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Kennedy's Disease Chat Transcript 09-18-2010
Topic: Open Forum
Host: Lou Tudor
loutudor: Good morning!
elvspretzl: :? Hello.
elvspretzl: I was early.
loutudor: I thought I got here early :D
elvspretzl: This starts at 10:30, right?
loutudor: Good morning Guys!
Stan: Good wet morning
elvspretzl: I was here at 10:01 but I've been reading the questlog.
loutudor: We're all early :)
loutudor: Raining in MI?
Stan: Yes it is. Nasty.
UTE: 95 degree day in Utah
Stan: Hi UTE
loutudor: Sorry...no hurrcanes though!
UTE: Morning Stan, Lou and Elvis
loutudor: Good morning Ted and UTE!
TedA: Good morning from Richmond, VA
elvspretzl: Looks like a full room today ...
Stan: Morning TedA
loutudor: This is great... and we're not even at start time yet!
elvspretzl: Is there a quest speaker today?
loutudor: No speaker...this is an open forum...anything and everything
loutudor: Anyone here able to go to the conference in NOV?
elvspretzl: Okay, I just noticed that from time to time there are quests.
elvspretzl: Too far for me..
Stan: Nope, sorry.
elvspretzl: Maybe next year.
loutudor: Every year the conference is held in a different part of the country
UTE: No money or time to go to conference
TedA: Not this year, too much going on with the moving and new house
loutudor: This is a tough financial year for so many people
loutudor: Hey Pooh
Stan: Wife, kids and Government got al my money this year. Doctors last year. We'll see who takes it next year.
loutudor: Morning Mike!
MikeG: hi Lou
loutudor: Hi Gary!
Gary_KC: Good morning. This is Gary joining in from Kansas City. Finally, it has been over hot summer.
Gary_KC: Hi loutudor!
loutudor: Good to see so many of you today!
Stan: Hi Gary, MikeG
MikeG: still hot in FL but we're hoping for a fall...
MikeG: hi Stan
loutudor: Where is Fall?...
poohsdaddy: Good Morning All ....
MikeG: we missed spring altogether!
Stan: Fall is here.
MikeG: not in FL
loutudor: I'm hoping to do a Fall car trip next month
MikeG: well, if you consider 92 fall...
Stan: Have to go north of the Mason-Dixon for a real Fall.
MikeG: I'm headed to Savannah tomorrow - maybe it will be cooler there.
elvspretzl: My feet get cold very easily ... I use toe warmers when the weather is cold and I'm out for an extended period.
loutudor: I doubt it Mike...
Stan: Same here elves
UTE: we're 95 today and tomorrow but dropping 15 degrees next week
MikeG: I have the same problems with my feet and hands
MikeG: I would rather have 92 than 29
poohsdaddy: Rain earlier, dreary here now.... with a promise of daylight by noon.
loutudor: Have you all had the cold extremities problem for a while?
elvspretzl: Yes, I loose dexterity with my hands easily too, when cold.
loutudor: Have you experienced frostbite?
MikeG: pretty much - even before being diagnosed
poohsdaddy: Once my feet are cold.... I'm cold all over. It takes a while to warm up.
Stan: Yep, same here. If it gets below 60, I start having problems.
elvspretzl: I have ... well before diagnosis. But diagnosis took forever..
MikeG: same here
MikeG: hi Ted
loutudor: Wecome back Ted
elvspretzl: It's believed I had/have LYME disease in conjunction with KD.
loutudor: Morning Paul
poohsdaddy: Got ""thermal"" socks.... and a ""battery-operated"" pair too. It makes a difference.
Gary_KC: elvspretz, what is LYME disease?
MikeG: that's not good
elvspretzl: I might have to log off then on again to hear the woman say welcome one more time.
Stan: Lou, I had frostbite a couple of times when I was much younger. I'm sure it contributed to my cold feet now. At least I didn't get cold feet on 9-3-1976 though. :}
loutudor: Like that do 'ya? :D
TedA: IP problem
loutudor: Hello again Ted!
elvspretzl: Welcome !
MikeG: thermal socks would be nice to up north - sure would make the winter more bearable
loutudor: Morning Mike W
mikewhite: Hi all. Its been a while since I was last here sorry.
MikeG: hi Mike
TedA: My feet are always cold and the Dr says blood circulation is good
loutudor: I'm an old Michigander and have had frostbite
mikewhite: Time difference is a bummer
elvspretzl: What was 9/3/76, Stan?
Paul Sramek: Good Morning
Stan: My anniverary
mikewhite: Hi Lou
UTE: I've got neuropathy in feet...thermal socks drive already tight and hot feet crazy
elvspretzl: I'll need to pick up the battery operated socks. They must be avail. online somewhere.
