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  04-18-2009

Topic:  Open Forum

Host: Terry Waite


BEGIN CHAT

 

Terryw: [b]I will be right back
Terryw: I am back
Terryw: how are you?
Terryw: Hello Stan
Stan: Good morning
Dart!: Good morning Terry and All. Some time ago you spoke of a Kennedy's brother as losing his power to speak, but did not allaborate. I wonder how that is, mand how he treated the problem.
Terryw: Hello Poohsdaddy
Dart!: Does this mean that you get 'overtime', as it is not yet open time?
Terryw: I can't remember that, maybe one of the others will remember, ask again later in chat
poohsdaddy: Good Morning All -- Sunshine and 40's here today.
Terryw: Pooh, where are you again
Terryw: Its going to be in the 70's today and 80's tomorrow here
Dart!: '40's' - how disgustingly hot, no?
poohsdaddy: Has anyone heard from Kelly about his brother who died a while ago??
Stan: Good morning. Sunny and 60 already here in Michigan. High in the 70's
poohsdaddy: I'm in WI, about 20 miles north of Milwaukee.
Terryw: IPooj I never heard the final cause but Kelly was in chat about a month ago
Terryw: Greetings
loshimo11: Good morning everyone. This is Luis Shimomura joining in from San Francisco.
Terryw: San Fran The windy city this week
loshimo11: It was so windy, I almost got blown away while hanging on to a shopping cart!!!
Dart!: Windy or no, I hope y'all are having a great day!
Terryw: 45 mph sustained with gusts up to 70
Terryw: right
poohsdaddy: I've also had that happen, but closing car doors with the wind hurts when you're half-way in or out.
loshimo11: There was an 18 wheeler that got turned over in one of the bridges and one 70 boat that got slammed against one of the its piers.
Terryw: I have been having many dry drowing episodes each night right as I fall asleep each night for the past 6 weeks. I am not sure why
Terryw: I am very frustrated
Terryw: has become very difficult to swallow any type of food lately
Terryw: just got bad all at ounce
Terryw: once
Dart!: Terry, would it not help you to sleep on your side?
Terryw: I wonder if it could be in relation to taking my allergy meds
loshimo11: I've been having a dry mouth almost every night. It's a weird sensation and I've been having to drink liquids before trying to swallow.
gary_kc: Good morning. This is Gary joining from Kansas City. It is cloudy this morning.
loshimo11: Good morning Gary.
Terryw: Dart, it does help a bit more if I try to get to sleep on my side
Stan: Same problem here, Terry. I attribute the dry drowning to either weather changes or how much I exert myself during the day. There is a lot of food I can't eat anymore.
Terryw: Hi gary
gary_kc: Good morning loshimon11.
Terryw: I have heard that Acid reflux can cause it
shamar1228: morin all
Terryw: hi shamar
loshimo11: Is there anything that can reduce this dry mouth syndrome?
Terryw: Los, do you take allergy meds or blood presure meds
Terryw: I take both
Terryw: they say that that can cause it
loshimo11: No... no medications here.
Terryw: hmmm
Terryw: hello RH
Terryw: Not sure Los
poohsdaddy: I try drinking water before going to bed, but wake up during the night to relieve thw water pressure.
loshimo11: My wife says it's because I fall asleep with my mouth open and then I begin to snore.
Stan: My dentist prescribed a liquid for me for the dry mouth.
Terryw: Los, is the dry mouth only at night while sleeping
loshimo11: Wow. Just saw on TV that the 1906 San Francisco earthquake happened 103 years ago today!!!
loshimo11: Terryw... Yeah.
poohsdaddy: Didn't think any of us were that old...just feel like it some days!!!!
Terryw: Los, Mine gets very dry at night after I fall asleep. Its like it stops producing saliva
Terryw: I think that happens to most people
loshimo11: Terryw... That's an exact description of what I've been experiencing!!!
Terryw: Susanne says that happens to her also and she does not have KD
poohsdaddy: I purposely do not take any allergy meds after suppertime; and that seems to have helped.
Dart!: If I had the problem of not being able to staay on my back, I would try propping with pillows.
Terryw: hi Bill
billeric: Good morning guys
Terryw: I have to take my allergy meds at night or the roof of my mouth itches like crazy and I can't sleep
shamar1228: i don't have that problem just can't get food down
Terryw: SHamar, any thype food?
Ron: God morning to all. Hope everyone is doing well and is healthy.
