Kennedy's Disease Association

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"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   06-18-2011

Topic:  Open Forum

Host: Bruce Gaughran

Bruce
Morning
UTE
Morning Bruce
Bruce
How are you this morning?
UTE
Your blogs on you and your Dad were great...I was having a bad day...and they made me feel alot better
Bruce
Thanks.  It meant a lot to write his story!
Bruce
Do you live in Minnesota?
UTE
Your story too was inspiring
Bruce
Thanks, sometimes I need to just get these thoughts down on paper.
UTE
I was born in Michigan but at the moment I'm UTE from Utah
Bruce
I thought so, but for some reason a couple of months ago I thought you said MN.  I was probably just tired.
Bruce
Are you still working at the Planatarium?
UTE
Bill I believe use to live in Minn in the summer but now Ohio...when he was in Arizona...he was the first KD person I ever met in person
Bruce
Reference my writing, I joined the Chattanooga Writers Guild last winter and it has been a great experience.  I really enjoy the meetings and people.
Bruce
Can I ask why you were down this week?
UTE
I think we must be about the same age and I could really related to your blog as my progression has been similar
Bruce
Morning Moseremous
moseremous
hello all
UTE
Moseremous hows the weather
moseremous
finally get to chat to you all
moseremous
been a while since i could stay up this late
Bruce
I am 64.  My neck has been giving me fits this last week or so.  By evening I am having cramps and it is difficult to hold up.  THis is a new experience for me.
Bruce
Where are you from moseremous?
UTE
bingo...Ill be 65 in amonth
moseremous
brisbane, australia
UTE
bingo...my neck too this week
Bruce
Okay, I am a little slow this morning.  I looked up and it said you were joining us from "down under."
moseremous
i think we chatted a few years ago bruce, nice to see you still around
Bruce
I thank the Lord every morning when I wake up.:)
moseremous
sorry 13.20 in the morning here
Bruce
Morning Stewart
UTE
Morning Stewart
Bruce
Way past my bed time.  Thanks for joining us so late.
stewart
good morning
moseremous
tequilla keeping me awake
Bruce
Muscel?
Bruce
Stewart and Moseremous, how old are you guys?
moseremous
i am 48
stewart
I'm 52
Bruce
Young men!  How nice.
moseremous
cramps like hell at night, take quinine, helps somewhat
Bruce
Did you see the Jimmy Johnson Helmet for Hope campaign announcement?  We are hoping to get one of those $10,000 grants.
stewart
I dodn't always feel young
moseremous
what can i do?
Bruce
Did you get the announcement through the KDA email?
moseremous
no, but i voted in the recent battery thingo
stewart
I got it, will start working on it this week
moseremous
hi stewart, where are you based?
Bruce
If not, go to our website after the chat is over and click on KDA News.
UTE
Isthat 3 20 oe 1 30 in the am?
stewart
Torrance CA
moseremous
sorry, 12.38 a.m.
UTE
Wow...I can only last till about 10 pm
Bruce
Reference the neck, I have never really had any issues with cramping and neck weakness until now.  My older brother has experienced this problem for several years.
moseremous
i have been trying to join a chat for 18 months, but flake around 11pm
Bruce
I give you a lot of credit mosermous, I could not make it if it was that late.  I need sleep.
Bruce
Do you have anything you would particularly like to chat about this morning, Moseremous
moseremous
i do get neck cramps often, seen to start in the neck and go all the way to the top of the head
moseremous
no guys, just happy to chat
Bruce
My exercise program continues to go well.  I have been averaging almost two hours every other day for the last four months.
moseremous
i always read the trabnscrips, it helps me alot
UTE
The neck problem just started for me around Xmas whem I pushed myself to hard at work...but now it"s come back...especially when I'm busy with my hand s and back
Bruce
I also exercise for 15-20 minutes on the other days.
stewart
My son is out of school for the summer and in a couple of hours we are heading off to florida's gulf coast. The warm weather should be nice.
Bruce
People always say, "it is hell to get old."  I say it is hell to get old and have KD.:)
Bruce
Where to in Florida?
stewart
Bruce I am very interested in your exercise program,
stewart
Cape coral
moseremous
ute, you have to pace yourself, my neck cramps whenever i have done too much during the day
Bruce
Good.  It works well for me.
moseremous
as does my chest
Bruce
We loved the Gulf Coast region and spent many a fine afternoon and evening walking the beaches.
Bruce
How old is your son?
Bruce
Morning Mike
MikeG
morning all!
UTE
My exercise program is just getting thru the day...pretty much always has been...and over the years whenever I see  PT I run the other way
Bruce
Stewart, why is a Souther Californina guy going to Florida?  It seems that you have all you need out there?
moseremous
only do what you can, if you are hurting at night you have done too much
stewart
