Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 ANY DAY - I CAN BE OUT IN THE WORLD... IS A NICE DAY. GOT TO GO TO A WORSHIP MEETING. THEN TO A WEDDING. (SPENT TIME IN THE RESTROOM - EXCESSIVE - UNLPANNED - DURING THE RECEPTION) THEN ON TO A BIBLE STUDY. BACK HOME NOW. FULL DAY. PRODUCTIVE DAY. EVEN GOT A REPORT WRITTEN FOR WORK IN AMONGST IT ALL. (AND SPENT WHAT MUST - LITERALLY - HAVE BEEN 1 1/2 HOURS ON THE PHONE WITH MY BOSS - WHICH WAS - LARGELY UNPRODUCTIVE TIME :-) SO YES, IN SPITE OF HEALTH... I HAD A NICE DAY. THANKS FOR ASKING. PAUL OH YEAH... SEEMS WE BOTH OFTEN END UP POSTING LATE, HUH? > Hi : > Dr. Ray lives in Vegas. I want to meet with him and his wife when we were up > there a few weeks ago, but I didn't get his number on time to call him. > Also it ended up that he was in the hospital at the same time I was there. > Next time I'll look him up. > > Did you have a nice day? I hope so.. > > Take Care > Vera > > > > WHERE ARE YOU ANYWAY? I GATHER FROM AN EARLIER POST, YOU MIGHT BE IN > CA? IF YOU TOLD ME BEFORE, I FORGOT - WHICH I SEEM TO BE DOING A LOT > OF LATELY :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 , Charlotte went to Disney World in 1998 which was three years after learning it was MSA and 8 years after her dx of PD. It was also three years after she became tied to a wheelchair. Call ahead and see what they have to offer in the way of handicap accomodations, you may be surprised ) AND you and your party get to go to the front of the line on most rides). ) No you can't have a party of 20 ) Some motels/hotels have good handicap accomodations - we stayed in the Polynesian which even had a shower which we could roll the w/c into and I could transfer Charlotte directly to a builtin bench, it was excellent - wish I could have had it at home. Since we were in the park, we could go back to the room anytime we wanted (all buses had w/c lifts) and we would go out from 8 AM to 11 AM and back to the room for several hours befor going out again from about 6 to 9 PM. Make SURE you keep hydrated! We took water and bought lots of tea, etc (decafe). Charlotte had a hat and I wiped her often with a washcloth we kept with us. My grandson, daughter and son-in-law helped us out, so everyone had a ball (they stayed the whole day and we met for dinner). Take care, Bill Werre > > > Date: 2002/07/22 Mon AM 01:47:05 CDT > To: shydrager > Subject: NICE DAY > > ANY DAY - I CAN BE OUT IN THE WORLD... > > IS A NICE DAY. > > GOT TO GO TO A WORSHIP MEETING. > > THEN TO A WEDDING. > > (SPENT TIME IN THE RESTROOM - EXCESSIVE - UNLPANNED - DURING THE > RECEPTION) > > THEN ON TO A BIBLE STUDY. > > BACK HOME NOW. > > FULL DAY. > > PRODUCTIVE DAY. > > EVEN GOT A REPORT WRITTEN FOR WORK IN AMONGST IT ALL. (AND SPENT WHAT > MUST - LITERALLY - HAVE BEEN 1 1/2 HOURS ON THE PHONE WITH MY BOSS - > WHICH WAS - LARGELY UNPRODUCTIVE TIME :-) > > SO YES, IN SPITE OF HEALTH... > > I HAD A NICE DAY. > > THANKS FOR ASKING. > > PAUL > > OH YEAH... SEEMS WE BOTH OFTEN END UP POSTING LATE, HUH? > > > > Hi : > > Dr. Ray lives in Vegas. I want to meet with him and his wife when > we were up > > there a few weeks ago, but I didn't get his number on time to > call him. > > Also it ended up that he was in the hospital at the same time I was > there. > > Next time I'll look him up. > > > > Did you have a nice day? I hope so.. > > > > Take Care > > Vera > > > > > > > > WHERE ARE YOU ANYWAY? I GATHER FROM AN EARLIER POST, YOU MIGHT BE > IN > > CA? IF YOU TOLD ME BEFORE, I FORGOT - WHICH I SEEM TO BE DOING A > LOT > > OF LATELY :-) > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 , Attached (hopefully) is a picture of my granson Shane (5 at the time), Charlotte and me at Disney World in May, 1998. She was dxed as PD in 1990 and MSA in 1995 (at that time she was completely w/c bound. Take care, Bill Werre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 : Bill is right Disney world and Disneyland go out of there way for people that are handicap. My daughter worked at Disneyland for awhile. They want them to make sure that any help you need ,you get. Also if your in a w/c they are suppose to get down and look you in the face to ask what you need. They have ramps to get on the tram with a w/c. I've enclose a link that you can read Disneyland Resort plus Disney.com's Guests with Disabilities . Take care Vera Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 HI BILL. THANKS FOR INPUT. NOT DOING WELL TONIGHT. BODY SAYS SOMETHING IS WRONG. BETTER LISTEN - PERHAPS I'LL BE BETTER IN A.M. HAD OVERLOOKED THIS POST. FORGOT I HAD WRITTEN IT. :-) GUESS I'D BETTER JUST CHECK THEM ALL. NEVER KNOW WHAT I MIGHT HAVE WRITTEN. GOING TO SEND OUT A COUPLE MORE POSTS THAT I WROTE