Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am very glad to see that you have added the personal stories, they are a great help. They give an outlook on what to expect with such a disease. It makes me proud to see people who are willing to express and share their stories with the world, keep up the good work!"

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Kennedy's Disease Chat Transcript  04-17-2004

Topic:  Everyday Tasks

Host: Terry Waite


Chat Participants:





TerryW: Hello

FL-DON: hi terry

heyvern: Hi Terry

MICH: Hi Terry

MICH: Heyvern, in what state is it 41 degrees??

TerryW: hows everything

FL-DON: things going well here in fl. finally warming up

heyvern: Santa Rosa, CA the wine country you know

TerryW: Hi vern, this is your 1st time in a KDA chat?

TerryW: oh no

TerryW: You were in them before right?

heyvern: Fell and broke the Fibula in my left leg last November

TerryW: VernQ

MICH: It's warming up here in UTAH too... at least staying above freezing

TerryW: right

heyvern: No, Terry I was with you guys for a short while a year or so ago

TerryW: Wife is going into Yosemite park right now with friends, I am hosting chat so I can't go

TerryW: :(

MICH: Heyvern, I know the feeling, years ago I told broke and smashed my Tibula

FL-DON: we did the Yosemite thing 20 years ago, neat place

TerryW: Vern Susanne say's where you been?

heyvern: I'm in envy, haven't been to Yosemite in at least 30 years

FL-DON: love the sheer cliffs they have in Y

heyvern: Started going there in 1945

FL-DON: the drive up along the river is neat also

heyvern: I've been reading the transcxripts just trying to keep up. You guys and gals are doing a great job

MICH: It took a while but I tried to zip thru 2000 to 2003 transcripts this past week and I learned alot!

heyvern: You're right Terry. Vern Q

TerryW: Sorry I was distracted the wife is leaving

heyvern: Bye Suzanne

duane entered the room.

TerryW: Hi Duane

heyvern: Hey Duane

MICH: How's the weather in Texas?

TerryW: I went fishing last week, had a few problems

TerryW: my hands were cold and I lost my hook and could not tie another on because fingers did not work

TerryW: friend had to after I treid for 20 min

heyvern: Man is that frustrating or what?

duane: Hello everyone. Weather is great. Expect High of 81

TerryW: I now bought hand warmer packs to keep in my takle box

TerryW: to keep my fingers warm

TerryW: Yes I was very frustrated, because I had not been fishing in 2 years

heyvern: trout fishing?

TerryW: yes

duane: does the warmer help with dexterity

TerryW: yes

TerryW: my fingers work ok in warm weather

JohnM entered the room.

TerryW: cold kills them

TerryW: I was embarrassed that i could not tie it but they understood

heyvern: I find when my hands get cold or tired they go into spasms and my fingers go all directions

TerryW: Sometimes I really hate this disease

TerryW: Some nights I wake up in tears from dreams of being disabled

TerryW: last night was one of them

MICH: Do you all feel like I do that getting up and ready and out the door in the morning is the most strenuous time of the day?

TerryW: MICH my last afternoons are worse

heyvern: Can't move without a hot shower to loosen things up

duane: yep. worst part of the day. am always late for work by 5 -15 mins. but manger very understanding.

TerryW: Yes Vern I take a hot shower first thing when I get up . It helps get the muscles going

MICH: Oops, I guess I'd agree, by late or midafternoon I'm ready for a nap and I can be mentally and physically spent.

Coak entered the room.

duane: the more I hurry to get ready, the slower I get. like everything is actually in slow motion.

TerryW: Hi John

Coak: Hi everyone!

JohnM: Hi Terry

FL-DON: ho Coak

TerryW: Hey I am the only one with hair in the room on the list LOL

Coak: Been so long away from chat I had to write for my password.

heyvern: I've still got all my hair at 71, it's just a white.

Coak: All mine OLD gray haired icon

heyvern: think i'll change my icon

MICH: Coak, how's the weather in Maryland?

FL-DON: i got bald eyeball, but lots of hair

Coak: today is great!!

