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Kennedy's Disease Chat Transcript   02-05-2011

Topic:  Dutasteride; A Town Hall Meeting

Host:  Mike Goynes

 

MikeG Terry, did you ever try Avodart?
TerryW [b]Not yet But I think I am going to
Stan Wife already took care of that Bruce.
TerryW [b],05 MG? right
TerryW [b].o5
MikeG lol
carofer what is the motion show?
Bruce I thought you knew better than that, Stan.
Bruce Silence is golden!
MikeG .5 - I think that's what I took.
Bruce Yes, Terry
carofer i got dutasteride as part of the trial
MikeG it's been a while - and I've slept since then... :)
TerryW [b]It's an adventuure show where they go to the Natl. Parks and show activities, Do a search on Facebook for Motion or on Google for Motion on the live well network
MikeG good - how did you do? Do you feel it helped you?
TerryW [b]She will be in Death Valley
carofer thx i will hunt it down
TerryW [b]You can view the shows online if the TV stations in your area don't carry it.
carofer i saw no improvement but the muscle tester at the nih said i did a bit better at the end than at the beginning -- not much but measurable
Gary_KC Good morning. This is Gary joining in from Kansas City. It was lots of snow this week. It is 15 degrees with overcast.
loshimo11 Good morning everyone. This is loshimo11 joining in from what appears to be a very nice day in San Francisco.
MikeG hi Luis and Gary
TerryW I don't think my doctor will have any issues perscribing Avodart if I ask him
Gary_KC Hi MikeG.
MikeG no - it shouldn't be a problem
Bruce Morning Gary and Luis
TerryW Hi Gary, Luis
stewart Good morning from Socal
Stan Hi Gary, Luis
MikeG hi stewart
Bruce Morning Stewart
loshimo11 Good morning Mike, Bruce, Terry, Stan and all.
MikeG when are you guys in CA going to stop sending such bad weather to the nation? :)
TerryW It's that Jet Stream
TerryW hits here first
loshimo11 We had one of the dryest/warmest January in the Bay Area that I can remember and I can remember very far.
MikeG So how many of you have found positive results from taking AVODART (dutasteride)???
carofer we don't have enough $ to handle the bad weather here, so we have to export it
Bruce For those interested, Dr. Fischbeck wrote the KDA asking that we change the wording on the "Clinical Trial" page of Promote Research. He wanted to clarify his interpretation of the dutasteride trial.
Bruce He said, "[b]The dutasteride trial did not show a significant effect on the progression of muscle weakness[/b]. (The rest comes from the earlier report) Those patients on a placebo lost, on average, 2% of their strength per year (two-year study). Patients on Dutasteride showed a slight increase in strength, but statistically the difference was not significant. Kurt surmised that the trial needed to be longer (at least three years) to better determine any benefits. A few patients on Dutasteride did show significant improvement, while others did not. Kurt felt that this could mean that the drug reacts differently in certain patients."
Bruce The key word is "significant".
MikeG I took it for two years and only noticed my breasts got bigger and my balls got smaller... lol
TerryW To much info Mike
TerryW LOL
loshimo11 MikeG.... you're a funny guy!!!!
MikeG :)
carofer yes side effects were noticeable
Bruce What side effects did you have, carofer?
MikeG I felt that my strength got much better in 6 months but seemed to diminish the longer I was on it...
MikeG may have been wishful thinking.
carofer similar to mike
carofer i felt little help w bph
carofer benign prostate hyperplasia
MikeG one good thing was VERY low PSAs.. almost unreadable.
Bruce Dr. Fischbeck did not see any harm in discussing the approach with your doctor since side effects seemed to be minimal.
MikeG I don't kinow if that's really good or bad though... it may mask real problems.
MikeG There are several people who took it and swear by it however.
MikeG I wish they could be on the chat to tell us about it.
carofer i stopped taking it but felt no difference
Bruce Yes, that would be nice since the comments from those who used it and liked it would be beneficial.
Bruce Morning Paul and Yakima
TedA Hi from Richmond, VA
Paul Sramek Good Morning from Dallas
Bruce Ted or Paul, did either of you participate in the dutrasteride trial?
Gary_KC I didn't participate in the trial becuase I was not qualified. I am taking generic Avodart (Duprost) for 2 years. I feel that I have a little more stamina.
Yakima Kid Good Morning
carofer did u talk with people at the conference? what i heard was complaints about the side effects, but they kept taking it anyway
MikeG yeah, that's what I couldn't figure out.
