Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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Kennedy's Disease Chat Transcript  02-07-2009

Topic:  Open Forum

Host: Terry Waite


BEGIN CHAT

TerryW: I I am away from the keyboard but will be back soon
TerryW: I am back
TerryW: Hello
TerryW: I thought i was going to be allalone here
poohsdaddy: Good Morning. It looks like we are a little early.
TerryW: hello dART
TerryW: usually there are about 5 of us here as 15 past the hour
Dart!: Good morning Terry
poohsdaddy: Terry Thanks for the chat reminders.
TerryW: you are welcome
TerryW: how is everybody?
poohsdaddy: How do I change my name on the chat to show that my name is Jeff?:
TerryW: Jeff you would need to re-register
Dart!: We are just tickedy boo, thanks., and greetings to All!
TerryW: Jeff you mean you don't like being called Pooh? LOL
poohsdaddy: That's what I thought....so, I'll leave it alone.
michael17860: hi all
TerryW: hello all
gary_kc: Good morning. This is Gary Uchiyama. It is a nice warm sunny day in mid-west this week.
poohsdaddy: It doesn't really matter...I've been called many other things.
TerryW: Rain in California thank god
Dart!: The news has that area very smokey, no?
poohsdaddy: Sunshine and mid-40's here today. Feeling okay, except for sore ankle and hip from a fall last week. Nothing broken!
TerryW: nope, clear
TerryW: i mean clouds & rain
Dart!: Twelve degrees of freezing here in British Columbia!
TerryW: anybody get that ice sorm they had?
TerryW: storm
billeric: You all need to come to Phoenix. Warm and sunny again today
poohsdaddy: My nephews in KY and TN were without power for several days.
TerryW: I have not been feeling well lately, I have no energy to do most anything, I don't know if I am in a progression stage or if it is something else. I feel like loss of breath.
TerryW: I am very frustrated
billeric: Not good news for us terry. When you hurt-we hurt.
Dart!: That is not good to hear, Terry! May all go well with you!!
poohsdaddy: Been there--but just keep on going as best we can....Ditto to billeric ans Dart!!!!!!!!!!!!!!!!!
TerryW: I am hoping that it is just a temporary thing
TerryW: I have not felt thiis way before now
TerryW: hello
loshimo11: Good morning everyone. This is Luis Shimomura joining in from San Francisco.
Dart!: It is great, Terry, that you don't have to face ill health alone!
TerryW: It seems like the day goes by and I have not gotten a thing done and it makes me mad at myself
poohsdaddy: I would like to share some of that warmth from Phoenix..
Dart!: Don't beat yourself up over not getting much done - that happens around here most of the time!
MikeG: 62 in FL now
loshimo11: billeric...My daughter travelled down to Phoenix yesterday to watch the Suns beat up our Warriors last night.
MikeG: but it's been cold... for Florida
billeric: I had an MDA appointment yesterday. I haven't been impressed in the past with visits but I really got attention yesterday. New intern so I was able to pass on lots of good KDA stuff
TerryW: newbees are great, eager to learn
poohsdaddy: Have we figured out whether climate and weather really affect KD or Not?
MikeG: yep - everything takes twice as long as it used to.
TerryW: I know for a fact that the cold affects me
loshimo11: Except for the last few days, it's been unusually dry and warm here in San Francisco. I think we've only had about 50% of normal rainfall.
Dart!: For sure, about the cold!
poohsdaddy: I have had days when I thought it was just me. Thanks for the re-enfocement.
TerryW: It has been very stressful around here lately and I think stess has a major role in the way our bodies feel
poohsdaddy: Ditto!!!
Dart!: So what do you do about stress?
billeric: I can sure notice when I am stressed out about something-being late is a good example.
TerryW: we tense up all our muscles when we are stressed and that wears us down without our knowing
billeric: Think your right Terry. Sets us up for falls.
MikeG: has anyone been doing the exercises in Bruce's Exercice Guide Part II?
TerryW: Dart, I don't know,
michael17860: I Pray alot and that help my stress....
MikeG: I think exercise is a good remedy for stress.
TerryW: I have not had the energymike
poohsdaddy: Lorazepam or Alprozalam work, but make me even mre tired. So, I only take the pills when the panis attacks set in.
Dart!: Exercises should help us to not tense up, no?
poohsdaddy: Panic.
TerryW: Next week Susanne will be in the field for work and I will be here alone
MikeG: I had to put it into my schedule to get it done... just saying I was going to do them didn't work for me.
poohsdaddy: Do you have someone to look in on you?? Relatives or Good Neighbors??
TerryW: Well nobody really calls or checks daily so I carry my phone with me out on the property most of the time
MikeG: Terry, you need some hired help there.
TerryW: Susanne alsways calls at least 2 times a day when she is gone
