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Dear Listfriends, Please, please don't take this the wrong way. I just want to thank Joy & Bob for posting this ray of hope and never give up attitude for us. There has also been a very realistic thread of "telling it like it is" recently. I believe that this is also very important. The world-- the media--the government needs to know "how it really is" for us whether we are young or older. I have found myself thinking more about my future because of this recent thread. It is hard to remain positive. However, in the past, I have had many opportunities to adapt to situations in my life, so when I see one of us find a new way to cope with this frustrating, life-limiting disease, I have some renewed positive thoughts. Bob and Joy--I am so happy for you. Sounds like a big miracle to me. Sue 54/dx51/symptoms47 At 10:39 PM 6/14/2001 +0800, you wrote: >Dear Friends > >Those of you who know [of] my husband Bob, who is now into his eleventh >(diagnosed) year with PD, may know that his set of symptoms are slightly >unusual. > >He is fortunate in many ways: for example, he takes a daily total of 1800 >mgm of levodopa and he has no dyskinesias at all. He walks well and can >swallow and eat well! These are certainly things to be thankful for. > >I have written recently about his falling backwards, and what we have done >about it (helmet and elbow guards and home design). > >His greatest misfortune is that, over the years, he has been losing his >ability to speak. He has tried and failed with a pacing board; he has tried >pacing himself by tapping on his knee. He has tried to "sing" his words >and this worked for some time. (He can still sing, especially if it is a >song/hymn he knows well.) Later he tried and failed LSVT four times, but >his festination and stuttering was just too overwhelming, so for the last >two years he has been largely reliant on the LiteWriter - a text to voice >machine, which has given him a certain amount of freedom. He was able to >write a long speech for a friend's funeral and to make a speech at our >son's wedding. But the "voice" on the LiteWriter is not his own and is - >especially for the first time hearing it - a little mechanical and >therefore hard to understand. If he tries to use it on the phone, most >people will put the phone down on him unless I rush in to explain what is >happening. > >On top of this, since his vertical gaze has been affected, he finds it hard >to focus down to see the keyboard of both the LiteWriter and the computer. > >Recently we found an optometerist who really understands the problems of PD >& PSP, and his "watery" (but dry and therefore scratched) red eyes are >being treated (this will help the blepharospasm). He is soon to get a pair >of prism glasses which will correct his poor downwardl gaze and therefore >assist him with his reading, eating and keyboard work. Miracle one. > >We have been feeling like we have been on an "uphill" curve but nothing has >given us so much satisfaction and happiness as yesterday, when we visited >his speech pathologist (SP). She has been "tracking" Bob's downhill slide >with his speech ever since he was diagnosed and knows that he had a >beautiful melodious voice and used it to great effect in all that he did >(as a teacher and a leader in our state PD Association). > >Prompted by our Parkinson's Nurse Specialist, she called recently and said, >"I have something new to try out with Bob." > >So yesterday she presented Bob with a single sheet of paper on which she >had printed out the letters of the alphabet in a very large and bold font. >Then she taught him the technique (and the rules). When he wants to speak, >he has to find and point at the first letter of the word, then say the >word. He repeats the process.. placing his finger on the letter... then >saying the word. The visual cue combined with the pacing which he is forced >to do as he searches for the next letter slows him down. The trigger of >finding the first letter works (I think) by "anticipating" the whole word. >If he breaks the rules and tries to run on without finding, pointing THEN >speaking, the system soon breaks down and he is unintelligbly fast again. >If he sticks to the rules, he can say quite long sentences. Miracle two. > >Our friends who have heard him today, have been visibly "moved" to hear his >own voice coming over so loud and clear. And for the first time he left >his treasured LiteWriter at home, instead packing a piece of paper. > >As suggested by the SP, we have now produced the letters on the page in the >formation of the "qwerty" keyboard and the pace of his speech quickened or >rather "eased" considerably since he - although only a two finger typist - >is very familiar with the keyboard. (This has removed the stress of finding >the letters) > >We have run off sets of the letters in all sizes and shapes. These we will >laminate and he can carry them in pockets, or leave them about the house to >use wherever he is. One we made small enough for his wallet. We are even >thinking of getting an engraved bracelet which can be worn like a watch, or >a necklace which he can hold up in front of himself and point at. (His near >vision is good). > >Well, obviously the motto is never give up! > >Bob and I are very grateful for the many dedicated health professionals who >help us in the battle with PD. We hope this information will be useful to >others. > >Joy & Bob Graham > >---------------------------------------------------------------------- >To sign-off Parkinsn send a message to: mailto:[log in to unmask] >In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn