Kennedy's Disease Association

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Kennedy's Disease Chat Transcript  11-18-2006

Topic:  Open Forum

Host: Murray Williams

Chat Participants:




Murf: Morning Dart

Murf: How's the weather up there?

Dart!: G'Morning Murray

Dart!: A clear day, a good one to keep!

Murf: Great! beautifull counrty

Murf: I used to play alot there and the west coast of the Island

Dart!: 9 degrees of freezing, but is supposed to go to 3 degrees above.

Dart!: What did you play at?

Murf: 62 now in Houston going to 72

Murf: Fishing, I bought a 25 ft cruser and took it fishing twice a year for salmon

Dart!: 62 would be about plus 25 celcius, right? I am still having trouble with that conversion.

Murf: 20 lb Coho and a 42 lb King (my biggest

Murf: Yes about that

Dart!: That must  be quite an adrenalin rush to hook onto something like that!

Murf: Of course I can't do that any more

Dart!: You would not have wanted to be out there this past while - the winds were very strong.

Murf: Big time the 42 lber I had a very light gear (20 lb test and a rig for Sockeye

Dart!: So your 'fishing in your mind' now? At least you have memories!

Murf: Even with the 25 fter whitecaps kept me home

MICH entered the room.

Murf: Yes memories

Murf: Morning Mich

Dart!: Friends in Saskatchewan  pulled in a 60#er

Murf: WOW

Dart!: Morning Mitch.

MICH: Good Morning Murf and Dart

Murf: I don't do much hunting or fishing any more

Dart!: It swallowed a 25#er that was already on the line.

billeric entered the room.

Murf: I've heard of that happening before WOW

MICH: Bill, how's Sunny Arizona

Murf: Morning Bill

billeric: Good Morning guys from Phoenix

Dart!: H'lo Bill - I hope that today is going to be a great day for All!

billeric: Compared to Minn. Az. is wonderful this time of year.

Murf: 62 in Houston & sunny

MICH: Yes..GO Mich

billeric: You doing o.k., Eric

Apache entered the room.

Murf: Dart- conference next year in Las Vegas Nov 6-8 , You coming?

Murf: Morning Jerry

Apache: Good Morning

Dart!: I doubt it Murray - I stick pretty close to home.

billeric: Is that pretty firm Murf?

Murf: It'll get you out of the cold weather for a week

Murf: Mostly, Is it not good for you?

MICH: Not bad..but seems like foot neuropathy...PAD (PERIPHERAL ARTERY DISEASE) and RLS (restless leg syndrome) but that's just what it feels like interpreted by the ads I see on TV

Murf: Hotel prices were to good to pass up and SFN is in San Diego so we have the doctors

Gary_KS entered the room.

Murf: Morning Gary

Gary_KS: Good morning, all,. Gary Uchiyama joined from Kansas City.

Dart!: A week of warm in mid-winter is a teaser for a Canadian.

Murf: I know //2

Gary_KS: Good moring, Mufr.

JoeK entered the room.

Murf: Morning Joe

Murf: Joe - is this your first time here?

JoeK: good morning from Greensboro, NC

JoeK: No

billeric: Murray, Is the confernce in Las Vegas next Nov. pretty firm?

Murf: Sorry - I work with a guy named Joe K (different guy)

Murf: Some what firm is it not good for you?

JoeK: I'm Joe Kerley

LenJ entered the room.

Murf: Hi Joe  good to meet you I'm Murray Williams

johnweeb entered the room.

billeric: Hi Len.

LenJ: Hello everyone

Murf: Morning Len & John

johnweeb: hey

Murf: John Vegas will be close for you next year

LenJ: Murf--what's the hot topic for today?

Murf: Open form today - what do you what to talk about?

billeric: Lots of good news this week regarding stem cell transplants and M.S.  Maybe we are next!

Murf: Fishing - 2007 Conference...

johnweeb: anyone been in the NI study?  i go   12/6-7

JoeK: has anything been poster about the Atl. conf.

Murf: Great I've been

LenJ: I go 12-12 NIH

Apache: I am in the study

Murf: You'll be wering my belt LOL

Apache: I had to

johnweeb: what was it like murph?

Murf: I go back for second visit on the 18th Dec

MICH: I heard on the TV one morning this week that some European county was curing a dog that had muscular dystrophy...but didn't get all the details

johnweeb: did nih offfer hioe?

LenJ: Mich--yes with their own stem cells

Murf: You'll like it its very easy and the only thing that hurts a little is the electro shock therapy

Murf: //2 //2 Just kidding

johnweeb: heh heh

Murf: I heard that to Mich

MICH: Len, thanks for the info...I went to Jamesville-Dewitt HS near Syracuse, NY

johnweeb: what is the drug nih gives?