Stan: anniversary. fingers stiff
mikewhite: Hi MikeG
loutudor: Good thing Stan!
Bruce: Good Morning
loutudor: Morning bruce
Gary_KC: Hi Burce!
poohsdaddy: Anyone else watch Jerry Lewis telethon ? They said part of their monies help with other research.... more than just MD. (including MS, ALS, Parkinson's & KD).
loutudor: Good Morning Pasadena!
Paul Sramek: My feet are always COLD circulation not a problem . per Doctors
MikeG: Mike - are you still taking creatine?
TedA: I was answering phones at the Richmond local MDA Telethon
loutudor: I always watch the Telethon and volunteer most years...
mikewhite: I am on Leucine, multivits and recently started with Vit D3
elvspretzl: I stopped drinking in 1985-6 ... has anyone else here needed to stop drinking ... How did it effect your KD, if so?
loutudor: Good Morning Losh
Bruce: My feet are always cold also. The neurologist said it was because of the nerves down there. They might feel warm to the touch, but they come across as cold.
MikeG: D3 is what my wife's dr put her on for ostiporosis
mikewhite: The D# seems to make me feel a lot better. My doctor does a lot of work with MS sufferers and suggested I try it. No harm, seemingly
loshimo11: Good morning everyone. This is Luis Shimomura joing in a bit late from San Francisco.
MikeG: hi Luis, how's the bay area?
Bruce: Morning Luis
ssjc: Good morning this is Stewart from SOCAL
loutudor: Hello Stewart!
MikeG: hi Stewart
loshimo11: The bay area is still here. Minus part of San Bruno.
TedA: Luis, How everything is SF? I will be there Oct 13-17
mikewhite: Does anyone know how many people have signed up for the conference in November?
loshimo11: TedA... SF is just fine. We are all waiting for your return.
Bruce: I do not have an accurate count as of this last week, but Terry said several more signed up and the doctors/researchers keep on sending in their registrations also.
loutudor: Lots of researchers coming to the conference!
loshimo11: TedA... Just bring extra winter clothing. It's been a cold summer.
Bruce: The last I heard, it was somewhere around forty plus the researchers ... at least fifteen I believe.
mikewhite: Good. I might haver to do some study just so I can understand all the medical stuff....!!
mikewhite: Thx Bruce
elvspretzl: Has anyone participated in Leuprolin clinical trials?
poohsdaddy: How many mad it to the previous one ?
Bruce: Mike, I could be wrong with the numbers, but the middle of August we had around 22.
mikewhite: What is Leoprolin?
elvspretzl: They were conducted about 4-5 years ago?
mikewhite: I am coming over from Australia. I'm looking forward to meeting you all
TedA: Luis I'll be there to defend my sail boat racing win from last Oct. Practice on Th and Fri and race on Saturday at Pier 40 and McCovey Cove/ATT ball park
Bruce: Poohsdaddy, I do not remember ... about fifty comes to mind.
Stan: No trials here elvspretz.
loutudor: Looking forward to seeing you Mike W!
elvspretzl: I might have that wrong ... I can't seem to find notes where my doctor was considering contacting Dr Fischbeck about it.
Bruce: Mike, You will probably be the person that travels the furthest.
mikewhite: Cheers Lou. Whats the weather like in San Diego at theat time of year?
poohsdaddy: Wish I could get there too.... but not raveling well lately.
loutudor: Very nice weather in San Diego...I used to live there
mikewhite: Ha ha......I have the flights. 26hrs door to door. Not lookin forward to that bit
MikeG: travel is a problem for most of us
loutudor: Bring a jacket for evening
mikewhite: Thats part of the reason I'm coming. I have no idea what I am in for in the future. I might get some idea.....who knows
elvspretzl: It's leuprolide ...
mikewhite: Jacket paked... :-)
loutudor: I'm sure the trip will be well worth it, Mike!
TedA: Luis is this 1 on 1 with you
elvspretzl: What are the dates for San Diego ?
mikewhite: Definately agree Lou. My cousin is in the US somewhere and he has KD. I haven't spoken to him in 5 years and am not to sure where he is.
mikewhite: 10th to 12th Elves
loutudor: Mike, is your cousin a member of KDA?
mikewhite: No mate. November
mikewhite: I don't think he is. I have 2 cousings with it and I don't know where either of them live now.............how sad is that
loshimo11: TedA... Just a warning. The SF Giants may be in a pennant race. Might get fairly crowded near ATT park.
MikeG: connection problems, Ted?
loutudor: Welcome back Pasadena!
TedA: Luis forgot how to do side chat w/ one person?
TedA: YES IP is having problem! :-(
MikeG: Ted, right-click person, then do instant message
Paul Sramek: I travel by air some, just in San franciso for my daughter wedding, in Sonoma. I use a Travel Scoot ride to the gate fold it up put in a bag, They put in the over it head. Air line appoved for handi capp.
