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 04-06-02

Topics: Open Forum

Chat Participants:


Begin Chat

butch -- {welcome butch}
butch -- Good morning...Hope to see someone come on line today.
patrick --
{welcome patrick}
patrick -- Hi, Butch. What's new with you today?
butch -- Hello Patrick. Guess we will have to start today’s chat with just the two of us.
butch -- What's new? Not too much. It is pretty chilly here in Pennsylvania. Had some snow flurries earlier in the AM.
patrick -- This weather has been really strange this year here in Kansas.
patrick -- What part of Penn are you from?
butch -- I understand Terry has been having alot of trouble by days end. Have you spoken with him to see how he is doing?
butch -- Lancaster Pa. I know you know Annette. I am her father.
mikeg --
{welcome mikeg}
patrick -- I haven't spoken to Terry much lately. We'll talk today at our meeting.
mikeg -- Greetings from Atlanta
chuck --
{welcome chuck}
patrick -- About all I know about Lancaster is what I've seen on TV and in the movies: Amish country et al.
patrick -- Hi Mike and Chuck. Welcome!
mikeg -- Hi everyone. What's this about Terry having some problems, Butch?
patrick -- I'm the moderator today, and the chat is today is general discussion. If anyone has any questions or comments, feel free to start.
butch -- I heard he is really tired by days end. Hope it is only a temporary situation.
mikeg -- Does anyone here take Neurontin and if so, have you had positive results?
chuck -- I tried it a couple of years ago. Dr. Rothstein suggested but took it approx. 1 1/2 yrs. We didn't feel it was helping so stopped.
patrick -- I've heard of it, but have never taken it. What does Neurontin do, or supposed to do?
mikeg -- Butch: I'm feeling VERY tired by late evening here lately and I believe it's due to the Neurontin.
butch -- I used to take neurontin. It didn't seem to do much for me. I now take naproxin. This seems to help me.
chuck -- It is a noted drug to control seizures, however, it is used for many other things according to medical profession.
mikeg -- I first thought it might be helping me regain some muscles but I guess it was just the added exercise in replacing the hot water heater that caused me to have the sore muscles.
chuck -- My local medical Dr. is now having me try Pamelor for my leg pain. Just started so really can't tell as of yet.
kdfl --
{welcome kdfl}
butch -- I don't know how many of you are on some type of disability program, but I would like to find out what is available for us. I am still working but it gets harder each day to do the tasks I must do.
mikeg -- It is made for seizures and my neurologist prescribed it to see if it would help the fasciculation’s.
don48312 --
{welcome don48312}
kdfl -- I am taking one 300 Mg capsule per day but don't see where is doing any good. I guess our progress is just too slow to really tell if anything is helping.
don48312 -- gm all
mikeg -- Good morning John! How is Sun City? If you need some rain - I can come down there again...
kdfl -- gm Don.
don48312 -- I take neurontin to clear the fluids from my throat. take 300mg 3 x a day. its works 4 me
mikeg -- John: How often are you taking the 300mg?
kdfl -- Mike, SCC is still just great but we could really use the rain. So any time you are ready!!!!
don48312 -- hi mike, no rain since u left sun city center
kdfl -- Mike, only once per day. She had me on more but since there was no noticeable effect I asked to cut back.
don48312 -- just got back from casino in Gulfport Miss. could anybody float me a loan??????????
mikeg -- Hey, Don! How do you stay awake after taking 300 mg??? I went up to 200 and was so drowsy I was afraid to drive...
don48312 -- I sleep better than I have for many many years. I like the sleepy side effect
kdfl -- Don, I thought you always won at the poker table. Be honest now.
mikeg -- I think that I'll do like John and take 300 at bedtime.
patrick -- I take tizanidine hcl, which reduces my fasciculation’s. However, it also makes me drowsy. I also take meds for hypertension, in the AM, and when I take the tizanidine with those meds, I usually fall asleep within two hours. I'm supposed to take 4 mg 3 times a day, but if I am going to drive somewhere, I skip it until bedtime so I don't crash.
don48312 -- lost this time. bad omens from poker gods
kdfl -- Maybe that is why I sleep so good. I take mine in the early evening.
mikeg -- My neurologist gave me samples from 100 to 800. I don't think I'll ever get to the 600, let alone the 800.
don48312 -- any news about dates for Balt conference???
patrick -- We're having a meeting after the chat on the Balt conf. Susanne will put out an email with an update after that.
patrick -- Does anyone know the generic name for Neurotonin?
kdfl -- I'm not sure there is even a generic name for Neurontin.
mikeg -- Butch: Be thankful you still have a job. I haven’t had a full-time client since 9-11!
patrick -- As far as getting sleepy, it seems if I have 'good days' and 'bad days'. Some days I feel great, relatively strong and alert. Other days, I feel tire, mentally and physically. Does anyone else feel that way?
mikeg -- Pat: Gabapentin
kdfl -- Mike, I guess there isn't too much holding you in Atlanta then.
lenj --
{welcome lenj}
lenj -- Hello everyone, sorry I'm late
patrick -- Thanks Mike. Yeah, my doc tried that one on me a few years ago. It didn’t seem to help, and I remember (I think) that it had some side-effect that bothered me, so we DCd it.
terryw --
{welcome terryw}
terryw -- Hello
