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Kennedy's Disease Chat Transcript   9-03-2011

Topic:  What is working for you

Host:  Bruce Gaughran

 

TerryW
County fair & demolition derby today
Bruce
Terry, do you know if the chat room allows you to add your own avatars?  Example - a thumbnail picture of yourself.  It might be more interesting to connect a face with a name.
Bruce
I always enjoyed the fair.
TerryW
I am not sure.  I need to go through this update and look at the bells & shistles they have changed/added
TerryW
whistles
Bruce
Again, having a picture might make the chats more interesting.
TerryW
yes
Bruce
Ref. the fair, I always enjoyed those small sugar coated donuts.  They were a favorite of mine.
TerryW
Funnel Cakes are my weakness
Bruce
This latest fad of deep fried butter sounds strange, but they say it is quite good.
TerryW
Eww
TerryW
What do they call it?  Heart attack on a stick
Bruce
We grew up going to the county fair.  It was always a family event.
TerryW
It's gonna be a hot one out there today
Bruce
I sure wish we could get a few guests.  For some reason this has been a difficult year for gaining a guest's interest.
Bruce
We are still in a drought and having record heat.  Yesterday was 99 and today is supposed to be 96.
TerryW
you did not get any of that rain at all?
Bruce
None ...
Bruce
Morning Gary
TerryW
Hi GAry
Bruce
How are things in the MW
Gary_KC
Good morning! This is Gary joining in from Kansa City. It is a fine weather with 80 degrees.
Bruce
Morning Stan
Bruce
Morning Paul
TerryW
Hi Stan
Bruce
Terry and I were feeling a little lonely.
TerryW
and Paul
Stan
Good morning Bruce, Terry, Paul.
Gary_KC
Hi TerryW and Bruce.
Bruce
I had good news last week.  A story I wrote was published in "Indigo Rising" magazine.
TerryW
:)
Stan
Hi Gary_KC
Gary_KC
Hi Stan
TerryW
what was it about?
TerryW
You are a good writer
Bruce
I am happy because college football is on again.
Bruce
Thanks, Terry.  I try and I am still learning.
Stan
I never heard of the magazine. I'll have to check it out
Bruce
Tonight my Georgia Bulldogs play Boise State.  I am concerned because Boise is ranked #5.
Bruce
Indigo Rising is a "Magazine for the Arts".  It publishes fiction, poety and photographs.  It has been around for about a year and a half.
TerryW
Today our Fresno Bulldogs play San Fran I think
Stan
It appears the Chat site has been updated
TerryW
yes
Bruce
It looks nice.
TerryW
Hi Dan
Bruce
Morning Dan
Bruce
Fort Myers is a nice area.  I believe their use to be a place on the beach called "The Crows Nest" that served fantastic fronzen pina colatas.
DanT
g'morning Bruce
DanT
I've heard of it but haven't been there, I'll have to ask my sister
Bruce
What on your minds today?  ANything you want to talk about.
Bruce
Terry I think you jinxed me.  I am mispelling words all over the place this morning. 8)
DanT
HI Terry, didn't mean to ignore you, trying to get this window sized so I can see it
TerryW
I had to do the same
TerryW
I started taking Cymbalta a little over a week ago,  seems to be helping quite a bit
Stan
Me too. At least that means it is not us
Bruce
Graham Lee in the UK has been trying to start up a support group for his area.  He has been working on it for about two months.  Where there was initial interest, it seems to have died off and he is struggling to get anyone interested in communicating either through emails, conference calls or this chat room.
Bruce
Morning Luis
loshimo11
Hello everyone. This is loshimo11 checking in from an overcast and cloudy San Francisco.
DanT
what is Cymbalta for?
loshimo11
Good morning Bruce.
TerryW
that is to bad Bruce
Bruce
Connection reset by peer
Bruce
Kennedy's Disease Chat
Bruce
Weird, I was just kicked out.
TerryW
Cymbalta if for Nerve pain & also for depression
Bruce
You said it seems to be helping, Terry ...
TerryW
I needed it for severe depression that came on suddenly about 3 months ago
TerryW
I never took mood meds before,  this saved me literally
DanT
I was taking Gabapentin but my neurologist had me stop because it was affecting my balance.
Bruce
Morning UTE
UTE
Morning all
TerryW
Dan that was his other choice if not Cymbalta
TerryW
My doc
Gary_KC
Terry, do you have nerve pain?
