Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

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Kennedy's Disease Chat Transcript   06-02-12

Topic:  Open Forum

Host:  Lou Tudor

 

loutudor
Good morning guys!
loutudor
Hi Stan...
Stan
Hi Lou
loutudor
Will you and Carla be doing the car show flea mkt this year?
Stan
The Spring "Dust Off" at the Gilmore Museum has already happened. Missed it due to other things. There will be other meets throughout the year.
loutudor
I saw an ad recently for the Gilmore Museaum...sounds fun!
Stan
It's a really nice place. They have just finished a major expansion and are starting another.
loutudor
Sorry to hear the Mich cherry crop was ruined this year...early warm weather and then a freeze...I love Traverse City cherries!
Stan
I'll have cherries. Only have one small tree that produces enough for a couple pies.
loutudor
Nice...we have oranges, lemons and limes planted...needs a couple more years b-4 they'll produce much fruit...
loutudor
I'll be headed up to the Detroit area in a couple weeks...celebrating my mother's 90th b'day
Stan
Sounds nice.
Stan
Hi rmof
loutudor
Good morning Genview, Il!
rmof
Good morning Stan, Lou and everyone
stephanierayner
Hi everyone, im new to all this. Im steph nice to meet you all
loutudor
Hi Stephan!
rmof
Welcome Stephan
stephanierayner
its stephanie :)
rmof
Where are you from Stephan
stephanierayner
from the uk
loutudor
Welcome!!  We don't have a set agenda today...just a chance to chat about most anything...
loutudor
Got it Stephanie!....sorry
Stan
Sorry, had to step away... Hi Stephanie.
rmof
I am in illinois, usa. Never been to the uk
loutudor
I live in Palm City, FL
rmof
Lou, you from Florida?
Stan
I'm in mid-Michigan
loutudor
Yes...born in Mich and also lived in SC, NC and CA
stephanierayner
sounds great, ive just come back from a trip in ca, was amazing
loutudor
I lived in the San Diego area
rmof
Quite a few places. I ask because I wonder where the best place to live is if you have KD
Stan
Inside
loutudor
FL is flat, so that's a plus most anywhere
loutudor
Are you thinking of relocating?
rmof
Yes,
stephanierayner
my father has KD which means i am a carrier, over here in the UK there arent alot of doctors that really know about this disease and i was wondering if any of you know doctors that specialise with this  area?
loutudor
Stephanie, any clinic that treats the Muscular Dystrophies will know KD (orshould)
loutudor
Good morning Mike!
Stan
Hi Mike
MikeG
hi Lou
rmof
Hi Mike
MikeG
sorry I'm late...
loutudor
No problem...
loutudor
Stephanie is joining us for the first time from the UK
stephanierayner
Hi Mike
MikeG
hi stephanierayner
loutudor
Stephanie, I am also a carrier...my father had KD and now my son
MikeG
hey, Stan, sorry about your crop.
stephanierayner
How old is your son now? and how is he coping?
Stan
Thanks Mike. It will be ok.
loutudor
My son is now 39 and is doing well...made a huge difference when he lost 40 pounds!
MikeG
yeah, the hot weather has been realld bad this year and it's not even summer yet!
rmof
Where do you live Mike?
MikeG
weight is really important!!!
stephanierayner
i think thats why my dad struggles alot
MikeG
I'm in Sun City Center
stephanierayner
hes doesnt excerise at all
MikeG
half way between Tampa and Sarasota
Stan
Weight is important, Wish I could gain some.
MikeG
:(
MikeG
wish I could give you mine!
rmof
I can image it is hot there
loutudor
My son bought a low to the ground hand cycle...he's using everything he has and really has a good mind set!
MikeG
I can't imagine what July and August will be like...
rmof
Stan, I have the same problem. I have started to loose weight. Have trouble keeping it up.
stephanierayner
thats really good, and when did his symptons start?
loutudor
Thank God for air-conditioning!
stephanierayner
i didnt realise the weight issue could go both ways
loutudor
My son actually started showing symptoms in his early twenties...diagnosed with KD at 32
MikeG
yes, Lou!  We're so glad we replaced those single pane windows too!
Stan
I've been underweight all my life. Iy has always been an issue; now more so that I am less active. Drs. diets are not working. It is also a greater challenge eating through a tube..
MikeG
that's fairly early... what is his CAG repeat count, Lou?
rmof
I feel with KD, I have to be extra healthy so I watch what I eat. I was just more comfortable and felt warmer at a heavier weight. I feel cold a lot even when it is 85 degrees out
MikeG
yes, Stan, it would certainly be hard to gain weight with the tube.
loutudor
CAG is 50 ...
stephanierayner
sorry whats CAG?
rmof
Stan, how long have you had the tube
MikeG
Stephanie, have you listened to any of Ed's KD lessons on the conference web page yet?
Stan
Rmof, Yes, I'm constantly cold unless I"m in direct sunlight.
loutudor
Stephanie, we're talking about DNA strands...
Stan
Rmof: I've had the tube for almost four years now.
MikeG
it's hard to explain since it's very involved with neurology.
stephanierayner
no not yet, i will check it out. Thank you.
loutudor
Stephanie, are you able to attend the KDA conference in New Orleans this year?
MikeG
