Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

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Kennedy's Disease Chat Transcript  02-21-2009

Topic:  Open Forum

Host: Muray Williams


BEGIN CHAT

murf: morning
murf: hey Stan
stan: Morning.
murf: How's life?
twitch: Moning gents.
stan: Ok. Could be worse. Morning twitch
murf: Morning Twitch, I like your handle
murf: :}
twitch: If your going to have muscle twitching you may as well make the most of it.
twitch: Its my first time on here, how does it work?
murf: yup I've been twitching and jurking for yrs
murf: hope no one starts calling me a jurk
murf: just talk
twitch: Twitch, jurk its all shake rattle and role....
murf: once we get more people we may end up going to a topic but this is a free chat this morning so no specific topic
stan: The chat works just like you see it. Bunch of guys typing about anything and evrything. Maybe get some questions answered. Maybe get some help, tips.
murf: Stan were u in the study?
stan: Whay study?
murf: The clinical trial we just finished
twitch: Ok, great. I'm 35 in may in the uk and waiting for the results of my dna test so though id check out the exclusive club i'm joining
stan: Did not hear or know anything about it.
murf: I was a two yr study that finished up last Dec
Ron: Good morning guys. Hope you are all doing well.
murf: we are getting information now on whether we were on placibo or the drug
murf: Hey Ron
stan: Morning Ron. Cold, but alive
twitch: Murf, what was that all about? Morning Ron
murf: Dutasteride study studying if it blocked the DHT from entering the nerve cell nuclious
Ron: Hi Murf--I got the results of Angela's test. I was on the dusteride, the real deal.
murf: I was on placibo
murf: sugar
murf: like I wasn't6 fat enough
murf: morning TJ
Ron: LOL
murf: morning Lou
murf: hey Bill
poohsdaddy: Good Morning...... I was also on the real dutasteride.
Ron: I know I was on the dusteride but, don't know it really helped. But, I think it helped to keep it from getting any worse.
murf: TJ???
murf: poo who are you?
billeric: Good morning guys from lovely, warm Az.
Ron: Lucky Bill.
murf: Warm in Houston too
Ron: 30 deg here in Penna.
murf: aaaaaaaah
gary_kc: Good morning. This is Gary Uchiyama joined from Kansas City. It is a nice sunny day.
stan: Morning from cold and snowy Michigan. 17 degrees, 20 mph winds, gusts to 30
murf: Hey Gary
loutudor: hi
twitch: sunny in the uk and i have a beer to, bit early for you guys I take it.
murf: 62 in Houston
murf: I littel ya
poohsdaddy: I've been here several times--from just north of Milwaukee, WI. My name is Jeff, but I've been called pooh since college years by friends.
murf: ok Then we'll call ya pooh, I thought you were TJ for a minute sorry
loshimo11: Good morning everyone. This is Luis Shimomura checking in from sunny San Francisco.
Ron: In that case hi Pooh.
stan: Yep, chat and a beer, You got the idea ok for your first chat Twitch.
murf: hey Luis
billeric: It sounds like the meds from the test didn't help much. Am I right?
murf: we don't know yet
Michael17860: Hi All
murf: it will be another few months before we get results
murf: Hey Mike
murf: al
murf: :-}
poohsdaddy: Very cold here today and flaking heavily with a Winter Storm Warning in effect.
billeric: Yuk!
twitch: Cheers stan, can I ask you guys, does exersive agravate your muscle twitching? And has anyones condition started in their arms and not their legs?
murf: man I love it here. no more fighting the weather.
loshimo11: California has only received about half the rainfall it's supposed to get. We're praying for rain in the next few days.
murf: My upere left lip has been going for a few days now
murf: you need it
poohsdaddy: I ttold Angela that I felt a lot better while taking the pills; and very weak lately.
stan: Too much exercise aggravates mine. I've progressed where the weakness and twitching affects most everything.
murf: you can get a prescription from your doctor it has been approved by NIH
billeric: Lip quivers seem to be really common in K.D.
murf: I excerse in the pool
murf: exercise
murf: The drug name you tell your doctor in Avadart
murf: that is what we took so if you felt better on it we have been told to ask your doctor for a prescription
poohsdaddy: Fell and could not get up 2-3 times this week. Crawled around and waited it out. Got yelled at by my wife and our son that has been living with us for trying to do things alone.
billeric: They use that same drug for prostrate problems
twitch: great, where did your condition start? mine was left hand then progressed up the arm into my back and into my other arm. Now the twitching has started in both legs
murf: I know the feeling
stan: Yep, I get that all the time, Pooh. I don't listen. If I quit trying, I might as well die.
murf: billeric all linked with baldness too
loutudor: Can you send me Avadart info I can share with my son's neurologist?
billeric: Mine started as leg weakness
murf: loutudor intewrnet is the3 quickest info
poohsdaddy: Thanks Stan for the affirmation.
murf: google it
twitch: anyone else start in the arms/hand?
stan: Mine started as leg cramps and weakness.
loshimo11: Mine started with a weak ankle. When I went to see the neurologist, he told me I only had 3 years to live (ALS)!!!
murf: I thought mine did untill I went into the study, now I know it was no being able to close3 my righteye
murf: that was yrs before I started getting weak legs
murf: Hey Mike
MikeG: hi Murf
loshimo11: Hi Mike!!
