| 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 |
