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."

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Kennedy's Disease Chat Transcript
5-5-01
Topics: Open Forum

Chat Participants:

  • jock
  • kdfl
  • gryphon
  • teda
  • dbenson
  • louis

jock -- {welcome jock}

jock -- good Morning from Australia

kdfl -- {welcome kdfl}

jock -- who I am chatting with

kdfl -- I'm John Mengel from Sunny Florida

kdfl -- Good morning from Florida, Looks like we're all alone this morning alistaire

jock -- they must all be in bed

jock -- Hi John how are you?

kdfl -- I'm doing pretty good, thank you.

kdfl -- Your the one who is probably pretty tired unless you had a good nap earlier!!!

jock -- No been busy building a ramp for a friend who has cancer

kdfl -- I guess we can always find someone worse off than we are, can't we?

jock -- Yes your right

jock -- I have to get back up in 4 hours to take my son-in-law to catch a bus going to Canberra

gryphon -- {welcome gryphon}

gryphon -- Hello, my screen name is gryphon, which is an "olde English" version of my last name. My real name is Patrick Griffin. You can call me Patrick, or you can call me Pat, whichever you prefer. I'm the designated driver, er, I mean the monitor of the session today.

jock -- Hi all

kdfl -- Hi Louis, where are you coming from? louis -- Plano, Texas

gryphon -- Louis, I used to live in San Angelo

jock -- Hi Pat

kdfl -- Hi Pat, small group this morning.

gryphon -- Welcome, everyone. Technically the chat doesn't start until the half hour, so I guess we're all worm eaters...

kdfl -- Here in Florida if you are on time you are LATE

gryphon -- Speaking of being on time - my sister lives about 50 miles away, near a town called Beatty, KS. We say she's on "Beatty time". When my folks were alive, we'd all get together for a BBQ. We'd set the time at noon. Almost always, she'd call at five minutes 'til 12:00 and say that they're just leaving...

teda -- {welcome teda}

gryphon -- John- I've watched the Weather Channel, and it looks like you've got great weather, It's been raining here for about three days now.

kdfl -- Pat, we wish we had some of your rain. Wea are in a drought.

gryphon -- I hate it when Florida has weather problems - then the oranges, etc. are lousy

gryphon -- Does the cold weather, rainy weather, or just a quick change in the weather cause anyone's physical symptoms to increase?

kdfl -- Pat, only the cold gets to me. I can't get my hand to function right when it is cold.

jock -- No it has not effected my YET

teda -- The cold also effects my hands. I have to warm them before I can hold a pen to write

gryphon -- Cold seems to affect many KDers.

kdfl -- You should see me try to button my pants on a cold morning, big time problem.

gryphon -- Cold may affect nerve activity, but I don't think that's been studied. It probably just has to do with vasoconstriction - reduced blood flow - due to cold, which reduces muscular strength, especially in the extremities.

jock -- 7.30 where is every body

dbenson -- {welcome dbenson}

kdfl -- Maybe we are EVERYBODY this morning!!!

kdfl -- Hi dbenson, where are you from this morning?

dbenson -- its raining here today in South Dakota

gryphon -- Dbenson- what's your first name, If you've already told us, then I've got old timers disease, too

dbenson -- im Lori's husband that has been on the chat before

dbenson -- Daune

gryphon -- OK. Where in SD do you live?

dbenson -- Huley it's about 35 miles south of South Dakota and I am 41 years old

kdfl -- How about everyone's ages again?

jock -- 64 23rd July

gryphon -- I'm 51 1/3 years old, or 359 years old in dog years.

teda -- 50 this past September

kdfl -- I'm was 66 on 14 February

gryphon -- John - a Valentine's Day baby - I bet that's gotten you a lot of nice "presents" from the females for your birthday ....

kdfl -- Pat, it sure has.

louis -- 40 in June

kdfl -- How many of you are still working. I have been retired since 1992.

jock -- Retired six years ago

teda -- still working in an office job. would not be working if the job required physical strength

gryphon -- I formally retired in 1999, then went on disability in 2000.

dbenson -- I've been retired and on disability since May of 2000.

dbenson -- I am a former farmer and still trying to help my boy and my father

dbenson -- what is the topic today?

gryphon -- Duane- I should know, but I don't. What would you, or anyone else, like to cover? What's the label on your HOT button?

kdfl -- Has everyone gotten their recipes in to Susanne for the cookbook she is having done?

gryphon -- Next Friday, I'm getting a Master's of Science degree in Adult and Continuing Education from Kansas State University. I started the program 7 years ago, then my KD started really kicking in. I was going to school full time, and working two jobs. After about a year and a half, I was diagnosed with KD. I've struggled to classes, but now I'm finally

done. Originally, I'd planned to get a good sit-down job, but my symptoms have progressed so much that it would have to be a part-part-time job, if at all.

gryphon -- One of my problems is my fingers don't remember where the keyboard keys are anymore, so that puts a kink in my employability...

gryphon -- Plus my hands and fingers get tired very quickly...

jock -- Congratulations

kdfl -- Congratulations Pat, GOOD work!!!

