Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Surfing the internet I found the KDA and for me it was like an island for a castaway."

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Kennedy's Disease Chat Transcript   04-16-2011

Topic:  Open Forum

Host:  Mike Goynes

MikeG
morning dant
MikeG
we're only a couple of hours away from each other.  I'm in Sun City Center...
MikeG
we should get together fro lunch sometime.
MikeG
hi Stan
Stan
Morning Mike
MikeG
ready for the car show?
Stan
I'm ready. Don't know about anyone else.
MikeG
:)
dant99
good morning Mike and Stan
Stan
Morning dant99
MikeG
save some t-shirts for us... they look good.  At least the proofs do...
Stan
Ok. will do. What sizes?
MikeG
medium
MikeG
maybe one large also
MikeG
2 M, 1 L
MikeG
what are you going to sell them for?
MikeG
$20?
MikeG
hi Pooh
Stan
As much as we can get. Actually, Lou hasn't told us yet.
Stan
Hi Pooh
MikeG
if you can get more - go for it!
poohsdaddy
Good Morning Guys....
MikeG
I'll pay anything you ask... :)
MikeG
if the KDA can get $1k for a coffee cup......
Gary_KC
Good morning. This is Gary joining in from Kansas City. It is 40 degrees with a little rain this morning.
MikeG
hi Gary
poohsdaddy
Must be nice to have money to spend.... After taxes, I can barely pay attention.
Gary_KC
Hi Mike
Stan
Glad you have that kind of money Mike. I don't.
MikeG
wow!  so you guys are still in winter
Stan
Hi Gary. About the same weather here too.
MikeG
hi Luis
poohsdaddy
Had sunshine once this week.... mostly cloudy and damp all week here.
loshimo11
Good morning everyone. This is loshimo11 joiing in from a rather overcast San Francisco.
MikeG
we've been in the 80s her in FL
loshimo11
Hey Mike... How are things??
Stan
Hi Luis.
MikeG
bright sunny blue skies...
MikeG
hi UTE
loshimo11
Hi Stan...
Stan
We had a couple good days this week so I raked out the flower beds.
poohsdaddy
Hope elvspretzl comes here today.... to tell us more about his trip to NIH last week.
MikeG
I'm afraid my raking days are over!
MikeG
hi Paul
Stan
Hi UTE, Paul, and anyone else I might have missed.
Paul Sramek
Good Morning
poohsdaddy
The Spring Newsletter looks good.  Only read part of it though.... have to get back to it later.
MikeG
what was elvspretzl going to the NIH for???
MikeG
yes it was a good newsletter - as they all are!
poohsdaddy
A new study.... related to "exercise/physical therapy" and KD>
UTE
Morning all...hopefully no more snow this week... may cause a flood of the mts
MikeG
we need more volunteers to write articles for it though.
MikeG
ok, I wanted Angela to be our guest today and tell us about the trial but she went on spring breal...
Stan
I wish we could get more people to write articles for the newsletter too. Judging from the comments in the Forums, I know we have some people that write quite well.
poohsdaddy
What type of articles are you looking for ?
MikeG
yep!
loshimo11
Anyone hear how Susanne is coming along? She came down with a bad case of the flu earlier this week.
MikeG
I sent a note to Dr. Fischbeck asking him about the trial and here is his response:
MikeG
elvspretzl
Stan
I know Bruce & co. would like anything. about your trips, experiences, etc. with KD. I have a couple more ideas for the next one.
MikeG
sorry
MikeG
won't paste... :(
poohsdaddy
Haven't talked to her, but she "Likes" and "Comments" after many votes are cast for her and The Energizer Bunny.
loshimo11
Me and a couple of relatives vote for her (Susanne) every day. Hope she wins the contest... Will be good for the KDA.
MikeG
she has a great chance to win it!
MikeG
I have 10 email addresses and I vote with each one every day!
MikeG
morning Tom
poohsdaddy
:?
Stan
Carla and I vote every day.
dant99
I vote every day for her and have asked my friends and family to do the same
MikeG
I sent the link out to everyone in my contacts list and a lot of them also have multiple addresses so she is really getting some votes!
poohsdaddy
Kathy & I also vote every day.... just wish we knew if our family is also voting as often.
