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Kennedy's Disease Chat Transcript 11-18-2006
Topic: Open Forum
Host: Murray Williams
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
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
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
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
Apache: Hes, It is a pill
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.
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
Murf: You need to come to Houston for a visit my friend
kellyC_: Slept in again
Murf: ok John Take care
Murf: Stay safe
kellyC_: We got alot of snow here!!! but now its melting
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
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
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
billeric entered the room.
billeric: Quick trip-hey?
Murf: I would miss a chat for the world!
Murf: Bill your not Canadian
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
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
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: GreatEND CHAT