Terryw: hi Ron
loshimo11: Good morning Ron,
RH2706: Good Morning folks
shamar1228: any but meat is the hardest
poohsdaddy: Anyone else fall lately? I fell at the end of our driveway on Monday before Easter; and had to go to the doctor's office. Nothing broken, just torn ligaments and tendon in left ankle/foot.
Terryw: Hi RH
loshimo11: poohdday...Ouch!! That sounds painful!!!
Terryw: OUCH
shamar1228: hav'nnt fell but legs weak and unsure
poohsdaddy: Hate to admit that it may be time for a walker instead of the single-point cane.
Terryw: I have fallen but nothing broken, my last fall was yesterday
Dart!: Sorry, that pillow thing might seem silly, but sometimes 'silly' works, and it just might help the mouth to stay moist, as the mouth would noit drain so much as if you were on your back. Anyway, whatever works, works!
Terryw: Hi Murf
murf: morning
loshimo11: Hello murf.
Terryw: Murf knows all about broken feet
murf: online with a new computer
Terryw: cool Murf
murf: yep I do
murf: who broke a foot?
Terryw: Pooh fell and damged their foot
Terryw: not proke but tendons & such
Terryw: broke
murf: I know what thats like
CT_jameson: good morning all...
Terryw: Hi CT
shamar1228: moring
murf: I use a chair in the house now
billeric: Anything to eleimate those falls. They are the worse
loshimo11: I had an incident a few weeks ago. The wife and I went to Reno to do a little bit of gambling. After she took the electric chair out of the SUV, I leaned over it, not knowing that the fricking thing was on, placed my hand with all my weight on the side where the forward stick was on, and got dragged about 3 feet down the parking lot. It was a scene right out of a Hollywood comedy movie. Luckly, only ended up with a few scrapes.
CT_jameson: lol
Dart!: I am told that heavy doses of calcium strengthens bones big time.
murf: LOL I've been there too lol
CT_jameson: i had my 80 lb black lab drag me across the ground several feet when he saw a cute little poodle.
shamar1228: my hands tremor so bad more then the have gets so sickin
billeric: I take calcium hoping that it will help prevent a broken bone
murf: only your pride gets hirt
CT_jameson: yep
poohsdaddy: Our dog is 45-50 lbs., but can knock me down without even trying.
Terryw: I am supposed to have a bone density check
Terryw: my doc schedlued me for an appt
murf: me too
shamar1228: is that one of problems?
Terryw: my dog just got weighed in at 116 a couple of days ago
Terryw: his siter is only 90
CT_jameson: Terry... wow
Terryw: sister
CT_jameson: big pup
CT_jameson: what kind of dog?
Terryw: fingers are not wroking welltoday, lots of typos
poohsdaddy: Did the bone density last year, only a bit less than they expected due to the meds.
shamar1228: know how that is terry
Dart!: 116 pounds is nearly big enough to ride!
Terryw: Half Lap and the other half is Great Mastif I think
Terryw: lab
RH2706: Terry do you take a bone density test on a regular basis?
loshimo11: Terryw... you could build a small cart attach it to them and then you can travel all over.
Terryw: they are a handful when I have to take them to the vet when Susanne is not with me
Bruce: Morning Everyone
poohsdaddy: Australian Shepherd Mix for Humane Society...almost 5 yrs. old now.
Terryw: I have the Vet come out to my truck and bring them in for me
loshimo11: Good morning Bruce.
Terryw: hi bruce
murf: morning
shamar1228: got to run got to take my daughter to funrel her freind killd himself so take care guys
Terryw: sorry
poohsdaddy: Ditto
loshimo11: Take care shamar1228.
RH2706: ditto
Ron: Stay healthy.
shamar1228: thanks guys
murf: shamar1228 sorry
billeric: Anybody read any good research news lately?
loshimo11: So... has anyone heard anything new on the ongoing findings against KD?
Bruce: Dr. Chang is talking with NIH about a clinical trial for KD.
poohsdaddy: Are there any easy ways to keep upbeat, and avoid the frustration and getting discouraged or depressed?
murf: we're going to be under some very bad weather for the next few hours if I loose connection
gary_kc: Honda may sell walking assistance devices near future in US. see the following link:
gary_kc: http://corporate.honda.com/innovation/walk-assist/?ef_id=1097:3:s_e495ae8c5996cba5dc2f625e7d662e22_3922926256:qLgl0Uo-KR4AAG57RJsAAAAG:20090415213039
Bruce: No, there are no magic formulas. I just try to take one day at a time.