TomK
i try to vote daily but between working all day on a computer I am not always ready to come Home and get on the Internet.
MikeG
yep - I have the same issue Tom.
Stan
There is no way to tell how many votes she has this time or who is voting. That may be a good thing. I do know many of my family members are voting even though they don't post that they have. They don't have to report to me, just their conscience.
TomK
I  need some advise; we are about to Build our Final Dream Home...One Story Ranch with NO STEPS... ANYBODY KNOW OF BUILD PLANS FOR  KDA HOMES??
MikeG
when she was presented the $1k check for the KDA this week, the Energizer people said she was the most energetic of the 10 finalists... but even they did'n know the results of voting... it's done by a 3rd party company.
MikeG
no - we just bought a ranch and added some small ramps to the entrances.
Stan
I would look for house plans for disabled people in general. Have not seen anything for KD homes specifically.
MikeG
maybe the ADA could help???
MikeG
or MDA
UTE
As far as homes go... maybe organizations like Independent Living would have info... or know who to go to
Stan
Or, if we find anything, post it in a Forum category for you. Accessibility?
MikeG
make sure the bathroom entrances have wide clearances...
loshimo11
TomK... Don't know of any particular plans specifically designed for KDA folks. Here in the Bay Area there was a very popular type of house built in the 60's. They're all one level and have an indoor garden inside the house. Pretty nice setup for us disabled folks although not my style.
MikeG
hi Terry
TomK
Great idea...just looking for some tips etc.
TerryW
Hekko everybody
TerryW
Hello
Stan
Hey Terry.
loshimo11
Hey Terry... How you doing???
TerryW
doing ok,  Does anyone else take allergy medicine during the spring regularly?
MikeG
Terry, I'm having a problem pasting from the paste buffer... have you had that before?
MikeG
my brother does, Terry
TerryW
no mike
TomK
We have garden homes from theb 60's in cincinnati, but my wife is leaning more towards Col,onial.
MikeG
Claritin - I believe...
loshimo11
Colonials are nice, but aren't they normally multi levels?
TerryW
I have had terrible weakness and been falling a lot since I have neen taking my Claritin D was wondering if somehow it could be related
poohsdaddy
I take allergy medicine almost daily... (Generic Benadryl-50mg)
TomK
She found a Colonial Ranch...But wants to make sure the inside are easily accessible.
MikeG
I haven't heard of that causing weakness, Terry.
dant99
I've been trying to paste a link to a newscast feature about KD from Cleveland but apparently this chat doesn't allow pasting, anyhow it's the first reference to KD I've seen oiutside the KDA/MDA community.  We need more public awarness. www.newsnet5.com
Stan
Mine looks like an old country farm house. 2 story but nice floor plan. What I need is all on the main floor.
TerryW
I must be in a progression slide them :(
poohsdaddy
Terry, probably not, but anything's possible.  I'd ask the pharmacist if anyone else has had that problem with Claritin -D.
MikeG
I've noiticed the same thing Dant
TerryW
I will check the seetings in chat before the next one to see if there is a switch for pasting that may be turned off.  Mike were we able to in the past?
dant99
I've found that some OTC drugs effect my balance which results in more falls for me.
MikeG
yes, I've been able to before.
MikeG
I'm going to try something - BRB
loshimo11
Hey Terry... How's Susanne coming along her battle against the flu? Hope she's feeling better.
TerryW
Hmmm I have not even been into the settings in ages mike
MikeG
nope - still the same thing... it just doesn't recognize the clip buffer...
MikeG
it's got its own I guess...
TerryW
SInus infection Mike,  Doing a bit better,  SHe was in bed for almost 2 days straight sleeping
MikeG
cause I can copy and paste withing the chat window fine.
poohsdaddy
Everybody get their taxes done ?  I didn't know the deadline was extended 'til Monday this year.
MikeG
maybe she over-did it during the Energizer visit... :)
TerryW
Taxes,  Are taxes due?????
loshimo11
Got mine done about 10 days ago. Already got my state refund!!!!!
