Kennedy's Disease Association

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Kennedy's Disease Chat Transcript   11-19-11

Topic:  Open Forum

Host:  Lou Tudor


UTE
Good morning Lou, how's the weather?
UTE
Morning Stan
Stan
Good morning all from freezing cold Michigan
UTE
We Got alot of snow overniter
Stan
I heard it's on the way here, UTE
loutudor
Good morning Guys!
UTE
Gets a person in the Xmas mood
Stan
Morning Lou
loutudor
I do miss snow at Christmas!
UTE
I forgot, what state are you in Lou?
Stan
It doesn't put me in the XMas mood like it used to.
loutudor
I'm in Florida now
loutudor
I've lived in Mich, the Carolinas and Calif too
loutudor
Where are you, UTE?
UTE
Lou, what part of Michigan where you in?
loutudor
Detroit suburbs
UTE
I'm a Michigander...went to Jr HI in Dearborn...but Navy took me to Oregon..but now in Salt Lake
loutudor
My husband grew up in Dearborn, MI...went to Fordson HS
UTE
Small world...I grew uo se of there in the Irish Hills
Gary_KC
Good morning. This is Gary joining in from Kansas City.
loutudor
My husband just came in...he went to Woodworth JHS in Dearborn...
Stan
Morning, Gary
loutudor
Good morning Gary
UTE
Is everything up to date in KC?
Gary_KC
Hi Stan and loutudor.
Stan
I grew up in Detroit, went to Cass Tech. Live in Albion now I'm retired.
UTE
I was at Stout Jr HI but the ford testing ground
loutudor
Small group this morning, but a few more may join later
Gary_KC
UTE, it is 59 degrees with overcast this morning. I am fine thank you.
UTE
32 here
loutudor
Amazing what a small world we live in...or did we all just leave the Detroit area??
Stan
Cloudy, windy, and it finally made it to 46 here.
loutudor
None of you want to know about the lovely weather here today, of course don't ask me in August  :)
loutudor
Hey everyone, don't forget to order the new cookboks and Muscle car t-shirts!
Stan
Wife already got ours
loutudor
Has anyone heard about the KDA conference that just took place in Baltimore?
loutudor
Good morning Funchal and Stewart!
Stan
There was a little blurb on Facebook about the conf.
Stewart
Good morning
Stan
Morning funchal and Stewart. Hope all is well.
loutudor
We awarded three different researchers checks for KD research!!
loutudor
There will be a full conference report coming out...
loutudor
I'm anxious to hear what the dietician had to say in her presentation
loutudor
Any problems with the colder weather to discuss?
Stan
Do the dieticians ever address issues with people constantly underweight, or just those with problems being overweight?
loutudor
Stan, as you know, I had to leave the conference so I don't know what she discussed.  However I talked with some folks in Houston recently that praise the use of juicers for fresh fruits and vegetables.
Stewart
Most of what she talked about is on www.nutrition.gov/
Stan
Now that it's gotten cold here, my legs, and hands cramp very easily. Can't get warm. Same every winter.
loutudor
Thanks Stewart!
UTE
My motor neuron disease clinic advises me to maintain the same weight and drink lots of water.
loutudor
UTE, to maintain is good
loutudor
Stan, it must be difficult to prevent falling on the ice and snow
Stan
I have never seen anyone address issues with being underweight. I'm under a drs. care to try and keep my weight up. Juicers, fruits and vegetables are more for losing weight. Do not work with me.
UTE
Two dumb questions...for the cookbook do they take debit cards...and what do you type to get on kda facebook?
Stan
It is difficult walking, Lou. I usually have a cane just in case.
loutudor
Stan, how do you calorie up?
Stan
Feeding tube. Jevity 1.5, Lou
loutudor
kennedysdisease.org
UTE
oops
loutudor
Stan, I guess milkshakes, etc would be good?
Stan
Milkshakes are good once in a while. McD's is 6 miles away.
loutudor
Ute, once you get on the KDA website, go to ways to help and the KDA store had a place on the drop down menu
UTE
tks
loutudor
Stan, you are very active and probably have high metabolism
loutudor
funchal, where are you located?
Stan
Yes. I have had an issue maintaining my weight all my life.
loutudor
Stan, you can drink the supplemental drinks as a snck
Stan
Yes. I usually have an Ensure or two every day for the last 20 years.
loutudor
So, your weight problem is not caused by KD
Stan
I don't think so. But it does have a potentially serious detrimental effect.
loutudor
Most people with KD work at keeping a normal weight, as being overweight causes more mobility problems
Stewart
