Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript  02-19-2005

Topic:  Open Forum

Host: Bruce Gaughran


Chat Participants:




Bruce: I wonder where everyone is today?

LouLou: It pays to take charge of your own health needs.

MICH: It's a three day weekend for alot of people because of Presidents Day Monday

murf: Presidents day week end

murf: I wanted to talk about the holiday we're planning for this year

Bruce: Amen. Several years ago when I fell backwards on concrete. I had bleeding on the brain. They wanted to keep me in the hospital a couple of days for observation. I refused. My regular doctor told me afterwards that is was probably a good decision.

LouLou: We are looking for snow and rain mixture Sunday night into Monday. I guess I'll be house bound for a while.

murf: You don't need to slip on the ice

Bruce: Holiday ... that is Canadian for vacation, right?

murf: ok, ok

murf: eh?

Bruce: Aye!!!

LouLou: Good job on the cruse info Murf. I printed it all out so I could take my time reading it. GOOD JOB!!!

MICH: Has anyone dealt with being on Medicare and your spouse having insurance as well. Wondering if the regular insurance company will weasle out of copaying??

Bruce: We have had a mild winter down here. It has been great with many days in the 50-60-70's.

murf: Ron - do you think it's something you'd be interested in?

Bruce: I have that situation, Eric. I list Medicare as the Primary and the other plan as Secondary. No problems yet.

murf: I don't know Eric

Bruce: The key is having the doctor, etc. bill Medicare first and then bill the secondary company after Medicare pays their intial portion.

LouLou: MICH--Medicare is the first insurance and the second insurer should pay whatever Medicare doesn't pay. Murf--I was talking to Mary Lou. Sounds great.

MikeG entered the room.

Bruce: Morning, Mike

MICH: MY spouses insurance is United Healthcare, and they are tough to deal with

murf: We are supposed to give the BOD suggestions today for the vacation...all I have checked out is the cruise

MikeG: Hi everyone

murf: Morning Mike

MikeG: Morning Bruce

Bruce: How is life treating you today?

LouLou: Hi Mike.

MikeG: Not bad just the usual balance problems...

murf: What balance? //2

Bruce: YUP ... comes with the turf

MikeG: really!

LouLou: Turf--that is where we find ourselves sometimes. LOL

murf: Right face down in it

MikeG: actually, I don't do too bad as long as I'm touching something.

Bruce: I have been amazed that with both legs out of action how much of an engineering exercise everything becomes. I have to study every move and possible alternative ... evening moving to and from the commode is an interesting adventure.

murf: I need my cane or my chair

MikeG: haven't fallen in months...

LouLou: Bruce--which leg bones did you break? Was it a crack or a break?

Bruce: Walls, chairs, whatever you can put your hands on ... they are all helpful.

MikeG: yep

Bruce: I broke (both clean breaks) the left ankle and the right fibula right below the knee. I have a three inch fracture on the front right shin. I also have a few torn ligaments and muscles to add to the pain.

LouLou: Bruce--can you still do some of your chi exercises?

murf: ouch

murf: how's the cat?

Bruce: Yes, I still practice Qigong every day for about 40 minutes. I cannot do the leg exercises right now or the lower body Yoga stretches, but everything else.

LouLou: The cat is a cast from neck to tail. LOL

Bruce: If I would have fell on the cat, I would be dead today and not have any worries. In this house, the cat comes first, ... then several more things, then Bruce.

Bruce: Oops, I forgot that our dog also comes before me.

MikeG: I consider myself a hybred now - if I need to go a short distance I use the cane. If I need to go over about 200 feet - I use the power chair. Sure makes it a lot easier. Don't have to worry about being able to make it back to where I started from...

Bruce: Yup, sounds familiar.

murf: Same here Mike

MikeG: shopping at Lowes or Home Depot has gotten MUCH better now!

LouLou: At least we are in the line of normal progresion. Not too near the front though.

Bruce: When I still try to walk those big stores, it is so tiring and the concrete floors seem to wear me down quicker.

TerryW entered the room.

TerryW: Hello All

Bruce: Morning Terry

murf: Morning Terry

MikeG: Amen Bruce

Bruce: Sorry to hear about your father. How is he doing?