FL-DON: MICH, mornings i'm raring to go, but evenings i get wore down

JohnM: Looks like a lot of us have chosen the gray bald look.

heyvern: I think we should be able to submit our own picture for the icon list

Coak: I'm s l o w all day- the AM is bad 'cause I can't button the shirt.

TerryW: would be a very small picture

JohnM: My days are always really good. I just get tired early as I usually get up around 5:30 or 6:00.

Coak: I need much more sleep, now

duane: I do ok on the first two top buttons ...but further down my arm and hand don't

heyvern: I'm usually up by 8:30 or 9:00

Coak: top ones are a #$%^&*

MICH: With people joining the chats and leaving the chats over the yea...might be neat to have a yearbook with pictures??

heyvern: that would be great

duane: found that leaving shirt on hanger works best for buttoning the collar.

Coak: Bolnd joke coming.....

TerryW: I had a hard time buttoning my jeans last night

Coak: She went to eye Dr........."cover left eye."

Coak: she got confused over right/left

Coak: Dr got frustrated & got a paper bag, cut out one hole, & put it on her head

Coak: she cried & sobbed

Coak: he said "it's OK, don't be upset

duane: i have to lay down on bed to button pants. Kinda rough if you need to do #2 and not at home. Actually had to lie down on floor in bathroom stall. Luckily no one came in. I'll never "plan" to do that again ! ! ! LOL

Coak: She said "I wanted wire rims"

JohnM: I don't do shirt buttons any more. All my shirts are with the expanable bottom.

Bruce entered the room.

TerryW: Hi Bruce

duane: xpandable bottom?

heyvern: Hey Bruce

Bruce: Good Morning - sorry I am late

Coak: duane-- my new pants have expandable waist - a big help

duane: I bought 3 pair of dockers with extra give. helps. Just when get tired have to lie down to button.

JohnM: I usually wait for BM to happen before I go anywhere because I have the same problem. I also can't get off the pot without the riser.

MICH: I wasn't here for the Dr. Leiberman, U of M, chat but noticed he mentioned liver as an area most effected by androgen receptor, and I found out I have an elevated liver reading... any one else?

duane: yes

TerryW: Here's a good one - A woman was trying hard to get the ketchup to come out of the jar. During her struggle, the phone rang so she asked her 4-year-old daughter to answer the phone. "It's the minister, Mommy," the child said to her mother. Then she added, "Mommy can't come to the phone to talk to you right now. She's hitting the bottle."

heyvern: Got caught in Crescent City without riser and couldn't get up. locked in bathroom for 30 min.

heyvern: Yes

JohnM: My doctor hasn't said anything about my liver function.

MICH: Duane and Heyvern, YES what?

heyvern: elevated liver something

Coak: I have stayed in 2 different Hyatt hotels in last 3 weeks & gotten a "HC" room. -----completely equipped EXCEPT that the toilet was NOT HC height. What a pain. Hotel will bring up a lift seat if you call. Embarrassing situation.

duane: Ok political joke... Hillary Clinton was speaking to Arnold (CA Gov) and said if you were my husband, I'd put poison in your drink". Arnold replied, "If you were my wife, I'd drink it."

FL-DON: i have had elevated liver function, CRT, for all my life

TerryW: hehe

Coak: Thank God there was a phoine in the bathroom.

Bruce: //1

FL-DON: think many of us have elevated function

JohnM: Coak, Didn't know that the Motels have such a thing. I carry mine along with me.

TerryW: You guys are scaring me. :( I can still get off the pot myself.

duane: phone in the bathroom. Who do you call for help, maintenance? or room service :)

Coak: only thing elevating here is a thought

TerryW: is this what I have coming?

FL-DON: is there any way to pause the movvement of the chat scroll???

TerryW: no don

FL-DON: cant go back and read

FL-DON: tk

Coak: only IF you are one of us lucky ones! LOL

JohnM: LOL duane.

TerryW: don try moving the scroll bar on the right up or down it may pause it

MICH: I have to boost off with my hands from the front of the seat.

Coak: Room svc! LOL!!

Bruce: I carry a six in "elevated" seat in the van - just in case the only john available is the normal size.

