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
>
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