| 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 e-mail 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 e-mail 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 |
