Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The site is essential for a source for the general public, whenever one encounters the diagnosis of Kennedy's Disease and has no idea what that might be. There is simply no other source as easily available to the public."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript  06-04-2005

Topic:  Open Topic

Host: Terry Waite


Chat Participants:



Chat provided by

Terryw entered the room.

You are in Kennedy's Disease Chat.

There are 2 people in the room.

Terryw: Hello

wolfman has left the room.

wolfman entered the room.

Terryw: hi

wolfman: Hello Terry

Terryw: we are early

wolfman: better that than late

Terryw: I think I will go to the kitchen and get a cinnamon roll

Terryw: be right back

wolfman: sounds like a fine idea

LouLou entered the room.

LouLou: Good morning Terry and Wolf. How are you all?

Terryw: hi I am fine

LouLou: Terry--Thanks for staying on as treasurer of the KDA. You always do a good job.,

wolfman: doing good brb

Terryw: thanks

Terryw: I went out to the lake with the boat yesterday, perfect weather

Terryw: did some fishing & swimming

Terryw: caught no fish though

LouLou: What happened to Bruce? When did he fall? Did you catch any fish and what kind?

Terryw: last week I think

LouLou: Terry--when you go swimming in the lake do you have a hard time getting out of the water?

Terryw: I guess I have been lucky that when I fall that I have not broken anything yet

wolfman: I am back

Terryw: my boat has a extended swim deck that sits at water level, I have a ladder that I stand on and a grab bar that u use to pull myself up onto the swim deck

LouLou: Wolf--I forget--where are you from?

Terryw: pretty easy

wolfman: Sundre, Alberta, about a 100 miles NW of Calgary.

Terryw: I should post pictures of my boat and how I get in and out of the water

LouLou: Good exercise not only in the water but getting back into the boat.

Terryw: getting in is easy, just fall in

LouLou: Wolf--we have about 15 contacts from Canada. You all are represented pretty good.

Terryw: Wolfman what have you been doing lately

wolfman: I only have Kelly as a contact

wolfman: Not too much, weather is finally getting warmer and I get out a lot more.

doughboy entered the room.

Terryw: that's good

Terryw: hi doughboy

doughboy: Good Morning everyone!

doughboy: Murray not shown up yet?

Terryw: nope

LouLou: Murf must have had a real good or a real bad night.LOL

doughboy: He e-mailed me about 4 times yesterday reminding me about the chat and he's late, he won't here the end of this one!//4

Terryw: LOL

doughboy: Did everyone read about the new drugs they are trying on mice that seem to be working?

Terryw: Last weekend we went to Yosemite Park and Kings Canyon & the Giant Sequoia's

Terryw: the water is overflowing

Terryw: snow melt

Terryw: no doughboy

Terryw: do tell

wolfman: Lucky you, I always wanted to go there TerryW

LouLou: Terry--what did Bruce injure in his fall? The south and west are really getting the rains.

Terryw: I am not sure how he did it.

Terryw: if he shows we will ask him

doughboy: Did Bruce have an accident? I talked to him Wednesday and he didn't say anything?

LouLou: Terry--Did you get my bio and story?

Terryw: yes I did, thanks

LouLou: Is it OK?

doughboy: Terry, I heard parts of California are really having problems with runoff's, how's your area?

Terryw: I have not looked at it in detail yet as I was pretty tired when I got back from the lake but I am sure it is fine

Terryw: My area is fine. I am on high ground

Terryw: dough , yes bruce fell and broke some bones again

LouLou: How is Susanne's arm healing? Is she doing OK?

Terryw: I forget which ones

doughboy: I was reading a MD article that Murf sent to me yesterday about a lot of clinical trials using medicines that already exists on ALS patients and they seem to be encouraging.

Terryw: Yes, Susanne had the pins removed from her wrist on Wed. she is now in a Velcro forearm splint and healing well. now therapy starts

Terryw: I hope Murray is OK.

denny entered the room.

doughboy: Also for the last week and a half I have been getting massages at the Sports medicine center and it really makes me feel better. However, having said that, this past Wednesday was my last day of work. Sure was a hard decision.