teda -- congratulations on continuing your schooling and getting the degree

dbenson -- congrats pat

gryphon -- Thanks everyone. I owe my completion to the moral support of my sisters and the great instructors who have worked with me as I started

having KD moments (falling down, etc.). :-)

gryphon -- I believe what I learned I can put to work for you guys (and gals) out there. I really didn't want a five-figure corporate salary

anyway. :-

dbenson -- how many of you guys going to Chicago in June

jock -- No

kdfl -- Duane, I'm not either. I have trouble with airplanes. When I get into one of those seats I can't get out.

kdfl -- What do all you retirees do with all the time you have on your hands? I am very active in our 2000 member computer club here in Sun City Center, FL.

jock -- My family are standing behind me laughing at what do you do Who, retired I do not know where I got time to go to work

dbenson -- doctors tell me to do what I want to do and when I get tired to quiet

gryphon -- I worm with KDA. I am improving my Web authoring skills and teaching myself to program in a few languages. I'm also a beginning to learn about jewelry making - metal smithing, colored gems, etc.

gryphon -- worm = work

kdfl -- Pat, guess your fingers are working OK then.

jock -- I help out with the MND support group as the secretary

dbenson -- I have four kids I spend most of my time running around to all of there games

gryphon -- The airplane thing - I was a Medical Service Corps officer in the Army - was an expert field medic, etc I always like the seats by the doors, 'caused they had extra room. I still remember the "blow" to my ego when I was asked to move so that an able-bodied person could sit there...

dbenson -- I have never been on a big airplane and not planning on it either. I would much rather drive.

gryphon -- I used to fly helicopters in the Army, too. I love the little commuter flights, and when you travel to remote spots, you ride in a lot of them. I got to hate the little b*str*ds because it got so hard to climb those little steps into the plane.

kdfl -- I drive most of the time now so I can have my scooter handy to move around.

jock -- How do you transport your scooter

kdfl -- Jock, I have a minivan with a jib crane mounted at the back. I don't know what I'd do without it.

gryphon -- That's a good topic. I have a manual chair, but I know I'll need to get an electric one some time soon. What did you consider when you got a power chair? What have you learned since you got one?

teda -- Driving or any thing that requires long periods of sitting are hard because of the pain in my legs and butt. I use a special soft pillow to sit on. Anyone have similar condition

dbenson -- I can still get around, but stairs are getting harder to get up.

gryphon -- Stairs - I used to go up them three at a time. Now I'm sure the devil invented them! =:-0

teda -- I got a chair lift for the house as "extreme stair climbing" became my new sport replacing snow skiing.

gryphon -- The only way I can get up stairs is pulling myself up on the handrail, and using my walking stick in the other to push and pull like a ski pole.

jock -- I think a lot of KD sufferers have problems with stairs and inclines I know I do

jock -- I have electric wheel chair and just received electric scooter

dbenson -- I have a lift chair, wheelchair, scooter, and bath lift through the states program that they have for ALS.

gryphon -- Extreme sports - I love that! What are we to do if we're in a multi-story building and there's a fire and they shut down the elevators? Any one ready to be a crispy critter?

teda -- going down the stairs is easier than climbing. Make sure that to exit you only have to go DOWN.

kdfl -- When I got my first scooter I only got for long walking. I guess if I had it to do over, I may have gotten an electric wheelchair. I still get around the house but I may have to a chair in the future.

gryphon -- What's best - begin with an electric wheel chair (like Terry has) that can raise and lower, or start out with a scooter first and go from there?

gryphon -- How do you transport your scooter or chair? Do you have a modified van, SUV, car, or pickup truck?

kdfl -- Pat, I just have a standard Mercury Villager.

kdfl -- I use an "Up-Lift Seat Assist" when I sit in a chair. It is portable and can be used anywhere. You can check it out at up-lift.com on the Internet. It works great for me.

gryphon -- John, I met a lady with SMA at the conference last year who had a seat assist. It seemed to really help her get up and on her feet.

louis -- Thanks for the chat everybody. I'll be back again.

louis -- {goodbye louis}

dbenson -- I don't use my scooter yet, it is sitting in the living room. I am thinking of getting a van with a lift in it.

jock -- I do not transport my equipment as I drive to the shopping centers where you can get a Scooter for your use or a wheelchair

gryphon -- Jock, so far I do the same. Do you find that those are usually very poorly maintained?

jock -- No all in first class condition here

kdfl -- Those at the stores are not fast enough for me, especially those at the grocery stores.

dbenson -- I guess I have not really tried the ones at stores.

gryphon -- People with ALS (PALS) have a lot of Web sites, and a lot of used assistive equipment for sale (unfortunately it is because ALS has such a fast mortality rate).

gryphon -- RFTCM,IBB

kdfl -- OK Pat, what do the initials stand for?

gryphon -- RFTCM,IBB= Running for the coffee machine, I'll be back (actually running is not accurate!!!)

dbenson -- Have a cup for me because I don't drink coffee. The doctors told me not to drink pop so I mostly water and sometimes tea.