MikeG: sorry I'm late =- browser problems
murf: we're talking the study
MikeG: hi loshimo11
murf: but open to anything
Ron: How warm is it in sunny FLA.
MikeG: it got down to 40 last night here
MikeG: not too cold but too cold for my hands...
loutudor: In the 70's here in Stuart, FL
murf: We'll have rain today 40% chance
Ron: Cold sure takes its toll on us.
MikeG: hi Lou!
MikeG: glad to see you on the chat!
murf: I can't do it any more
twitch: thanks for the feed back guys
murf: too many yrs in -40
poohsdaddy: My KD started with hip pain and weakness in legs.
loutudor: I'm here to learn from you guys!
murf: you're in trouble
MikeG: +40 is bad enough - I can't imagine -40!!!
dsproul: Has anyone tried steriods like the ball playere's get?
murf: dsproul yes don't do it
billeric: Going back to Vegas tomorrow (Golden Nuggett) to retrieve some of the money I left at the Vegas convention
dsproul: what happened?
murf: I used to work outside in weather like that
poohsdaddy: I think we're here to support one another--just knowing that none of us are alone really helps!!!!!!!!!!!
Ron: LOL
Ron: Good lock Bill.
MikeG: that's right!
Ron: LUCK
murf: you will add wieght and may danage your liver but it has no benefit for us
billeric: I might even bid on a Senators job!
murf: Pooh thats the big one for me too
dsproul: Not even temporarily?
loshimo11: billeric... They keep sending me all sorts of emails offering all sorts of discounts and promotions. They want me to continue donating to their cause.
murf: :}
murf: billeric
billeric: Me too, I finally bit.
MikeG: L-Arginine is a milder version that some say helps... and Creatine too.
poohsdaddy: I was a mailman, but have been off work since Nov. 29, 2007. It became too difficult to stand or walk that much...Am still in the process of retiring on disability.
murf: hey for you guys on facebook http://apps.facebook.com/causes/222183/18221261?m=ac75a943 is a cause KD that Gerry srated. check it out
loshimo11: MikeG...My neurologist suggested I try creatine many years ago. Didn't do anything for me except it made my mouth dry and I was always thirsty.
MikeG: how much were you taking?
billeric: I tried creatine too. Did nothing.
murf: I still have a bunch from when I quit too loshimo11
loshimo11: MikeG...Can't remember. This was many years ago.
dsproul: are these things steriods?
murf: for you new guys ... we've pretty well tried everything
MikeG: no - the Arginine is an amino acid
murf: tried that too
stan: Well I wish someone would come up with something that will help me gain weight and muscle strength again.
murf: I still take extra B
billeric: I even tried testosterone patches. Now we find out they are detrimental to our disease.
Ron: I thought about becoming a drug dealer. We have tried most of the drugs that they say MIGHT help us, LOL
murf: You can have some of my fat anytime lol
dsproul: sometimes doctors shy away from things because of long term effects
loshimo11: stan...In addition to handsomeness too!!!
twitch: Ok, is there any every day stuff worth topping up with, vit-c calcium etc...?
murf: we need to start talking to NIH people for things to take but y'all can check here first
murf: someone in here has probably trie3d it
MikeG: I take B, C, E, and sunshine...
loshimo11: billeric...Tried testosterone patches too. The neurologist prescribed them maybe 9 years ago (before they determined to be detrimental to KD). Really felt the adverse effects after a week and then stopped using them. Even this far down the line, I feel like I never recovered.
stan: Twitch, The main thing that everybody seemed to agree on during a chat a few months ago was BEER
murf: twitch over dose on C will go through you No Problem
poohsdaddy: I take B-Complex, B-12, C, Calcium, and Potassium in addition to the prescriptions.
murf: u really need to watch OD ing on certain Vit
MikeG: yeah, I hear too much B is not good
twitch: Thanks guys. apriciate it.
murf: Stan I tried scotch and found it only made my legs more wobbly
CER: This is Charlie from WV - (now CER). Do any of you belong to The American Legion?
