Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript 03-08-2003

Topic:  Open Forum/General Discussion

Host: Susanne


Chat Participants:



susannew -- Hi Butch! How are you?
butch -- Good morning susanne--Glad to see you are back from your voyage. How was it? One of the greatest times you have ever had. Right?
butch -- I am doing werll. Hoping for warmer weather. Spring just two weeks away. Comone Spring!!!!
susannew -- Sorry, multi-tasking, preparing for upcoming board meeting following chat and writing out my personal bills! UGG!
susannew -- The trip was good. Was nice to have someone else cook all meals and clean for 10 days! The people on the islands were very warm and friendly. The water was clear and warm! Beaches were beautiful white coral sand! Good snorkeling, what else would you want? For pictures, go to
susannew -- We're already getting all our blooms. March is our best month for green hills, blooming yard! Its very pretty in March here.
susannew -- I've had tulips blooming since early February!
butch -- Sounds super. Hope you had a well deserved rest.
butch -- It is not fair. you get flowers--We get snow.
susannew -- I wish I could say the cruise was restful and relaxing... but it wasn't! Dancing by night, islands by day.. Had to explore every inch too! Terry and my vacations are always based on see as much as you can see in the small time alloted!
susannew -- Of course leading up to the vacation I was going full-steam ahead to get all my work done for my "real" job, the KDA, and our house... then you get back and get to catch up with all of it again!!!
susannew -- I'm just starting to dig out and see the light of day!
butch -- That is why you should take two weeks for the vacation and one week to recoup from the vacation.
susannew -- How is your family?
susannew -- I like your idea! I needed a week off to catch up and relax!
butch -- Great! I think we have had enough snow for awhile. We are supposed to get one more sn0ow storm next friday.
susannew -- I can't imagine living in the snow. It would really slow me down! : ) I'm thin skinned being from Southern Cal all my life!
susannew -- John Coakley was telling us they were getting quite a blizzard not too long ago in Maryland.
butch -- How was it traveling with Terry? Did you have a handicap room?
butch -- Were the isles wheel chair accessible?
susannew -- Yes, we had a handicapped room. Terry took some pictures of it so others could see. It had a roll-in shower, lots of floor space to maneuver (well, as much as you really needed, more than general cabins).
susannew -- The ships decks and halls were all quite wide - probably 12 feet?
susannew -- It was easy for Terry and I to get around because of the elevators to almost all floors - there were stairs to the 15th and 16th decks - but there really wasn't a need to go up there - just more deck chairs.
susannew -- The only tough part was getting in and out of the external doors to the decks. They had a 10" lip, like a speed bump in the door base. I think to keep water, if any got on deck from coming inside.
susannew -- To get into port, Terry had to get up out of the wheelchair to walk down, or up stairs to get to the dock. I think only one port had a ramp, the others we had to use stairs. The crew carried his manual wheelchair down to the dock for us and back up to the ship. If we'd brought the electric chair, I'm not sure if it could have gotten on dock - they couldn't carry that down stairs, it weighs too much.
butch -- I guess they had elevators to get you from deck to deck. Mary Lou and I were on a cruise and like you, we had very little sleep the first two days. Dancing till two. Getting up to see the sunrise by five. What a great time.
susannew -- Hmmm, I can't remember if in town there were cutouts... I do remember Terry having to get up to cross the street once, but we didn't spend much time in town shopping. We were on a quest to get photographs or snorkel. So we were taking taxi's, or rental cars, whereever we wanted to go. But I think overall, it seemed pretty accessible when compared to old European towns. History dates back to the 1700's in some places, and for that, accessibility of course declines.
chuck -- {welcome chuck}
susannew -- Terry was in bed by 8:00 usually - then I'd go hang out at the disco where I'd made friends.
susannew -- Good morning Anna Lea and Chuck!
billeric -- {welcome billeric}
susannew -- A couple nights Terry pushed himself to stay up late and went with us to the Disco to sing Karaoke!
susannew -- Good morning Bill!
butch -- Good morning Anna Lea and Chuck. How ids the snow in w. Virginia?
butch -- Good morning Bill. How are you?
chuck -- Melting very slowly. It was so deep, it will take more than several days of warm weather to get rid of.
billeric -- Mornin'Susanne. The tax man cometh today so I have been scratching through the stuff getting ready for him. Hope all is well with you folks.
susannew -- Today's topic was wives chat - Unfortunately, when Terry cut and paste and sent this weeks reminder, he forgot to change it... we'll have to plan for another date for wives' chat. TOday, we'll turn it into a general chat.
susannew -- I got all our personal taxes done before vacation - now its time to do the KDA's!
