Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript
Topics: Open Forum

Chat Participants:

  • terryw
  • lenj
  • jock
  • kdfl
  • billeric
  • teda
  • butch
  • toddrallen
  • mikeg
  • bruce

Begin Chat

terryw -- {welcome terryw}

mikeg -- {welcome mikeg}

terryw -- {welcome terryw}

terryw -- hi mike

mikeg -- Hello from Atlanta, GA

terryw -- have you recovered?

mikeg -- I think so...

butch -- {welcome butch}

mikeg -- What a race!

terryw -- Hi Ron

terryw -- Yes, we got all the pics you sent Mike, Thanks

mikeg -- You're welcome - I love taking digital pictures. Anything I don't

like - I erase!

bruce -- {welcome bruce}

terryw -- Hi Bruce

butch -- Hi Terry and to all who are here so far.

jock -- {welcome jock}

bruce -- Hello - this is my first time so I might struggle a little.

terryw -- Is that bruce from PA?

bruce -- Yes, that is me (or I)

terryw -- No Problem bruce, its just an open session to talk about

whatever we want.

billeric -- {welcome billeric}

butch -- Bruce welcome-first time or not these guys make you feel part of

the family.

jock -- Hi from Australia

terryw -- Actually Patrick is going to be hosting this session I am just waiting for jim to arrive.

terryw -- For Him I mean

terryw -- Hi Bill

terryw -- Hi Alistair

kdfl -- {welcome kdfl}

billeric -- Morning folks

terryw -- Hi KDFL,

teda -- {welcome teda}

kdfl -- Good Morning All

terryw -- hi Ted

kdfl -- Terry, Yes it is John

teda -- Good morning from Redwood City, Ca

terryw -- So Has anyone used the 24 hour chat room yet, and has anyone been their when you entered?

kdfl -- I have gone there a couple times and found noone present.

billeric -- I entered once but nobody was there

terryw -- I think in order for that 24 chat room to work people need to

set up meeting times with others

billeric -- Good idea

jock -- Yes was on a chat room all it was full of just swearing and the KD nobody was on have tried four times

teda -- I've entered several times but found no one else in the 24 hour chat

butch -- Terry--Have not used 24 hr chat but you are sure working overtime bringing these great tools to us. THANKS.

terryw -- Yes we have been working very hard to improve the site and keep

up with the KDA needs and its growth.

terryw -- I guess we need to start serving free coffee in the cafe to get people to stay around

kdfl -- We're too many different places with too many different time zones.

lenj -- {welcome lenj}

terryw -- Hi Len

lenj -- Hi terry and of you

lenj -- all

lenj -- sorry about that, my hands aren't working today

terryw -- The only thing I wish the chat room had was a bell in it so if someone joins I could be in the other room and hear a bell so I could come in.

toddrallen -- {welcome toddrallen}

terryw -- This way I could leave the chat room up all day on my screen

teda -- Maybe to get things rolling have people sign on at times such as any even number hour and base that on one time zone

terryw -- good idea teed

terryw -- hi Todd, what the weather like in Chicago, I need to know what to pack.

toddrallen -- weather is fantastic this weekend, 80, sunny light breezes

toddrallen -- but 1 week ago, it was 40 and for the last week it was 90+...

toddrallen -- pack a fur coat and swimming trunks. You never know..

terryw -- LOL

terryw -- do you all like the new site layout and look?

bruce -- You did a great job. It is very well done (professional).

mikeg -- Yes - good job!

terryw -- We finally got the new logo up

jock -- Yes excellent

terryw -- Thanks you

terryw -- fumbling fingers this morning

bruce -- I found the stories that were posted well done also. It makes it much more personal.

lenj -- Terry I really like it, thanks for th3 great effort.

kdfl -- I think the new layout is great and very easy to get around in and find what we need and want to know.

toddrallen -- Just took a peek at the new website. I like it. Clean and straight forward.

terryw -- thanks

terryw -- did you see the fundraiser that Tom Goynes did?

terryw -- Mike Goynes is here in the chat, tell us about the race Tom did

mikeg -- It was 260 miles of straight paddling. I don't know how even a

healthy person could do it.

terryw -- How is Tom doing now soreness wise?

bruce -- That was an amazing story (canoe race). I agree with Mikeg's

comments about even a healthy person completing it.

terryw -- I hurt just thinking about it....