TerryW: Nope, that does not work. Sorrry

heyvern: I am now using a walker with a seat. Have to us it all the time. can't get up from a regular chair or sofa.

Bruce: What I hate are the houses or restaurants with the very small (height-wise) johns. They are impossible to get up from.

Coak: heyvern- I got a recliner chair 2 yrs ago that is a lift chair -- Fantastic!

Bruce: The other thing I hate are the very slippery floors in johns where I can't get a good grip to push myself up.

Bruce: My too, John. It really makes a difference.

heyvern: My problem is my pride. I think I can still do things I can't. then I get into trouble

Bruce: All of us Vern

Coak: I gave up on pride 2 yrs ago.

JohnM: I have the Lift Recliner also. It is really great.

FL-DON: judy replaced all the buttons on my pants and shirts with velcro. so much easier

Coak: Don, that's a good idea

heyvern: I put 4" risers under my recliner and saved to $100.00 + works great

JohnM: Coak, I don't worry about Pride either. I just do what I have to to get the job done.

heyvern: that's $1000.00

Coak: 10-4

duane: Does anyone have a problem walking in windy conditions? I mean 15-20 mph wind? Normal for NTexas this time of year. Even with my cane, it literaly knocks me off balance. Takes 5 minutes to walk 50 feet.

TerryW: I am off balance alll the time

MICH: Pride, my feet and legs have really weakened significantly over last 6 months, and pride has got me in a qandry as to whether I should keep working or give my voice, arms and the rest of my body a vacation.

TerryW: wind would be hard

heyvern: get a walker and be safe

Coak: My chair cost $550.00 at a local store that ordered it -- as opposed to the Rx store one for over a grand.

duane: i have one. just a pride thing. only 43 yrs old.

JohnM: I also have an Up-Lift seat assist an all my regular chairs. I'd be lost without them. One each for my wheelchair, desk chair, and scooter.

Coak: Keep working!

FL-DON: Coak, 500 for a chair with motor lift???

Coak: yes-made by Sealy

FL-DON: tu Coak

duane: I thought about going on disability, but decided against it right now. Going to keep working as long as I can.

Coak: just got another one for Mary's Mom (95 this week) at $600 -- price increase.

Bruce: Okay - a man in the Bayou is driving down the road next to a swamp when he sees a woman with a shotgun standing waist deep in the water. He wonders what she is doing, so he pulls over and walks to the edge of the swamp. She fires another round and hits an 8 foot alligator. Next she drags it out of the water and flips it over alongside three other dead ones. The blond screams, ":Not again": and trudges back into the water. The guy couldn't understand what she was doing, so he askes why she is killing gators. She replies, "I can't afford alligator shoes so I thought I would go out and get my own. The ony trouble is that all of these gators are going barefoot."

JohnM: Those chairs come in different sizes and different prices.

TerryW: Sorry I am not to talkative today, I am having a hard time with KD today. Its one of those days where you think about KD and what's to come. I don't get these very often but when I do they are bad... :(

FL-DON: MICH, i worked till i felt it was dangerous. then i went on disability. that what disability benefits we've paid for are for.

Coak: STOP thinking, Terry. Just LIVE!!

heyvern: Hang in there Terry Reach for the Stars

MICH: Coak, the job or more like 20 hr a week hobby I have now has alot of talking involved, so I often have to catch my breath... and a 30 hour job I'd like may require more talking (previous to now, a couple years ago... I'd worked 60 hours a week for over a decade.

JohnM: I have been pretty lucky as I don't dwell to much on what "MIGHT" happen and just keep doing as much as I can for as long as I can. Weems to work for me.

TerryW: It's hard when you are the hub of all e-mails to ignore and not think about KD

JohnM: "Seems"

heyvern: I'm working about 20 hrs per week still.

Bruce: Eric, I practice diaphragm breathing everyday. It really helps me maintain strong lungs and maintain my breath.

FL-DON: i agree JohnM, i do what i can and stop when i feel i am taxing my body. i'm not trying to impress anybody

duane: I know what you mean. I couldn't wait to leave the office yesterday. Had put in 54 hours for the week. All IT (programming work) till midnite. No plans for weekend but resting.