susannew -- Why did I put an ! after doing the KDA's taxes??? Its not that fun!
susannew -- We actually have snow in our local mountains - does that count? The snow level fell to 2,000 feet a couple weeks ago and you can still see bits of it!
billeric -- Doing o.k. Butch. Always a few things differnt every now and then. But at least we are up and taking nourishment.
susannew -- Bill: Are you back in Minnesota now?
butch -- We don't have to look to the mountains. All we have to do is look where we know our grass is. We still have about a foot of snow on the ground.
susannew -- Butch, when do you get to see your grass again?
billeric -- I found a web site called that some of you folks may be interested in. People rate treatments for such things as lupus, arthritis etc. I found it really interesting. Perhaps one day KD will be on it.
johnm -- {welcome johnm}
butch -- Hey Anna Lea--Lets get together and send some of our snow to Susanne.
susannew -- Good morning John!
billeric -- Still in Phoenix, Susanne. We will stay here till the first of May.
susannew -- I'll build a snow man and it will last at least 5 minutes, I'm sure!
toddrallen -- {welcome toddrallen}
susannew -- My uncle did that once for Christmas. They brought back a bunch of snow in the back of their pickup and brought it to my grandmother's house. My cousin's and I (we were kids!) put together a snow man - he lasted 2 days... but after the first, you really didn't know what he was!
susannew -- Good morning Todd!
toddrallen -- hi all!
chuck -- Will she buy it or are we donating??? Either way I would like to get rid of!!! We can see just a few spots of grass now.....not much!!!!
billeric -- Mornin' Todd
susannew -- Bill: So you are enjoying the same weather we are! Blue skies and sunny this morning... Our weathermen on the news have it so tough, don't they!
susannew -- Is it cold in CHicago Todd?
toddrallen -- It's 38f but supposed to hit 45!
billeric -- Should be in the 80's in Phoenix this weekend.
toddrallen -- Should melt some of the snow...
susannew -- Wow! A heat wave!
butch -- Johb M--How are you doing today? Hope you stayed well since our last chat.
butch -- Should be John.
toddrallen -- I'm going cycling today, haven't been able to for awhile, we've been in the teens for too long.
butch -- My fingers don't work as well as my brain, and as you know, my brain doesn't work that well either.
johnm -- Butch, doing great. Had a visitor and couldn't get on earlier.
johnm -- Tod, I sure wish I go cycling. I really miss that. I'm too afraid of falling and not being able to get up.
johnm -- We're getting some really NICE weather here in Florida lately.
toddrallen -- I've got a 3 wheeler. A recumbent tricycle, looks sporty and fast, not like your grandma's tricycle..
butch -- Terry sent that we were going to talk about hobbies. I collect coins. I'm so slow that sometimes I collect dust. LOL. What do you all do to make your days?
murf -- {welcome murf}
billeric -- I bought a little 20 inch fold up bike that I can reach the ground at all times with my feet. I feel safe on that but not on the biggger one.
susannew -- Good morning Murray!
johnm -- I guess that would make it possible to cycle again but not the 30 miles that I could ride before this.
susannew -- The last chat was hobbies - but we can talk about anything today!
murf -- Good morning! I stayed up late watching videos of the last conference
murf -- I guess thats a hobbie
susannew -- You got them, great! How were they?
toddrallen -- johnm, you'd be surprised, with steady cycling my legs have actually gotten stronger, it's my hands and upper body that I have to figure out what to do about.
susannew -- Terry's getting into the photography hobbie with me. Something we can do together!
murf -- There great but I still have to sleep
johnm -- When I was cycling my legs never gained any strength at all.
billeric -- Not really Butch. It has hand brakes that work really well. I can reach the ground at all times so it's o.k.
toddrallen -- I bought Sara a digital camera and she loves it, makes photography more fun, no waiting for processing.
johnm -- I guess my only hobbie is my computer. I guess you might say that I am addicted to it.
butch -- We have two guys where I used to work that have between 15,ooo to 20,000 miles on a bicycle. That is alot of peddeling.
murf -- toddrallen - your legs got stronger? I like Johnm got weaker
toddrallen -- johnm, the key for me has been to go slow and steady. A really comfortable full bucket seat allows me to go for hours. We don't have hills which helps too.
billeric -- Hate to leave guys but the tax man is here. Check with you later. Thanks Susanne.
billeric -- {goodbye billeric}
butch -- Since I retited, the sun comes up, the sun goes down, and I am left wondering where the day went.
butch -- So long Bill.
