Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript  06-20-2009

Topic: Open Forum

Host: Murray Williams


trailblazer: Hello are we chatting today?
murf: hey Poo
murf: How are u?
poohsdaddy: Good Morning Murf.... The other guys must still be asleep.
murf: I think so
murf: Hey Bill
billeric: Good morning Murray from delicious Duluth, Mn.
murf: 80 deg and sunny in Houston
poohsdaddy: After several days with rain, the sun is finally shining. It's about 70 today.... and the forecast for the weekend looks good too !!
billeric: About 60 here near Lake Superior
murf: un real!! a weekend with no rain!!
murf: lol
murf: Hey Mike
billeric: D
MikeG: morning everyone!
murf: Hey Loshimo
MikeG: hey Murf
loshimo11: Good morning everyone. This is Luis Shimomura joining in from a sunny San Francisco.
billeric: id everybody make it the last two weeks with no falls?
MikeG: sunny but coool?
poohsdaddy: The local weaherboy said he would do his best for Father's Day. He only tells us about it; and doesn't have control over it.
murf: sunny all over thats great
billeric: did
murf: Hey UTE how are u?
billeric: Good morning Eric
MikeG: I'm afraid to say I haven't fallen in months... probably bust my butt today. :)
UTE: Hanging in says the whole of me is more than the parts
murf: lol
murf: I like that
poohsdaddy: Yes--No actual falls these weeks...
billeric: Hey, we are doing good.
murf: one fall for me and in the office
UTE: long are you going to be in the Midwest?
murf: Hey Gary
murf: Hey Don
MikeG: morning Don
gary_kc: Good morning! This is Gary joined from Kansas City.
fl-don: morning all
gary_kc: Hi Murf.
billeric: This is a 10 week program with students apartments at the U of Mn. Duluth
murf: hey Gary
UTE: Bill...whats your major?
billeric: Coeds-but they look like mere children
murf: good major
fl-don: anything new on the research front???
murf: we are looking at doing another trial but not confirmed on the drug
poohsdaddy: That's why I referred to him as the weatherboy... so much younger than the average.
murf: NIH is trying to push through before we all get to old
murf: lol
loshimo11: murf... what drug are we talking about?
MikeG: too late for that! :)
fl-don: getting old!!! been there done thAT!!!!!!!!!!!!!!!!!!!!!!!
murf: they have not confirmed yet
loshimo11: OIC.
murf: could be J9 but there are others they are looking at too
poohsdaddy: Which ones are in the talking? What are the hypotheses?
loshimo11: That's great news.
poohsdaddy: What is J9 supposed to do ? or how should it affect KD ?
gary_kc: Does anyone know that NIH is making a report for dutasteride trail or not? I would like to know the details.
MikeG: J9 looks like the best chance of treating KD but the FDA has sooo many requirements before it can be administered...
murf: Dr. Fischbeck be on the chat and explain the last trial results and be open for querstions
poohsdaddy: When?
gary_kc: murf, thank you.
murf: not confirmed the paper needs to be written first
murf: Hopefuilly before Aug
murf: You all know July 4th we will not have a chat
murf: Bruced is on with Andy Lieberman AUg 1st
poohsdaddy: I received a newsletter from the Medical College of WI lasty week. Alison LaPean is there since she left NIH;and they are also talking about research for neurological patients.
gary_kc: My friends who live in Japan import the dutasetride from Canada. They are also very intereting in the detail of the result.
murf: and I'm on with Dianne Merry Sepot 19th
murf: Hey Ron
murf: how r u?
Ron: Hi guys. How is everyone doing?
murf: good good
MikeG: hey, Ron, how's the juicer working for you?
UTE: Not bad, just a few dry drownings...must be going from hot to warm to AC...
murf: any one have something they need to tal;k about?
Michael17860: Hi All
murf: Hey Mike
MikeG: UTE - how many episodes of the dry drownings do you have per month?
MikeG: hey Murf
murf: ya
Ron: Mike the juicer seems to really be working. It is very good.
UTE: I can go for months without them...but probably three in the last few weeks
MikeG: I've lost about 10#s juicing - and have more energy that I've had in years! Just no more strength... :(
murf: huh? really?
Michael17860: Is there any news about asc-j9?
murf: where can I get one?