Coak: MICH- I'm almost 62 and work about 65-70 on my "day job" with another 10 +/- hrs week on the various non-profits & I love it. I'm just slower now than before.

Coak: lots of driving.....I totalled my SUV 3 weeks ago coming back from a jobsite. Car gone, but not even an aspirin

Bruce: Every day I thank God that I am healthy except for a very slowly progressing disease. When I see others with cancer, heart disease, etc. I know I am very fortunate.

JohnM: My main work now is "Volunteering". I work three afternoons in our Computer Resource Center and make any housecalls to see people who need help with their computer.

duane: Stress, emotional or external , REALLY slows me down. Making harder to walk or use arms.

Bruce: John, I would love your job. It sounds almost perfect.

Coak: It's good to be able to "give back", John

JohnM: Here in Sun City Center we see a LOT of people that are a LOT worse off than we are.

heyvern: Bruce, I'm with you on that. Try looking at someone with ALS as some of us were first diagnosed with. It really pputs things in perspective!!!

FL-DON: john is one of the driving forces in a 1,000+ member computer club

Bruce: I still mentor business friends. I have been doing it for about ten years now and love it. It challenges me as well as gives me a perfect learning opportunity.

Coak: Terry, you are awful busy as Mr Mom

Bruce: And Terry, you can still do a lot more than I can around the house.

TerryW: I have hardly seen my wife in over a month I am in bed by the time she gets home from her job

TerryW: shes been traveling a lot also like you john.

Coak: Work (also the volunteering) gives a purpose to life.

TerryW: I try to keep this place going

TerryW: its hard

duane: Terry, how are things going with horse riding? Hope you haven't fallen off.

Bruce: John, you have more energy than three men...

Coak: The travelling is tough eniugh w/o the KD. Susanne & I work about the same pace....It is grueling.

JohnM: Terry, We all want to thank you for all the work you put in for KD. It can't be easy and Susanne sure gives you a lot of help also. Hang in there.

FL-DON: in Sun CityCenter, 1/2 have cancer, 1/4 have heart disease, many have plastic hips-elbows-knees, diabetes is everywhere, viagra is top selling drug, etc.............. but we are all happy with what we got, not with what we dont have

TerryW: I have not got to ride yet, the horse is away at boot camp for training, she has a attitude

Coak: no energy, only the drive

TerryW: JohnM Susanne does most of the work

heyvern: Terry, as you may recal, I lost my wife and helpmate to Cancer almost three years ago, Makes it a real challenge to keep going alone.

TerryW: yes vern, Sorry

Coak: I really have been busy--What's Viagra?

TerryW: Sprry I am having a down day, and bumming this chat session out

TerryW: Sorry

Coak: Terry- How's fishing?

TerryW: I need to play some old music to snap me out of it

TerryW: FIshing was not the same John

TerryW: COuld not tie a hook on

duane: Classic Rock?

Coak: catch anything?

TerryW: Catfish

FL-DON: MikeG started horseback riding for the disabled a few months ago. he loves it.

Coak: Good eating!!

TerryW: they were small

Coak: How does he get the disabled horses?

JohnM: I'll stick with my fishing at restaurants.

heyvern: There was a Dutch lady named Corey Ten Boom who survived Auschwitz. When asked how she did it, her reply was: "When life set you on rocky pathways, God provides strong shoes for the journey."

MICH: Terry, I think we all can relate.... and this stupendous KDA you created helps give us a real buz when our andrenoline hasn't kicked in yet!

FL-DON: 5 of us KD'ers are meeting for lunch next sunday

TerryW: I play old tunes from when I did not have this, it takes me back to when I could do things and memories. It helps

FL-DON: Coak, provided by a non profit group to all disabled who want.

Coak: Terry, use a "figure 8" knot....EZ to tie & it holds

Coak: Thanks, Don.

FL-DON: MikeG saw an article in paper and acted on it to ride Trigger

duane: Co workers claim that before KD, I drove like an old lady. Now few want to ride with me. Say I overcompensate for difficulty by driving too fast.