murf -- good luck Bill
susannew -- Terry has a digital camera also - I'm an old 35 mm girl, but I'm starting to think, I need a digital - especially when I take the rolls to be developed after vacation and see the bill!
susannew -- Bye Bill. Thanks for joining today's chat. Good luck on your taxes!
toddrallen -- The digitals just keep getting better and cheaper so holding off until you really want it is a good thing.
butch -- Anna Lea--How is your cabin fever? We are still planning to go to the casino. Are you saving your quarters?
susannew -- The meeting committee has been working diligently on the November Conference. We'll be announcing a venue and dates as soon as we sign a contract with the recommended hotel location!
murf -- There are very good digital cameras out there but if you like the glossy photos we're not there yet
murf -- I have a good digital but Karol has to use a 35mm
susannew -- Murray, we print on premium glossy paper on an Epson 1280 that prints just like lab processed shots! In fact, I sell my shots at art fairs and on the Net.
chuck -- We are saving - certainly can't get out much to spend them. Drop me a line and let's set up a future date - SPRING IS COMING!!!!!
susannew -- Have you seen the Epson color printer?
murf -- maybe I have to get a good printer :-(
susannew -- I knew I liked Karol! We have a lot in common!
susannew -- Married to wild and crazy guys! LOL!!!
murf -- That could be truble LOL
toddrallen -- murf, my legs aren't peak strength much stronger but my endurance is better. I used to get a lead like sensation in my legs rapidly just from standing or walking too much but not anymore.
susannew -- Murray: You will be very happy with the Epson. It prints 4 x 6" from rolls you can buy at Walmart up to 11 x 17" -
susannew -- HOw is Karol doing?
murf -- Doing fine after she got her gallbladder out 2 weeks ago
chuck -- Charlie's hobby at present is learning to use Dragon Naturally Speaking on the computer. It takes a lot of training the computer but he is coming along real good.
toddrallen -- I have an EPSON photo 780 printer. It prints great 8x10 photos from Sara's camera.
murf -- I support the medical industry in Houston
susannew -- I didn't know she was having surgery - Terry just told me he knew - where have I been? Oh ya, busy... Good to hear she is feeling better.
butch -- I didn't know they had Dragon that had a southern draw. LOL
john-c. -- {welcome john-c.}
susannew -- It will be good to see you all again in November! I loved meeting everyone face-to-face after all the emails and chats.
susannew -- Hello Coakley!
murf -- Hi John-c
butch -- Hey Coakley--Where have you been?
john-c. -- still digging in the snow
murf -- John's new hobby is snow!! LOL
butch -- Stay upright. Feet on the ground--Head in the air.
susannew -- Butch: But what if the snow drift is 7 feet?
chuck -- Susanne, it has been so cold here I have been able to walk on top of the snow.....
butch -- Keep head in the air and Butt off the ground.
susannew -- So its like ice pack? Glaciers?
john-c. -- Head in the air is the easy part
murf -- I guess I like a digital photo becuase I can make wallpaper or screen savers on my computer with them
susannew -- And send them to friends via email!
murf -- that too!:-)
chuck -- When I said "I" can walk on top - I meant me, Anna Lea, not Charlie....
butch -- Hi Murf--Glad to hear that Karol is much better since her operation. She deserves a break.
toddrallen -- chuck, does the Speaking program on the computer transcribe speech into text without typing or does it do something else?
murf -- I think we've found whats been bothering her for years
toddrallen -- oops, anna lea, not chuck..
john-c. -- I'm still learning (for the next 12 months) with digital...............I was scared off by the last time I heard that word in the Drs office.
john-c. -- Chuck/Anna Lea -- got the speech recognition: good for you.
murf -- John-c did you just have a medical? LOL
chuck -- Yes, the speaking program transcribe to text as you talk once computer is trained to your voice. Sometimes you have to add to the vocabulary. ie: I had to put my name into the vocabulary.
john-c. -- Murf: you or the gall bladder?
butch -- Be sure to pick a Dr. with small hands. LOL!!
toddrallen -- Does it work well, I've had days where typing is tough because my left hand keeps cramping up..
murf -- Both!! Me probably more
john-c. -- LOL
john-c. -- Todd: I've had it for 6 months and it is only as good as the training you give it. .. in my case it's still in the second grade, but the teacher has been slacking.
johnm -- That speaking software works good for some and not for others.
chuck -- Yes, we are very satisfied, however, you must be patient and talk into the computer a lot to get it trained. I am going to force Charlie in here before too long. He needs to stretch out more....
johnm -- I have to be going. See you all next time.
johnm -- {goodbye johnm}
susannew -- bye johnm
butch -- Welcome back Susanne. I know that you had to work hard BEORE your trip and had to work extra hard to catch since you are back. Thanks from all of us.
