Kennedy's Disease Association

"KDA is One SUPER, Non-Profit Organization."

Kennedy's Disease Chat Transcript  04-02-2005

Topic:  Open Forum

Host: Terry Waite

Chat Participants:

murf
LouLou
coak
denny
Terryw
Bruce
MICH
wolfman
FL-DON

BEGIN CHAT

Terryw entered the room.

Bruce: Good Morning, we are finally starting to dry out down here about two heavy days of rain. It is still cold and windy unfortunately. It feels like Spring came and left. Actually, the trees are in full bloom and every day you see something else turning green.

Terryw: Hi Bruce

Bruce: How is the new hired hand working out?

Terryw: who?

Bruce: I thought you had someone coming in regularly to help clean the barn, etc.

Terryw: He never shows up when he says he going to. I am not going to use him.

Terryw: that's the way my life goes here

Bruce: Sorry to hear that.

Terryw: that;s why I end up hurting myself, trying to do it myself

Bruce: Have you been looking around for a golf cart?

Terryw: they was $2500 for used ones around here

Terryw: to exspensive

Bruce: WOW! Move to Georgia.

Terryw: Maybe, I get so fed up with all that has to be done. And I can't even hire someone

Terryw: Maybe we got in over our heads

Bruce: I could get a one year old cart with several modifications including a electric dump bed in the back for that amount of money.

Terryw: my condition has worsened

Bruce: What is going on?

Terryw: Balance is really gone

Bruce: I can understand that.

Terryw: frustrated with the disease

Bruce: As you know, I am still in the healing process and I use a walker if I have to go more than several feet right now. It helps.

Terryw: wow, almost forgot about that. That must be really frustrating

Bruce: The walker provides me with good balance. I still like using the cane, but I need to be safe right now.

Bruce: Actually, the fall was a blessing in more ways than one.

Terryw: how?

Bruce: I now understand that even if I can't walk any more, I can still get around and perform almost everything I need to from the wheelchair.

Bruce: I actually am safer because I don't puch myself as hard. If there is a choice right now, I use a walker or a chair just to be safe.

Terryw: I can't do that here

Terryw: gravel driveway

wolfman entered the room.

Bruce: When I am outside, I am either on the scooter or the golf cart. Cindy is better off also, because she knows there is less chance of me falling.

Terryw: hi wolfman

Bruce: Has spring sprung up in Canada yet?

wolfman: hello Terry

wolfman: Almost, the last snow left yesterday

Terryw: bruce does cindy work?

Bruce: Is tonight the night we switch over to daylight savings time?

Terryw: yes bruce

wolfman: Yes it is

Bruce: No, she hasn't worked outside the home for 13 years. She works really hard around the house, however.

murf entered the room.

wolfman: around 2 am

murf: good morning

Bruce: Morning, Murray

Terryw: I wish susanne did not have to work. It would make things much easier for me

Terryw: she works 12 hrs a day

Terryw: hi murry

LouLou entered the room.

Bruce: Morning, Ron

murf: Hey Terry

LouLou: Good morning all.

murf: Morning Ron

Coak entered the room.

murf: Morning John

LouLou: How are you guys doing? Hope all is good.

Bruce: Another thing that helps me, is our neighborhood. I have several friends located around the lake and I spend several hours most days just shooting the breeze with them. It helps.

Bruce: Morning, John

Terryw: I hired window cleaners and they have cancelled 3 times on me in the last week

Coak: good morning men.

Terryw: I guess I will have to try to do it myself again

Coak: Who will save this chat?

Terryw: I will

Coak: thanks

murf: I guess everyone is doing some spring cleaning

Bruce: Wolfman, where is Suntre located?

Coak: Whatever you do Terry, don't do windows!!

Terryw: I cant see to get anybody to do anything up here

murf: Hard to get good help these days

Terryw: Our XMAS tree is still up

Terryw: fake one though

wolfman: about 100 miles NW of Calgary in the foothills,Bruce

murf: Save for next year?? LOL

Coak: Terry: it does seem that you are "alone" there, without the help that you were used to.

Bruce: That must be frustrating. We have some good neighbors that have painted our living room, cut down trees, sprayed the weeds, etc. We couldn't be more blessed with thoughtful neighbors and friends.

murf: I just hired guys to do my trees

LouLou: Hi John, Bruce, Terry, Wolf, Murf, what is your weather like? Pray for the Pope.

Coak: Wolfman: do we know each other?