Terryw: Hi Denny

LouLou: I have a shirt which says--Help I've fallen and I can't reach my beer.....I'll have to send it to Bruce.

Terryw: Yes, leaving work is a hard decision. I miss the interaction with the guys I worked with a lot

Terryw: wish I could still work

denny: Good morning.

kelly entered the room.

Terryw: Should I call Murf and see if he is ok?

Terryw: Murf

doughboy: I hope Murf didn't fall and break his other foot going to the computer, LOL. Yes, it was very hard I had lots of people getting teary eyed with me and exchanging e-mail addresses, it was tough, especially since I loved working for the Highway Patrol!

Terryw: brb I will call

LouLou: Hi Denny--you will be glad that you chose to retire..It is really a struggle sometimes for the tasks we must do for our work.

doughboy: Yes, my heart said keep on going, my body said no!

doughboy: Terry, r u calling Murf?

LouLou: doughboy--TJ--same right?

doughboy: It's not long distance for me, I can call! Yep , that's me

kelly: good morning all

LouLou: Hi Kelly. How are you?

Terryw: Murf will be right here

wolfman: Hello Kelly,how are you?

doughboy: Hey Kelly, How are you and how are you, Lou Lou

kelly: fine thank you a little sore today??? but ok

murf entered the room.

LouLou: Good!!!Glad to see warmer weather here in Penna.

Terryw: there he is

murf: Sorry I'm late

doughboy: Bout time, you old Fart!LOL//2

murf: Morning all

murf: Morning TJ

LouLou: Murf--what is your excuse? Make it good.

murf: I got tied up filling in the last of my flex account

doughboy: I told terry and the others you e-mailed me so I would be on time and now you're late, what gives?

murf: Glade you made it on time TJ

Terryw: Should I start sending out chat reminders again or do you think most know the schedule by now?

Terryw: what do ya think?

kelly: should still send it terry for awhile longer?

LouLou: I told you not to stay up all night counting your money!!! !LOL

Terryw: OK I will start back up

murf: I knew it was today and got up early had breakfast and still missed

kelly: thanks terry u know us Canadians lol

Terryw: Eh?

doughboy: Hey Murf, retirements not too bad, however since my income is not good right now until I get SSDI, is lunch on you? We can go to James Coney Island for hotdogs! LOL//16

murf: Thanks Kelly//0

kelly: no problem

murf: No problem TJ

kelly: //35

murf: What are we talking about today?

Terryw: anything & everything

doughboy: I don't know but I read the articles about the clinical trials going on

LouLou: Wolf are you still here? Haven't heard from you lately.

murf: Cool. No new news for the cruise

wolfman: Yes I am here, just got settled in.

Terryw: I ran into my first Rattle snake on Tuesday. I was standing 1 ft from it

Terryw: it was a baby 1 footer

doughboy: I talked to Bruce , Wednesday and he is supposed to be getting more info next week and fill us in on our clinical trial in Maryland.

murf: Did it let you know?

Terryw: I was lucky

Terryw: had the start of 1 rattle

Terryw: they are very dangerous

Terryw: no control over release of venom

murf: The babies are the worst

doughboy: We kill catch them here in TEXAS for fun!

Terryw: I cant believe I was that close and did not know it

murf: I was picking up copperheads here till I found out

LouLou: Will you run or just hit it with your cane?

Terryw: I backed away slowly and got a shovel

murf: Just don't fall down

Terryw: smashed it's head

doughboy: Most of the time, seriously, if you move slow and leave them alone, they won't bother you

murf: Was it in your yard

Terryw: yes

murf: Snake traps!!

Terryw: I have 14 cats

Terryw: I had just locked them all up

Terryw: locked

murf: That should do. How many mongooses

LouLou: My movement would be slow---bowel movement--LOL

Terryw: 0

doughboy: Hey Murf, I'm thinking about getting rid of my new car and getting an SUV, do you know which SUV will handle your power lift?