MikeG: do you take neurontin or gabapentin UTE?
poohsdaddy: Do any of you have a persistent cough... or wake up with excess mucus? My regular doctor only prescribes more nasal spray and anti-histamines.
murf: yes thought I was the only one
MikeG: I got mine on ebay for about $125
murf: deep in my lungs
Ron: What do they mean when they say the chat is floating?
Stan: I have the mucus problem every morning. Lasts for about and hour it seems
murf: I do when I eat something hotter or colder than 98.6
MikeG: Ron - that just means this window is dependent on the main KD chat window and you shouldn't close it.
UTE: Most of the time acid reflex medicine and not eating to close to bed time keeps mucus at bay...but a bit of mucus after waking up
murf: cough up some big stuff
poohsdaddy: Thanks for the affirmation... I thought it was just me -- or the damp weather.
murf: sometimes it goes the wrong way
Stan: I have found that when I eat ice cream, it will trigger the coughing and mucus. Feel a lot better afterwards.
murf: I don't have the energy half the time to cough
loshimo11: I experience the excess phlem and mucus once or twice a week. I've been taking Mucinex and it really seems to help.
UTE: I don' t tkae neurontin or gabapentin
murf: I'm thinking about a coughing mashine
murf: machine to help me cough
MikeG: I usually get it when I eat my hottt salsa... :)
Ron: I have a choc shake almost every night. Doesn't seem to make alot of mucus.
murf: yup spicy food sometimes does it too
murf: I bring mine up from deep in my longs
MikeG: UTE - I take 2 300mg gabapentin caps at night and haven't had a dry drowning episode in months...
poohsdaddy: The doctor also says I should drink more water... but then I have to empty during the night.
fl-don: i have a terrible time with mucus every morning. going to see a doc in a few weeks!
Ron: Spicy may bring on the cough--but, it is so good and worth it.
murf: I thought it was left over from my smoking days
MikeG: Don , have you had any dry drowning lately?
murf: I love a cough that brings upo the stuf .... almost like sex
fl-don: no dry drowning for some time
poohsdaddy: I quit smoking when they went to 50 cents a pack, but my wife still does.
loshimo11: Anyone here experience weakness in the neck? And if so, how do you deal with it?
UTE: Does anyone else have to use a high dresser or counter to pull on a shirt or coat? no arm strenghth
MikeG: how much gabapentin are you taking?
murf: 50 cents .... when was that?
fl-don: none
MikeG: Great!
fl-don: never took gabapentin!
murf: No arm strength here too
MikeG: I remember when they went from 20 cents to a quarter - my grandfather was furious!
murf: I take lots of gabapentin
murf: 1800 mg /day
billeric: I took Neurontin for quite a long time. Did nothing for me.
fl-don: just what i need, another pill!!!!!!!!!!!!!!!!!!
MikeG: Don, how about neurontin?
Stan: I don't have the strength I used to. Can't lift more than about 30# with one arm. Arms as skinny as a pipe.
fl-don: no neurontin for a few years
murf: I take those and Ultram ER 2/day for pian and some days its still not enough
MikeG: Stan - I can't lift 30#s with BOTH arms... :)
billeric: I don;t think I ccan either
murf: 30 lbs .... 30 grams for me!!
poohsdaddy: My weakness is primarily in the hips and legs... the 50 cent cigarettes were in the early 70's. The cost has really gone up lately with all the added taxes. (more than $60 per carton -- almost $200 per month) She is trying to quit.
Stan: I guess I'm not as bad off as I thought. Still a frickin pain considering what I used to do.
loshimo11: Stan... Don't think I can lift 30 ounces at this point.
murf: and then I break a swet
UTE: problem is I feel no when I fracture my feet with little nerve feeling left...I don't even realize it
murf: thats not good
murf: my toes are always cold now so nerves are going there I think
murf: I cold be sweating and my toes are cold!!!???
murf: could be
UTE: Terry...welcome fearless leader
murf: Hey Terry
Terryw: Not fearless
MikeG: hey Terry
Terryw: hi
MikeG: how's the ranch?
poohsdaddy: I'm still limping around since I hurt my left foot April 6th... tore the ligaments, and have been doing exercises.
murf: ouch
murf: I been there
loshimo11: Good morning Terry.