loshimo11: In addition to KD, I've noticed I'm also developing these symptoms that are even worse. I think my wife did some research and has found out it is called laziness.
MikeG: that place is just too much for you!
TerryW: Mike I have a kid across the way that helps me when he is home if I need it
Dart!: I find that to be so, that exercises must be scheduled in, oor they don't get done.
TerryW: He now cleans out the horse stalls for us
MikeG: that's good - you need someone you can depend on.
poohsdaddy: The winter doldrums have set in for many around here too...the iron in the blood has to lead in their a**es.
TerryW: He helps me with the 50lb feed bags also
MikeG: I hope so - I couldn't even lift 25 if my life depended on it.
TerryW: I dont lift them either,
Dart!: That is a great idea - having someone to work close to horses for you, Terry. We would be in bad shape if we took a tumble under them.
TerryW: II fall under my horses often
MikeG: the last page of Bruce's guide has a schedule sheet - there are way too many exercises to do in one day so you can schedule them for the entire week. Real nice setup!
TerryW: I have been lucky so far
billeric: Any results from the survey for the conferance next year Terry?
Dart!: Do they spook if you are on 'the deck'
TerryW: bill, I do not have the final tally but there was some good interest
poohsdaddy: Our son and daughter-in-law have been living with us since before their wedding. Now, they're expecting a son in June; and planning to get a place of their own.
TerryW: Dart, yes the new colt freaks out a bit when I fall but the other 2 are mostly calm
billeric: Thanks Terry.
Dart!: Will you again give directions to thew 'exercise room?
TerryW: dart?
TerryW: the link?
TerryW: It is on the site under General Tips
Dart!: Thanks, I'll give it a 'go'.
poohsdaddy: He got laid off last week; and it looks like the company will be folding. He has been able to pick up a few extra hours at his part-time job.
TerryW: This is the page that has the link to the Exercises http://www.kennedysdisease.org/disc_tips.html
poohsdaddy: Thanks for the link. I'll have to look into it also.
MikeG: Gotta run - just got an overnight delivery that I need to handle. Take care everyone!
TerryW: I think I should list that linkon the main page in the news column
TerryW: everyones gone quiet
TerryW: did i lose connection
TerryW: can ylou see this
loshimo11: I can see your message Terry.
TerryW: oh, ok
billeric: Were still here Terry.
joeK: yes
loshimo11: We're thinking quietly.
poohsdaddy: Do you think the overnight delivery was medication? Like Viagra? --
billeric: He wishes!
loshimo11: LOL
TerryW: LOL, he sure left fast to get it
joeK: Ha Ha
Dart!: Re:the link, is there something fits between 'disc' and 'tips'?
TerryW: http://www.kennedysdisease.org/disc_tips.html
TerryW: nope that should take you right there
poohsdaddy: It's good to see that we still have our sense of humor...even if our strength may be limited.
Dart!: Thanks lots!
TerryW: off the main page on the left side it is under the main heading of Discussion/Support
TerryW: General Tips
joeK: try on the link _ after the disc
TerryW: There is a underline between Disc & tips
TerryW: DISC_TIPS
loshimo11: Had a MD clinic appointment a few weeks ago and I mentioned to the doctor about the ongoing findings on KD and how expensive these trials can be. He mentioned that his ALS group had just received a ig grant and asked if we had attempted to tap MDA for funds.
poohsdaddy: Was anyone from the NIH study hesitant to answer the questions about strength, endurance, etc.?? I've heard that the dutasteride has decreased men's desires and performance. Any truth to it?
Dart!: Ok - ok, guys - I'm sure it will work!
joeK: a better is to highlight the link it the control button and the c key at the same
TerryW: there was an exercise study that was done by a lab on SBMA patients that I will be putting onthe web site in the next few days
TerryW: I will post it and put the link on the main page under news
TerryW: check the site in a few days
poohsdaddy: I had really bad headaches while on the trial. Not all the time, but once every other week or so.
joeK: time. Then go to blank web bar search page and hit thecontrol button and the letter v at the same time
Dart!: It is good to make the instructions simple - for some of us 'less with it folks'.
TerryW: CRTL+V
poohsdaddy: I had an e-mail from Angela this week... She said the users should be unblinded soon.
TerryW: ok eveybody, I have to go but you can stay and chat iif you all want until you are through
billeric: Thanks terry. Take care of yourself.
gary_kc: Bye Terry.
poohsdaddy: Do we have profiles on the KDA chatters? I get a bit confused with all the participants.
Dart!: Have a good day, Terry and All!
loshimo11: Take care Terry
poohsdaddy: Thanks all -- I also have to get going. Stay upright and healthy til next time.
gary_kc: Bye poohsdaddy.
gary_kc: I got go too. Talk to all at the next chat.
loshimo11: Well... I guess I'll be joining the group out the exit door. Stay healthy and vertical everyone.