When Pam’s voice finally reached a point where even the closest family members were unable to understand her, we had to resort to repeating the alphabet to her and she would blink when we reached the correct letter. Although this works, it is extremely labor intensive and takes a tremendous amount of time, making “real” dialogue virtually impossible. This was particularly frustrating and depressing for Pam in that not only was her body making a prisoner of her, but not being able to communicate in real time was also isolating her from those she loved. One of Pam’s sister’s came across the solution, Voices for Joanie (VFJ) and the “lending closet” of communication equipment they have available. This was a godsend! Not only did VFJ help us to determine what was available in communications equipment, but they provided a loaner system that had Pam communicating in full sentences and a synthesized voice within a couple of days.
It is impossible to communicate this difference this made in Pam’s life. From being an isolated observer of the world around her, she once again was able to interface with family, friends and care givers, in almost real time. This has allowed her to feel more like a member of the family again, rather than a burden (a view only she shares, but one that truly impacts the quality of her life and emotional health). From the families perspective, this has been a wonderful gift, until someone has actually witnessed the pain and desperation in the face of someone trying to tell those around them that they are in pain, cold, hungry, etc and unable to do so, you really can’t get a sense of how important communication really is. It made those around Pam feel so useless and impotent.
Pam’s first system, worked off of a reflective dot mounted to her glasses that was tracked by the computer and worked like a curser on a mouse. This worked well while she still had fairly good control of her neck and head movements. As the disease has progressed and she has gotten progressively weaker, she can no longer move the curser across the entire screen, nor control it well enough for the dwell clicker to select individual letters. This has forced us to look at more sophisticated “eye gaze” systems that allows the user to use their eyes and a series of blinks to create sentences.
Although these systems are ready available, they are extremely expensive, ranging between $7000 and $20,000.
Dear Voice for Joanie, Let me bring you up to date on what I have been doing with the Eye Response program. I am getting faster and more familiar with all the communication tools. I am constantly using the email capabilities. I have been building my email address book and have made contact with some of my old friends. I have been talking to some of my friends from growing up on Long Island and some of my friends from work. It is great to be able to talk to people without going through a translater. Once again, I cannot thank you enough for the chance to have some independence and freedom to speak for myself. I would like to wish you Seasons Greetings during this Christmas Holiday Season. I would also like to wish you a very happy New Year. Thank you for the opportunity to be able to send this email. Have a great Holiday Season.
WE CANNOT THANK YOU ENOUGH for your amazing gift and we are so THANKFUL for your IPAD donation Don enjoyed using it immensely. With the warmest of regards, Kim
I can’t help but think of you every time I use the eye scan. I never want to take this computer for granted. I don’t have words to express my gratitude and appreciation for you and all that you have done for me…THANK YOU! I often have thought what it would be like without the ability to communicate, it would be like a bird with no wings trying to fly. I have done so much with this machine, I have written letters to my family, emails to my friends, written a few poems and even wrote 3 songs. As bad as living motionless is, I still have my mind and your ministry has enabled me to use it…THANK YOU!!
Thanks again, you will never know just how much your ministry has softened the “blow” from this affection that I live with every day. David
Shirley is an absolute God-send! This system has done nothing short of save my life. I know that sounds a bit melodramatic, but consider that at least 10 times a day, I would want to jump out of my chair and run screaming down my driveway! This system allows me to keep my sanity. Having the ease of ERICA has enabled me to escape from the reality of my disease.. . even if only for as long as I’m on it. It allows me to communicate the function I miss the most, it allows me to stay connected to the world, and it has enabled me to finish my manuscript. Gosh, it came along just when I began to experience real despair as pushing around my wireless mouse was becoming too big a chore for anything longer than a couple of sentences.
I thank God for Shirley’s dedication. It’s rare to find such selflessness in people these days.
Thanks for your interest in her story. It needs to be told. Also, please mention in your article that the work of Voice For Joanie exists totally on the generosity of individual donors. Shirley spends a good deal of her time soliciting funds from corporations, organizations, etc. to keep her work going, so please pass the word.
She sure gets a lot of mileage out of that little five-foot frame of hers!
Once again the time has come, to count my blessings, understand and express my appreciation to the people that are concerned with my well-being.
