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."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript
Topics: General Discussion/Open Forum

Chat Participants:

  • john-c
  • kdfl
  • terryw
  • butch
  • patrick
  • don48312

Begin Chat

terryw -- {welcome terryw}

butch -- {welcome butch}

terryw -- Hi butch

butch -- Good morning Terry. Missed the last chat for I had another wedding. This time it was my daughter Anita.

terryw -- Sorry you missed it

butch -- Of course Annette was instrumental in pulling everything together. We had a great time.

butch -- Terry--How have you been doing lately?

butch -- I guess we are early this week so what is the topic of today’s discussion?

john-c. -- {welcome john-c.}

don48312 -- {welcome don48312}

john-c. -- Hi guys

butch -- Good morning john c and don4832.

don48312 -- good morning all

don48312 -- u in Vegas butch?

butch -- No. I'm from Lancaster, PA>

don48312 -- k, but weren’t u the one who wanted to move to Las Vegas?

butch -- don-No don I couldn't afford to live that close to the life of Vegas

john-c. -- Lancaster PA is beautiful any time of the year. Butch, I didn't think you could have electricity there in Amish country. Hi Don: Sun City Center is home to another KD guy as I remember.

don48312 -- yep john c, kdfl (john) lives just down the block

john-c. -- You guys must be a real dynamic duo.

john-c. -- hope it's as nice a day where ever you are as it is in Maryland.

john-c. -- DNA back this week...I'm a full member now. When do I get to learn the secret handshake?

don48312 -- hello john c. I’m don from sun city center, fl

butch -- don You say that DNA is back. What were your results.

don48312 -- I think john c had the DNA, not me

butch -- Sorry--John what was the good word?

john-c. -- Butch: I'm a card carrying member! Terry: I'm really interested in the voice recognition system. Did it take long to set up?

don48312 -- john c, do u mean your kd was confirmed using DNA?

john-c. -- Yes. Took 7 weeks for results. Dr. called yesterday & I have app't Mon 10/22.

don48312 -- back when I had a DNA test in 1993, it took 11 months for the results to come back.

john-c. -- Modern technology is always improving.

don48312 -- with so few kd'ers, this is a hot bed of kd disease, lol

don48312 -- u there terry?

don48312 -- I was told I had ALS and probably wouldn't live to see 1995, be4 the DNA test

john-c. -- Good for you, Don! You showed them. Probably scared the %^# out of you. Glad you're still able to sit up & take nourishment.

butch -- don4382--I guess the lesser of the 2 evils is KD. I hope sometime they say that you are lucky to only have KD instead of ALS.

butch -- I tried Point and Speak from AOL. It required about half an hour the first time. But you must keep using the system to get it to recognize what you want it to type for you.

john-c. -- Butch: do you still use it? Using it today?

butch -- John c--No I'm still typing away that is why you may see so many mistakes.

john-c. -- Was it really helpful, or more trouble that it's worth?

butch -- john c--I guess it was worth the trouble if I can use it some day.

john-c. -- Butch: don't you have to use it regularly rather than sporadically?

butch -- john c Yes. That is why I still have to keep these fingers moving. They work better than my tongue sometimes.

john-c. -- Understood! My eye teeth sometimes don't let me see what I'm saying either.

john-c. -- Are you two still working?

don48312 -- I retired 1 1/2 year early with 35 years of service. don't do much anymore except play poker and walk in the wading pool

john-c. -- What are you better at, the poker or the walking?

don48312 -- I am a fair to meddling poker player

don48312 -- I walk 80 minutes without a break

john-c. -- Don, I can't walk 80 minutes without falling down.

don48312 -- u working john c?

john-c. -- About 60 + hrs/week: I sell for a large size construction co. Work with owners, Architects, Developers, etc.

don48312 -- butch, were u at the convention in Chicago in June?

bruce -- {welcome bruce}

bruce -- Sorry I am late - I continue to have computer problems thanks to NIMDA 32.

john-c. -- Hi Bruce.

butch -- Bruce--welcome aboard--Have you been to the market at Blueball lately.

kdfl -- {welcome kdfl}

john-c. -- Hi kdfl: thanks for the note.

bruce -- Terry, I looked up via voice. What version do you have - personal, professional, standard, etc.?

john-c. -- I also am looking at IBM Via Voice, but don't have enough inf. yet.