Terryw: pooh, that is a tough one. Try to set one attainable task a day as a goal
CT_jameson: that is good advice
CT_jameson: i've been doing yard work, and I do one task a day
Terryw: I try that to keep from feeling worthless
Terryw: if I do more than that its all gravy
poohsdaddy: I already do that too... but the sore foot seems to have slowed me down lately.
loshimo11: gary_kc... I also read that they're planning on having the HAL unit ready for mass production later this year at a reduced cost of $4.200.00!!! I WANT ONE!!!!
CT_jameson: the yard is really starting to shape up... and I did it :-)
Bruce: We received an email from an associate recently with a link to the HAL device. The price has dropped to around $4,200. The plan on manufacturing a limited number of units each each.
Terryw: Pooh, any injury will
Stan: Like Bruce stated, there are no magic formulas for depression, etc. Everyone is different. I focus on what I can do, not on what I cannot. I does help to have someone to talk to about it.
murf: pooh you need to keep in touch. are u on FaceBook?
Terryw: I want a HAL also Los
gary_kc: I hope health insurance will help for the HAL device......
murf: Under tornado watch again
poohsdaddy: No, but it helps to know all of you are there for the chats!!!!!
RH2706: Guys, I have to go. This is neat. I will be back the next chat.
Terryw: take care RH
CT_jameson: what is a HAL?
Bruce: Pooh, I have often commented that the emotional impact of KD on an individual is something no one ever talks about or studies, yet I believe it has more impact on a person than the physical impact.
loshimo11: Take care RH
Ron: What does a HAL do for you?
murf: Pooh I'm on Facebook all the time so if you ever need to talk u can call
Terryw: Murf do youstill have the link to HAL
CT_jameson: cool, i found it.... http://blog.wired.com/cars/2008/11/honda-announces.html
loshimo11: CT.. It's a robotic device that you wear. Kinda cybor looking, but it can triple your strength.
CT_jameson: very neat!
Terryw: IRONMAN
murf: HAL the suit
murf: let me lookl
Bruce: You would look funny walking into a restaurant or Walmart with the unit, but it appears you would be walking instead of riding or using a cane/walker.
loshimo11: Terryw... You hit it on the nose. It's basically a not-so-high-tech device similar to Ironman's.
Terryw: if you click on a link while in chat it will kick you out of chat
murf: http://www.engadget.com/2006/10/29/hal-5-robotic-suit-ready-for-mass-production/
Terryw: copy the link and then go to it later
loshimo11: The only drawback on HAL at the moment is that it only works for a little over 2 hours.
murf: at least its a start
Terryw: the only drawback I can see is that it does not compensate for balance issues I don't think
Bruce: I thought about what would happen if you were somewhere using HAL and the battery ran out. Wouldn't that be interesting.
murf: and will probably ghet better like computers
Terryw: if you fall over in it what would happen
CT_jameson: it has an automatic comfort feature
CT_jameson: if you fall
Stan: I don't know about anything named HAL. I just remember a movie. I have visions of my neighbor kid making me do things with his RC Car controller. :}
murf: can u drive in it?
Bruce: I read in an earlier article that you have to be specially fitted for HAL. Each one is unique to the individual. You have to go to Japan to be fitted and then have a training program to learn how to use it.
murf: my computer ... HAL 9000
Dart!: There is nothing as good as original equipment, the kind that we came into the world with!
Terryw: I have to go and get some stuff done before our KDA board meeting, see you all again soon
murf: cya Terry
loshimo11: Take care Terryw...
Ron: Stan--LOL--That image is really funny. The neighbor kid driving your HAL suit wherever he wants. LOL...
poohsdaddy: Anyone hear from NIH (Angela, etc.) lately regarding study??
Ron: Stay healthy Terry.
Bruce: Pooh, I haven't heard anything.
murf: only on I was not on the drug and we can have our dr. prescribe us Avidart if we want
CT_jameson: Bruce, i keep thinking about your cane as I work in the yard
poohsdaddy: That's the same as I heard.
Bruce: CT, I am not certain what you mean.
CT_jameson: am i confusing your with someone else?
CT_jameson: didn't you design a case?
CT_jameson: cane?
Ron: John Coakley designed the cane.
murf: John's cane?
Bruce: Are you talking about John's cane ... the Coakley cane?
CT_jameson: oh, right.... John
CT_jameson: sorry, i met so many people at the KDA conference
CT_jameson: i forgot who was who
Bruce: No problem
Bruce: We all do that
CT_jameson: does KDA effect the memory?
CT_jameson: lol
Bruce: That is why pictures are helpful. It is easier to remember people if I see a picture of them.
CT_jameson: ;-)
murf: CT the association has nothing to do with ur memory lol
Ron: I've been having trouble with swelling and pain in my left middle finger and little finger. Anyone else having this kind of trouble?