Terryw: Yes with susanne working so many hrs I hardly see her. Many of you have wives at home I think to help out with theings, Susanne wishes she could be home with me to help

Coak: Hi Ron

murf: 58 and clear. looks like its going to be a nice day

wolfman: don't think so, I live in Alberta

Terryw: It's going to 75 here today

Terryw: clear

murf: wolfman - say hi to red deer for me

Coak: rain here in the East -- expect total of up to 2"

wolfman: sure will, nice place

LouLou: It is 46 and raining here in Penna.

Bruce: I have only been Calgary once. I spent quite a bit of time in Saskatoon and Prince Albert, however.

murf: Nice place to be from LOL

murf: its a little warmer here in Houston

Terryw: Bruce I have a good neighbor who is 80 years old that helps me, but I don't want to burden him all the time. He is a tough old guy but his health just turned lately, lung problems

Coak: Terry: we did not see an announcement about today's chat.

wolfman: can't be, it is nice every where.

murf: I just had my dad doing things arond the house I couldn't do

Coak: Do you think others might have forgotten?

Terryw: I have been pretty busy so much to do I guess it must have slipped

murf: Like fixing the fence and changing light bulbs

Coak: I'm wiped out for the day. Just changed a light bulb!

LouLou: What did you change it for?

murf: I bought a poll for that John

Coak: Murf: think Mom & Dad might want to stop in here for a few days?

LouLou: Hope you got something good.

murf: Sorry their already to far north. LOL

Coak: Ron, you're too quick for me.

Bruce: I never ask the neighbors for help, they just seem to come out of the woodwork when something needs to be done. They might be weeding their yard and then drive up and see if they can do ours. They see it is Spring, and they come up and ask if they can spray for weeds. One neighbor, took down a large dead tree, cut it up, split it, and stacked it for us. We didn't even know he was out there until we heard the chain saw.

wolfman: Coak, where do you live?

Terryw: Is the pope still hanging in there

denny entered the room.

denny has left the room.

Coak: Maryland -- Westminster (about 42 miles NW of Baltimore)

murf: Ya, hes in and out this morning

LouLou: Bruce--just goes to show you that nice things do happen to nice people.

murf: Ron did you fill in the "fun pass"?

denny entered the room.

Bruce: We feel we are blessed. I couldn't believe the out-pouring of goodness when I fell. Food was being delivered to us, people came from all over to play card games, etc. Wow, it was tough to take emotionally.

Terryw: My neighbor asks for noting in return, just friendship. I wish more people were like him. I am going to nominate him for the local papers "Person of the week"

Bruce: Morning, Denny

Coak: All: Don't forget to move time one hour ahead tonight for Daylight Savings time.

denny: good morning.

Terryw: hi denny

Coak: Hi Denny

Bruce: Denny, are you pulling for Louiville tonight?

wolfman: hi Denny

murf: Bruce - you're very lucky to have friends like that

LouLou: No, not yet. I did call Claudia and she said she did not have the deposit yet.

murf: Morning Denny

Bruce: Yes, and I thank the good Lord evey night.

Coak: Terry, could you advertise locally for part time "after school" yard work?

murf: Ron - I put $1200 on my credit card She better have it!!

denny: Hi all.

Terryw: I think I need to put up an ad at the ocal churches

Terryw: local

Coak: Good idea

Bruce: When my brother, Gus, couldn't do anything any more and Sondra was working, they contacted a Boy's Town near them that often provided help (mowing, etc.).

LouLou: Murf--Claudia said that John Williams was signed up. Is that TJ? Are you going?

Bruce: You might also think about the Boy Scouts. There is probably a troop in the area. You could make a donation to the troop for some help around the homestead.

denny: I'm just looking forward to going to the Red's opening game on Monday.

murf: Ron - go to the link I provided and plug in your personal booking number

LouLou: OK.

murf: Ron Thats me

Bruce: Terry, there might even be some merit badge available for animal husbandry, etc. that would help them achieve awards.

murf: We have 8 cabins booked so far

MICH entered the room.

Bruce: That is great, Murray

Terryw: I have to find help somewhere

Bruce: Good Morning, Eric

murf: Crulety to cub scouts? //2

MICH: Good Morning Guys

LouLou: If anyone needs help with a project--contact your local LIONS club. If they can't help I'm sure they can find you help.

Terryw: hi

Coak: Terry, people really want to help. They just need to know about the help that's needed.

murf: Morning Mich

denny has left the room.

Coak: Hi Eric

wolfman: Morning,Mich

Terryw: John I was telling bruce earlier that the guy I was hiring does not show up 2 of the 3 times I hired him

Bruce: Sit in your wheelchair next to a busy road with a cardboard sign that says, "I'LL PAY FOR WORK!

FL-DON entered the room.