TedA: Thank you
UTE: Yesterday is a day I won't forget for a while...my grandson loaded my powerchair in the Yukon before he left for school...but after he left I fell trying to get my walker to our ramp...crawled around for 30 minutes to get to lift chair in house...tried getting manual wheelchair out the door...got stuck without strength between garage and car..3 neighbors to the rescue...left powerchair for repair but got home and fell backwards by stairway trying to block the puppie from going downstairs...while trying to keep him from running out front door..I failed...a neighbor brought him back, as he had slipped out door. Good Samaraton found me flat on my back by front door with my back half way down the stairs
loshimo11: Paul Sramek... Welcome to San Francisco!!!
loutudor: So Sorry to hear that!
loutudor: Are you ok?
Stan: Eventful morning UTE. You OK?
UTE: Amazingly dont soar...just worn out
elvspretzl: I try to keep my cell phone on me ..
elvspretzl: I forget sometimes, though
UTE: not soaring today and not soar yesterday...Im use to bouncing
loshimo11: Paul Sramek... OKieDokie.
loutudor: At least you still have your sense of humor! :D
elvspretzl: Did anyone see me inquiry about alcohol?
MikeG: no - I must have missed it
loshimo11: Nope... didn't see no alcohol.
Stan: Never been a drinker elvspretz
loutudor: Ask again Elvs
elvspretzl: I was wondering if anyone has needed to stop drinking and/or if it had any impact on your KD?
elvspretzl: I stopped drinking in the mid-80's.
poohsdaddy: Gave up drinking when I got married. Only 3-4 drinks in nearly 30 years.
loshimo11: Alcohol causes me to have shortness of breath. Found this out as I was turning 21. Bummer!!! Have never had any of it since then.
UTE: Havent drank much since in the 60's when in college and in the Navy
TedA: Never was much of a drinker and could not pass sobriety test even WITHOUT one drink
elvspretzl: This is interesting ... I'm wondering if there's a pattern with non-alcohol drinkers and KD. That's why I asked.
UTE: Thanks for info
Paul Sramek: alochol....Not mush...Submarine & Diver had to stay in shape.I do have a glass wine when we go out to on weeks. @75 that enough.
elvspretzl: @TedA ... Hahaha ... Me either.
loshimo11: I'm even beginning to have allergies to large amounts of food. They make my pants shrink...
ssjc: If I take a drink is makes my skin itch more than is does normally anyone else?
TedA: I wear a Medic Alert bracelet so I can show it and not be arrested for DUI
loutudor: I know about pants shrinking :D
loutudor: Good idea Ted!
mikewhite: Is the skin itch a symptom of KD?
MikeG: I have a glass of wine most every night - no problems at all with that.
mikewhite: Me too.
loutudor: Is the skin itch Psoriasis?
elvspretzl: Okay, so I guess I can't really justify drinking to cure my KD ...
Paul Sramek: No itch will not increase itching .
mikewhite: Mind you, the wine could be the reason for me falling over at times. !!
UTE: Also it seems alcohol doesnt give me a buz anymore
poohsdaddy: My pants shrank too... after taking Prednisine. (gained 30 #)
elvspretzl: Prednisone is scary stuff.
elvspretzl: Are you still taking it?
Stan: Sorry guys. I can't relate. Dr. has me on a weight gain diet
Paul Sramek: Not much here but sum. it help with my legs feel beter.
elvspretzl: The Prednisone, Paul?
poohsdaddy: Alternating days with Celebrex.... both are ""low"" dosages.
loshimo11: Stan... try the seefood diet. It works for me.
Paul Sramek: Doctor said yes it woul help, don't drink too much
Paul Sramek: Alcohol
loutudor: Everything in moderation...
elvspretzl: I'm on the seefood diet too ... I just don't see enough of it at times ... huge appetite usually ... I'm about 145-150#
MikeG: right Lou
Stan: I take Prednisone. Still no significant weight gain, even with see food diet. Always been that way. 90% of people hate me.
MikeG: I'm closer to 160# and wish I could lose 10 more.
MikeG: amazing how much a difference 5# can make... walking is so much easier.
elvspretzl: Could someone give me a little info on D3, please. Instant message?
loutudor: Do you exercise?
ssjc: Psoriasis not farmilar? I'm on prednisine now 5mg every second day at higher dose 20mg a day my itching went away
Paul Sramek: I am 150 my cologe
elvspretzl: No I do not exercise. At least not enough or significantly.
UTE: I think I'm about 180...when I was young I was at about 150...doctor tells me not good to lose weight though
loutudor: Glad the Prednisine is working for you
loutudor: There's a wonderful exercise regime on the KDA website
Paul Sramek: I am at 150 lbs same a high & collage sorry hit the wrong key trying to too much @ a time.