MikeG: I'm using a walker now and haven't fallen in over 6 months... it really helps!
murf: Hey Dart
Dart!: Good morning everyone - I wish you all a great day! Yes, I am late - perhaps you could say everything one more time? - JOKE!
fl-don: hi , hope all is well with u & susanne
Ron: Murf usually herts his feet by dropping his wallet on them.--LOL
murf: I used a walker in the house for a few yrs
murf: Ron lol
billeric: I use a walker most of the time when outside the house. They sure help.
fl-don: i pretty much use a w/c all the time now
poohsdaddy: My wife likes pushing me around the stores in their wheelchairs... better service most of the time, but some people can still be very rude.
fl-don: with a seat lift
murf: Now I have 3 chairs ... one stays in the house ... opne stays in the car and One in the garage I take the dog for a walk in
Stan: I use a cane right now, mostly as a just in case. The only walker I have is my duaghter - please go get me this...
murf: MDA paid fro two of them
loshimo11: I've been using a walker inside the house and a cane and the wife outside.
gary_kc: I use a power scooter because I can't walk at all. It helps me lots.
billeric: The walkers give you a place to sit when you tire. I sure like that feature.
murf: I hear ya Gary
murf: I can't hardlyu stand any more
murf: caqn't type ether
murf: lol
Ron: U mean youy can't stand me--Right Murf--LOL
murf: lol
loshimo11: Murf... You're a funny guy.
murf: I love u Ron u know that
Ron: Back at you.
poohsdaddy: I've looked into getting a walker... and found several at our thrift store for less than $10 each. The ones with the seat cost much more, but you probably already know that.
Stan: I have the problem with the keyboard too. Too small for my fingers.
UTE: The wife's shoulder makes a great walker...but for work its a powerchair...and at stores its being pushed in a wheelchair... and frequently a walker in the house... I have to use the height of the wheelchair or my elelevated lazy boy electric chair to get up now
murf: loshimo11 when its all you got u gotta!!
MikeG: I got my walker - with a seat - for $40 from a friend.
billeric: Medicare will buy your first walker if you are eligible.
fl-don: just ordered a lift lazyboy and should get next week
MikeG: use it all the time in the house now.
fl-don: applied for medicare to pay for the lift mechanism
murf: fl-don I wrote mine off on income tax
loshimo11: Anyone have trouble getting these walkers in/out of their cars?
MikeG: I use the powerchair for Home Depot, and Walmart
murf: MikeG too slow
murf: lol
murf: and I can't make it to the door anymore
murf: lol
billeric: I did too Don but must have screwed up. Never got the reimbursement.
poohsdaddy: I still force myself to go to physical therapy to exercise whenever they're open... and try to do a little more each time.
UTE: Getting anything in or out of the car is a hassle so I ususally use public transportation instead
MikeG: Don, Pauline gave us John's lift chair - real niced but slooow...
fl-don: i just applied, dont have it yet
fl-don: recliner or w/c mikeg?
MikeG: we had to rearrange the whole living room to make it fit with that huge sectional we have... bar is now in the back.
fl-don: save the ar!!!
murf: lol
murf: That thing used to make my leggs wabbly so I had the throw mine away
billeric: Bad move Mike. Bar is always up front!
Stan: I'm in the middle of Mich. farm country. No public trans and 30+ miles to anywhere there is a clinic from here.
MikeG: :)
fl-don: furniture is optional, bar is a necessity!!!
MikeG: it reclines and lifts
fl-don: use to live in sterling heights and warran stan
MikeG: I can sleep in it...
murf: Hey Stan u have a car & a chair?
poohsdaddy: I wish I had kept in touch with John and Pauline more .... over the years. He was the first in our cousins family to have KD
MikeG: yep - he was a good one!
murf: what a legacy
fl-don: john was a great guy pooh
murf: good man
fl-don: always helping others
MikeG: need more like him
UTE: Stan...have you checked into any KD doctors...maybe at the U of M
fl-don: yeppers
Stan: I still drive. No chair. Don, I have relatives still living there. I'm north of Albion now. Grew up in Detroit and Redford.
fl-don: stan, try dr daniel newman at henry ford. he was my 1st kd doc
fl-don: east detroit for me growing up
Ron: What happened to Terry?
murf: poped in then out
murf: checkin on u guys
MikeG: don't know - I've noticed several leaving and coming back in - is there a problem?
murf: lol
Stan: Anal Arbor is a 60 mile drive. Nothing listed at UM on the MDA site that I have found. Closest I've found is a clinic in Lansing
Ron: Is he doing OK?
fl-don: they have a great als clinic at henry ford hosp where you sit in a room and 5 - 6 doc visit you in 1 visit
loshimo11: murf...Was it something we said?
