| Kennedy's Disease Chat Transcript 11-18-2006 Topics: Topic: Open Forum Host: Murray Williams | ||||
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Chat Participants: MurfDart! billeric Apache JoeK DarwynP LenJ Gary_KS KellyC MICH BEGIN CHAT
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 jwiebusch@charter.net. 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
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