Bruce: Morning, Don

Terryw: Hi DOn,

FL-DON: gm all

Terryw: See, who needs chat reminders. People know by now when the chats are

Coak: I had the yard dug up (Septic tank problem) this week. I have a pile of mud/dirt abouit 25 x 25 feet and 2 ft high that needs some moving around.

murf: Bruce - some might hire Terry if he does that!

Coak: Hi Don

FL-DON: hi john

Bruce: Don, I hope I didn't offend you a couple of weeks ago with my attempt at a joke from a favorite western of mine. (Badges, we don't need no stink'n badges)

LouLou: It is hard to find a handyman to do small jobs. Every one wants large jobs to make a good salary.

FL-DON: np

FL-DON: no

Terryw: and now my new Sears garden tractor broke a fron wheel spindle Thursday

Terryw: and the field grass around here is really growing fast

Coak: that's why God made repair men

denny entered the room.

Terryw: one will be here on the 15th

Terryw: thats the soonest

murf: They just don't make 'm like they used to

Terryw: weld broke

Coak: 15th?? that's 2 weeks out.

FL-DON: was a mess around here with the terri schiavo rucuckus

MICH: I'm continually amazed how my wife has become the one to pick up the slack since I've gotten weaker... lifting pianos... etc

LouLou: Usually the weld is stronger than the original metal.

FL-DON: would be a great chat topic "end of life wishes"

Bruce: Don, I can't even imagine. That issue polarized the entire country.

Coak: Don: close to you? I didn't realize that.

Terryw: Don these days those wishes have to be very specific

FL-DON: seems like every issue these days divides

murf: I'm re-doing my will because of it

FL-DON: bothn judy and i have end of life instructions

FL-DON: right terry

murf: Its on the Communist News Network (CNN) now

FL-DON: i want my wife to control, not some politicans or do gooders

Bruce: That is funny, Murray

Terryw: I have my end of life instructions written in English, Spanish, German, French

LouLou: The Pope is being hydrated and fed thru a feeding tube, but no other measures to sustain life.

wolfman: I have had my instructions in place for a couple of years already.

Coak: Terry: Planning a trip somewhere?

murf: LOL

Terryw: Just to be safe,

FL-DON: i haven't watched cnn for years

Coak: I just want to be propped against a tree in the yard on a nice day.

FL-DON: nor pbs

Bruce: ANd even with everything in place, it doesn't mean your wishes will be granted.

FL-DON: right bruce, family can contest a will

murf: TJ was looking forward to the chat this morning. I don't see him

LouLou: GET IT IN WRITING. At least you have something to fall back on.

Terryw: Put in the will that if any family member contest the will they are diowned

Terryw: disowned

Bruce: All you can hope for is that they will read and abide by your wishes when the time comes.

Bruce: A good one Terry

Coak: lol

FL-DON: //0

murf: I'll haunt them if they don't

LouLou: So much for dying--How are things going to make it easier to live?

Coak: now that's scary, Murf

Bruce: Cindy always threatens she is going to haunt me .. but for other reasons, I thinki.

murf: Boo

Coak: Good segway, Ron

FL-DON: who is going to win the NCAA?

Coak: There are a series of Abilities Expos coming this year

Terryw: I want some of those wires hooked to me like in the movie Crouching Tiger Hidden Dragon so I can get around the property easily

LouLou: Where would we be with our care givers. Hope everyone has that "someone" to help.

murf: Any one heard news on the clinical trial?

Bruce: Has anyone had any experience with the "Australian" crutches? I think that is what they are called. They look like the crutches that polio victims use.

MICH: MICH STATE!!!!! is going to win the NCAA

Coak: I understand that many new things could be there for assistive help & info.

FL-DON: i like MSU also

Bruce: Tar Heels all the way or Illinois, or Louisville, or MS

LouLou: Mich--I agree.. Go Mich State.

Coak: yea Mich

Terryw: Be right back

Bruce: I can't quite make up my mind. I just want to see as good as games as we saw last weekend.

FL-DON: we went to abilities expo in orlando last year. parking over 1 mile from hall. go figure!!!

LouLou: Don't take too much of my choice--for I thought the Eagles would win the super bowl. LOL

Bruce: One mile? WOW

FL-DON: eagles will never win with that qb

Coak: clinical trials not scheduled yet: still working out details.

murf: ok

FL-DON: clinical trials on what?

Coak: I spoke witth NIH 3 X this week.....nothing set yet.

murf: NIH are talking about trials on a few drugs

LouLou: I called NIH last week to see DR. Fischbeck. They have not set up a time as of yet for him to see me.

Coak: They are on a track with an already approved FDA drug that is OK'd for something else.

wolfman: dHow expensive are your meds down there?