unfortunatly keeping up with my now 13 year old son is a thing of the past, But I have got to do what I can to hang in there.
moseremous
the fact you can run the other way is actually quite good
Bruce
Stewart, yes, that is tough.  At that age they are ready to go-go-go!
MikeG
Bruce, I hope I filled out the JJ-helmet form correctly... I put Terry's contact info on it.  was that correct?
Bruce
But, enjoy every minute of it.  Soon they will be an adult and have their own life.
UTE
My nites are juggled between the bed and lazy boy...lazy boy make my legs and feet get stiff...bed makes my shoulders get soar
Bruce
Terry is the one I used.  Others have used my name.  It doesn't matter.  The important part what the why and what.
Bruce
Morning Michael17860
michael17860
hi all
UTE
actually it isnt running the other way its during the speed up on my power chair
Bruce
Are you getting the rain in PA?
michael17860
no rain in pa today.
Bruce
Before I forget, we do not have a schedule chat on July 2nd.  The mid July chat has a guest from NIH that will discuss the clinical study and exercise.
MikeG
UTE - I take melatonin & valerian root to help me sleep... sure works for me.
moseremous
go ute, i am sure you could give us all a run for our money
MikeG
if things get really bad I take Xanex... :(
Bruce
Then, we do not have a chat scheduled for August 6, but the mid-August chat will have Ed Meyertholen as the host and guest to discuss the Gordon Conference on CAG Repeat Triplet disorders.
moseremous
if things get realy bad i have a bottle of wine then three tequillas
MikeG
:)
Bruce
Moseremous, are you a liquor distributor?  You keep on getting in comments about tequillas.
MikeG
alcohol does the opposite for me.  I usually wake up about 2 or 3 and can't go back to sleep.
Bruce
Mike, how is the ear situation this morning?
moseremous
hey guys, i can't stay up this late often , if anyone wants to have a talk, at any time, about anything, please email me at This email address is being protected from spambots. You need JavaScript enabled to view it.
MikeG
still about 80%
moseremous
i hope thats not against the rules, giving out email addresses
MikeG
I expected to be about 95% after a week...
moseremous
wish i was
Bruce
Chris, thanks, the same goes for you.  If you ever want just to chat via email, don't hesitate.
moseremous
thanks bruce
moseremous
you have healped me alot in the past, apppreciate it
MikeG
Chris - what time is it over ther?  1am?
Bruce
We all have our strengths and abilities.  We also need someone else's support and insight occasionally.  We all stand together in this situation ... even though we have to lean on each other for support.lol
moseremous
its 12.57 a.m.
MikeG
yep - the jet lag is gonna get us when we go there in Dec...
Bruce
You've become quite the world traveler Mike ...
UTE
For years now I couldn't have kept going without the use of both legs and both arms...and with one of the either locked at the elbow or extended and locked in position
moseremous
anyone coming to australia, let me know, you have a place to stay in brisbane
MikeG
might as well do it while I still can...
MikeG
next time I'll take some echanesia & zicam though!
Bruce
Yup, Ute, learning to keep the knees locked is important for our survival.
MikeG
Paula & I are going to see Cliff & Liz and then Mike White.
MikeG
we'll have to see if we can hook up with you while we're there.  Melbourne, Perth, and Brisbane...
Bruce
Are any of you considering signing up for the NIH exercise study?
MikeG
I already did... but Angela hasn't called me back yet.
UTE
that's too much exercise for me
Bruce
It should be interesting.  I am really curious as to what the results will be.  Another KD that has been taking Avodart said there should be two increments to the study.  Pre and Post Avodart.
MikeG
good idea!
MikeG
it will be interesting to see if you're still feeling as well as you are now after a year or so.
moseremous
hey bruce, did you say you are coming to brisbane????
MikeG
I think the body somehow becomes immune to it after a length of time.
Bruce
We bought a weather radio after the tornado and it just went off again.  Severe thunderstorm with 2-3" hale is in the area until six tonight.
Bruce
No, Mike is.
moseremous
we would love to meet you and show you some suatralian hospitality
MikeG
Melbourne & Perth.
moseremous
oh okay
stewart
Well guys got to go, get ready for that flight. my contact info This email address is being protected from spambots. You need JavaScript enabled to view it. also on facebook now, Bruce I'd like to know more about your work out program it's something I need. Catch you guys later, I won't be able to make the next chat. Thanks
MikeG
maybe we can hve a little mini-conference somewhere.
Bruce
Stewart, contact me and let's discuss it further.  Have a great time with your son.
MikeG
take care Stewart!
UTE
What a crazy weather year...here in the desert it's near flooding from so much snow in the mountains and cool weather?
stewart
Thanks Bruce what's your contact info
MikeG
Chris, how many KD'ers are there in AU?
stewart
thankyou
stewart