TerryW: Real Bad, in his last few days

TerryW: On life support

murf: Sorry

Bruce: I am so sorry!

TerryW: me also

LouLou: Is this Terry? If so how is your father?

MICH: Speaking of dogs, my grandkids have a malamute... my last fall was making the mistake of holding on to the dogs rope just as the kids got home... when he decides to much I'm airborne, but if he's tied to my powerchair it's a great dogsled ride.

MikeG: sorry Terry

TerryW: He is on A breathing machine keeping him alive

Bruce: How old is he Terry?

murf: Are you still in Vagas?

TerryW: 65

TerryW: I am home now

Bruce: Wow ... a young man yet

TerryW: He wants to remain on life support a few more days

TerryW: but it does not look good

Bruce: What was the cause of the lung collapse ... if you don't mind me asking?

LouLou: Terry--your father doesn't have KD symptoms does he?

MICH: Sorry to hear about your dad

TerryW: He has COB, and Emphezema and had Bronchitus then he had an attack in middle of night the filled his body with carbon dioxide 80 %and his organs shut down

TerryW: He also had a fat embolism the next day

TerryW: blood clot in lung

murf: That's not good

TerryW: Very Bad

LouLou: How did you travel to be with your father? Did you take your scooter or chair?

TerryW: I drove straight to him 7 hrs

murf: Can the KDA send him flowers?

TerryW: we will wait

TerryW: a miracle may happen

TerryW: his Dr is very good

Bruce: Our thoughts and prayers are with you, buddy

TerryW: Thank you

Coak entered the room.

MICH: Terry, does your dad live in California?

Bruce: Morning John

TerryW: Nevada

TerryW: Las Vegas

murf: Morning John

TerryW: WHats the discussion this morning

Coak: Hi all

Bruce: It is these kind of stories that make you thankful you only have KD.

Bruce: Mike, speaking of dogs, about six months ago I was standing in the garage of my sister's house when there dog jumped up and struck me right above the back of my knees. My knees buckled and I went down ... fortunately I went forward and didn't experience any injuries. It just goes to show that you never know what or when can make you fall.

LouLou: Hi John.

Bruce: Oh, we have just been talking about falls, in general, and the HOLIDAY (Canadian for vacation).

TerryW: Hi John

Coak: LouLou..Is that Ron

LouLou: Yep!!!

Bruce: Yes, but his voice is changing

Coak: mine too

Bruce: Murray, do you want to talk more about the Holiday?

murf: John - what do you think about a cruise

murf: We could raise funds for the KDA

Coak: I'm still on the fence

LouLou: I had alot of trouble getting on the chat as Butch--Soooo I changed my name to LouLou and theymlet me in now. I cheated the caller ID.

Coak: I went on the cruise from hell about 20 yrs ago

murf: Carnival will donate $15 per person

Bruce: I commented earlier that we should ask our associates what their interests are. GIve them a choice and see what happens.

Coak: We had a good time, but 3 people died

Bruce: 3 people! What happened?

LouLou: Hey John--I don't like thoes odds.

Coak: Went to Alaska - got about 2/5 there and the ship turned around & headed back to Vancouver

Coak: lost one universal joint & capt'n thought it unsafe to manuver at Glacier Bay, etc.

Bruce: Good idea

Coak: Lots of older (lol) folks wanted to se Sitka and a revolt/mutiny started

Bruce: Again, how did three people die. You are leaving us in suspense here!

TerryW: I think the captain of the Valdez was smoking a universal joint

LouLou: What did you have to do? ROW ROW Your Boat.

MikeG: Maybe we should look into a cruise in the Caribbean…

MICH: Did the ship tell you whether they'd ever had that many lose their lives before on cruises??

TerryW: when he rammed his tanker

TerryW: I need some comedy

Coak: passanger meeting #1 -- first guy rip w/heart attack (really $%&*ed crowed)

murf: That's what I've checked into Mike

Coak: too long to go on here --- you'ld be bored

murf: I think you told us once before about this John

Bruce: John, you are like a stand-up comic. You hold out until everyone is dieing (no pun intended) to know what happened.