Ron: YES
murf: Hey Charlie
dsproul: As an older guy I would like to be a test subject --I have nothing to lose
stan: I asked my neurologist about vitamins and he said it would not help.
Ron: Chas--how is Anna lee?
murf: dsproul stand in line there4 are a bunch of us with our hands up lol
MikeG: vitamins don't help KD but they help your general health
murf: correct
murf: they don't hurt
CER: My reason for asking----there us an article in the last magazine An Unsolved Medical Mystery The VA may start paying benifits up to 30% for ALS. Question - why not Kennedys?
murf: good question
CER: Ron, you know this is Anna Lea typing and I am ok....
murf: Probably because this is a very unknown disease
dsproul: All I get is a stonewall from my Dr.
billeric: I just completed my MDA check up. Lots of chatter but nothing new.
murf: the website is the best place for data on KD
Ron: Good to hearfrom you Anna Lee. How is Chas doing?
CER: I wish all Kennedys men could read..... They also state ALS is not common...
murf: have him go the the website
poohsdaddy: Alternat between Prednisone and Celebrex for pain with Tylenol and Darvocet
murf: send us a coipy please3 to mwilliams1077@comcast./net
dsproul: His encouraging words were you are doing better han I expected
murf: wrong This email address is being protected from spambots. You need JavaScript enabled to view it.
CER: Charlie is doing pretty good. Has certainly gained weight since the feeding tube. This past Thursday he had to have a lump removed from breast. Got along well.
murf: dam fingers
billeric: Thats about what I get.
loutudor: Our neurologist talks about keeping from being overweight as real important for balance.
CER: Murf, were you asking for a copy of the article in the Legion magazine. We get no benefits.
dsproul: lately i've been getting a lot of itching in hands and arms
murf: yes please second e=mail address works
MikeG: very true Lou. Balance is definetely affected by weight!
murf: dsproul you will go blind
murf: :}
stan: I've always been underweight for my size.
murf: i've been overwieght
murf: emy whole life
MikeG: that's better than being overweight
murf: ?
murf: LOL
MikeG: I could stand to lose about 10 or 15 #s
murf: for me 40
poohsdaddy: I'm not overweight--I'm undertall (for my current weight). HA HA HA
CER: ok - I will send article to you Murf. Charlie was down to 110 lbs. due to not being able to swallow. That is on a 6Ft. frame. He is not up to 124 and that is since Aug. 6, 2009.
murf: LOL
murf: love it Pooh
murf: thanks Cer
stan: I'm one of those people that everyone hates. Can eat anything and evrything, and not gain a pound.
loshimo11: I'm one of those lucky ones that have not had weight problems. However, over the years, it seems like all the weight has gone from my arms and legs to my stomach.
murf: I hate you Stan
murf: LOL
stan: See, I told you! lol
MikeG: same here loshimo11
dsproul: my appitite has dropped wayoff
twitch: stan, is that bragging or modesty??
murf: I have dunlop disease when my be3lly dun lopped over my belt
stan: No brag, just an unfortunate fact.
poohsdaddy: I've been on the seefood diet. I see it and then I eat it, but trying to control willpower and the overactive knife and fork.
Ron: I was having a milk shake every night about 9 o'clock. didn/t gain a pound.
murf: yup I know it
murf: I hate you too Ron
twitch: depends of your point of view, lucky man. :}
murf: 'I look at a cookie and gain a lb
Ron: Sorry Murf.
murf: LOL
murf: Can't dance & to fat to fl;y
Ron: LOL
murf: oh ya fingers don't worlk anymore either
Ron: Brain still works, Murf.
murf: don't terll anyone
MikeG: that's the problem - we can't exercise enough to lose the weight.
dsproul: especially have to lay off food in the evening Getting the old folks eats like a bird
murf: tell
billeric: Got to go guys. Gotta get ready to win some money! Stay upright.
MikeG: good luck!
poohsdaddy: I try to eat earlier in the day--and less later. Seems to help from gaining any more.
Ron: Good luck Bill.
murf: we do have exercise schedules on the website
murf: if we exercise we should follow those
loshimo11: billeric...Good luck to you buddy. Win back some of the money I left there.
murf: Bruce put them up
murf: cya bill
murf: missed
dsproul: excersise takes motivation with weak muscles
MikeG: I do some of the ones in his Guide II but can't get the gut off
murf: It's all we couchpotatos wanted ... no exercise ... cool
dsproul: Try perching on a stool and raising your kness as high as you can
murf: sounds painful
poohsdaddy: Do you know if insurance will pay for a walker? The one recommended is almost $200.
murf: you can get a great walke3r at Sam's Club if your near one
dsproul: eiser on the back
MikeG: if your MDA office has a loan closet you can get one from them.
murf: Has breaks and a seat
Ron: Pooh--try to get in touch with your local Lions club. They should be able to guide you to FREE hospitak equipment.
loshimo11: I've recently looked at Bruce's conditioning writeup. It kinda looks like... uhhh... exercise.
