Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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Kennedy's Disease Chat Transcript  07-05-2008

Topic:  Open Forum

Host: Un-hosted


BEGIN CHAT

 

Ron : Hi Dart--where is everyone this morning?
Gary_KC : Good morning. This is Gary Uchiyama joining from KC.
Ron : Hope you all had a great 4th of july.
Ron : Hi Michael
Michael17860 : What is a good topic to talk about today?
Ron : Did you all get to see the fireworks in your area?
Michael17860 : We will be having them all weekend.
Ron : Michaels--any topic that could help any of us with Kennedys.
Dart! : "Here I am, Folks - as to the missing ones, the fishing must be super-good."
Michael17860 : Has anyone tried Creatine
Ron : I know everyone is anxiously awaiting the results of the clinical trial at NIH.
Gary_KC : "Mich, I tried Creatine long time ago. It didn't help me at all."
Michael17860 : I am waiting to see what they will be coming up with  next.
Michael17860 : I feel better taking it.
Ron : I assume that I was on the placiebo because it didn't seem to help me much.
Ron : Hi Ute. Where are you living?
UTE : Fireworks were a challenge last nite... my wife and a nice person from the crowd helped me get off the ground at the end
UTE : I'm living in Utah...password use to be MICH
Ron : That is tough getting back to your feet.
Ron : Right.
Michael17860 : There are alot of Good people out there to help out.
Dart! : "Are placebos fair, in that they give false hope, and waste  valuable treatment time?"
UTE : A lot of nice people till you get in your car... and then the drivers on the street are something else
Gary_KC : "I wonder, were the SBMA model mouse killed after Dutasteride test at NIH or were they still checked the strengh later?"
Ron : I am not afraid to ask anyone for help. Some ask if they can help. This makes taking their help much easier.
Michael17860 : "Thats call the containment factor, they are in there own  world inside the car and only they matter. (but not all people only a few that makes it seem like alot)."
Gary_KC : "My question is if we discountiue the dutasteride, what happen?"
Ron : Good question Gary.
Michael17860 : Thats a good question Gary.
Michael17860 : Ron where are You from?
Ron : I only hope that if the dutasteride helped some--that they will make it available to all of us.
Ron : "Michael--I am from Lancaster, PA."
Michael17860 : You can do what I do. I went to my Doctor and asked him to put me a Avodart.
Ron : "But, is Avodart the answer?"
Michael17860 : "I thought you were from PA, I live up in Paxinos. about 1.5 hrs from you."
Ron : We must get together some time.
Ron : Lunch and a BULL session.
Gary_KC : Is NIH using the Avodart for current trial?
Michael17860 : "I think that it helps alittle, Its not the cure but it helps. Pon e-mail me your phone # and we will get together soon. If you do not mind giving out your #."
Michael17860 : Yes Gary that is what they are using.
Ron : "The next trial at NIH might be strictly a exercise training program. Not to build muscle but, to be able to keep what we have."
UTE : Is Paxinos in Pennsylvania?
Michael17860 : Yes in PA.
Ron : Michael--My phone number is 717-393-0504. My e-mail address is This email address is being protected from spambots. You need JavaScript enabled to view it..
Michael17860 : "I will give you a call later, If thats ok."
Ron : What do you all do to make life with KD easier?
UTE : I think muscle exercise is an interesting thing to study... seems like we might be over exercising some muscles and underexercising others... and just plain losing others
Gary_KC : "We are hoping dutasteride slow down the progress. If we discotinue to take it, I am worry about faster progress??????"
Ron : I kdndow that I have gotten weaker in the last year. Don't know why. I am 68 years young.
Ron : should be know.
Michael17860 : I think that is a possibility Gary.
Michael17860 : "I just take me time doing things, and try to think out my  moves in advance."
Ron : Come on guys. What makes your life with KD easier?
Michael17860 : MY time
Michael17860 : Having a good wife
Ron : I know that using my scooter helps me alot. I only use it outside on eht street or in the yard.
UTE : To make life easier... I absolutely need to use a counter to rest my arms against to move my arms around without having to lift them
Michael17860 : Living on one floor house.
Gary_KC : "Ron, I participate in local MDA/ALS meeting every month. I can talk to them."