Coak: But the protocol & approval for the test with KDA is not yet ready to begin.

Coak: not KDA but KD men.

murf: Wolfman - you need a good medical plan here

Bruce: I need to take my dog for his 11:00 run. He is prancing outside my window letting me know it is time to go. Priorities Gentlemen ... I am certain you understand. Stay healthy and happy and hug that special person in your life.

LouLou: Don--How can they expect someone with major disibilities to walk that mile. By the time you get to the building, you are shot for the day.

Bruce has left the room.

Coak: bye Bruce

murf: Bye Bruce Take care

FL-DON: i had my scooter john, but many others did not.

LouLou: Stay healthy, Bruce.

Coak: Don, none in FL this yr

FL-DON: judy was bushed though

FL-DON: always next year

Coak: Ron: there is one in Edison, NJ on 4/15-17 at a place called the NJ Convention Center in Edison.

Terryw: I am back

Coak: Murf: they just added one in Houston sometime in Nov (I think).

FL-DON: where is kda convention next year?

Terryw: I am so taking Viagra so I won't fall. It keeps me upright LOL

Terryw: now

Coak: lol

Terryw: Bad Joke

murf: LOL

LouLou: Maybe we should attend John. LOL LOL LOL Terry!!!

FL-DON: //10

Coak: Don, have not gone to next year yet.

LouLou: Terry--be sure to swallow the pill quickly for if you don't your neck will get stiff. LOL

FL-DON: k tu

Terryw: hehe

murf: Don We're going on a cruise in November in stead

FL-DON: i heard

Coak: Ron, I'll be there each day. I'll send you an email later today.

LouLou: Thanks.

Terryw: Don, There is a casino on the ship

Terryw: :)

FL-DON: on cruise next week

Coak: Don: would you like to set up a Conf in FL?

FL-DON: doing las vegas in fall

FL-DON: big casinos there

murf: And lots of them

LouLou: Don--Don't say FALL to KD guys.

FL-DON: i just got voted in to a 3 year stint as a commissioner here in sun city center. taking on no more jobs till term is over

FL-DON: busy as hell now

FL-DON: lol, ll

Coak: Do we have to call you SIR now?

Coak: ...or Commish?

FL-DON: naw, dummy is appropriate

murf: Sir Don

FL-DON: my chance to give back to a community. never had the time be4

Coak: that's great! It's good to be able to give back.

LouLou: Every good team needs a good leader--Good job Don.

FL-DON: yup. 10,710 seniors here, many too old to serve anymore. younger residents like judy & i turn to do it

FL-DON: they are crabby, but appreciate what we try to do

Coak: I should send you a case of canes in July

LouLou: 10,710---Wow, what a huge gathering. Are you all in a community area?

FL-DON: had a guy in office crying last week, cuz i got him a new volleyball net he had been trying to get for 2 years. then he left and ran over a new stop sign i got, which we just installed, lol

murf: John - you owe me one

FL-DON: yup, city like setting

Coak: I know, Murf.....July

murf: ok - a new model?

Coak: lol, Commish

Coak: 10-4. One of the first ones.

murf: a bigger motor?

Coak: 10-4

murf: bigger wheels? LOL

FL-DON: well, time to take judy to a play and lunch. you all take care.

Coak: Hi to Judy

murf: Bye Don take care!

FL-DON: will do john

LouLou: So long Don--Stay healthy till next we chat.

FL-DON: bye all

FL-DON has left the room.

MICH: You all haVE A good day... what time is the final four on??

LouLou: Isn't it amazing how the internet and TVB has made this old world so much smaller.

wolfman: Good bye all til next time.

LouLou: Tv not TVB. OOOps

Coak: By Wolf

murf: Ya big time

LouLou: So long Wolf.

murf: Byr wolfman Take care

murf: Bye

wolfman has left the room.

wolfman entered the room.

LouLou: Terry--aren't there any teenagers in your area who could use some bucks and would be willing to do odd jobs. Contact the high school in your area.

wolfman has left the room.

Terryw: Am looking

MICH has left the room.

MICH entered the room.

LouLou: It pays to advertise.

MICH has left the room.

Terryw: closest highschool is 10 miles away

Terryw: in anothr town

Coak: Terry, I like the idea of talking to a few Church pastors. They really are tuned into who is both good and needs a job.

LouLou: Go MSU.--Terry--didn't realiZe that. WOW...

Coak: ..............because you need someone dependable.

Terryw: yes

denny has left the room.

murf: BOD meeting

LouLou: Murf--once again good job on setting up the cruise. Thanks for all your hard work.

Terryw: thanks murf

murf: no work .. just fun

Terryw: I am going to save the chat now