me. I know that it’s very frustrating for him and me! It is very humiliating for me, and it makes me very sad when I can’t even say the simplest of things to someone.

The Echovoice worked for about six months, at which time my voice started to get worse, so once again we appealed to our insurance company, and again they turned us down, saying that we had not appealed their previous decision within the 180 days, which they required, so no they would not cover it!
  
About this time, I received a new pamphlet from the Assistive Technologies people in Denver, which showed a very attractive speech machine on the front of the cover.  I emailed the very last lady with whom I had contact at Assistive Technologies. Meegan was her name, and it seemed that she had moved, but was still answering her emails. Then she gave me Jill’s email address, and we got in touch with her! When Jill emailed me, I asked her what the communication device was on the cover of the pamphlet, and she told me the name of that instrument was Vanguard Plus.
  
Jill was no longer employed by Assistive Technologies either, but was in private practice. Then she told me about a promotion that the company that made the Vanguard was having for their 40th anniversary and to celebrate the event they were giving away 40 communication devices!
  
Jill arranged for Teresa Parrill  (who turned out to be wonderful also), PRC Regional Consultant, to visit me.  Teresa brought two machines, the Vanguard Plus and the smaller model, the Vantage, which is the one that suits me best!
 
 Jill offered to apply for one of them for me and guess what? We won! Now I’m going to be able to communicate with everyone!  You just can’t possibly know how much this means to me!
 
I just want to thank Jill, who really went way out of her way for me; Teresa, the company rep; and to the makers of the Vantage and Vanguard Plus, the Prentke Romich Company for their kindness and generosity!