don48312 -- I purchased a Pride scooter and a lift which fits in the trailer hitch.

bruce -- Which Pride did you buy?

don48312 -- the 3 wheel victory model

don48312 -- sry. got u guys all mixed up

bruce -- I have a Pride Legend 4 wheeler and really like it a lot. It allows me to go for longer walks with my wife.

don48312 -- I been going to the theater and Buccaneer's football games.

butch -- Terry--Where are you? Haven't heard from you since signing on. Are you OK?

don48312 -- bruce, u in buffalo?

bruce -- No, Philadelphia area

bruce -- Does anyone own a recliner chair with the power life assist? If so, do you like it and which make/model do you have?

don48312 -- <------ don’t own power recliner

john-c. -- My mother-in-law, who lives with us, has one. Good & well made,

but I don't know the brand.

john-c. -- If I got down to look at the tag, it would take 5 minutes to get back up.

kdfl -- I don't have a powered recliner yet either. I have my recliner built up with a thick hard pillow.

bruce -- My mother also had one and I tried it several times. I really liked the way it helped me get up without having to use my arms so much. I am looking at the Pride models right now.

john-c. -- It's great for her: has had it 4-5 yrs now.

don48312 -- do any of u go on the chat area in the KDA site? I never find anyone there

bruce -- I have tried the chat rooms a few times, but like you never find anyone on it. I think Terry calls it "too many hours in a day" and I agree.

john-c. -- Only once in chat; lucky?

don48312 -- I think we should set a time to meet in the kda chat area

john-c. -- Don: that's a good idea. I've checked it almost daily for past 6 weeks, MT.

kdfl -- I haven't found anyone in the chat room either. Setting a time would be a good idea. We'd have to get an email list together to let people know what time and date we will be there.

bruce -- I would be interested in joining in if I can, my email is This email address is being protected from spambots. You need JavaScript enabled to view it..

don48312 -- we could use the KDA e mail list for a start

butch -- If anyone wants to chat about our everyday problems you can e-mail me at This email address is being protected from spambots. You need JavaScript enabled to view it..

butch -- Question for all. Many of you have motorized chairs or scooters. What do you do with the old one when you acquire a new one?

don48312 -- <--- just bought 1st one

kdfl -- I had one before my Pride and the control and motor went bad so I traded it in on the one I have now.

bruce -- Ref. used scooters. My local MDA office recycles them and offers them for free to anyone needing a scooter. All you have to do is buy the batteries. Not a bad deal at all.

john-c. -- Bruce, That's really great for those less fortunate.

butch -- I don't know much about chairs or scooters but I understand MD association will help with the cost of obtaining one. Is this correct?

bruce -- Yes, when I retire mine, I plan on turning it over to the MDA. They also said to put it in your will (that is how they get the most scooters).

don48312 -- hi neighbor john

don48312 -- kdfl, what model Pride scooter do u own?

kdfl -- I was afraid you were going to ask that. Just went out and looked. It is a Sundancer.

don48312 -- Pride Sundancer then John, right?

john-c. -- I got e-mail from another KD man this AM: he's going to New Orleans next week for the Med-trade show. He sells to the PRIDE Co. & is having breakfast w/the Pres of Pride on Wed.

kdfl -- John c, maybe he could get us all a special deal on the Pride or anything else that they make.

john-c. -- kdfl: what a deal! a whole car carrier of scooters & chairs, and at wholesale!

john-c. -- My mother-in-law has an Invacare motorized wheelchair that has a zero degree turning radius. When I'm there, I will get one like hers. It's compact (same size as a wheelchair) and has been in the house for 7 tears.

don48312 -- well, lots to do this morning guys, been nice, cya in 2 weeks, bye

john-c. -- bye Don

kdfl -- Wonder what happened to Terry. Haven't seen anything from him yet. Maybe his ViaVoice crapped out.

don48312 -- {goodbye don48312}

butch -- don4832 So long. Have good days till we talk again.

bruce -- Terry has been asking for additional topics for this chatroom. Are there other subjects we would like to learn about or share?

john-c. -- How about: what does your Dr recommend for exercise

kdfl -- John-c, good topic.

bruce -- John-c, that might be interesting. I am certain we are all told different things.

john-c. -- I have app't this Monday: I'll get a listing from him.