MikeG The benefits must have outweighed the side effects...
carofer yup, mike
TedA Yes I did
Bruce In discussing the results with one person who was in the trial and continues to take dutasteride, he swears that it has been beneficial. The comments from the clincal trial team seems to sum it up ... it seemed to be more beneficial to some than others.
Yakima Kid It's good to hear first hand info on new treatments
Paul Sramek No
Bruce TedA, what were you results ... positive/negative - no difference?
MikeG Paul, is all the ice gone from the stadium now?
MikeG you guys wee reall hit hard with that storm...
TedA I was on the dutrasteride. After the trial I noticed a decline in strength - several falls! About 1 year later I was able to get back on the drug.
Paul Sramek No, we are to get more A.M.[small amount] tomorrow before the game
MikeG Thanks Ted - good info.
MikeG :(
MikeG it's going to be a close game... I think.
carofer when does avodart go generic?
Paul Sramek Yes should be a good game.
TedA I talked to Angela during all of this
Bruce Ted, so you are on it again. Have you seen any benefit since then?
MikeG probably when GlaxoSmithKline makes $10B... :)
Bruce I am a Steelers fan, but it would be nice to see the Packers win. In the end, I just want a good game.
MikeG same here
Paul Sramek same here
Bruce I wonder if the Blackeyed Peas will have any "over-exposure" problems like Janet Jackson did?
MikeG next year Tampa Bay will in it! :)
Andrew Hi, morning
MikeG hi pooh
Bruce Morning Poohsdaddy
Stan Morning Andrew, Poohsdaddy
Bruce What is the weather like in Ontario this morning?
Andrew Its a balmy -2c
MikeG ouch!
Bruce Swim suit weather
Andrew almost
MikeG 70 here
TedA Lost server. I got back on it in late 2009 about 6 months after the results came out. My best guess is that I am stronger then if I hand not gotten back on the drug.
Bruce When I use to go to Prince Albert in SASK in January, I hated the trip. The winds were always 25-30 mph on calm days.
Bruce Thanks, Ted, I am about ready to ask my doctor about it.
carofer dosage the same, teda?
Yakima Kid I'm going to ask my doctor about it.
UTE Wow...that 100's of words to get to the chat was a challenge
Yakima Kid ??
TedA carofer, well I am having less falls then I did in the 4-6 month period after the CT ended for me.
Bruce That is good to know also TedA. Thanks for sharing that.
poohsdaddy Good Morning all.... Sorry for being late. I had trouble signing in through the new web page.
Bruce It would be interesting to do a followup at NIH with those that remained on dutasteride and those that did not to see any differences.
MikeG oh, really, what happened?
UTE I probably looked in the wrong place on the screen to log in and instead signed up as a new member
Gary_KC I think dutasteride may slow down the progress ONLY. It may not improve the muscle strength. Exercise is important to improve the sterenght, I think.
Yakima Kid I have to hang on to something--cane, wall, railing so don;t fall
MikeG me2
carofer me3
MikeG very true Gary
Yakima Kid Falling is not an option
MikeG right!
Stan I can still walk on my own. I have a cane just in case. Usually to smack somebody.
Bruce I wish Terry was on to read your comments about signing in.
TedA That 4-6 month periord was the most falls ever in that period ever. The only thing I can figure out is that going off the drug had a sudden decline in strength that took my body time to compensate for.
UTE Falling has been an option for years till I broke my arm four months ago
Yakima Kid If there is nothing to hang on--I don't go!
MikeG poohsdaddy are you on AOL?
poohsdaddy I was on the actual drug during the clinical trial at NIH. I have not gone back to taking it even though I felt better and had more stamina.
Bruce Ted, that is an interesting analysis.
loshimo11 Broke my toe falling Christmas day. Was trying to hang on to thin air.... Didn't work...
Stan I can see where there might be an issue signing in. It depends on how they access the Chat log-in.
Bruce For those that took it and felt positive results, why did you not continue taking it after you began to see weakness?
UTE I've broke all my toe metatarcils...they heal alot faster than an arm
MikeG it was the same for me as the old web site...
Yakima Kid Thin-air dosn't work:} :}
MikeG the URL is the same
Stan I had no issue logging in.