mikeg -- Tom has found that when he gets to the breaking point and he can't lift his arms anymore, that ICE seems to really help. He puts it on the back of his neck and almost instantly gets his strength back! Has anyone ever experienced that?

terryw -- I need to try that

bruce -- Interesting. I'll have to try that.

toddrallen -- regular water ice, or are you talking about something else?

mikeg -- Just regular ice.

kdfl -- Working with computers really doesn't make my arms that tired.

mikeg -- He sounded much better a couple of days ago - he had a bad sore throat at the finish. He did have a lot of sore muscles - but that's a good thing!

terryw -- Sorry mike, I missed your comment on Tom while I was typing, I hope he is better now.

mikeg -- It seems just the opposite from what we all experience during cold weather. We all but totally loose our hands if they get cold - even Tom has problems in the clod weather but something about the back of the neck seems different. (sorry for the delay - I had a phone call)

toddrallen -- anybody else planning on coming to Chicago next week?

lenj -- I'll be there, we're really looking forward to Chicago

toddrallen -- If anybody needs info or help with anything here in Chicago,

email me This email address is being protected from spambots. You need JavaScript enabled to view it.

toddrallen -- I'd also be willing to organize a get together, say at a pizza place or something if people are interested..

butch -- Hey Bruce this is Butch from Lancaster Pa. What part of Pa are you from?

bruce -- 30 minutes away - just north of Downingtown (Eagleview).

butch -- Since we are not that far away maybe we can get together some

time for a chat.

butch -- Bruce, Thanks for a name to identify you better. My name is Ron

Wiker from Lancaster.

terryw -- Well, I went to the beach and tried swimming for the first time

in 4 years and discovered a new problem for myself. Since I now have bad

problems with balance so I was able to go out past the breakers pretty

well and I swam around with a boogie board for a while then when I came in

towards shore I could not stand due to rubber legs and the waves kept

knocking me over. I just layed and floundered around on the shore and

could not stand for 4-5 mins like a hurt seal. I was embarrassed.

bruce -- Terry, I have been there and done that. Just waiting for someone

to drag the beached whale up on the shore.

terryw -- I need to take someone with me now I guess to help me out of the water

mikeg -- Terry, I have the exact same problem at the beach. I was thinking of carrying a walker out with me next time to help me get back in.

toddrallen -- {welcome toddrallen}

lenj -- I can only swim in a pool with stairs and railing. can't use a ladder or the beach

kdfl -- Falling, I think is my worst fear because I too have a very hard time trying to get up. I have to slide onto a chair and then rest to gain the strength in my legs to get up. Even then it isn't easy.

teda -- Terry, pools are bad if the do not have steps and a handrail. No ladders for me! On my cruse I needed help getting back on the boat after snorkeling

billeric -- Me too, I need stairs and a railing. Once I am down it is a

chore to get me up.

kdfl -- Here in Florida, our clubhouse has a lift that will put you in and

take you out of the pool. I can't even do the steps and handrails anymore.

terryw -- I have an idea, How about I take one of those sling gurneys to the beach with me like they use for injured dolphins, and get a couple of young kids to take me in and out with that? LOL

bruce -- On the other hand, swimming does feel good. The gravity issue is removed making life interesting for a few moments.

terryw -- Yes I fell normal almost when in the water

bruce -- I am not certain about the rest of you, but those few moments in life where I feel normal are just wonderful - good for the soul.

jock -- I will send over a White Pointer that will stand you up on the beach

terryw -- white pointer?

terryw -- dog?

jock -- Shark 6 meters long

terryw -- That will get me out of the water fast LOL

terryw -- The way I figure it a shark can take my legs and I would not even know it.

terryw -- they are already gone :(

kdfl -- I'm afraid he'd get me as I don't have a "FAST" anymore.

jock -- Getting that way myself

billeric -- Back pain---anybody getting relief from over-the-counter stuff?

bruce -- Back pain - I have found that several yoga stretches have totally

removed my back pain. What a difference.

toddrallen -- mikeg, when I do exercise to the point of exhaustion I usually end up wrenching or twisting a joint that takes awhile to recover. How's your recovery from the paddling?

mikeg -- That was my brother, Tom who went on the race, but I have the same problem recovering from exercise. In fact, I am using a NordicTrack elliptical cross trainer every other day but I stopped using it for a week to let my body build up so I could just FOLLOW the race. There were a lot of riverbanks that I didn't even attempt to go down because they were too


toddrallen -- Oops, pardon my confusion..