Coak: Say HI to Mike

TerryW: is that a square knot john?

Bruce: Being able to drive - That is something I am very fortuante about.

FL-DON: i drive slow in the right lane, and leave left turn signal on to infuriate locals

duane: LOL

Coak: No - a Figure 8. EZ

Coak: no, a figure 8

JohnM: Duane, that worries more than anything. I can't imagine not being able to drive any more. It would be worse for me as my wife doesn't drive.

Coak: That was you, Don?? #$%^&*

TerryW: One of our wild cats that we feed at the stables gave birth somwhere on the property last night and after chat I have to go find out where she had the,

TerryW: them

FL-DON: //1

JohnM: Coak, we have a lot of them around here. You never know what you will see next.

duane: Terry, Thanks to you ans Susanne for KDA, I didn't have anyone to "talk" to about this disease that truely understood. Ability to share with others on Chat is great.

heyvern: Just cal Terry Gramps now

Coak: Some of them have migrated north

FL-DON: we had a fellow from where JohnM lives enter the xway on a golf cart. the sheriff dept really had to scramble

TerryW: we already have 4 kittens from one of the others from a month ago, and now more

JohnM: We like to see them go but the merchants don't.

TerryW: we have 15 cats here now plus the new babies yet to be found

MICH: Always loved animals around but now have a son-in-law and grandson allergic to animals

Coak: stop looking for them, Terry. Feral cats will make it on their own.

TerryW: we have homes for the 4 already and that moter is getting fixed next Wed

Bruce: We have a dog and a cat. They are constant companions to me. The dog goes with me for wals (scooter rides) every morning and evening. He never talks back and just is happy I am spending time with him.

duane: Did the cats come with the property?

TerryW: yes

TerryW: there were 22 here

TerryW: then the lady across the street cought 16 and sent them to the pound

TerryW: we told her to leave the rest

heyvern: That must be hard to sleep at night when their getting it on

TerryW: Yesterday the cats cought the following and brought them to me, 2 moles, An alligator lizard and a 1/2 eaten rabbit

JohnM: Hope the income holds out Terry to keep them all fed.

duane: Well, they are great for insect / rodent control too!

Bruce: That means you are the alpha male of the family

TerryW: Yes duane

MICH: Terry, do you have any pets in the house?

Coak: they really love you, Terry

TerryW: I get Farm cat feed bags at the supply store, $7 for 20lbs

TerryW: yes we have 3 in house cats that moved here with us

Coak: who carries them? my limit is 4# now.

FL-DON: had to put our 15 year old dog down in a new dog 1 year old, runs everywhere. good company for both of us

duane: My brother "inherited" 9 cats when he bought his property. He has dogs, they all get along. Cats love the dog food

TerryW: ALso they brought a 4 ft snake a few days ago

TerryW: darter

TerryW: garter

duane: into the house?

TerryW: in garage

TerryW: laied it next to the babies

Coak: that's a BIG garter snake

duane: they were proud to show you / give you a present

TerryW: the mother did this

Bruce: They grow them big in Calif.

duane: she was feeding her babies a garter snake?

FL-DON: going to vegas in late july. gonna visit len and jeanne

Coak: Better keep the horse away from the mother cat

TerryW: they get along great

Bruce: Well, I have to run. It is a beautiful 75 degrees and we are going out for the day. Take care, everyone, and stay safe and healthy.

TerryW: they are best friends

Bruce has left the room.

FL-DON: unless they are at their new condo in Buffalo

Coak: Don, that sounds like a good trip. Drive or Fly?

FL-DON: fly there, return depends on if i win or lose

stevefu64 entered the room.

TerryW: I am going to officially end the chat session in 2 mins

TerryW: you can continue to chat though

stevefu64: oh gosh its over

FL-DON: tc all

TerryW: you can still chat steve

TerryW: just wont be logged

heyvern: Well gang, I've got to hit the shower and get ready for my last saturday at work. It's been fun and hope to make it in two weeks

stevefu64: shoot i thougt it started at 9 30 my time

TerryW: :(

Coak: Enjoy Life, you all!