one of our directors, Ed, gives a great explanation of neurology as it relates to KD every year at the conference - it's really the only way we've been able to learn about KD.
stephanierayner
when is this conference?
rmof
Thats a while. Changes your life. I get concerned because I get a lot of pain in my neck muscles. Feels like someone is choking me. I have been fortunate so far that it hasn't efeected my swallowing. Stan, How old are you
loutudor
Anyone who is not able to attend the conference will be able to see all reports on the KDA website
Stan
I'll be 60 in July
MikeG
here's a link to the web page:  http://www.kennedysdisease.org/share-information/kda-conference-events/485-2011-conference-videos
stephanierayner
thank you
MikeG
October 10 - 12.
loutudor
Stephanie, do you receive the emails that are sent out from the KDA?  Want to make sure we have your e-mailaddress...
MikeG
we'll be staying at Harrah's - it should be a great conference!
MikeG
you should try to attend.
stephanierayner
i believe so, my email addess is This email address is being protected from spambots. You need JavaScript enabled to view it.
loutudor
We also plan to form a KD carriers group, so we can exchange info and questions...
rmof
I am 50. With KD, Do you think it is better to live in a climate that is warm all year  The heat seams to bother me as much as the cold.
stephanierayner
i am going to try my best. I really do not know enough about KD and im now getting older and want to know for when i have children
stephanierayner
That would be great, would definitly like to be part of the carriers group
loutudor
I've made a note of your e-mail...will be in touch
MikeG
I used to live in Atlanta and even that was too cold for me... my fingers stop working below 50 and the heat seems to be tolerable to me.
MikeG
my sister and Lou will be leading a breakout session just for carriers this year - you shoul plan on attending if possible.
Stan
Rmof:. Lived in Michigan all my life so I can't say anywhere else is better. I too do not like tempuratures above 80, or high humidity. I've heard that Tennessee or Kentucky might be good as a middle climate area.
loutudor
I believe the heat is more tolerable and safer than ice and snow
MikeG
YES
Stan
In the winter, I stay inside as much as possible now.
rmof
Thanks all, I have problem with my fingers in the cold also. I guess I am looking also for a lower cost of living. Taxes around the Chicago area are high. Guess it is safer without snow and ice
MikeG
if you are planning on having children you may want to check out PGD...
rmof
Stan, where in Michigan are you
MikeG
it's the only known way to eliminate KD at conception.
Stan
Albion. It's between Marshall and Jackson
MikeG
very contriversal though...
stephanierayner
i can imagine
stephanierayner
have people done it?
loutudor
Yes...very successfully
MikeG
yes, and I say their child in Australia
MikeG
saws
MikeG
fingers arn't working today...
stephanierayner
from what i know i belive that it isnt legal in the uk yet
MikeG
the Australia couple came to the 2010 conference in San Diego and gave us a presentation about it - I had never heard of anything like thaqt before.
loutudor
Mike, do you know if that couple plan to attend this year?
MikeG
genetic engineering at its finest!
MikeG
yes, they do
MikeG
and I want to get one of our drs to go into the process for us more completely
loutudor
Good idea...lots of interest
MikeG
yep - when I first heard about it from Cliff, my jaw was on the floor!
MikeG
we're so luck to have won that auction to go to Australia...
MikeG
GREAT couple!
loutudor
I believe most KD families would at least want to have all the info available...
MikeG
if anyone is interested - just Google PGD.
MikeG
it's the first hit
loutudor
Do any of you other men here this morning have family members still needing carrier info?
rmof
i don't lou
Stan
No.
MikeG
Stan, thanks for your help on the newsletter!  I sure missed that left out word... maybe everyone else did too.  Lou, are you going to take over for the Fall newsletter?  I thin David will be up to speed by then.
loutudor
I've found that many relatives have a fear of the unknown and so avoid any testing or extensive info...
loutudor
Very possible Mike...  :)
MikeG
and for insurance reasons too.
MikeG
ok, tnx
loutudor
Yes, unfortunately the insurance is a fear
MikeG
too bad... it shouldn't
MikeG
I HATE our insurance!
Stan
No problem, Mike. I wish I could have done more, but software issue was a problem.
rmof
I have to go. Be well everyone. Have a good week
MikeG
take care rmof
loutudor
Take care!
Stan
Take care rmof
stephanierayner
really nice tlking to you and thank you for the help speak to you soon x
loutudor
I look forward to meeting you!
MikeG
I need to go too - lots to do today!  Take care everyone.
loutudor
Bye Mike
Stan
Goodbye Stephanie
stephanierayner
Bye everyone
MikeG

Stan
I'm off to do yard work.
loutudor
Anyone got questions about anything?
loutudor
Take care Stan...
Stan
Bye all.
loutudor
This was a good Sat start!  Glad to be here this morning!
loutudor
I'll log off now and look forward to more conversation...