Bruce: No Ron
murf: yes
murf: but its the nerves
Bruce: Could it be arthritus?
Ron: Probably.
loshimo11: Has anyone had any experiences with the Pilot Step Up cane? It's a cane with a built-in mini step to assist the user go up the stairs.
Ron: Hey whatelse? Pile it on. LOL
Bruce: My knees have been damaged so many times with falls that I have arthritus in both of them. Wet, cold weather is a bear!
poohsdaddy: My memory isn't what it used to be either. My wife thinks that I may have caught her chemo-brain.
billeric: Haven't seen one loshimo
Bruce: Los, I haven't heard of it.
Stan: Nope. I have a cane that converts to a mini seat to sit on when needed.
murf: lol Pooh lol
murf: Hey pooh you can call me any time u feel down .... please
loshimo11: Here's the link: http://www.stepupcane.com/
poohsdaddy: I'll have to call you sometime with the rest of that story... It's really funny.
murf: ok
murf: i love humor
Bruce: The KDA has 934 associates registered as of this morning. 2/3rds have the defective gene. The number of people joining the KDA over the last few weeks is amazing. We are getting 1-2 a day it seems like.
murf: Sunday is Ron White's special on Comedy Central
poohsdaddy: I get many e-mails that are funny, but not all are worth forwarding.
Bruce: Los, interesting. I wonder if the step pad would get in the way when just walking?
CT_jameson: land mark step for me yesterday... i got myself a handicap parking pass.
Ron: Too bad we can't come up with someone famous to champion the KDA.
Bruce: CT, it is a big step forward, but it is nice to have.
Stan: Send the emails to my brother-in-law. He'll forward anything, to anybody, any time, whether it is funny or not, without regard to file size.
loshimo11: Bruce... I think it has this thinggie that you step on and the built in steps pops out.
poohsdaddy: He's good; I've got the Blue Collar Comedy Tour on tape...and others.
CT_jameson: I am beginning to accept the fact that I have a muscle problem :-)
billeric: They are a lifesaver ct
murf: ct good thats the first step
Bruce: Well guys, I need to run (or walk real slow anyway). I have a couple of things to do before the board meeting. Take care ... stay healthy, happy and upright.
billeric: Thanks Bruce
Ron: So long Bruce.
CT_jameson: l8r
loshimo11: Bruce: I may have misread your question... If you're talking about the base, that may be true. One of the reasons I was originally asking if anyone had used it before.
murf: we're just a bunch of cripples that talk through out noses
loshimo11: Take care Bruce.
CT_jameson: lol
murf: how u doing Ron?
Stan: You said it, Murf. Since my voice no longer projects like it once did, nobody pays any attention to what I say.
murf: lol me to man ... me too lol
Ron: OK Murf. Glacd for te warmer weather.
murf: well we are in for a huge storm
poohsdaddy: I had asked if it would be okay for me to bring a taller chair or stool to church. They're afraid of my using a Bar stool...for when I have to cantor or lead the singing. Open Doors with closed minds...
murf: over hjead
murf: head in a few minutes
Ron: We didn't have the snow this year but, it sure was cold and stayed that way a long time.
murf: good Pooh
Stan: Ask for an accommodation under the ADA for the chair. They have to honor a reasonable accommodation.
murf: I would think so
poohsdaddy: I've also noticed a lack of parking spaces (for disabled) in many places lately.
murf: other wise u may want to look for another church
Ron: Seems like more handicap people using whatever spaces that are available.
loshimo11: It irks me to see Hummers and very tall vehicles parked in handicapped zones.
murf: some times I leave them a note
Stan: Yes, but It might be me in my son's truck parked there.
poohsdaddy: There are others within 5-10 miles that have better access.
billeric: Got to go fellows. Stay upright and not uptight!
murf: they may have a bigger heart too
Stan: Bye, take care
Ron: Right--Bill.
murf: thanks Bill.333
murf: Bill
poohsdaddy: I tell people at the service desks when I have trouble finding a good parking space.
loshimo11: C'ya Billeric
murf: do they help?
poohsdaddy: Thanks to ALL...Time to get going....til next time Jeff
Ron: I must go also. Stay healthy till next we chat. Bye.
murf: cya guys
CT_jameson: see ya!
murf: stay on yer feet
loshimo11: I'll join the group exiting. Take care guys... stay healthy and vertical.
Dart!: Take care, All!
murf: thanks and stay happy
gary_kc: Take care all, too. see you at next chat. Bye
murf: got to go
murf: hey dart u ok?