Ron : I don't know how anyone with KD can climb the stairs to the second floor several times a day.
Michael17860 : I am 53  and if I have to go to the basement for anything it wipes me out for a few min.
Dart! : "I would like to become young again and be free of disease, but don't believe in the drug companies have the answer. For sure, drugs help some ailments, but cause many as well. -my opinion! "
UTE : At 55 I could climb stairs but really had to learn to lean hard on the railing...now threestairs is hard at 61 yrs old
Ron : Talking with anyone with similar difficulties helps to understand what they go thru every day.
Michael17860 : "Your right Dart, I really think that stem-cells are the real cure................"
Ron : Sharing--that is what the KDA chat is all about.
Michael17860 : Not durgs
Michael17860 : drugs typing not to good
Ron : Well guys- I must go for now. Stay healthy and happy till next we chat.
Michael17860 : Buy Ron
Dart! : "If we  are blessed with a faithful and capable wife, we have something for which we should be thankful. and we would be wise to tell them so, says I!"
Ron : Happy 4th...
UTE : Have a good day Ron
Gary_KC : "I am hoping RNA modification will cure our disease, but we may have to wait at least 10 years???"
UTE : I I they're super
Michael17860 : Some people are going out of USA to get stem-cell treatment for other diseases. One day it will  happen for ours.
UTE : With all the scientist are doing with everthing from fruit flies to mice maybe stem cells won't be necessary
Dart! : "Stem cells have come a long way, in that some are now available without having to kill unborn children."
FL-DON : "gm all, been 2 church"
Michael17860 : The only concere I have with drugs for a cure is the side effects.
UTE : "POOH, how was your 4th and where do you live?"
Gary_KC : "Mich, stem-cell treatment may build new muscle but we still have our disease DNA. So the disease may not be stopped???"
poohsdaddy : Good Morning; finally got in after trying for more than 45 minutes
FL-DON : "ime here late, any news on the nov conference?"
UTE : I find it can take days to get into the chat but I think its because of my old computer (Windows 98???)
Michael17860 : You can get stem cells from alto of different places besides the unborn children. One they they will  be able to target the part of Dna with a fixed Dna.
poohsdaddy : "Saw an infomercial during the night about HMD or HDM that is supposed to help rebuild  muscle after surgery, etc. ????"
Michael17860 : Sorry about the typing.....
Michael17860 : Better late than never Pooh
poohsdaddy : Also heard about taking seaweed pills that are supposed to help re-build stem cells from a woman whose husband had MS.
Dart! : Michael - 'alto'?
UTE : I'm still trying to learn how to interact with this new screen...whats with the ignore shield
Michael17860 : also bad typing
poohsdaddy : The 4th was okay; watched fireworks from our back door to park since we are on higher ground.
Michael17860 : "alot, not alto"
Dart! : "Oh, 'a lot'! Yes, science IS making some headway."
Michael17860 : "fingers not working right, one finger faster than other...."
poohsdaddy : Have you heard of either of these as being helpful ??
Dart! : "You are not alone with your finger problems, Michael!"
UTE : Can't say as I have pooh... finger probs... I use them like chop sticks to eat
Michael17860 : "The mind thinks one thing, finger  types other."
poohsdaddy : "Hands, arms and fingers are still okay, but hips and legs are constant pain or weakness."
poohsdaddy : "Am in WI, about 25 miles from Milwaukee.  Anyone else nearby??"
UTE : it definitely 1st started with the hips and legs... not nearby anymore but lived in Michigan as a kid
Dart! : "So true with tthe typing - I often save mistakes by using a pencil with an eraser in each hand. It must look rediculous, but saves having to correct errors."
Michael17860 : "Not I, well Guys I have to go, People are comming over to eat. Later. have a Great weekend....."
Dart! : The pencil has the eraser on the end of it - old fashioned!
UTE : "Michael, have a good one"
poohsdaddy : "Great idea -- as I worked with special needs"" students many years ago"""
Dart! : "Yes, it keeps my errant fingers away from the keys. And I am gone! Have a good one All!"
poohsdaddy : Thanks guys; I'll try to get in earlier next time.  Lots to do today and next few weeks-as our youngest is getting married soon.
UTE : You all have a great weekend
Gary_KC : "Have a nice weekend, all. Bye"

END CHAT