Bruce Me neither
MikeG hi jameson
carofer i gave it up because it was not obvious that there was improvement. since then i have become weaker but i cannot attribute that to quitting
Bruce Please, if you continue to have any problems with logging in, let the KDA know what specifically is happening.
loshimo11 While testing the log in process a few days ago, I encountered a 404 error. Couldn't duplicate it and it's been fine since then.
jameson411 Hi MikeG and all!
poohsdaddy Mike, I'm on Mozilla Firefox.... Just wasn't sure where to log in... Was used to the "Blue Space" that said "Click Here". I guess its hard to teach an old dog new tricks.
Stan I have not broken any bones yet. I usually experience things more serious and unrelated to KD
UTE Jameson, how have you been
jameson411 Very good... tired from the shoveling
Bruce I will add a button if you feel that would be easier for people.
carofer i fall less after the trial but that is because nih gave me a cane, i think
jameson411 what little I can do anyway, my poor wife has to do most of the snow removal
Stan Going to the bottom of the new home page where it says Chat, is the most direct route besides the URL poohsdaddy.
Yakima Kid I'm lucky---Charis does most everything
loshimo11 We are all blessed to have such understanding spouses!!!
jameson411 amen
carofer how about igf-1 as available in natural food pharmacies?
Paul Sramek Yes
MikeG you got that right!
TedA I never felt stable with a cane so I went straight to a walker. Me brother w/KD fell so many times with a cane we had to take it away so he was forced to use walker or power chair.
carofer actually
UTE Anybody figured out how to put a snow plow or cow catcher on the front of a power wheelchair
jameson411 lol
Stan Luis, that 404 error is probably one that Bruce found and fixed right away.
MikeG Ted, what kind of walker do you have?
loshimo11 Stan/Bruce... OIC... I tried duplicating it but it never happened again. Thanks for the fix!!!
Stan I've been working on that UTE. Wife, son and I were discussing that a couple weeks ago.
Yakima Kid I'm 84 now, she's 81,and doing pretty good!
Bruce The IGF-1 discussed for a potential clinical trial is "for muscles" and is totally different.
carofer actually the cane may be more of a psychological assist than physical, and, you can use it to smack someone as someone already noted.
UTE All right fellow Michigander!
carofer the cellular results for igf-1 shown at the conference were impressive
MikeG yes
Yakima Kid A walker is out for me. Pushing anything is too tiring. A cane or scooter is my choice
loshimo11 carofer... there's actually a cane that also makes stair climbing and getting up from a chair available. Can't remember the name though.
TedA I have 2. A cheaper one from Kaiser when I was with them amd a Dolomite one from the VA. They are different height seats so that is imortant to look at. When I sit in the 1st one it is lower and harder to get up from.
MikeG I have a light 4-wheel walker with a seat. I wish it would fold up better though - it's not easy to store in my vehicle.
carofer loshimo11 i would like to hear about that --- i will research it
MikeG so you can't adjust the seat height on the 1st one?
Bruce A physical therapist told me I was using a walker wrong. I was putting weight on it for stability and he said to use it for balance only when needed. It made a big difference.
UTE Is anyone using a hoyer lift...I need knew ideas for getting out of the tub without my wife doing all the work
loshimo11 Mike... I recently bought a very light walker. Weighs about 6.5 lbs and folds like an umbrella.
Andrew Take care all, have to get ready to go out, bye for now.
MikeG yes, it really comes in handy when one of your knees decides to buckle...
loshimo11 Take care Andrew.
Paul Sramek I use a scooter, Traveldcoot.com It not for ever one.
Bruce UTE, contact Murray. He has some lift to get himself out of the tub I believe.
TedA No they hace a set seat height. The handle height are adjustabe though.
Paul Sramek travelscoot.com correction
MikeG that sounds like what I need Luis...
TedA Bigger wheels are better as they roll better over different surfaces.
Yakima Kid Standing still is tough, I have to keep moving or sit down
stewart I have got to go, good info thanks Stewart
MikeG looks good Paul... is it stable?
Bruce Yes, I believe it is tougher to stand for any length of time than to move.
UTE Jameson...I'm retiring from the planetarium after 8 yrs this Thursday
TedA Leaning againest a wall works, like a 3 Point stance!
Yakima Kid My KD is complcated by degenerated lumbar discs
Stan Yes Bruce, especially in a foot of snow. That's what I found out this week.
Bruce Wow, you have mentioned your pending retirement, but this Thursday.
jameson411 wow.. Ute.
carofer Yakima Kid , my pt taught me to exercise and use my toes more -- it helped me with balance a lot. toes rock.
jameson411 how come?
Paul Sramek Yes, You have to care full. It is not mobility scooter.