Bruce: Murray, take Mike and Eric through your thoughts

LouLou: John--Are yous staying on your feet lately? How is work?

MikeG: Should be able to get some cheap cruises out of Tampa or Lauderdale.

murf: We could be buried at sea

TerryW: John, what is a fair price to buy a used electric golf cart for?

Coak: ......................end of story ....back in Vancouver 1 day early (they fixed problem at sea (that's when the *!@#ed off really got hot) ..........Capt'n says "you can use ship as hotel"

murf: I was thinking about Galveston as it is in the middle for most of us

Coak: ...............But they forgot to co-ordinate w/customs & no one could get off.

MikeG: Galveston would be good too.

Bruce: Terry, in my neck of the woods, a 2002 or 3 is going for $1,400 to $1,700 delivered with new tires and a body is good condition.

murf: They will sail Nov 28 for 5 days to Cozumel and Playa del Carmon Mexico

TerryW: ty

LouLou: Terry--Carts depend on power, seating, bells and whistles, etc.

Coak: Terry- I got mine for $500 from a old golf pro friend at his club ... It really should be in the 12-11500$$ range

murf: This will be +/- $450 per person and you don't have to send more if you don't want to

Coak: 12-1500

Bruce: I have an EZ-GO with the hill climbing chip. I highly recommend it because it only allows you to go downhill at 15-17 mph and is geared to climb hills.

murf: There is a casino on board

TerryW: I will look around, One guy on the road near us has 2 he is selling for $2500 each and they looked in fair condition. I thought it was to high

MikeG: John Mengel’s wife has one for $1,200 – brand new! He only used it about a week or two… I don't remember what kind it is but it's a nice one.

murf: They will help us sell tickets

TerryW: tickets?

MICH: So long until next time, have to go to my granddaughters powderpuff derby with girlscouts, Terry my prayers are with you and your dad.

MICH has left the room.

murf: and donate $15 per person to the KDA

Bruce: Terry, I tried gas and electric. The electric is quieter and less maintenance, so I chose it over gas.

LouLou: So long MICH--Stay healthy.

Coak: Terry - make sure that there is a close golf club facility & get it there (it wlll break & you will need repair)

murf: Bye Eric

TerryW: thanks for the tips

TerryW: I am going to sign off , I have a few things before the meeting to do

TerryW: Bye all

Coak: The cruise sounds good, Murf

Coak: Bye Terry

TerryW has left the room.

MikeG: bye Terry

Bruce: Terry, go out on the Internet and look around. You will get a better idea of pricing and options. If you want a rear truck-like bed installed, they can run $150-$300 more.

murf: Bye terry

Bruce: Mike, there isn't a week that has gone by that I haven't thought of John Mengel. It is still hard to believe.

murf: We have till the 11th of March to decide

LouLou: Hope all goes well with your Dad.

Coak: I need to really co-ordinate the date 2-3 mos in advance for coverage here at home for Mary's Mom.

murf: Is Mary's mom ok?

Coak: 10-4 about John M. He was a delight!

Bruce: Murray, what is the minimum number of people we need?

murf: 8 cabins but I have booked 15

Coak: Her Mom hasn't walked in 12-14 yrs & she is 100% dependent on Mary here at "The Home"

murf: 7 inside and 8 Ocean view

MikeG: I know - we're going out to lunch with Pauline (his wife) tomorrow.

LouLou: What are the cost ranges?

MikeG: She's not taking it too well - as can be expected.

Coak: Pls say Hi to Pauline for us all, Mike

Bruce: I can't even imagine what she has been through.

murf: We're looking at +/- 450 for indoor and 500 for Ocean view

Bruce: That is for 5 days?

MikeG: will do

murf: That's for 5 days (two at sea)

LouLou: Miker--Please let Pauline know just how mucxh we all thought of John M. What a great guy.

Coak: Murf- The toilet on the Holland America ship was about 12" wide: is this really HC?

MikeG: not a bad price at all!

murf: Did you fall in?