Bruce
Dan, we do not need anything that messes with our balance.
TerryW
I have pain not sure if was nerve pain but I take Ultram for that
Bruce
Are any of you using Dutasteride (Avodart)?
DanT
that's a fact Bruce, I can only stand about 5 min at a time and walk maybe 40 feet
TerryW
Seems like the Cymbalta and the Ultram work fine together for pain
Bruce
Good to hear
Stan
Not using dtasteride
Gary_KC
Bruce, Yes, I am taking it over 1 year.
Bruce
Have you seen any benefits or is it hard to tell, Gary?
Gary_KC
But I do not have any improvement like you have.
Bruce
I still believe it has added two years of strength back into my life.
Bruce
Terry, how are the dogs doing?
Gary_KC
I am feeling that it is slowing down the progress. :-)
loshimo11
I haven't been on this chat for a while but has the fact that Jerry Lewis is no longer in the MDA Telethon been discussed?
TerryW
I was always the type that thought that I could handle the depressive thoughts that came into my head and I did for the longest time but then the thoughts got away from me and made me have very bad thought every day and that is when I decided I needed help.
Bruce
No, Luis, but it is interesting that they dumped him.
UTE
Speaking of nerve pain...I get alot more continuous pressure in the feet...besides the neuropathy...continually damaging the toes when I fall doesnt help
Bruce
You made the right move, Terry.  Sometimes outside intervention is needed.  My physical therapist was someone I needed a few years agao and it made a huge difference in my life.
loshimo11
Yeah.... It also seems like this year's telethon is not as big a thing as in the past. I wonder who is making the decisions now.
Bruce
Yes, Luis, I heard that ours is going to be only six hours long.  I wonder if they will raise as much money.
Bruce
UTE, my feet always feel cold even if they are warm to the touch.
TerryW
Same here bruce
Stan
It's only going to be a six-hour show here too.
Bruce
It gets frustating in the winter because I will wear socks to bed and they still feel cold (with the electric blanket on).
DanT
I know the MDA is having problems in this economy.  Back in Feb they closed the MDA clinic in Fort Myers and now want the patients here to go to Sarasota , too far for me
Bruce
I believe it was Dr. Taylor that first starting talking about neuropathy in the feet.  He was right on.
Stan
I have the same feeling in my feet year around. 90+ degrees here yesterday and my feet felt cold.
TerryW
Bruce even here in California I wear sweat pants to bed and tuck my sock into them even in the summer.
Bruce
Stan, yes, mine are cold all year round.  I just notice it more in the winter for some reason.  My wife can' believe that I triple the blankets on my feet during the summer.
Bruce
When I was younger, I was the one who never wanted any heavy blankets on.  Now I am the one with the blankets.  Go figure.
TerryW
I now bought Alpaca socks which are way warmer than any others
Gary_KC
Brce, I use 2 or 3 electrical pads under foot in bed in winter. I still feel cold, too.
TerryW
softer also
Bruce
Terry, I have six pairs of those and they work.
DanT
My feet felt like that in Virginia and except for a couple cold nights last winter haven't had that prob here in Florida.  I have such little feeling in my feet and limitied dexterity with my hands that I go to a Podiatrist everyother month.
Bruce
My hands start to lose control below 50 degrees.
TerryW
It is so good to talk to others that understand the feeling that we experience
Bruce
We are a bunch of strange birds!:}
TerryW
when you try to explain it to others they just don't understand
Bruce
I agree, my wife even after all these years still questions me on the blankets and socks.
UTE
Speaking of animals...do you all have one of mans best friends
Bruce
Morning Billeric
Stan
My hands cramp up below 50. At first I thought it was arthritis or damage from frostbite years earlier.
TerryW
in winter when my hands get cold I try to put gloves on sometimes and I can't hold my fingers straight to get them in the gloves, they fold up and won't go in
Bruce
Stan, it is funny how we initially blame everything on something else and then later blame everything on KD.
TerryW
UTE I have 2 , 120 Lb  dogs
Stan
No, UTE, we don't have a dog anymore.
billeric
a bit late-but good morning guys
TerryW
hi bill
Bruce
Terry, i started wearing choppers and they have made it easier.
DanT
I have the same probs with my habds when  they get cold,
Bruce
UTE, I have a 13 year old beagle ... my best friend.