jock -- If I was in the water and a shark arrived I would be the second person to walk on water

terryw -- I will be right back

lenj -- speaking of getting up, someone said they quit flying . the best seat on the plane is aisle set and raise the arm, swing legs into aisle and use seat back to lift.

kdfl -- I am doing most of my traveling now with my van and scooter. My wife is more comfortable doing it that way, and so am I.

bruce -- Me too ref. the van. It is a lot easier than airports.

toddrallen -- What type of scooter do you have? I'd like to find one with full suspension. The fixed axles and small wheels on the ones I've seen don't look to appealing for the rough pavement & sidewalks in my area.

terryw -- I use a Jazzy powerchair, it has suspension

toddrallen -- Not familiar with Jazzy. How big & heavy is it? How fast?

terryw -- My powerchair does 6mph.

terryw -- Yes Jazzy = Pride

bruce -- There are some off-road scooters and have larger tires and a wider wheel base. Pride makes them - called PMV

bruce -- How has the Jazzy held up?

mikeg -- Terry, how long does it take to charge the batteries in your chair.

terryw -- Charge takes about 6-8 hrs to full charge, and goes 25 miles on a charge at 1/2 speed

kdfl -- My scooter is a Pride with the small wheels but has not been any kind of a problem for me.

bruce -- I drive a "Legend" from Pride. The same one Evil Kenivel drives.... LOL

butch -- I see many of you use a power chair. Was there any help financially to get a chair?

terryw -- Ins paid for my chair since I needed it at the time to continue my work

bruce -- MDA and my insurance company were very helpful in helping me to

buy a scooter.

lenj -- Butch the MDA assoc will give up to 2,000 dollars for the cost and/or upkeep of a scooter or wheelchair

terryw -- I think MDA assists up to $1500 for a chair, is that correct?

toddrallen -- I have a welder and have been thinking about building my own

scooter/chair. If I'm going to do it, I'll have to do it soon as my hands are getting shakier and I'm afraid I won't be able to make a good bead soon..

bruce -- The best I have done so far is one tricycle - but that was by


toddrallen -- If I build a scooter, I'll do it using wheels & suspension bits from mountain bikes. I want something fairly light but rugged & fast.

bruce -- I think it is now $2000. They paid what my insurance company didn't. What a nice deal.

toddrallen -- Cool! How my buses can you jump on the Pride?

terryw -- MDA also helps with up to $300 per year in wheelchair maintenance. That's great.

bruce -- My local MDA also has used scooters that they would have given me and all I would have to do is buy the batteries. This is a good way to get started.

bruce -- Pride now offers a new scooter with a "turbo" button that will

get you up to 8 MPH. Their PMV will go 10MPH.

kdfl -- Be careful with those "FAST" scooters. I laid mine over one time when I wasn't careful.

jock -- There is a chair that you can take to the beach it is four wheel drive love one so I could go fishing but to dear

butch -- Thanks to all for your input as to where to obtain help for getting a chair or scooter.

lenj -- There is a company in ellicot, ny that makes scooters for two, in case you want to take you significant other for a ride

bruce -- Butch, check out the Internet. Pricing is all over the board.

terryw -- check this baby out

terryw -- That link is to the mother of all chairs

toddrallen -- I have a scooter from Badsey that went 18mph that I modified to go 27 mph, but it has no suspension for the wheels, just the seat post so you can't use the speed except when the pavement is very smooth.

bruce -- Mine goes 5 1/2 MPH. On curves that is pretty fast. It allows my wife and I to take walks. Go to parks and hike along trails. It is plenty fast for me.

kdfl -- Since most of us are retired, I am wondering why we are looking

for "SPEED".

terryw -- Its the only way we can still move fast

toddrallen -- I want the speed so I can travel on streets in addition to sidewalks.

bruce -- Question: Has anyone had any experience with acupuncture?

jock -- Yes

bruce -- Jock - was that Yes to acupuncture? If so I would be interested in the results?

jock -- Yes it was

teda -- I tried acupuncture years ago and at that time I did not find any difference. Maybe it would be different now that the legs have gotten worse

jock -- I had terrible pain in my shoulders, went and had the acupuncture twice and the pain went never returned.