UTE: Stan..I went to elementry school in Brooklyn
murf: lol no
fl-don: i did nascar in brooklyn
poohsdaddy: Maybe he just had to go do something different... Hope that all are okay!
murf: I talked to him Weds and hes doing ok had to go rescue Susanne on the interstate
Stan: My nephew is going to UM and HF for treatment. He has ALS.
Ron: Don--what do you mean you did nascar in Brooklyn?
fl-don: als treats kd at hf
murf: she broke down (fuel pump I think)
fl-don: mich int race track in brooklyn, mi
UTE: old bus route went around whats the race track now...then went on to Jr High in Ypsi and Dearborn
Ron: OH...
fl-don: went to nascar races
murf: Jesus Don ALS cures everything I heard
fl-don: its just a als clinic, also treats kd
murf: oh
murf: sorry
fl-don: np
Stan: I used to race at Milan 30 years ago. C/SSA class.
fl-don: great place
fl-don: i was just a nascar spectator
murf: me too
Ron: Stan--I couldn't get in and out of the windows. LOL
fl-don: but i do warp speed on my w/c at times
murf: lol
poohsdaddy: Anyone hear from Angela lately? since last chat?
murf: yup talked to her Weds too
murf: shes ok
UTE: Yakima Kid are you getting a drout like Seattle
murf: misses everyone
murf: is that Scott?
yakima kid: Yep, wer'e desert here!
fl-don: i gotta go, tc all, bye
murf: c ya Don take care
Ron: Bye Don.
poohsdaddy: It was great to see all of them at NIH... except for the EMG.
Stan: Take care Don
murf: I hear that
yakima kid: sorry I'm late, screwed up my sign-on
murf: she was not too bad in the end
murf: and thats what is holding up the report
murf: the EMG results
poohsdaddy: HAPPY FATHER'S DAY to all... Gotta get going soon.
murf: lots of data
murf: yup a good day Pooh
UTE: And happy to you too pooh
murf: yakima kid r u Scott?
loshimo11: Take care poohsdaddy.
yakima kid: No-- sproul
Ron: How many of your sons have been diagnosed with KD?
murf: ok sorry
MikeG: me2 - gotta go. Take care everyone.
murf: c ya ike stay vertical
murf: Mike
Ron: solong Mike
poohsdaddy: I get to help Cantor at church; and hopefully, see our new grandson too.
loshimo11: Taking my walker out to the exit door. Take care everyone and please stay healthy and vertical.
murf: right on
yakima kid: See you next time.
murf: loshimo11 take care now
poohsdaddy: Next chat -- July 18th ?
UTE: Welcome Dean...what part of the country are you in?
murf: Dean was that u just joining ?
Stan: Take care all. I'm off to see what I can get into so that the wife can yell at me.
gary_kc: pooh, Yes.
murf: poohsdaddy yes
dean: yes
dean: Phila
dean: alittle late a
Dart!: Yep, it is that time again - it came earlier today. Anyway, in two weeks, huh?Be good!
murf: ur EST
gary_kc: Gotta go. Take care all. See you at the next chat.
poohsdaddy: Thanks to all !!! Bye... til then.
murf: Gar c ya take care
murf: Gary
murf: everyone ok?
dean: hello and good by
murf: Hey Dean
murf: I'm still here
Ron: So longf--Stay healthy till next we chat.
murf: for anyone
murf: Ron C ya man
murf: e-mail mke
murf: me
murf: can't type
Ron: Stay healthy Murf.
Ron: Bye
murf: u 2 man
murf: u guys ok?
murf: need to talk?
UTE: Great get together Murf and Bill...
murf: Always worth it
murf: time flys
murf: when ur having fun
murf: lol
UTE: Amen to that
murf: moving too fast these days
UTE: You both have a great week... Bill ... hope to see you in Az again someday
murf: ok and u stay vertical see u in July 18th
murf: Bill u ok?
UTE: So long...Bill must have fallen asleep at the keyboard
murf: stick around for a while to see
murf: Hey Bill ... wake up man!
UTE: I'm thinking he must have walked away from his computer...
murf: Probably
murf: I do that myself some times
UTE: Talk to you all next time
murf: ok man thanks
murf: stay vertical!!
billeric: Will do it Eric.Stay upright guys.
murf: ok Bill u take care now
murf: c ya Eric
murf: lol u walk away?
murf: ok c ya