Yakima Kid Thanks--good to know
jameson411 Physical reasons or are you ready to move onto something else?
loshimo11 Mike... the only issue with this type of walker is that it comes with fixed wheels and is not as sturdy as the heavy duty ones. Other than that, it works well and you can usually get it for less than $100.
MikeG all of the wheels are fixed?
jameson411 Paul, I am watching the travelscoot video. I looks are to put together... are you able to do it or do you need help?
UTE Broke my arm four months ago and its been all downhill since then and the xmas crowd of hundreds didn't help
MikeG how can that be?
Yakima Kid Breakfast is ready---bye all and thanks
jameson411 *Looks hard to put together
MikeG but it looks light... and FAST!
jameson411 Sorry to hear that E.
Bruce Rich, I cannot imagine how difficult it must be to not have leg strength and then lose and arm (for pushing off). I know when I broke my tibia and fibula, life changed for six months ... no fun!
Paul Sramek I am able yet to leverage in my car trunk, I can go by my self to stores.,I am 76 & still work.
UTE When and even if my strngth doesnt com e back I'll still be going downtown even if its just to say hi to tourist on the street
Bruce Paul, that is impressive
jameson411 excellent
MikeG wow - that's great Paul!
loshimo11 Paul... wish I could do that!!!
jameson411 I am amazed at how hard simple things are becoming... like brushing teeth, shaving etc. Getting out is a big deal these days.
Stan I had to retire 4 years ago at 55. Probably the best thing I did.
jameson411 Paul, what is the battery life on the travelscoot?
Bruce Well, I need to get my dog out for a walk. Everyone stay upright except when sleeping.
UTE So Jameson...hows the teaching going
TedA I retired the end of 2009 at age 59 and that was the best thing I did
carofer Bruce --- or making love
loshimo11 Retired at 45 due to KD. Thought I loved my job but then I realized it was only the paychecks that I liked.
MikeG paychecks are nice...
loshimo11 Take care Bruce.
jameson411 E... loving it still. I am slowly adapting my classroom to be less physically demanding. And my dept head is awesome in supplying aid.
MikeG that's good
jameson411 They put a printer in my room so that I don't have to walk across the building to retrieve papers... stuff like that.
MikeG I work at home and do everything on the Internet - the only way I can do it.
Paul Sramek I will say travelscoot not for ever one. it folds up & goes in the over head ben.i airplane I have had one for over 2 years. my e-mail This email address is being protected from spambots. You need JavaScript enabled to view it. life is good Appeox 15/20 miles.
UTE Great to hear everybodys plugging away in their own ways
MikeG wow - that's pretty impressive Paul.
carofer i still work at 62. i am a bit of a workaholic.
jameson411 what do you do carofer?
MikeG how fast doe sit go? It looked as fast as my chair...
Stan Jameson, part of my reason for retiring was that my speech is affected. I was a trainer. I discovered some of the students could not understand me. My voice also did not project like it used to.
poohsdaddy Thanks guys ..... Hope to see you all here again next time. Bye
carofer small computer software company exec
MikeG I'm 62 also.
carofer (engineering)
MikeG bye Pooh
MikeG do you know Joomla???
Stan Bye Pooh. Is it that time already?
MikeG almost...
MikeG but stay on as long as you wish.
carofer i have heard of joomla. good product?
MikeG the chat room is ALWAYS open... 24/7
loshimo11 OK... the wife is up and cooking breakfast.... the smell of bacon is overwhelming.... Take care everyone. Stay healthy and upright!!!
jameson411 Stan, I can see that happening in a few years to me.
MikeG sounds good Luis - take care.
TedA Great Chat. Take care all.
carofer looks like drupal, which we use
Paul Sramek For more info on the travelscoot e-mail me This email address is being protected from spambots. You need JavaScript enabled to view it. Put your phone # I will call. its free for me.
Stan Bye Luis. Lunch time here
MikeG yeah, it's shopping time for us... need some 'stuff' for a Super Bowl party... :) Take care everyone!
Gary_KC Stay warm until the next chat. Bye all.
Stan Ok. until next time everyone.
Bruce I just changed the chat room page and added a CLICK HERE button. I hope that helps.
Paul Sramek next time
Bruce Well, my dog is still waiting. Take care!
Stan Ok. Thanks Bruce. Until next time. Bye.
carofer bye all and thanks
jameson411 take care guys
UTE Jameson..great to hear how youredoing..so long
jameson411 Eric, I still think fondly on our visit in UT
jameson411 thanks for that. Take care!