Murf: Len - was that dog stem cells?

Murf: Sugar or Avadart

Murf: No one knows what you get

Apache: The NIH gives Dutasteride or Placebo

LenJ: Mich  My brother in law lives in Clay  previously in Dewitt--I'm now in the Buffalo area formerly las vegas

Dart!: The hint as to what was used is if the patient barks!

Murf: Thanks Jerry Thats correct

billeric: Is that taken by mouth, Murf?

LenJ: Murf  yers dog but they think human treatment isn't far away

Murf: LOL

Apache: Hes, It is a pill

Murf: Yup

johnweeb: ah. been hving a lot of leg/ankle weakness lately. falling down. typical of  others or...?

JoeK: hay don't laff------- before the dna was completed on me they test me by sticking needles and measureing time it took for the signal to go from point to point.

Murf: Be careful John we don't heal like we used to

Murf: Are you in a chair?

johnweeb: i know.  good bones.

LenJ: Johmn  ankle pain and leg weakness is typical for me.  I started having leg cramps AGAIN  which I stopped having about 15 years ago

MICH: John... I was saying earlier...feet feel like neuropathy and like PAD and RLS on TV ads

johnweeb: hace chair but try not to use

Murf: Joe they do that at NIH but not with neddl3es any more. they use things taped to your skin

Apache: I get the foot neuropathy also

Murf: You will reconsider when you fall and break a leg

Murf: I did

Gary_KS: Democratic won for elections. So stem cell resarch will be accelarated.

johnweeb: hope so. hace to get rid of bush

Murf: Please no political discussions

billeric: I think all of us have fallen when suddenly a leg gives out and we hit the floor.  Hurts and is imbarassing when it happens in public.

Murf: We are all brothers here

Murf: I usually break a bone when that happens

Murf: No warning I just go straight down

LenJ: Bill--I've fallen in more Vegas casinos than anyone else--Talk about embarassing

Murf: Stay off the free booze //2

billeric: So far I haven't but sure have hit my head hard.

Murf: Me too and thats my excuse

LenJ: The only good part about falling in a public place is there's always someone to pick you up

Dart!: Falling is sooooooo embarrassing - I am up as quickly as possible,hoping that no one saw me.

Apache: I have broken an ankle 3 times and sprianed toes and twisted knees a few times also. I still walk around but use the chair a lot also.

Murf: If they grab your belt and not give you a weggy

billeric: I agree Len,  I make sure I have a belt on for someone to lift on.

Apache: I can't get up without assistance of some kind

johnweeb: i can be strong for three days, get cocky, then boom

Murf: When I go down now Its about 10 minutes before  can get up so I use a chair

LenJ: I need help always--I can't get up withuit help

johnweeb: i always need help getting up

Murf: John LOL I hear you brother

Murf: When I'm in my chair I seldom wait in lines either

LenJ: Someone should invent spring loaded pants so we bounce back up

JoeK: don't be to brave or vain use a cane, walker or chair.

Murf: LOL

Apache: A chair is great for the airport

Dart! has left the room.

Murf: Well put Joe, the concequeces are to tough

Murf: Only way to fly Jerry

johnweeb: i use a walker but if my legs give out i fall

Murf: Do you have a seat on your walker?

Dart! entered the room.

LenJ: The best thing I did was get the power wheelchair with the power lift seat.

johnweeb: no seat yet

Murf: Nice chair Len

Murf: $99 at Sam's Club

LenJ: Insurance wouldn,t pay for the seat but it was woth it

MICH: The scariest part of my day is getting from the front door to the SUV...from then on I use my Jazzy

Apache: Len, I have one too. It helps a lot when my legs are really tired.

Murf: I buy one every year and auction off the old one

Murf: I hear ya Mich

JoeK: when you get a van suggest you bight the bullet and get one that make it very easy for you helper to assist you.

Murf: Len - Who got my walker in Atlanta? do you remember?

Dart!: Why a new one so often Murray - looking for a faster one?

JoeK: auto door and ramp or lift.

Murf: Walker - so I can help one of you guys

Apache: I bought the bariatric version of the walker from Costco for about $150. That gives me plenty of clearance in the seat.

Murf: the one in Atlanta went for $60 just like new

Murf: Jerry yup they the best ones and cheap

Murf: Wheels lock too!

Murf: You get tired you just plop your butt for a rest

MICH: Apache, are you an AZ snowbird?

LenJ: Sorry guys I have to go  my granddaughter came in  Goodbye

Apache: No, I live here year round

LenJ has left the room.