Terryw: to much info

murf: I'll have to look in consumers

doughboy: Okay, Fine!

murf: You need to pick out a chair first

murf: Then go for something to hall it in

doughboy: Does that matter, they are not all the same?

murf: no Just like cars aren't

doughboy: I guess maybe I'll go look at them today!

murf: I can help you decide

doughboy: How?

murf: I'll send you a list of websites you can check out

doughboy: Thanks, ole bud!

murf: You'll be online all day

doughboy: Hey, Murf, those massages I have been getting really make me feel good!

Terryw: does anyone have lower back pain in the early morning hours after sleeping for about 5hrs. I do it seems my back muscles get real tight and if I get up and stretch them and then lay back down I am ok for about another 2-3 hrs until I get up

murf: positive attitude buddy

murf: Yes but I think it is my bed

doughboy: Seems like it's put more energy in my legs! Yeh, mine does Terry

Terryw: It really bothers me

murf: I have to stretch in a chair when I get up

Terryw: hurts from lower back to the hips

murf: Me too

doughboy: Hey, Terry my massage therapist showed me some stretching exercises for my back to untighen it and they seem to help

LouLou: I think I sleep more now and that is why my back hurts more.

doughboy: maybe you could go see one

kelly: legs stretches are good for spasms

Terryw: I should

murf: Ron - the longer I sleep the more my back hurts too

wolfman: same here

doughboy: My neurologist gave me a prescription for massages and it doesn't cost me a penny, my insurance pays for it!

Terryw: I have been taking a darvocet

Terryw: lucky TJ I wish mine would

doughboy: I take Ultacet

murf: If I spend 2 hrs on the couch watching a move then go to bed I'll guarantee a back ache in the morning

doughboy: Do you know if they will or not!

Terryw: I never asked

Terryw: I will next time

doughboy: Might be worth while!

LouLou: Does Bruce still do Chi Gong? Wondering on account of his recent falls. I'll have to ask him.

doughboy: Good point!

murf: TJ My house tax just went down 1500/yr

doughboy: Did you do what I said

murf: Ya they sent 700 back to the mortgage company

LouLou: I wish Penna had the disability tax law.

murf: Then They sent me a check for 900

doughboy: How come you didn't get a 100% of it frozen, you're allowed up to 10,000.00 in Texas. I just received another refund back from the tax office for 2003 taxes I had paid.

Terryw: be right back I have to go let the horses out

murf: I'll have to phone again

murf: I pay 1 tax now instead of 5

doughboy: Boy, I guess you are buying LUNCH. Lobster sure sounds good, with some crablegs on the side//2

murf: Still have to pay for the schools

LouLou: TJ---What happened to the hot dogs?

murf: Coney Island

doughboy: NO, No, No, if you received the taxes back from the county, you will get the same on the school, don't let them screw you! What hotdogs! LOL!//6

LouLou: Murf was going to treat you to lunch.

murf: Do I have to call them too?

doughboy: Plus they will give you the taxes back you paid since you were diagnosed!

murf: If I do I'll buy for everyone!!

murf: 1 hitch................

doughboy: Yes, you do Murf, they ain't going call you and offer you money back!

murf: I'm buying here in Houston

doughboy: No problem

murf: or area

LouLou: I'll take you up on that in Nov. when we go on the cruise.

doughboy: LOULOU, what hotdogs?//28

murf: No probs Ron

murf: There is a great restaurant by the ship in Galveston

kelly: got to go all bye

kelly has left the room.

murf: See you Kelly Take care

doughboy: Hey, Lou, we can go to Ruth Crist Steakhouse!