UTE It was great meeting and spending time with your family..say hi
jameson411 I will. Heidi is here, she says hi
jameson411 Later

 


MikeG Terry, did you ever try Avodart?
TerryW [b]Not yet But I think I am going to
Stan Wife already took care of that Bruce.
TerryW [b],05 MG? right
TerryW [b].o5
MikeG lol
carofer what is the motion show?
Bruce I thought you knew better than that, Stan.
Bruce Silence is golden!
MikeG .5 - I think that's what I took.
Bruce Yes, Terry
carofer i got dutasteride as part of the trial
MikeG it's been a while - and I've slept since then... :)
TerryW [b]It's an adventuure show where they go to the Natl. Parks and show activities, Do a search on Facebook for Motion or on Google for Motion on the live well network
MikeG good - how did you do? Do you feel it helped you?
TerryW [b]She will be in Death Valley
carofer thx i will hunt it down
TerryW [b]You can view the shows online if the TV stations in your area don't carry it.
carofer i saw no improvement but the muscle tester at the nih said i did a bit better at the end than at the beginning -- not much but measurable
Gary_KC Good morning. This is Gary joining in from Kansas City. It was lots of snow this week. It is 15 degrees with overcast.
loshimo11 Good morning everyone. This is loshimo11 joining in from what appears to be a very nice day in San Francisco.
MikeG hi Luis and Gary
TerryW I don't think my doctor will have any issues perscribing Avodart if I ask him
Gary_KC Hi MikeG.
MikeG no - it shouldn't be a problem
Bruce Morning Gary and Luis
TerryW Hi Gary, Luis
stewart Good morning from Socal
Stan Hi Gary, Luis
MikeG hi stewart
Bruce Morning Stewart
loshimo11 Good morning Mike, Bruce, Terry, Stan and all.
MikeG when are you guys in CA going to stop sending such bad weather to the nation? :)
TerryW It's that Jet Stream
TerryW hits here first
loshimo11 We had one of the dryest/warmest January in the Bay Area that I can remember and I can remember very far.
MikeG So how many of you have found positive results from taking AVODART (dutasteride)???
carofer we don't have enough $ to handle the bad weather here, so we have to export it
Bruce For those interested, Dr. Fischbeck wrote the KDA asking that we change the wording on the "Clinical Trial" page of Promote Research. He wanted to clarify his interpretation of the dutasteride trial.
Bruce He said, "[b]The dutasteride trial did not show a significant effect on the progression of muscle weakness[/b]. (The rest comes from the earlier report) Those patients on a placebo lost, on average, 2% of their strength per year (two-year study). Patients on Dutasteride showed a slight increase in strength, but statistically the difference was not significant. Kurt surmised that the trial needed to be longer (at least three years) to better determine any benefits. A few patients on Dutasteride did show significant improvement, while others did not. Kurt felt that this could mean that the drug reacts differently in certain patients."
Bruce The key word is "significant".
MikeG I took it for two years and only noticed my breasts got bigger and my balls got smaller... lol
TerryW To much info Mike
TerryW LOL
loshimo11 MikeG.... you're a funny guy!!!!
MikeG :)
carofer yes side effects were noticeable
Bruce What side effects did you have, carofer?
MikeG I felt that my strength got much better in 6 months but seemed to diminish the longer I was on it...
MikeG may have been wishful thinking.
carofer similar to mike
carofer i felt little help w bph
carofer benign prostate hyperplasia
MikeG one good thing was VERY low PSAs.. almost unreadable.
Bruce Dr. Fischbeck did not see any harm in discussing the approach with your doctor since side effects seemed to be minimal.
MikeG I don't kinow if that's really good or bad though... it may mask real problems.
MikeG There are several people who took it and swear by it however.
MikeG I wish they could be on the chat to tell us about it.
carofer i stopped taking it but felt no difference
Bruce Yes, that would be nice since the comments from those who used it and liked it would be beneficial.
Bruce Morning Paul and Yakima
TedA Hi from Richmond, VA
Paul Sramek Good Morning from Dallas
Bruce Ted or Paul, did either of you participate in the dutrasteride trial?
Gary_KC I didn't participate in the trial becuase I was not qualified. I am taking generic Avodart (Duprost) for 2 years. I feel that I have a little more stamina.
Yakima Kid Good Morning
carofer did u talk with people at the conference? what i heard was complaints about the side effects, but they kept taking it anyway
MikeG yeah, that's what I couldn't figure out.