Dart!: Are there brakes on those chairs in case you run out of power when you are going down a steep hill?

billeric: Where do you live Apache?

Murf: I think Peter or Ralph bought the walker If my memory is still there

Apache: Superstition Mountain Foothills NE of Apache Junction

Murf: No brake on my power chair but the walker does

Murf: The electric motors are the brakes

billeric: We are in Sun City(winter).

Apache: The power chair brakes by the gearing if there is no power.

MICH: Has anyone had their power chair 5-7 yrs and tried to get a new one?

Murf: Jerry - Did you get my e-mail?

Murf: Not yet I'm at 4 years

Murf: Jerry - I sent you the conference stuff you left in the meeting room

Murf: You should get it this week

Apache: My mom lives in Sun City

kellyC_ entered the room.

Apache: No Murf, I didn't get it.

Murf: Hey Kelly you finally thawed out //2 //2

kellyC_: lol not really

kellyC_: //2

Murf: You need to come to Houston for a visit my friend

kellyC_: Slept in again

johnweeb: murray,  gotta gp but e-mail me at This email address is being protected from spambots. You need JavaScript enabled to view it.. anyone else, too. i'm in los angeles (topanga).

Murf: ok John Take care

Murf: Stay safe

kellyC_: We got alot of snow here!!! but now its melting

johnweeb: thanks!

Murf: That won't last long Kelly

kellyC_: hi bill havent seen you in awhile its good to see u back!

Apache: billeric, are you in Sun City now?

johnweeb has left the room.

billeric: Yes,  I sent you a message on telephone number etc.

kellyC_: so how you been feeing Murf? health wise?

Murf: Not to bad, Pain in the legs are going away

kellyC_: thats good to hear.. Murf

Murf: Can't walk very far at all anymore but still kickin'

kellyC_: thats the sprirt Murf.... as for me I'am going to NIH nov 29

Murf: Humor is the best medicine for us

kellyC_: yes

Dart!: If I kick, I fall over!

Murf: Geart!! I'll be there for visit #2 Dec 18th

Murf: Dart LOL

Murf: me too

kellyC_: I"am still ok with my legs just alot of severe muscle spasms there and other parts of my body my throat is progressing...

Murf: I went through that

Murf: I wonder if we go through stags like this

kellyC_: when tired out problems with speech pple say what? huh?,, it get s kinda frustering lol

kellyC_: //6

billeric has left the room.

Dart!: Is the problem with our speech -- or with their ears?

Murf: I talk through my nose //6

kellyC_: me to at times now

kellyC_: nasel voice

Murf: What?

billeric entered the room.

Murf: //2

kellyC_: hahaaahahahaahahhaa

kellyC_: //19

billeric: Quick trip-hey?

Murf: I would miss a chat for the world!

Murf: Bill your not Canadian

Murf: hey?

Murf: //2 //1

kellyC_: Murf you sure had a good life hey? u did alot of travelling around the world with ur job hey... must be nice to have seen all those places

Dart!: Very good Murray! re 'Hay'!

Murf: I worked hard and yes I had a few brakes

kellyC_: murf u were canadaind once

Murf: I still am for about 5 more years

kellyC_: oc oc ok......

Murf: The I'll be half & half

kellyC_: dual citizen ship

Murf: I kill me

Murf: Hope so

kellyC_: apache is new in here hey? ello apache

Apache: Hi Kelly

MICH: Toronto when I lived in MICH, the Montreal Worlds Fair and Georgian Bay to a swim camp were about my only Canadian experiences

Murf: Mich you need to visit Alberta and BC

kellyC_: Banff in alberta is awsome

Murf: They are the most beautiful (sorry Kelly)

kellyC_: thats ok murf

Murf: Kelly - you have great fishing

kellyC_: oh yeah

Murf: Miss that but not the snow or cold

kellyC_: esp in Northeren sask its great la ronge is full of American fisherman bigtime

kellyC_: from all over the states

kellyC_: they drive there to with there RV's

Murf: No Bass but lots of Trout & jack / musky

kellyC_: yup

Murf: I got the T shirt form there too //2

MICH: Apache, Superstition Mountain is a pretty place to be too!

Murf: Apache is Jerry and he was at the conference in Atlanta. Jerry is on the conference committee for Las Vegas this year

Murf: I'm coming to visit Jerry

Apache: Yes, I love the views that I have

Murf: TJ & I figure we need to take a trip to Vegas through Apache Jtc to see you

Apache: When?

Murf: Might have to check out a hotel for the conference you know

Murf: Spring some time (to hot in the summer)

Murf: dry heat is better than here

Apache: Let me know when you are coming and I will try to join you in Vegas

Murf: Great