UTE
Bill, how are you and ur wife liking the midwest
loshimo11
UTE, my daughter has 2 small dogs. It's the best of both worlds. I get to play with them and she has to do everythig else!!!
TerryW
I now get those little hand warmer packets and fleece lined work gloves and put the packets in the gloves where my palms sit,  works very good
billeric
Pretty good.  Best part is being close to our son.
UTE
I have a small pomtese
loshimo11
DanT... Is it cold there now?
TerryW
My dogs are 1/2 Lab & 1/2 Great Perenese
DanT
Loshimo11, not now I think we've had only 2 days below 90 since May
Bruce
BTW, last weekend I was one of the presenters at a Writers Conference at Dalton State College.  The building was five years old and had everything designed for the handicap in mind.  It was a great experience for me.  Their audio-visual equipment was the best I have ever worked with.  It was fun to have access to every room and plenty of room to maneuver a chair.
UTE
Terry...what kind of huge dogs are they?
TerryW
see above
Bruce
Terry, the hot pockets hand warmers are something I use all winter.  They really work!
TerryW
yes
TerryW
I buy them in bulk
Bruce
Me too at Sam's Club
Stan
I just stay inside for the most part
TerryW
I go crazy staying inside
TerryW
Need that Sun Vitamin D
billeric
I haven't seen a winter in 19 years.  Should be a real experiance
Stan
Ah, that explains it. : )
Bruce
My dog forces me to get out four to five times a day rain or shine.  He is good for me.  We have a half-hour walk that is fun.
loshimo11
Terry... I know the feeling... I also feel trapped when I can't go out.
Bruce
Billeric, are you in MN (Rochester)?
TerryW
I need to get a wagon to hook to my dogs to take me for a walk
TerryW
or ride
Bruce
Good Idea
billeric
No, moved to Cincinnati, Ohio after my wife had a stroke.
Bruce
Oh, must have been confused.  Cinci is a nice area.
TerryW
I now have a Samsung Tab Pad that I take with me into town to wi-fi hotspots
billeric
What we have seen, seems o.k.
TerryW
It is very cool
Bruce
I heard the Samsung iPad is pretty good.
TerryW
Yes
loshimo11
It's funny, but one of my daughter's dog (a small poodle) always looks after me. Whenever I use my stairlift, he waits until I get to the top to make sure I'm OK. Once there, he leaves and joins the rest of the family.
TerryW
I can't believe that HP is getting away from Hardware
Bruce
My wife wants her own laptop because I hog the computer.
Stan
Same here, Bruce.
Bruce
Dogs are smart, Luis.  They seem to know things.
TerryW
Bruce,  If you have Wi-fi in the house the tab works great
Bruce
Yet, every time I talk to her about what she wants she wants something easy ... affordable ... no hassles ... etc.  In other words, she wants me to set it up for her and make certain it works.
UTE
Bill, the snow can be pretty...especially when the xmas lites come out...I was in PHX a month ago for my 65th...110 degrees...they even had to protect the cactus with a covering
Bruce
If we got the laptop, we would have to go to wi-fi.
TerryW
Yhe tab is already setup for G-mail & such
Stan
Typical story here  too.
Bruce
UTE, that's right. you were on a trip to the SW.  How did that go?
TerryW
Lots of free apps to download & use
Bruce
Free is good!
TerryW
Even the pay apps are less than &5 for most
Bruce
I have beem a Firefox fan for many years.  I tried Chrome about a year ago and did not like it.  I tried it again last week and I am beginning to like it a lot.
TerryW
Does not have Word or Excel though
TerryW
I love Chrome
Bruce
How about the touch screen keyboard.  It seems like that might be more difficult to use.
TerryW
tried firefox on the laptop, did not like it as well
UTE
Bruce, my wife now had to do all the driving...but we saw all the red rock mt parks between here and AZ...in the car my feet swelled up badly
Bruce
The red rock area is fantastic.  I believe I could live there.
TerryW
the touch screen is pretty easy to use, you can also buy a wireless real keyboard. The tab can also hoo to the HD TV to have huge display
TerryW
It also has voice recognition built in
TerryW
Say it and it types it
Bruce
Sorry to hear about the feet.  Elevating them will often help.  Performing some exercises while sitting also helps.
Bruce
Do you all realize what a wealth of information we are when we get together?