MikeG The benefits must have outweighed the side effects...
carofer yup, mike
TedA Yes I did
Bruce In discussing the results with one person who was in the trial and continues to take dutasteride, he swears that it has been beneficial. The comments from the clincal trial team seems to sum it up ... it seemed to be more beneficial to some than others.
Yakima Kid It's good to hear first hand info on new treatments
Paul Sramek No
Bruce TedA, what were you results ... positive/negative - no difference?
MikeG Paul, is all the ice gone from the stadium now?
MikeG you guys wee reall hit hard with that storm...
TedA I was on the dutrasteride. After the trial I noticed a decline in strength - several falls! About 1 year later I was able to get back on the drug.
Paul Sramek No, we are to get more A.M.[small amount] tomorrow before the game
MikeG Thanks Ted - good info.
MikeG :(
MikeG it's going to be a close game... I think.
carofer when does avodart go generic?
Paul Sramek Yes should be a good game.
TedA I talked to Angela during all of this
Bruce Ted, so you are on it again. Have you seen any benefit since then?
MikeG probably when GlaxoSmithKline makes $10B... :)
Bruce I am a Steelers fan, but it would be nice to see the Packers win. In the end, I just want a good game.
MikeG same here
Paul Sramek same here
Bruce I wonder if the Blackeyed Peas will have any "over-exposure" problems like Janet Jackson did?
MikeG next year Tampa Bay will in it! :)
Andrew Hi, morning
MikeG hi pooh
Bruce Morning Poohsdaddy
Stan Morning Andrew, Poohsdaddy
Bruce What is the weather like in Ontario this morning?
Andrew Its a balmy -2c
MikeG ouch!
Bruce Swim suit weather
Andrew almost
MikeG 70 here
TedA Lost server. I got back on it in late 2009 about 6 months after the results came out. My best guess is that I am stronger then if I hand not gotten back on the drug.
Bruce When I use to go to Prince Albert in SASK in January, I hated the trip. The winds were always 25-30 mph on calm days.
Bruce Thanks, Ted, I am about ready to ask my doctor about it.
carofer dosage the same, teda?
Yakima Kid I'm going to ask my doctor about it.
UTE Wow...that 100's of words to get to the chat was a challenge
Yakima Kid ??
TedA carofer, well I am having less falls then I did in the 4-6 month period after the CT ended for me.
Bruce That is good to know also TedA. Thanks for sharing that.
poohsdaddy Good Morning all.... Sorry for being late. I had trouble signing in through the new web page.
Bruce It would be interesting to do a followup at NIH with those that remained on dutasteride and those that did not to see any differences.
MikeG oh, really, what happened?
UTE I probably looked in the wrong place on the screen to log in and instead signed up as a new member
Gary_KC I think dutasteride may slow down the progress ONLY. It may not improve the muscle strength. Exercise is important to improve the sterenght, I think.
Yakima Kid I have to hang on to something--cane, wall, railing so don;t fall
MikeG me2
carofer me3
MikeG very true Gary
Yakima Kid Falling is not an option
MikeG right!
Stan I can still walk on my own. I have a cane just in case. Usually to smack somebody.
Bruce I wish Terry was on to read your comments about signing in.
TedA That 4-6 month periord was the most falls ever in that period ever. The only thing I can figure out is that going off the drug had a sudden decline in strength that took my body time to compensate for.
UTE Falling has been an option for years till I broke my arm four months ago
Yakima Kid If there is nothing to hang on--I don't go!
MikeG poohsdaddy are you on AOL?
poohsdaddy I was on the actual drug during the clinical trial at NIH. I have not gone back to taking it even though I felt better and had more stamina.
Bruce Ted, that is an interesting analysis.
loshimo11 Broke my toe falling Christmas day. Was trying to hang on to thin air.... Didn't work...
Stan I can see where there might be an issue signing in. It depends on how they access the Chat log-in.
Bruce For those that took it and felt positive results, why did you not continue taking it after you began to see weakness?
UTE I've broke all my toe metatarcils...they heal alot faster than an arm
MikeG it was the same for me as the old web site...
Yakima Kid Thin-air dosn't work:} :}
MikeG the URL is the same
Stan I had no issue logging in.
Bruce Me neither
MikeG hi jameson
carofer i gave it up because it was not obvious that there was improvement. since then i have become weaker but i cannot attribute that to quitting
Bruce Please, if you continue to have any problems with logging in, let the KDA know what specifically is happening.
loshimo11 While testing the log in process a few days ago, I encountered a 404 error. Couldn't duplicate it and it's been fine since then.
jameson411 Hi MikeG and all!
poohsdaddy Mike, I'm on Mozilla Firefox.... Just wasn't sure where to log in... Was used to the "Blue Space" that said "Click Here". I guess its hard to teach an old dog new tricks.