MikeG
:)
TerryW
Kidding LOL :D
MikeG
we extend every year.
Stan
Mine were all done a month ago.
poohsdaddy
I waited this year to e-file because I knew we would have to pay more again.....
MikeG
Paula said giving everyone till Monday was just prolonging her agony... :)
TerryW
lol Mike
MikeG
she's been working till 10pm most nights... one fool just brought her office stuff YESTERDAY and wanted it done by Monday!  They just extended him.
UTE
Pretty scarey...less of our taxes to Medicare...and less funding of NIH
MikeG
some of the partners of that CPA office will be sleeping in the office this weekend!
loshimo11
UTE.... What's up with that?!?!?!?!?!?!
poohsdaddy
Anybody know more about the "KD Cookbook".  Did they get enough recipes ? Or, do they want any more ?
MikeG
sure hope that don't screw with our SS!
MikeG
OR Medicare!
UTE
of course its all still being debated
MikeG
poohsdaddy - they need all you can give them.
Stan
I know they extended the deadline again for the cookbook submissions from 4-20 to 4-30.
poohsdaddy
Good... Was afraid i'd missed out on submitting any of mine.
TomK
A good Debate on Public DEbt....I can't spend What I don't have!!!
TerryW
[b]Here is a tip for everyone,  I am not sure if this is in all states or with all electric companies but in California if you use a Bi-Pap, C-Pap, Nebulizer, Electric wheelchair or and piece of medical equipment at home, the electric company may have a program that gives you a lower rate or Baseline, there is a form that your doctor needs to sign and you send it to your electric company.
poohsdaddy
Good question Terry....
MikeG
thanks, Terry.
loshimo11
Talking about spending.... How's everyone handling the outrageous price of gas lately????
TerryW
[b]Go to your electric company website and search for Medical equipment and rate program
Stan
I don't qualify cause I make too much money. MI throws income into the equation.
TomK
Wife will be sending in Her Favorite Receipe
poohsdaddy
Staying home most of the time....
TerryW
[b]Good thing Wheelchairs don't run oin gas
MikeG
lol
Stan
I don't drive enough for gas prices to make that much difference for me Luis.
loshimo11
lol
poohsdaddy
I haven't driven since breaking my leg.... in October 2009.
loshimo11
I went to fill up my Toyota Highlander yesterday and it set me back $58.00!!!!
TerryW
Does anyone here still go fishing?
Paul Sramek
Got to go, see you all next from Dallas.
TomK
GAS prices....Friends at work want to Power my Scooter with Propane.
loshimo11
And I wasn't even on empty!!!
MikeG
Terry, the chat room help describes the copy/paste procedure - same that I always use with Ctrl-C/Ctrl-V and it is not working... maybe they've screwed something up.
TerryW
Here in California if you are disabled you can get a free fishing license each year
Stan
Luis, just be glad you aren't filling up my son's F250 4X4 crew cab. I know I am
TerryW
maybe they did an update and it has a bug
TerryW
I loved to fish but I cannot tie a hook on anymore
TomK
Would Love to Fish; Boat Docks & Boats hard to get in & out of.
TerryW
I would have to have someone with me to do it
Stan
Bye Paul
MikeG
same here Terry - knots are a real challenge!
poohsdaddy
The only thing I know we got for free was or "Disabled" Parking Permit.... cuz we just renewed it this month.
loshimo11
Terry... I was aware of the free fishing licence here in CA, but I gave up fishing years ago because I just couldn't get to my favorite spots!!!
MikeG
can't even tie my shoes anymore.
MikeG
velco now
TerryW
Tom, some places have special places for wheelchairs to access to fish from.
TerryW
Tome the fish hatchery by me has a special area only for the diables that is loaded with fish but only the disabled can fish there.
TerryW
tom
poohsdaddy
Anyone got big plans for Easter ?
TerryW
Luis, sheck with nearby fish haceries
TerryW
check
TomK
Will check out some Local Lakes for ADA access...but still REALLY miss being out on a Boat Fishing.
TerryW
spelling Ahhhhhhhhhhhh
Stan
None here, Pooh.
MikeG
I's like to go fishing on a charter boat but wondered if I'd even be able to pull in a big oe...