Ron: Hospital
murf: yes your insurance should payh for it
poohsdaddy: Thanks for the suggestions.
loutudor: The MDA will provide most anything you need
murf: Also people the government allowed me to write off my swimming pool on income tax for exercise
murf: Yes the MA is a great resource
dsproul: I just got a scooter --paid for by medicare and suplimental insurance
murf: MDA helped me with two powerchairs
loshimo11: MDA actually got me my electric chair.
poohsdaddy: Are you the guy that does those commercials? for the free mobility equipment?
murf: powerchair ... electric chair sounds so ... final LOL
CER: MDA just got me a scooter. I had gone round and round with Medicare.
Ron: I agree Murf. LOL
murf: LOL
dsproul: My hoveround is too big for my house--looking to trade?
poohsdaddy: I'm still too stubborn to admit when or that I need help.
stan: Same here, Pooh
loshimo11: I didn't get the standard electric chair. Just the one that moves me around when needed.
Ron: Don't wait too long to ask for help.
murf: I got a Z-chair from Pride forthe house
dsproul: I only use my chair when at the park or at a store where they don't already have one
poohsdaddy: Has anyone heard from Kelly lately? or since his brother died? Was it KD related?
stan: I walk whenever I can. Exercise.
murf: dsproul I have an Invicare for that
MikeG: same here stan
Ron: Good job running the chat Murf. I must go for now. Stay healthy till next we chat. See you at the board meeting.
Ron: Bye.
dsproul: Invicare is smaller?
murf: cya Ron
MikeG: only use the chair when I need to go over about 100yds.
MikeG: cya Ron
murf: dsproul No different manufacter
dsproul: Mike, with me it's 50 yards
CER: Bye - must go.
murf: Cya CER thanks for coming!!
MikeG: I used to run 10Ks - now I can't run 10 inches
murf: you know any one can come here any time to chat
poohsdaddy: Our son and daughter-in law are moving next weekend--and taking their computer. Don't know when we'll get hooked up for ourselves.
stan: Bye, take care Ron, CER
MikeG: well, I need to run too folks. Until next time - be careful!
stan: I don't run at all. Used to weight-lift
murf: run???? LOL
dsproul: somplace have local orgs. that will help you with a computer.
murf: Cya Mike
dsproul: murf--we can log on anytime?
poohsdaddy: Thanks for listening (or reading) and responding. Stay upright. Best to ALL. Bye.
murf: There is a lot of places that can help us and MDA again is a good resourse
murf: you can log on when ever you want
murf: probably need two people though
murf: cya pooh
dsproul: OK thanks for the good info
murf: does anyone have anything they want to talk about?
loutudor: Murf...love your sense of humor! Tnks for a great chat!
dsproul: yes
loshimo11: Gots to go everyone. Stay healthy and vertical.
murf: sick huh?
murf: LOL
murf: loshimo11 stay safe
dsproul: does anyone have weakness in one leg and not the other?
Michael17860: Murf My tax man told me that I would only be able to write off about 10G for a pool.
murf: nothing we can do so humor is important
murf: I wrote of 51K on mine the hole cost and this yr the cover unroom I built
murf: sunroom
murf: need to use the pool 365 day not just when the sun is out
loutudor: Bye and take care everyone
Michael17860: How could you write off in ttwo years?
murf: cya
dsproul: brekfast is calling-bye
murf: pool first yr sunroom 2nd yr
murf: cya
stan: Ok, take care everyone. Until next time. Bye
Michael17860: even though it was built in the same year?
murf: cya
twitch: Hi dsproul, I have no weekness in the legs as of yet, just intermittent twitching. My starting point was my left arm, from there it moved to the otherside and then down, the arms are weak and very skinny now. I'm expecting the legs to take 3 year + catch up withj the arms. did loads of cycling and running so there pritty strong so far.
murf: ya the sunroom is still not really finished
Michael17860: OK
murf: twitch keep in touch with us we will give you all the support we can
Michael17860: Must go Thanks Murf,
murf: cya man tks
twitch: Murf, plesure being on. thank you for the tips. Keep twitching!
murf: LOL
murf: ok
murf: cya
murf: gary ??
murf: whats happenin dude?
murf: gary u ok?
gary_kc: murf. Yes, I got go to. Have a nice week.
murf: ok stay on your feet
murf: Cya
gary_kc: Bye