Stan I have not broken any bones yet. I usually experience things more serious and unrelated to KD
UTE Jameson, how have you been
jameson411 Very good... tired from the shoveling
Bruce I will add a button if you feel that would be easier for people.
carofer i fall less after the trial but that is because nih gave me a cane, i think
jameson411 what little I can do anyway, my poor wife has to do most of the snow removal
Stan Going to the bottom of the new home page where it says Chat, is the most direct route besides the URL poohsdaddy.
Yakima Kid I'm lucky---Charis does most everything
loshimo11 We are all blessed to have such understanding spouses!!!
jameson411 amen
carofer how about igf-1 as available in natural food pharmacies?
Paul Sramek Yes
MikeG you got that right!
TedA I never felt stable with a cane so I went straight to a walker. Me brother w/KD fell so many times with a cane we had to take it away so he was forced to use walker or power chair.
carofer actually
UTE Anybody figured out how to put a snow plow or cow catcher on the front of a power wheelchair
jameson411 lol
Stan Luis, that 404 error is probably one that Bruce found and fixed right away.
MikeG Ted, what kind of walker do you have?
loshimo11 Stan/Bruce... OIC... I tried duplicating it but it never happened again. Thanks for the fix!!!
Stan I've been working on that UTE. Wife, son and I were discussing that a couple weeks ago.
Yakima Kid I'm 84 now, she's 81,and doing pretty good!
Bruce The IGF-1 discussed for a potential clinical trial is "for muscles" and is totally different.
carofer actually the cane may be more of a psychological assist than physical, and, you can use it to smack someone as someone already noted.
UTE All right fellow Michigander!
carofer the cellular results for igf-1 shown at the conference were impressive
MikeG yes
Yakima Kid A walker is out for me. Pushing anything is too tiring. A cane or scooter is my choice
loshimo11 carofer... there's actually a cane that also makes stair climbing and getting up from a chair available. Can't remember the name though.
TedA I have 2. A cheaper one from Kaiser when I was with them amd a Dolomite one from the VA. They are different height seats so that is imortant to look at. When I sit in the 1st one it is lower and harder to get up from.
MikeG I have a light 4-wheel walker with a seat. I wish it would fold up better though - it's not easy to store in my vehicle.
carofer loshimo11 i would like to hear about that --- i will research it
MikeG so you can't adjust the seat height on the 1st one?
Bruce A physical therapist told me I was using a walker wrong. I was putting weight on it for stability and he said to use it for balance only when needed. It made a big difference.
UTE Is anyone using a hoyer lift...I need knew ideas for getting out of the tub without my wife doing all the work
loshimo11 Mike... I recently bought a very light walker. Weighs about 6.5 lbs and folds like an umbrella.
Andrew Take care all, have to get ready to go out, bye for now.
MikeG yes, it really comes in handy when one of your knees decides to buckle...
loshimo11 Take care Andrew.
Paul Sramek I use a scooter, Traveldcoot.com It not for ever one.
Bruce UTE, contact Murray. He has some lift to get himself out of the tub I believe.
TedA No they hace a set seat height. The handle height are adjustabe though.
Paul Sramek travelscoot.com correction
MikeG that sounds like what I need Luis...
TedA Bigger wheels are better as they roll better over different surfaces.
Yakima Kid Standing still is tough, I have to keep moving or sit down
stewart I have got to go, good info thanks Stewart
MikeG looks good Paul... is it stable?
Bruce Yes, I believe it is tougher to stand for any length of time than to move.
UTE Jameson...I'm retiring from the planetarium after 8 yrs this Thursday
TedA Leaning againest a wall works, like a 3 Point stance!
Yakima Kid My KD is complcated by degenerated lumbar discs
Stan Yes Bruce, especially in a foot of snow. That's what I found out this week.
Bruce Wow, you have mentioned your pending retirement, but this Thursday.
jameson411 wow.. Ute.
carofer Yakima Kid , my pt taught me to exercise and use my toes more -- it helped me with balance a lot. toes rock.
jameson411 how come?
Paul Sramek Yes, You have to care full. It is not mobility scooter.
Yakima Kid Thanks--good to know
jameson411 Physical reasons or are you ready to move onto something else?
loshimo11 Mike... the only issue with this type of walker is that it comes with fixed wheels and is not as sturdy as the heavy duty ones. Other than that, it works well and you can usually get it for less than $100.
