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  Loss of speech won't silence mom with ALS
Posted October 28, 2002 in PALS Profiles

Years ago, during conversations with friends, Joanne Barrie casually mentioned how dreadful it would be to suffer from Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease, a degenerative syndrome that robs sufferers of physical functions.

Tragically, and ironically, Barrie was diagnosed with ALS two years ago.

''I was aware of the disease, and that our former New York Senator Jacob Javitts died from it, but I thought it was extremely rare,'' said Barrie, who lives with her husband, David, in Saratoga Springs. ''I had no idea how many people were affected by the disease,'' she continued in an e-mail interview because she cannot speak anymore.

Joanne and David Barrie have three daughters, Beth, Laura and Nan, and two granddaughters, Lauren and Sarah.

In November 2000, Barrie noticed a slight slurring of her speech, as well as some fatigue.

''I thought it was a sinus problem, and finally went to see an allergist in the spring,'' said Barrie, now 58. ''He couldn't help, but sent me to another ENT specialist, who eventually referred me to a neurologist. After some testing, he said he thought I might have ALS.''

Devastated by the news, Barrie sought a second opinion from another medical professional, which brought the same grim diagnosis. But surrounded by her loving family and the support of friends, Barrie refused to give in to despair.

''Finally, I pulled myself together and said, 'Joanne, just take it one day at a time,''' Barrie said. ''Look at each day as a gift. I get up each day and thank God. I can still walk, and use my arms and, most importantly, breathe. I do a lot of praying during the day.''

Although she is only in stage 1 of the disease, Barrie has lost her ability to speak clearly, and now uses the computer to write to her friends, and a speech board to communicate with people in person. When Barrie types in words, the speech board says them out loud.

''Kids get a kick out of the talking speech board,'' said Barrie, a former second-grade teacher. ''But one of my biggest heartaches is that I can't talk to my grandchildren and play pretend with them. I was always a verbal person, so this is tough.''

Barrie's loss of speech has had an effect on the entire family.

''We used to make fun of my mother's singing voice, but now I would give anything to hear my mother sing,'' said Laura Angley, Barrie's daughter. ''My mom is a very smart lady. People who are uneducated about ALS think she isn't smart because she has lost her speech. When she uses her speech board to tell people that she's speech impaired, they shout at her as if she were hearing impaired.''

Barrie's doctors at St. Peter's Hospital continue to be encouraging, telling her she is beating the odds. But soon she will have a feeding tube put in, because it has become a struggle to eat, and she has noticed some weakness in her arms.

''I don't have any other muscle involvement yet, but my arms do feel heavy, which is the first sign,'' Barrie said. ''I tell my doctors I have a lot of people praying for me, and they tell me that may be more effective than all the drugs I'm taking. Still, it's time to find a cure or a treatment, so we can have a fighting chance.''

Barrie's family hopes the entire community will become involved with the Walk to Strike Out ALS, not just for their mother's sake, but for the thousands of families touched by the disease.

''My mother is one of the bravest and strongest people I know,'' Angley said. ''I could only hope to be half the mom that she has been to me and my two sisters.''

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