MikeG: I think D3 is just a subset of vitamin D - sunshine or milk
elvspretzl: Under which category can I find that Loutudor?
loutudor: Bruce, exactly where is the exercise on KDA?
MikeG: yes, the web site has a great exercise program - I wish I could keep doing it... too busy working.
elvspretzl: I found it.
loutudor: Lots of men use that Elvs...successfully
MikeG: it's not displaying the full URL...
loutudor: Thanks for looking that up
Stan: My exercise consists of my projects, yard work, housework. It's Fall here, so if you want a great cardio workout, come up here and help me rake leaves. 10 acres, 3 rakes, no waiting.
MikeG: try this: ""http://www.kennedysdisease.org/disc_exercise_tips.html""
elvspretzl: It's a hyperlink though, so it should work.
loutudor: Stan...that's good exercise!
MikeG: right - it does
elvspretzl: Yes, Thank you!
ssjc: Any body been to the Forbes Norris center in SF they recomended exercise (moderate) one suggestion I get a WII fit
UTE: My exercise is trying to get ready to get out the door for work and sliding my arms around on the table at work
mikewhite: I'll get more info on the D3 suppliment. My dose is one tab every 10 days and I do believe it makes me feel better if nothing else. As mentioned, it seems to aid MS sufferers so this was the reason my Dr said to try it. No harm done so we will see.!!
elvspretzl: Thanks Mike.
elvspretzl: So, it's just vitamin D3?
MikeG: the Wii fit is ok for 'normal' people. My wife has one and uses it successfully but I can do half of the stuff she does. Too much balance is needed and I just don't have it.
loshimo11: ssjc... The Forbes Norris is where I go to see my neurologist Robert Miller. He's a very knowledgeable guy and extremely nice. I'll have to ask him next time I see him.
Bruce: Sorry, my sister in California called and we were catching up on all the news.
loutudor: No problem Bruce
TedA: Dr Miller and Katz were my Dr's when I was in CA
mikewhite: Yep. Only D3. I also use Leucine. This is an amino acid (I think) athletes use it to aid muscle fatigue. I find after exercise, this helps (I have no evidence that it is this that is helping though)
loshimo11: TedA... Been seeing Dr. Miller since 1984!!! Dang, I'm old!!!!
ssjc: I recetly saw Dr Miller and his physical therapist Michelle
UTE: Both when I lived in Oregon and now here in Utah...I see the ALS/Motor Neuron Disease Director as my neurologist
MikeG: My wife is taking D3 every day so I'm not sure that's the same thing as what you're taking, Mike
elvspretzl: My doctor had suggested he might try Leuprolide ... but the research I've done on it seems inconclusive.
mikewhite: OK MikeG, I'll have to get more info and let you know. I know its definately D3 but the dose is quite high. Well guys. I am off. Its almost 1130 at night and I need my beauty sleep. take care everyone and hopefully we will meet up at this forum next time and also at the conference. Best wishes to you all.
elvspretzl: Take care, Mike !
loutudor: See you in Nov, Mike
UTE: Bye Mike
elvspretzl: Thanks for your help!
Bruce: I see quite a bit on exercise. Yes, I do it every day and have only missed one day in three years.
loshimo11: Take care Mike.
MikeG: well, I've got to get back to work... lots of stuff to do to get ready for my trip to Savannah tomorrow. It was another great chat - thanks for everyone's input! Later
Stan: Take care mikewhite
loutudor: Bye Mike...safe trip
elvspretzl: I seem to get very distressed/depressed whenever I initiate exercise ... almost like a reverse endorpine reaction.
Gary_KC: Bye all.
loutudor: Take care Gary
UTE: Stay Safe and Upright
loutudor: Bye UTE
elvspretzl: Will the woman say ""Goodbye"" to me when I leave the chatroom? :(
poohsdaddy: Sorry, computer shut down.... just got back into this. Hope to see you all here next time !!
elvspretzl: See you then.
loutudor: Sorry...she only welcomes you :D
Stan: elvspretzl - for me it feels non-productive use of my time. I don't feel or look better.
poohsdaddy: Thanks !!
loutudor: Take care and thanks for being here
elvspretzl: Thanks. Have a great day, All
Stan: Where is everyone going? Something I said? Well, ok, take care until next time.
loutudor: Stan, go rake leaves! :D
loutudor: You all take care until next time...
loshimo11: The wife just finished cooking breakfast... gotta go before it gets cold. Stay safe and upright everyone.
TedA: bye everyone!
loutudor: Bye Losh
loutudor: Bye Ted
ssjc: Good bye see you in Nov
loutudor: Bye Pasadena!
loutudor: Time for me to go too..take care