Coak: It also had so much suction that I was stuck there for 2 hours (and that's when I could still get around)

murf: LOL

murf: Sorry

Bruce: My brother with KD has gone a few cruises and he thought the HC rooms were well outfitted if you don't have claustrophibia (sp).

MikeG: let's just don't do it in May - that month is almost solid booked for us.

LouLou: I guess you really enjoyed the suction-----

Bruce: Mike, I believe we are looking at late November

murf: They have handicap facilities on board ship

Coak: Was really funny - until the voice raised 2 octaves

MikeG: that would work

murf: I have booked Nov 28 because that was the cheapest cruise

Coak: Murf; Good time -- after Hurricane season. Is it B4 Thanksgiving?

MikeG: sounds good - I'll pencil it in...

Bruce: Thanksgiving is the 24th

murf: Just after I think John

Coak: That weekend is a %^&*( for airports (end of Thksgvn weekend).

MikeG: how do power chairs and scooters fair onboard?

murf: we will have a choice of poker chips or champaine when we get on board

Bruce: Good thought, John ... or an ugly one!

murf: There are handicap rooms available

Coak: Same $$ ?

murf: Chairs are no problem

murf: Same range yes

Coak: Dpt from ? Galveston?

murf: We will all be on deck 5 together by the elevators

MikeG: sounds great - count me in!

Bruce: Today was sure a light turnout for the chatroom. I wonder what happened?

murf: yes John and they have flight and transfer plans that save money from the airport

MikeG: would we fly into Hobby or Galveston?

murf: If we decide to go we'll need a deposite from everyone by March 11th.

Bruce: Murray, the $450 is per person with double occupancy rooms, right?

murf: either one Mike

murf: That's right Bruce

MikeG: I used to be able to get some cheap fares into Hobby...

Coak: "lightly" pencil me in -- I'll advise in 2 weeks about changing it to a pen.

Bruce: I am just trying to get all the details down so that if someone reads the transcripts, they will have the basic information.

murf: Where are you from Mike?

MikeG: like $120 round trip

MikeG: Tampa

Bruce: That is pretty cheap, Mike

MikeG: but I lived the first 18 years of my life in Park Place

Bruce: What airlines?

Coak: lol Mike

MikeG: Delta

murf: all airlines fly into Houston

MikeG: probably can't get that good a fare nowadays

MikeG: just like Atlanta!

murf: We can also have meeting rooms for free

Coak: Southwest has decent $$ on their Internet specials -- have to check weekly. I just got 2 RT to Anaheim, CA for early June at $94.00 per + tax

murf: If we want to have discussions

Bruce: Again, Murray, you did a nice job of pulling all this information together and for getting the extras thrown in.

LouLou: Murf--Price sounds fantastic for five days plus meals. Good job. We paid more than that just to sleep in NOLA.

MikeG: Amen

Bruce: BWI

murf: Theere are lots more plusses

Coak: 10-4 -- good job Murray. Thanks!!

murf: John did you get the details the last time I sent them?

Coak: BWI to Ontario, CA (10 miles from Anaheim)

Bruce: I like the Ontario airport.

Coak: Yes, but too busy to look at them. Hopefully this weekend.

Coak: Thanks.

MikeG has left the room.

Bruce: But, depending upon the time of day, those 10-15 miles to/from Anaheim can be long miles with bumper-to-bumper traffic. Kind of like 95 through downtown DC during commute hours.

murf: I think we should put a package together for the membership to review when we ask what they think

Bruce: Yes

MikeG entered the room.

Coak: Going to "Abilities Expo" in Anaheim as an exhibitor 6/3-6/5.

MikeG: now I know you can't close the parent window...

wolfman entered the room.

Bruce: This is the two minute warning ... if anyone wants to stay on after 11:30, the chatroom will remain open

murf: The big thing I like is that the KDA could accually make money in it this year

Bruce: Morning, Wolf

MikeG: that IS another big plus

murf: I have to prepare for BOD meeting

Bruce: Talk to you soon

MikeG: yep I've got to go too

murf: Bye all

MikeG: so long everyone - until next time

murf has left the room.

MikeG has left the room.

LouLou: Don't forget to save this great chat, Bruce.