MikeG
going to the beach for a few days
loshimo11
Just saw a video somewhere in the internet where there was a group of fellows fishing off a boat. They hooked up a large marlin and after fighting with it over an hour, then all of a sudden they were able to pull it in really easy..... They only got its head. It appears that the whole body was eaten by a shark!!!
MikeG
Treasure Island, FL
TerryW
I saw that Luis
poohsdaddy
Our son has plans to go to the in-laws.... which takes all day.  Her family always comes firsrt... which kinda irritates my wife and me.
MikeG
bummer
TomK
Got To Go... If ANYBODY HAS More Info on Home Plans etc...Please Send to:  This email address is being protected from spambots. You need JavaScript enabled to view it.
TerryW
take care tom
loshimo11
See ya TomK.
TerryW
These days it takes more gas to run the lawnmower than I pay the kid to mow it LOL
Stan
I get that feeling too Pooh. Rarely see my grand-daughter and my one daughter.
loshimo11
That's a good one Terry!!!
poohsdaddy
Our other sons and grandsons are all out of town.
Stan
I still mow my own with a rider. I'm waiting to see what it will cost me this year for gas. Haven't had to cut yet.
poohsdaddy
We're going to look for a rider, but they all seemed expensive last season.  Any suggestions ?
TerryW
Stan I am going to be riding mine today & mowing,  I have to wear a full paint respirator mask because of my allergies
MikeG
... anyway, before everyone goes... I was going to tell you that I got a message from Dr. Fischbeck this week.  The exercise trial is still on but the protocol review is taking much longer than they expected... they submitted it in December but the IRB has still not reviewed it.
TerryW
I have a Sears GT5000 but I would not buy one again
loshimo11
We'll be heading over to Reno tomorrow for a couple of days. For some unexplained reason
TerryW
Next time its a John Deere or a Huskavana
loshimo11
Sorry.... disregard my previous post.... accidentally hit enter.
Stan
Pooh, It depends on your lot size as far as how big you need. They all cost about the same for the size until you get into zero-turn machines. I have noticed that many are made by the same company, but put their name on it.
TerryW
Sears mowers have carbs that go bad if your gas is over a month old in it and it cost $350 for a new carb and I had to replace mine 2 times
poohsdaddy
I was able to mow our lawn in an hour when we first moved her, but have not done it myself for the past couple years.
MikeG
stick with a Briggs & Stratton.
TerryW
My riding mower has chains on the tires year round because we have hilly terrain
poohsdaddy
Most of our lawn is relatively flat, but the hill in the back is a real pain.
Stan
I have a Cub 1042. Like it, but I should have bought the 50". Terry, I have a full mask too, but not for allergies. Wife says I look like Darth
loshimo11
Well... the wife's up and cooking some good stuff... Gotta go soon.... Take care everyone and remember to stay healthy and upright!!!
TerryW
bye luis
MikeG
see ya Luis
Stan
Ok. take care Luis
MikeG
Terry, do you remember the Cloak/Decloak icon on the bottom right of the chat window being there before?
poohsdaddy
Happy Easter Everyone !!  Thanks for being here !!  Hope to see you again next time we "chat"  !!!!
MikeG
bye poohsdaddy
TerryW
yes mike
UTE
So log all and happy mowing... here its my wife who does the mowing... the teenage grandson not so much
TerryW
only moderators have it
Stan
Bye Pooh
MikeG
ok, I didn't notice it until Paula mentioned it...
TerryW
I have never used it
Gary_KC
I got go. Enjoy nice spring time. Bye.
MikeG
makes you invisable
Stan
The girls were discusssing the ghost during their chat last week
TerryW
I have got to go everybody, see you nxt time
MikeG
but you can still see everything...
Stan
Bye Gary
Stan
It's probably the CIA watching us during the chat, or Bruce
MikeG
Well I've got a list of honey-do items to do and it's not getting any cooler here... - until next time - be careful!
Stan
Ok Mike. I'm  home alone so I get to do what I want/ Now where is that ladder? :}
MikeG
:)
MikeG
no ladders!!!
MikeG
get the lights - I'm outta here.......