Before I went to the conference (which I found it very worthwhile). I started the first steps on the exercise study at NIH, What a great place. In 12 weeks or so I have to go back.
Stewart
They were saying next years conference will be in New Orleans.
loutudor
Tell us more about that, Stewart!
Stan
An inability to keep weight on, means muscle loss.
Stewart
I just started drinking muscle milk stuff
Stan
I'll have to look into other sources
loutudor
My son has completely given up coffee and diet soda...he now drinks tea or water
loutudor
Good morning Paul
Stan
Hi, Paul
Stewart
There are two parts to the study you are randomly picked as to which exercises you do  I don’t know the difference, they won’t  tell until after the study.
UTE
Good morning Paul
loutudor
Stewart, do you know how many of our KD folks are in the exercise program?
Paul Sramek
Hi from Dallas
Gary_KC
I have muscle weakness for mouth and chin. I hardly eat carrot sticks in salada bar.
loutudor
Gary, that's why some guys are using juicers for the fruits and vegetables
Stewart
It’s good, to be involved so far I think 18, they signed up a few more at the conferance, they are looking for 50-75 in all.  In a couple of years there will be some new medications trials coming I’m told don’t know much more.
loutudor
Many men are hopeful that Avadart will be determined to have a positive effect
loutudor
Stewart, are you feeling better thru the exercise program yet?
Gary_KC
I am hoping that Avodart will be slow down the progress too. :-)
Paul Sramek
I took Avadart for two years + It did not help me, that I could tell.
Stewart
I noticed a guy at the conference with gum, I was surprised my jaws would get to tired, he said his Dr has him going it for exercise.
loutudor
That;s the first I've heard about gum...
Stewart
To early to tell I just started but I will share once my results are in.
loutudor
Everyone is different, Paul  Was it Avadart prescribed or was it a blind study?
Gary_KC
Paul, I am taking it too for about 2 years. Do you feel that the progress is being slow down???
Paul Sramek
I tald to the blind study &  found out the Drug Avadart. I them went to Southwest Medical. The doctors they put me on it.
loutudor
Two men at the conference told me they take Avadart and it's helped to keep them from progressing with KD
Paul Sramek
The test did not a inprovement or a decline. 76 still able to walk some work full time.
loutudor
Paul you're doing very well!
loutudor
Stan, I remember my Dad loved buttermilk...he also drank eggnog during the holidays
Paul Sramek
I think that you need a good mind set. push, push. Thank you.
UTE
Paul, do u think your work helps keep u in shape?
Gary_KC
My understanding is that Avadart may slow down the progress but may not improve. Exercise may improve the strenght.
Stan
I drink home made eggnog most of the year.
loutudor
You are correct, Gary
Stewart
I'm on Dutasteride (Avadart) I believe it helped me, I’ve been on it for six months I’m going to hang in there for a while longer. Your mind set is so important.
Paul Sramek
Yes!!!!!!!!! My Doctors @ Southwest, it is important to keep pushing as long as you can.
loutudor
Stewart, keep up the good work!
loutudor
Even in retirement...you just find something else to keep busy
Stan
I still do most of my car and equipment repairs, as well as yard work and home repairs. I walk the few hundred feet to the mailbox. Could not work full time anymore.
Paul Sramek
If something  helps you need to build on that, if you thing think it works then it work. Just keep going.
loutudor
Stan, you are so right!
loutudor
Paull, I love your positive mind set!
loutudor
Well, any last words this morning guys?
Paul Sramek
I find that there  is always a way to do the thinks I need done.
Stewart
It’s my turn to make breakfast my son (13) did it last Saturday so I have to go (pancakes), Have a great day a great thanksgiving.
loutudor
Happy Thanksgiving Everyone!!
Stan
Just stay upright, keep trying, and have a Great Holiday everyone.
loutudor
Take care guys
Paul Sramek
Happy Thanksgiving !!
Gary_KC
Take care all, too. Bye.
Stan
Bye Lou, Paul, Gary, UTE. Gotta go hang lights.
UTE
I must be the one who's furthest out of shape...at 65 my powerchair takes me to the mailbox and no strength for working with tools unless it's a computer mouse ...happy turkey day to all
loutudor
YES!! Stan!!
loutudor
UTE, you're still doing well at 65...some in their 40's are at this stage
loutudor
Bye for now and take care
UTE
When in Detroit was your dad in the auto industry