gryphon -- We (the KDA) needs a list of all the state/country Web sites that deal with getting aid for improving mobility for disabled people. How to help pay for a chair, pay for access (ramps, etc), modify the home interior (kitchen, bath), etc. If anyone knows a site they use, send it to me or to Terry,

gryphon -- Let's start a petition. In fact, I will! I'll get everyone to add their names via email, and demand to corporate HQ that they establish regular effective maintenance programs for their manual and electric shopping chairs.

dbenson -- Sound like a plan, but more in likely I will run into my wife

with a cart.

gryphon -- I'll send in to all the Wal-Mart's and other discount stores, department stores, grocery chains, etc. Everyone can make copies to give to local branches. I get so frosted when they have one chair, and there obviously is no grease on the axles, the brakes don't work, the rims cut my hands, etc. And the store manager drives a well-maintained Lexus or something...

jock -- Gryphon equipment that is on lone to people has to be well maintained due to the fact on compensation if you are injured while using it

gryphon -- When we do that, then we'll start making them open the aisles up so a chair can get through or turn around.

teda -- Many times the keys are not in the scooter - you have to find the manager to get the key first

gryphon -- Yeah, I've told store managers that. Once, the brakes weren't working on a loaner chair, I got the manager and said it would take one person sitting down and falling and you'd have a multi-million dollar civil suit...

gryphon -- The next time I went back, the chair was gone. Turned out, they just put it in back instead of fixing it.

gryphon -- It's a pain when you have to hobble to a service desk to get keys, then back to the scooter. If you're lucky, the chair is actually charged up!

gryphon -- Last winter, a store kept its chairs in an outside breezeway where they kept the shopping carts. It was very cold, and the axle grease was so stiff, I almost couldn't roll the chair. They just don't think, or try to put themselves in our shoes.

teda -- Maybe they (the managers, CEO, etc.) need to experience some of the things that the people with physical challenges have to do to buy that loaf of bread.

jock -- Well my friends I will sign off as it is 1 20 am and I have to get up in four hours. I would ask you all to consider emailing each other as to how you are going as I believe this is the best medicine one could have in relation to KD. Good nigh or good morning all Alistair from Australia

dbenson -- goodbye

gryphon -- By Jock. G'day mate!

jock -- PS I love these chat sessions I always feel on top of the world after. .Bye All

gryphon -- I remember the first time I got an email from someone else who had KD, who had seen my Web site. It was an amazing feeling.

jock -- {goodbye jock}

gryphon -- I still get emails from people who have never met anyone with KD, or just got diagnosed. It really helps them to talk about "KD moments".

kdfl -- What was more amazing for me was to find out there was someone else right here in Sun City Center with KD.

gryphon -- The closest one to me I know of lives in the Kansas City metro area, about a t3 hour drive.

gryphon -- We're such rare birds, it's hard to get a flock together!

kdfl -- I guess some people just care for "CHATS".

dbenson -- yep

gryphon -- Did anyone watch "Survivor"? Do you think they'll ever have a Survivor for disabled people?

dbenson -- I am doubting it

kdfl -- No "Survivor" for me.

teda -- Yes I saw Survivor, they are planning a celebrity challenge and no they will never do one for the disabled

gryphon -- You notice there is never anyone in a 'chair on any of the game shows - Millionaire, Price is Right, etc. etc.

teda -- Maybe we should start a movement to get disabled on to one of these shows.

dbenson -- where r u from again gryphon

gryphon -- I'm from Kansas. I live in Washington, KS, a little town on US 36, about 1/3 of the way from Missouri to Colorado

teda -- Remember to support Terry with your recipes (due 5/13)and purchase of the recipe books

gryphon -- Recipe books - great idea!!! We need old family recipes, or just favorites. We also need everyone to buy a few books, to keep, give away, or sell.

gryphon -- When the wind is from the north, I can smell Nebraska (old joke, due to football rivalry)

dbenson -- I am about 6h away from Kansas city and 11h away from Denver

gryphon -- Don, what town is that?

gryphon -- Sorry, Duane. You already told me. It's that alt-timers again :-)

dbenson -- I live in a small town called Hurley that is off of 29

interstate, and is about35 miles south of siox falls south Dakota

gryphon -- Duane, you must live in southern SD. I was born in Columbus, NE

and used to go to Yankton occasionally.

gryphon -- I've got relatives in Omaha

dbenson -- Columbus is only 3h away from Hurley

dbenson -- I also have relatives in Omaha

gryphon -- Duane, are you going to the SMA conference in June? My route

takes me through Omaha.

dbenson -- they live close to the big mall in Omaha

dbenson -- yes I am but it will take ninety to Chicago instead of 80

kdfl -- Good chatting with all of you today. Looking forward to the next

one in two weeks. Bye All.

gryphon -- Bye John. Don't get sunburned.

kdfl -- {goodbye kdfl}

dbenson -- bye all

teda -- bye til next chat

gryphon -- Bye Duane

dbenson -- bye

gryphon -- Bye Ted

teda -- {goodbye teda}

gryphon -- Well, until we get back together around the old CRT campfire,

Adios, amigos.

gryphon -- {goodbye gryphon}



End Chat