jock -- I came home with the needles still in my shoulders and neck and my wife removed them after half an hour

toddrallen -- I don't have any chronic back pain, but do get some nasty cramps. Aspirin / Tylenol don't seem to make any difference. A bottle of wine is more help, but kind of limits what I'm capable of doing..

teda -- Commercial break Terry?

terryw -- {welcome terryw}

terryw -- just testing something

billeric -- Jock, thanks for sending the exercise material

jock -- Okay Eric

terryw -- I just bought a book called "The Travel Detective"

terryw -- The book tells you all the insider tips

teda -- I heard about The Travel Detective recently. Is it any good?

mikeg -- What is The Travel Detective?

terryw -- The travel detective is a book by a travel insider that has super tips on everything on travel from flights, to hotels to cruises

terryw -- I was thinking of the possibility of doing a LA to NY cross country wheelchair trip to raise awareness of KD to get tons of media coverage but I don't know if I could handle 3000 miles and 3 months straight in a chair. I have to think more about this idea?

butch -- I am a member of a Lions club. Are there any other Lions in our group?

jock -- X Lion

jock -- Just resigned as it was impossible to do projects

butch -- Jock are you an ex because of KD or did you lose interest?

jock -- Because of KD was on Multiple District as Organ Donor Chairman for

Australia If I cant put in 100% its not for me

teda -- Mason Any others?

kdfl -- How about getting out of chairs? Is anyone using any kind of help?

I am using a pneumatic cushion called an Up-Lift Seat Assist and it works great for getting out of a chair or off the scooter.

terryw -- My chair cost $7500

jock -- Same as you Terry my chair has power lift seat, reclines, goes forward and back has power leg rests Cost $7.000

terryw -- thanks Len

terryw -- I know that there is a chair called Permobile that costs $13,000

kdfl -- My Up-Lift cost me $120.

mikeg -- Well, I gotta go - Paula has a honey-do list a mile long... paint two bathrooms and a living room! We'll see everyone in Chicago next weekend. Have a good trip!

terryw -- bye mike

bruce -- Well, I must say that this has been interesting and enjoyable (my first venture into the chatroom). Thanks.

mikeg -- {goodbye mikeg}

jock -- Bye Mike

bruce -- {goodbye bruce}

butch -- So long Mike. Have a good week.

lenj -- Terry, do you know how many kdaers are going to be in Chicago

toddrallen -- Our sidewalks are usually much rougher than the streets

terryw -- I think maybe 15 or so

terryw -- give or take

lenj -- thanks

terryw -- don't know exactly since they registered with FSMA not us

butch -- See what happens when you don't read before you send a response.

You end up with have a instead of have a.

lenj -- I look forward to meeting all of you in person and swap stories

terryw -- me also Len

terryw -- I will be bringing my manual wheelchair, taking my electric was

such a hassle last year

toddrallen -- Did the airlines give you trouble with the electric?

terryw -- Yes, they handled it terribly

lenj -- The Fairmont is providing me with a manual one to use.

kdfl -- I wouldn't like to have anyone try and handle my scooter for fear they would somehow wreck it for me.

terryw -- great

terryw -- they damaged mine

butch -- Terry if the airline damaged your scooter did they take care of

fixing or replacing what they damaged?

jock -- I suppose I should retire to my bed as it is 1,30AM All going to Chicago have a safe trip. By all

terryw -- Bye Alistair

billeric -- Bye Jock

butch -- Hope to see you all on the next chat. It was a good day just

talking with all of you. Good bye for now.

toddrallen -- I think new technology will revolutionize scooters/chairs soon. Lead acid batteries should be replaced by much lighter power sources soon.

toddrallen -- It's the lead acid batteries that make the things heavy, slow and limited.

terryw -- Bye Butch

jock -- {goodbye jock}

teda -- Look forward to hearing about the Chicago trip. Bye for now

terryw -- see you all, I think I will cut out early as well.

teda -- {goodbye teda}

billeric -- Bye folks, looking forward to info you glean in Chicago. Have a good one.

toddrallen -- ok, bye all..

lenj -- Good bye everyone and thanks for a great chat. Happy trails to you until we meet again (hopefully in Chicago)

terryw -- bye

kdfl -- Bye all, See ya'all next time.

kdfl -- {goodbye kdfl}

butch -- {goodbye butch}

butch -- {welcome butch}

butch -- {goodbye butch}

End Chat