MikeG all of the wheels are fixed?
jameson411 Paul, I am watching the travelscoot video. I looks are to put together... are you able to do it or do you need help?
UTE Broke my arm four months ago and its been all downhill since then and the xmas crowd of hundreds didn't help
MikeG how can that be?
Yakima Kid Breakfast is ready---bye all and thanks
jameson411 *Looks hard to put together
MikeG but it looks light... and FAST!
jameson411 Sorry to hear that E.
Bruce Rich, I cannot imagine how difficult it must be to not have leg strength and then lose and arm (for pushing off). I know when I broke my tibia and fibula, life changed for six months ... no fun!
Paul Sramek I am able yet to leverage in my car trunk, I can go by my self to stores.,I am 76 & still work.
UTE When and even if my strngth doesnt com e back I'll still be going downtown even if its just to say hi to tourist on the street
Bruce Paul, that is impressive
jameson411 excellent
MikeG wow - that's great Paul!
loshimo11 Paul... wish I could do that!!!
jameson411 I am amazed at how hard simple things are becoming... like brushing teeth, shaving etc. Getting out is a big deal these days.
Stan I had to retire 4 years ago at 55. Probably the best thing I did.
jameson411 Paul, what is the battery life on the travelscoot?
Bruce Well, I need to get my dog out for a walk. Everyone stay upright except when sleeping.
UTE So Jameson...hows the teaching going
TedA I retired the end of 2009 at age 59 and that was the best thing I did
carofer Bruce --- or making love
loshimo11 Retired at 45 due to KD. Thought I loved my job but then I realized it was only the paychecks that I liked.
MikeG paychecks are nice...
loshimo11 Take care Bruce.
jameson411 E... loving it still. I am slowly adapting my classroom to be less physically demanding. And my dept head is awesome in supplying aid.
MikeG that's good
jameson411 They put a printer in my room so that I don't have to walk across the building to retrieve papers... stuff like that.
MikeG I work at home and do everything on the Internet - the only way I can do it.
Paul Sramek I will say travelscoot not for ever one. it folds up & goes in the over head ben.i airplane I have had one for over 2 years. my e-mail This email address is being protected from spambots. You need JavaScript enabled to view it. life is good Appeox 15/20 miles.
UTE Great to hear everybodys plugging away in their own ways
MikeG wow - that's pretty impressive Paul.
carofer i still work at 62. i am a bit of a workaholic.
jameson411 what do you do carofer?
MikeG how fast doe sit go? It looked as fast as my chair...
Stan Jameson, part of my reason for retiring was that my speech is affected. I was a trainer. I discovered some of the students could not understand me. My voice also did not project like it used to.
poohsdaddy Thanks guys ..... Hope to see you all here again next time. Bye
carofer small computer software company exec
MikeG I'm 62 also.
carofer (engineering)
MikeG bye Pooh
MikeG do you know Joomla???
Stan Bye Pooh. Is it that time already?
MikeG almost...
MikeG but stay on as long as you wish.
carofer i have heard of joomla. good product?
MikeG the chat room is ALWAYS open... 24/7
loshimo11 OK... the wife is up and cooking breakfast.... the smell of bacon is overwhelming.... Take care everyone. Stay healthy and upright!!!
jameson411 Stan, I can see that happening in a few years to me.
MikeG sounds good Luis - take care.
TedA Great Chat. Take care all.
carofer looks like drupal, which we use
Paul Sramek For more info on the travelscoot e-mail me This email address is being protected from spambots. You need JavaScript enabled to view it. Put your phone # I will call. its free for me.
Stan Bye Luis. Lunch time here
MikeG yeah, it's shopping time for us... need some 'stuff' for a Super Bowl party... :) Take care everyone!
Gary_KC Stay warm until the next chat. Bye all.
Stan Ok. until next time everyone.
Bruce I just changed the chat room page and added a CLICK HERE button. I hope that helps.
Paul Sramek next time
Bruce Well, my dog is still waiting. Take care!
Stan Ok. Thanks Bruce. Until next time. Bye.
carofer bye all and thanks
jameson411 take care guys
UTE Jameson..great to hear how youredoing..so long
jameson411 Eric, I still think fondly on our visit in UT
jameson411 thanks for that. Take care!
UTE It was great meeting and spending time with your family..say hi
jameson411 I will. Heidi is here, she says hi
jameson411 Later