Bruce
Ute, we have been dry and extremely hot.  It is a tough year and getting tougher.
moseremous
no idea, there is no organsation here
moseremous
i know of two in queensland
MikeG
send some of the water our way... FL is blazing!
Bruce
We went from winter to July-August weather in a month.
moseremous
but they don't comunicate
MikeG
same with TX
MikeG
Cliff & Mike came to the conference last Nov and we met them.
Bruce
Michael, you have been awfully quiet this morning.
MikeG
great folks!
UTE
Michael what part of PA are you in?
MikeG
Michael are you still taking creatine?  If so, how much do you take a day?
michael17860
I was wondering if the NIH would work through the local MDA Clinics and vidio conference like skyp to do the  excersise study. They would save on travel pay and other expenses that would save them money and also it  would let more people do the study. What  do you think of that idea.......
moseremous
brilliant, i could participate from down under
Bruce
Michael, they need to establish a baseline and endline, so they need people to be at NIH.  The rest of the study is done by conference call.
moseremous
damn
Bruce
The BOD discussed with NIH the possibility of having some studies coordinated through the MDA clinics, however, to minimize travel and expense.
MikeG
yep - that would be nice...
Bruce
I believe to be scientifically relevent, they have to have the same baseline.  Every clinic might be different.
MikeG
TRUE
Bruce
Did you read the MDA article (Quest) on stem cell research?  It was quite informative ... both the positive and negative.
michael17860
Could they have the MDA Dr. do the base line and endline studys. What would itt matter who does the pre wprk.??
UTE
Haven't gotten my Quest yet
michael17860
work
Bruce
Again, Michael, as I understand it, they need the same baseline for the study to be accepted.
Bruce
Ute, go to my blog and look for the article ... sometime this week I believe.
michael17860
Just a thought.
Bruce
Yup, it would be easier on us all.
Bruce
Traveling isn't much fun any more.
moseremous
atleast you guys are doing things, out here you tell a neurologist you have kennedys and they have no idea
Bruce
There is still a lot of people throughout the world that cannot get adequate help and support.  This week I heard from someone in China and India.
MikeG
well guys, I need to check out of here.  Chris, I'll be in touch with you and see what we can do to include Brisbane in our Dec trip.  Take care!
Bruce
Take care Mike
moseremous
i hope you can bruce
MikeG

michael17860
Its just the expense, I know they pay for alot of it, but it still adds up.
moseremous
hey mike, i could fly top melb to see you
Bruce
And, misdiagnosis is still the number one problem with almost every initial doctor's visit.  That is difficult on the family and the patient.
Bruce
Moseremous, Mike is gone, but if you send me any info I will forward it on to him.
moseremous
the website bruce is the number one reference foe doctors in autralia
UTE
My wife and I will probably be driving to Oregon and ArizONA this summer...should be a challenge for her and I and the manual wheelchair
Bruce
Good to hear.  We try.
Bruce
Ute, I hope the fires are out by then.
moseremous
not try.... you have given us hope and support
Bruce
Where are you going in Oregon?
Bruce
Good to hear that it is working.  The KDA has accomplished a lot in ten years.
Bruce
Moseremous, did you have any of the ash from Chili's volcano?
moseremous
beddie byes for me, take care all, and keep upright
moseremous

UTE
We lived for 25 yrs in the Portland area and she's from the coast: Coos Bay...she went to school with the WeyerhaUSER Boy in elementary
Bruce
I really enjoy the Oregon coast.  It is beautiful.
michael17860
Got to go, take  care and God Bless.
michael17860

Bruce
We use to stay at Cannon Beach during the winter time.  The beaches and park's trails are great.
Bruce
Well, I need to get cracking.  We have some things to do before a picnic today.  Take care and stay in touch.
UTE
They have the mts here but not with the beautful green trees like in Oregon