butch -- Additional topics-- How about dealing with the cold through this winter. Cold always makes my condition much worse. Are there anys to make it easier on ourselves.

kdfl -- Has anyone looked at the Up-Lift Seat Assist for helping you get out of a chair.

bruce -- I have seen them advertised and am curious about them also.

john-c. -- kdfl: yes. Looks like a good product. Something like that would be great for in/out of the car.

butch -- kdfl--What is an Up-Lift seat? Does it attach to any existing chair?

kdfl -- The Up-Lift Seat assist doesn't ATTACH to a chair. It just sits on the chair and does its thing. It is portable and can be taken anywhere.

kdfl -- I have two of them and don't know what I would do without them. I have a lot of trouble getting out of a chair as my knees are too weak to get me up until my legs are straighter.

bruce -- kdfl - I was wondering how comfortable the up-lift chair is. It doesn't look like much padding.

kdfl -- bruce, there is one available with a V-Foam seat that has more padding than the regular one.

john-c. -- kdfl: Does it swivel? Like for exiting from a car?

kdfl -- John-c, now swivel but you can get off the side of it. I use one on my scooter and only lift one arm to get off.

bruce -- kdfl, thanks, I'll check the one out with the foam pad. How heavy is the seat? I understand it is portable, but how portable?

kdfl -- Bruce, I haven't weighed it but there is a handle that allows easy transport.

kdfl -- I don't carry it myself but my loving wife takes care of it for me when I want to take it along.

bruce -- I am also interested in some type of lightweight, yet sturdy portable chair I could take outside. All that I have found are too low for me. I need something about six to ten inches higher than the normal

portable chair.

john-c. -- Bruce: how about a cane with a folding seat in the handle? Been around for years: not a seat, but a place to rest .

bruce -- John-c, thanks I looked at that, but the seat to too low for me and not very comfortable. I need something to take with me when I am talking with neighbors or going to an outdoor event where normal people stand.

john-c. -- Understood

patrick -- Bruce, I got a Coleman folding portable chair. Its virtues are: very easy to fold and carry, padded arms, seat and seat back, and very sturdy. The only downside is it has a steel frame, which adds to its weight, but that helps make it stronger and more compact. Mine is the perfect height for me, but their may be other sizes.

kdfl -- Bruce, I've seen one at Wall Mart that is really high and can be folded up for transport.

bruce -- Patrick, thanks, I check it out at the sporting goods store (assuming that is where they are sold).

patrick -- When you get a chair, check out the maximum weight it will carry. I'm over 200 pounds, and I've had plastic lawn chairs and a cheap steel-framed bar stool (I used for washing dishes) break and collapse. I don't know about you guys, but when I sit, I kinda flop, and when I rise, I have to use my arms and that puts uneven strain on the chair. A 300 pound max weight is pretty common, and it's my recommendation.

john-c. -- We should all work together & invent & then patent things that are of specific benefit to each of us. Might be some great ideas among us.

patrick -- {welcome patrick}

patrick -- Hello everyone. Sorry I'm late, but I have the flu, or a cold, or something.

john-c. -- Hi Patrick

butch -- HELLO Patrick! You almost didn't make it today. Time really went fast today so we must have had a very good time today.

patrick -- I have a sore throat. Maybe I got it from that email that had an attachment file titled "Odd white powder"... ;-)

bruce -- Well Guys, it has been fun, but I have to sign off. I have family coming over today. Take care, stay well and be happy.

butch -- Thanks to all--Hope to see you all at the next chat. Stay healthy and happy till then.Good bye for now--ron (butch)

bruce -- {goodbye bruce}

john-c. -- Almost out of time. OK guys, pick a day & time for chat room.

kdfl -- Bye all, talk to you next time.

kdfl -- {goodbye kdfl}

butch -- {goodbye butch}

john-c. -- Stay well. Talk to you later

patrick -- John, are you still hooked up?

john-c. -- leaving now

patrick -- I guess I really got here late. I guess I needed my sleep. Gotta beat this flu or whatever.

john-c. -- bye Patrick. Stay well.

john-c. -- {goodbye john-c.}

patrick -- Take care and see you in a couple weeks. I'm going to do some thinking about chairs and such...

patrick -- Adios, amigo.

patrick -- {goodbye patrick}

End Chat