LouLou: TJ--you said Murf must treat you to a Coney Island hot dog for lunch.

doughboy: Where u going Kelly

wolfman: Bye Kelly

doughboy: Memory must be going Lou, don't remember that one!//15

murf: I have a picture I'll send you TJ

doughboy: A picture of what Murf, I don't need one of you, I still remember what u looked like from when you came over last week!

murf: Its a baby wiener dog sitting on a bun

murf: HOT DOG!!//2

doughboy: Does it look like rain over at your place, Murf? It does at mine! Bite Me!

LouLou: Murf--did you hear anything more from Dr. Sharu Chen about being able to come aboard the chat.

Terryw: OK I am back

murf: Its getting dark

murf: Not yet Ron I'll wait till the 13th then I'll try again

Terryw: Murf I will save this chat

LouLou: She will do a good job of sharing info with us.

murf: Once I get Dr. Chen I'll put out a call to the other researchers and dr.s

murf: Thanks terry

murf: You get me and I get you

Terryw: I have to post this one and the past 2. I have fallen behind

murf: we make a good team

LouLou: What happened to Kelly-----where are you?

doughboy: Terry, how's your chest muscles been doing? You know mine have been terrible but my neurologist gave me an anti-inflammatory medicine for it and they are 300% better. He said it was the cartilidge that was inflamed! You might want to try that.

murf: he logged out Ron

Terryw: My chest muscles only hurt when I stay up to long or over do it

doughboy: Are you able to sleep on either side without them hurting, I can't?

murf: You guys are luck...I don't have any

denny has left the room.

doughboy: Any What!

murf: Take care Denny

murf: Chest muscles

murf: just chest fat

Terryw: although they did hurt the past weekend when we spent the days at about 10,000 ft above sea level and driving the winding roads. the muscles got sore from boththe altitude and the constant fighting the curves to sit up straight in the car

murf: Terry - Ron did you get my e-mail for KDA Canada?

doughboy: Murray, call me after the chat on my cell phone, I want to discuss something with you, please!

murf: ok

Terryw: yes thanks, good point in the e-mail

Terryw: thanks

murf: ok

LouLou: Murf--Yes I did--Thanks.

murf: wolfman - how is Canada?

doughboy: Hey Ron, Weaser says she can't wait to see ya on the cruise! Says you are a lot of fun!

murf: I confirm Ron

murf: wolfman??

LouLou: TJ--Your whole family is a bunch of nuts--always have a good time!!!

wolfman: I wish we had a close knit bunch like you have down there, I can see it helps a lot.

murf: Houston calling wolfman - make one

Terryw: we have had many new KDer's join this past month

murf: Tara and others in Canada want to

Terryw: about 10

wolfman: will give that a try, murf

murf: That's great Terry

murf: Its worth it wolfman

doughboy: Yes we do have a lot of fun! We are a very close family, Weaser just moved up to Sterling , Virginia

wolfman: I can see that,

murf: But she's in Canada this week, right

LouLou: See--she is running away from home.

murf: no...running away from TJ

murf: LOL

LouLou: LOL

murf: //6

murf: I hope Bruce is doing better!

doughboy: It does help, Weaser told me the other day that she asked God, why he didn't give her the disease instead of Bill and I. I told her that was sweet, but wouldn't helped anything if she had it! Yes she is and tomorrow she flies to Nova Scotia

Terryw: me to

doughboy: Bite ME, Murf! LOL

murf: I love ya bud

LouLou: Wold--you must have a meeting with the others from Canada. Make it someplace easy for all to get to.

doughboy: Dito, pal!

LouLou: Wold--should be Wolf

murf: He had a very bad break

wolfman: anyway, enjoyed chatting, cu next time

doughboy: Terry are you going on the cruise so I can meet you too?

LouLou: So long Wolf--stay healthy.

doughboy: By wolfman

murf: Take it easy Wolfman

Terryw: We will not be there this year, sorry

wolfman: didn't see your remark,yes we have to do something about that

doughboy: Oh, man I sure was hoping you would be!

Terryw: next year

wolfman: yup, take care.

doughboy: Weaser, said you and your wife were very knowledgeable about KD

Terryw: OK I am going to save the chat session now