murf -- I have VIA VOICE software I don't use. Would anyone like it?
john-c. -- It doesn't understand Baltimorese I pronounce water as "worder", but it will learn your voice & inflections, properly trained.
susannew -- Hi, its me Terry, Susanne is cleaning up the house for guests
butch -- Good bye John M--stay healthy till next chat.
susannew -- We have a KDA Meeting right after this.
murf -- Bye Johnm
toddrallen -- I guess I'll wait then if it has to train me to speak right.
john-c. -- Murf: That's what I have also.....IBM product with excellent tech support from Scotland.
toddrallen -- bye john
john-c. -- Todd - If Murf doesn't want his, you ought to take him up on the offer.
murf -- John-c I never use my copy but willing to give it to someone that might
toddrallen -- what's the topic for the KDA meeting?
john-c. -- Terry is the one who told me about it.
butch -- It doesn't train you. But, you must train it to recognize your voice and pronounciations of every day words.
murf -- Todd - e-mail me at This email address is being protected from spambots. You need JavaScript enabled to view it. and I'll sent it to you
susannew -- Board Meeting
john-c. -- Butch: all OK there?
susannew -- TY Murf
murf -- Susanne 11am my time right?
toddrallen -- murf, ok, I'll give it a shot.
john-c. -- Chuck: you guys OK too?
susannew -- todd e-mail Murf for the software
chuck -- We are A-ok - just tired of winter....
butch -- Yes John, we are doing well. Looking forward to spring.
john-c. -- Todd: Topics will be discussed today at Board meeting.
susannew -- I loved Via Voice until my PC blew up. I never got around to re-installing it
murf -- as an X-Canadian I had to move away from winter LOL
butch -- Hey John...what is your latest story on winter challenges?
toddrallen -- Terry, how are your hands doing these days? Still able to type ok?
john-c. -- Todd (and everyone)--- want to volunteer to be part of the plannibg for the meeting in NOLA (New Orleans, Louisiana)?
butch -- John--how is Mary and your mother-in-law doing. Hope all is well.
susannew -- yes, I can type fine unless I overuse my hands, or if its cold out.
toddrallen -- When is NOLA meeting planned for?
john-c. -- If so, pls send Email to: This email address is being protected from spambots. You need JavaScript enabled to view it.
susannew -- cannot do constant typing though. the fingers give out after about 4 mins of constant typing.
susannew -- NOLA?
toddrallen -- Terry, that's good. I can too, except when I'm tired, then it gets really bad. Have to peck with a single finger..
murf -- New Orleans LA
john-c. -- November 5,6,7 (Wed-Fri)
susannew -- Todd, how is Midway doing I see the stock for them has really taken a bad hit.
susannew -- I hate acyronyms, now I know what meeting you are talking about todd. LOL
toddrallen -- It's doing really bad. We've just shut down our Milpitas office, Corsicana office, and will be shutting down San Diego too. Only our Chicago office is likely to survive, maybe..
susannew -- Sorry to hear that Todd, We will hope for the best.
john-c. -- All is well here too.
toddrallen -- But the game I just finnished is doing super. So even if the company dies I should be fine.
john-c. -- It's hard to "catch up" on this when I come in late.
susannew -- John-c is making some spare cash building igloo's for the neighbors I hear.
murf -- I feel the same way John
susannew -- That's good Todd.
john-c. -- All the neighbors have benefitted from the tractor & snowblower this year. They reciprocate with food.
murf -- Terry- they will be well constructed igloo's
john-c. -- Todd - pls drop a line sometime.
toddrallen -- John, ok, will do. Is your e-mail on the KDA list?
john-c. -- It's supposed to get to 60 today in this area......we'll make it to 45 at our place.
susannew -- 5 Min Warning
murf -- John - does that mean that floods are next? LOL
chuck -- Bye - thanks and we wish all our best....
susannew -- actually more like 2 min
chuck -- {goodbye chuck}
susannew -- Bye Everyone
john-c. -- CANE: Final revisions made last night on Patent forms. Patent will be filed on Thurs 3/13/03.
toddrallen -- ok, bye all.
butch -- John only gives a 1 min warning. So long Anna Lea.
susannew -- {goodbye susannew}
butch -- See ya Todd. Good luck.
john-c. -- Bye all: Stay healthy.
toddrallen -- {goodbye toddrallen}
murf -- Bye Ya'll
murf -- {goodbye murf}
john-c. -- {goodbye john-c.}
butch -- So long Murf. Good bye to all. See you next chat.
butch -- {goodbye butch}