You and Voice for Joanie have been most generous and kind to me since my diagnosis of ALS.
In spite of my increasing physical weakness and fatigue caused by my disease I am very fortunate to have the use of the, X-10 Home Automation interface which was loaned to me by Voice for Joanie.
My sense of security, safety and independence along with a feeling of comfort have all been reinforced by having this system. The system has also helped me tremendously to keep my mind active and keeps my life productive.
I remain thankful to you Shirley and Voice for Joanie for your help and generosity.
THANK YOU SINCERELY,
My letter is long overdue and my apologies for not writing sooner. I will begin by stating that your friend, Joan , must have been very special and ALS has certainly found a friend in you. The hours that you have put in over the years is highly commendable and must be rewarding to you.
Do you remember the first time that we met? I was unsure about this computer and I could still talk a little. You always think that you sound better than you do because I can hear my words in my head just as clearly as you do but I can’t utter one intelligible word. When I tried to talk, Al will say, “Do you really know what you just said?” I laugh because of course I do but I cry because he doesn’t. I remember Al’s question “You mean every time Gail wants to talk I have to wheel her up to the computer?” And I you, told him, “It depends on how badly she wants to talk!” Well I didn’t want to talk, then!
I fooled with the computer for a few days and found it difficult. It sat for three weeks but I felt guilty. Then I saw a video on Stephen Hawkin “A Brief History of Time. ” When I saw my new computer in the video and how fast he was using it, I was inspired! I realized how it could be done and if he could do it, then I could do it! I rose to the challenge!
I now sit at my computer an average of 35 hours per week! I absolutely love it. I can’t utter one intelligible word so I find great solace in knowing that I have some way to communicate. Without my computer I would probably go crazy because I have the insatiable desire to be understood. My field was clinical psychology so talking was my thing. I loved speaking on the telephone and I was spokesman for a large family.
What do I do on my computer besides communicate with family? I run my household from shopping lists to planning for vacations and holidays. I teach English to my nurse who is from Poland. I write letters, poems and articles. I am writing a book. I have so much in the memory and I have added over one thousand vocabulary words. I have freedom and creativity with this computer. I use it to converse with my family and guests. I even call family and friends and play happy birthday! I’m having fun.
If you ever wonder what good you were doing just read my letter over and over and over again! I couldn’t live without you Shirley.
Love and peace to you
Love and peace to you
To whom it may concern:
Hi, you do not know me but I know you. I was recently diagnosed with A.L.S. , Lou Gehrig disease. Since most cases are not the same, as to the progression of the disease, mine is called Bulbar A.L.S. , which starts in the region at the top of my spinal cord, which has left me without the ability to speak, as my tongue no longer will let me shape my words and push the food around, so that I may swallow.
With my arms and legs still functional and my ability to think okay, and with no pain you might agree that it could be a lot worse, and you would be right. No, cure has yet been found but they have made some progress. Thus a continuing feeling of despair and a greater one of frustration.
My life has not been without obstacles but, who is perfect, no one although we sometimes are not willing to admit this. Needless to say I felt alone at times and feeling sorry for myself. For me the delight has been my family and my faith in God.
All my adult life I made my living in sales. As a salesman I needed to sell myself, and the product, and the company. In conversation I was able to convey my thoughts and knowledge of the products to the customer and make the sale. Not being able to do this anymore and having to retire on disability. Not being able to work left my cash flow will real low, and my expenses still high. A friend of mine called me to tell me about an article in one of the computer magazines. He knew the problems I was having and it was just what I needed. Voice for Joanie was the organization name. He called and spoke to Shirley Fredlund. Shirley called me to tell me what she could offer me to make my life bearable and to once again convey my thoughts and my needs to others. We made an appointment, what can I say, Voice for Joanie has opened the door that was closed.
I can now talk to my friends, let my family know that I am alright and say the things that I need and want to say, without feeling that they do not understand me. Not being able to afford the equipment, computer, voice synthesizer (multi Voice ), a printer, telephone amplifier and the software to run it, Voice for Joanie has made a profound change in my life. I hope after reading this letter you will understand what you have contributed to me and others like me, through Voice for Joanie, re: Shirley Fredlund
My sincere thanks and my hope that you will continue to help others like myself who are unable to communicate and are shut off from others.
My best to you and your organization