EARLIER TODAY ON MSWORD. THANKS TO ALL WHO READ AND RESPOND. THIS IS A LIFELINE - IN EVERY SENSE. SINCERELY, PAUL > > > Hi : > > > Dr. Ray lives in Vegas. I want to meet with him and his wife when > > we were up > > > there a few weeks ago, but I didn't get his number on time to > > call him. > > > Also it ended up that he was in the hospital at the same time I was > > there. > > > Next time I'll look him up. > > > > > > Did you have a nice day? I hope so.. > > > > > > Take Care > > > Vera > > > > > > > > > > > > WHERE ARE YOU ANYWAY? I GATHER FROM AN EARLIER POST, YOU MIGHT BE > > IN > > > CA? IF YOU TOLD ME BEFORE, I FORGOT - WHICH I SEEM TO BE DOING A > > LOT > > > OF LATELY :-) > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 THANKS BILL. PIC CAME OUT GOOD. NOW I HAVE A FACE TO GO WITH THE EMAIL. GUESS THAT GRANDSON IS NOT NEARLY SO SMALL ANYMORE? WAS CHARLOTTE A FAN OF FOXES? WE HAVE SOME AROUND HERE. RED ONES LIKE ON HER SHIRT IN THE PIC. TODAY HAS NOT BEEN A 'NICE DAY'. I'M FRIED. FEVER, ACHY - FEEL LIKE I HAVE THE FLU - WORSE THAN 'NORMAL', SLEPT MOST OF DAY. (TAKING YOUR RECOMMENDATION OF REST A BIT TOO LIBERALLY?) GOING BACK TO BED NOW. THIS IS SOOOO UNLIKE ME. PAUL > , > > Attached (hopefully) is a picture of my granson Shane (5 at the time), Charlotte and me at Disney World in May, 1998. She was dxed as PD in 1990 and MSA in 1995 (at that time she was completely w/c bound. > > Take care, Bill Werre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 , Charlotte liked animals, period. Her favorite was owls however. I have owl paintings, pictures and knick knacks everywhere. Remember that with MSA your diagnoses is usually either " possible MSA " or " probable MSA " . Charlotte's " actual " diagnoses was gait difficulty (718.70), ataxia, dystonia, extra-pyramidal disorder, dysphagia, OH, etc. Then under " other diagnosis " it had OPCA. NIH said (in 1995) after about 14 doctors looked at her, that their concenus was MSA. She did not want an autopsy or her brain " fooled with " , so will never know positively. But she did fit the classic MSA profile. Take care, Bill Werre =========================================== > > > Date: 2002/07/23 Tue AM 12:26:19 CDT> To: shydrager > Subject: Re: NICE DAY > > THANKS BILL. > > PIC CAME OUT GOOD. > > NOW I HAVE A FACE TO GO WITH THE EMAIL. > > GUESS THAT GRANDSON IS NOT NEARLY SO SMALL ANYMORE? > > WAS CHARLOTTE A FAN OF FOXES? WE HAVE SOME AROUND HERE. RED ONES > LIKE ON HER SHIRT IN THE PIC. > > TODAY HAS NOT BEEN A 'NICE DAY'. > > I'M FRIED. > > FEVER, ACHY - FEEL LIKE I HAVE THE FLU - WORSE THAN 'NORMAL', SLEPT > MOST OF DAY. (TAKING YOUR RECOMMENDATION OF REST A BIT TOO > LIBERALLY?) GOING BACK TO BED NOW. > > THIS IS SOOOO UNLIKE ME. > > PAUL > > > > > , > > > > Attached (hopefully) is a picture of my granson Shane (5 at the > time), Charlotte and me at Disney World in May, 1998. She was dxed > as PD in 1990 and MSA in 1995 (at that time she was completely w/c > bound. > > > > Take care, Bill Werre> > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 THANKS VERA. I SEE YOU WERE UP YOUR USUAL HOURS LAST NIGHT :-) BUT THEN AGAIN, I GUESS CALIFORNIA IS A COUPLE OF HOURS BEHIND US... ANYWAY, THANKS FOR THE LINKS. I'M NOT W/C BOUND YET. TOO MUCH MORE TIME LIKE THIS WEEKEND THOUGH, AND I'M LIKELY TO AT LEAST SEE ABOUT GETTING A WALKER OR CANE - CANE WOULD BE MUCH LESS HUMBLING - BUT I'M NOT SURE IT WOULD DO THE TRICK. IF NOT FOR THE SHEER GRACE OF GOD, I WOULD HAVE FALLEN, AND TAKEN A FEW WITH ME THIS PAST WEEKEND :-) THE " TAKING SOMEONE WITH ME " IS PROBABLY WHAT WAS MOST EYE-OPENING TO ME, AS ONE WAS IN FAR WORSE CONDITION THAN I - RECOVERING FROM A STROKE. ANYWAY, GOOD INFO TO KNOW. FROM WHAT I'VE COME TO LEARN SO FAR... ALL CURSES ASSOCIATED WITH THINGS - DO HAVE THEIR BLESSINGS AS WELL (LIKE GETTING TO GO TO THE FRONT OF LINES - HAVEN'T EXPERIENCED THAT ONE YET :-) CATCH YA LATER. PAUL > : > Bill is right Disney world and Disneyland go out of there way for people that > are handicap. My daughter worked at Disneyland for awhile. They want them to > make sure that any help you need ,you get. Also if your in a w/c they are > suppose to get down and look you in the face to ask what you need. They have > ramps to get on the tram with a w/c. I've enclose a link that you can read http://disney.go.com/vacations/websites/disabilities/dl/general. html " > > Dhttp://disney.go.com/vacations/websites/disabilities/dl/hotels.h tml " >isneyland Resort plus http://disney.go.com/vacations/websites/disabilities/index.html " >Disney.com's Guests with Disabilities . > > Take care Vera Quote Link to comment Share on other sites More sharing options...
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