TerryW
:)
loshimo11
I recently got a pair of something called "compressions socks" I wore them throughout the day and kept my feet from swelling.
TerryW
I have seen them in catalogs
Stan
My wife has a script from her Dr. for them.
Bruce
I don't know if I could get compression socks on.  My left fingers and thumb have weakened substantially ... especiall when it is cold.
loshimo11
They worked great for me, however, they are a pain to put them on and off.
TerryW
Sorry all,  I have to take off.  Chat withyou all again soon
Bruce
Enjoy the fair!
TerryW
thanks
DanT
Connection reset by peer
Stan
See ya
billeric
Bye Terrry
loshimo11
You'll need someone else to help putting them on and off.'
loshimo11
Take care TerryW.
Bruce
Terry is heading to the county fair and destruction derby.
UTE
I've gotten to the point with my feet that barefeet is best...socks can make me slip... must be getting time to watch football?
Stan
How can the Fair compare with this?
Bruce
John Coakley and Paul DeSchamp are busy putting together the final agenda and other information for this year's conference.  Something should be coming out in a week or so on it.
loshimo11
Have we had a headcount of the people attending?
Bruce
UTE, BYU is playing Auborn?  Is that correct?  Who does Michigan play?
Bruce
No, things are moving a little slower than normal this year because of extenuating (family, health, etc.) reasons.  Again, we hope to have something out soon.
loshimo11
I heard from Alexandre (from Brazil). I think he's making plans on attending.
Bruce
We hope to be announcing the KDA research grant awards in another month.
Bruce
Luis, yup, he wrote me that he would be there.
UTE
Western Mich plays MI...and not sure how my MSU did yesterday
Bruce
They won, UTE.  28-6
Bruce
The TCU and Baylor game was exciting ... no defense ... but very exciting.
UTE
And after living in Oregon for 25 yrs looking forward to the ducks playing
Bruce
Tonight is a big game for them.  We'll see if their speed can control the LSU defense.
UTE
BYU is at Old Miss
loshimo11
Well folks... It's breakfast time here in the west coast, so it's time to go. Have a nice day everyone!!!
Bruce
The weather this year has been something.  Almost every part of the country has experienced weird weather patterns.
Stan
Bye Luis.
Bruce
Luis, good to hear from you.  Take care Friend
Stan
Yep, with almost a month above 90 here, I did not get much done outside except in the evening
Bruce
Gary, were you part of the dutasteride trial initially or just went on it after the results were published?  I believe you said you have been on it for about a year?
Bruce
Stan, I feel the same way.  It has been to hot and far to dry.  No fun!  Of course, in about four months it will be too cold.  I guess I am never really satisfied.
UTE
Weather has been weird...we only had one day this summer above 100 and we had skiing in July
Bruce
I have often said if it weren't for the weather, we would have nothing in common to talk about.
Bruce
Are there any subjects that would be good for a chat?  I am always interested in ideas that might be of interest to others.
Paul Sramek
Good to hear everone. Out of here, where it has been over 100 for 68 days.[Dallas]
Bruce
Take care Paul
Stan
Bye Paul
billeric
Talk to you guys in a couple weeks.   Take care.
UTE
So long all...good chat
Stan
I guess it depends if there are enough of us interested in any one subject. What about enteral feeding. It is something we may all have to deal with,
Bruce
The KDA is considering establishing an advisory board to help set direction and provide feedback to the board on things.
Bruce
Take care UTE
Stan
Bye UTE
Bruce
I might be putting something out soon on this.  We need people like you on this team.
Bruce
Stan, what do you mean enteral feeding?
Stan
Feeding through a tube in the stomach. It's called a PEG tube. For people that have difficulty, or cannot swallow without asprating.
Bruce
I thought that is what you meant, but was not familiar with the term.  PEG is something interesting.  Thanks
Bruce
I do know that several men with KD have had to resort to PEG feeding.
Bruce
Thanks, that might be interesting.
Stan
I've been working on an article. Not done yet. It is a complex topic.
Bruce
Great.  That will be a good one I am sure.
Stan
BTW, I've had one for two years now.
Bruce
Well, speaking of dogs, I need to get Fred out before it gets any hotter.  Take care guy.
Bruce
Oh, then it will be even more interesting.
Bruce
Stay upright!
Stan
OK, Bye