mikeg -- No, as a matter of fact, I find more jobs in Tampa than I find in the entire state of Georgia!
kdfl -- Thanks Mike, I'll have to ask our neurologist if that would be any cheaper and just as good.
mikeg -- Hey Terry and Len.
lenj -- Mike G try Nevada
don48312 -- yes mike, Tampa is waiting
terryw -- woke up late, Last night was my first night on Klonopin my new Med. and it knocked me on my butt.
mikeg -- How the move prep going, Len.
kdfl -- Hi Terry, glad you could join us today.
lenj -- Don, I"ll fight you for them
don48312 -- hi terry
kdfl -- Mike, sounds like Tampa and Nevada are both vying for your attention.
terryw -- Hi Don and everyone
don48312 -- dueling w/c's, lol
lenj -- Yesterday was Jeanne's last day of work, now the packing begins.
don48312 -- gl on move len
mikeg -- I don't now Len - you'll have to really go some distance to beat FL.
terryw -- Anyone here take Klonopin before?
patrick -- There's been quite a bit of research lately in the ALS community that indicates that oxidative stress causes increased neural degeneration. It appears that taking anti-oxidants can slow down degeneration of neurons and improve their longevity. Does anyone take anti-oxidants?
lenj -- We move to LV area on 22nd, make plans to visit--others already have.
don48312 -- did any of u get the e-mail from Alistair in Australia?
butch -- Hi Terry--How are you doing? Heard you were getting VERY tired by early in the PM. Hope you are feeling better now.
don48312 -- <--- no Klon
kdfl -- No Klonopin for me either.
terryw -- I still get that way. Hut I just go to be very early.
patrick -- I've heard of Klonopin, but can't place it. What does it do?
don48312 -- <--- not sure if I take anti-oxi
terryw -- but
mikeg -- I've taken anti-oxidants in the past but not anymore... no reason just wasn't sure of the benefits.
kdfl -- Don, I got the email from Alistair also and also the followup from Susanne. I think he had is info mixed up.
terryw -- Its a relaxant, also used for seizures. I have problems sleeping the whole night due to the pain coming back in the middle of the night. I cant take my pain meds at night because they keep me awake so the Klonopin counter acts the pain meds so I can sleep.
don48312 -- I told alistair to take me off his e-mail list. seems like he wuz trashing the KDA
patrick -- It seems there are a number of anti-oxidants, or things with anti-oxidant properties - such as Vitamin C, E, pine bark extract, to melatonin and others.
don48312 -- Mike, say hi to Paula from Judy
terryw -- Thank you all for your support to us
butch -- Alistair used to have a personal story on the web site. It is now no longer there to view. What happened?
terryw -- we appreciate it greatly. what we are trying to do here is a good thing.
don48312 -- u OK now Terry? heard u were under the weather
terryw -- what
terryw -- I am doing OK Don, thanks
don48312 -- good
kdfl -- In looking at some of these chat messages, I'm glad I'm not the only one with problems get things typed the way I want them to go out.
john-c. --
{welcome john-c.}
terryw -- I have that problem all the time, I switch letters around and drop letters.
terryw -- hi John
chuck -- Hi John. Was wondering where you were??
kdfl -- Terry, How is Susanne doing with her new job? Hope she is really enjoying it.
don48312 -- wait till u get old terry, it gets worse, lol
mikeg -- Terry, we can all blame it on the chat software!
patrick -- I got a note from AListair that seems as if he had gotten some incorrect info from someone about the KDA and our activities. And I got one of his 'normal' emails about weather, etc. I don't know what put a bee in his bonnet (or a burr in his blanket) about the KDA and the "MNDA". Until he mentioned the MNDA, I can't say as if I'd ever heard of that organization before.
terryw -- she starts it on the 22nd I think, that’s not a real firm date but I think that’s going to end up being the date.
don48312 -- <---- never heard of MNDA either
kdfl -- Terry, You must be in hog-heaven with her at home to wait on you for a few weeks. lol
patrick -- I think the skipped letters, misspellings, wrong capitals, etc. is all the work of terrorists who have infiltrated the Internet!
terryw -- LOL wait on me,, what’s that??
kdfl -- Boy, it looks like we all have someone or something to blame for OUR goofs.
terryw -- she helps me with what I need but I still try to do alot.
don48312 -- John, never heard of anybody in SCC making a mistake!!!!!!
john-c. -- Hi men: Better never than late
mikeg -- The pointing fickle finger of fate...
don48312 -- hi john c
kdfl -- I think we all have to keep doing as much as we can for as long as we can. I just hope I don't become TOTALLY dependent on others.
terryw -- kdfl, Same here
don48312 -- ditto
mikeg -- Same here
terryw -- all agreed say I, LOL
chuck -- Yes, I think we all fret about this.
don48312 -- anyone have swelling of feet>
patrick -- Roger that.
mikeg -- John, I hope I'm doing as well as you when I'm your age.
terryw -- My feet are so cold they leave a frost trail when I walk.
kdfl -- Mike, be careful how you talk about MY AGE. lol
lenj -- My feet are always puffy, but my doc doesn't feel that the have swelled up
mikeg -- Don: Yes I am, here lately.
patrick -- My feet swell when I sit a long time especially if I drive for a few hours.
don48312 -- doc prescribed support socks but a big problem getting them on
lenj -- My hands are always cold
terryw -- when I get a drink out of storage and don’t want to wait for it to get cool in the refrigerator I just but it between my feet for 5 min and BAM,,, Its ice cold.
don48312 -- swell when on puter 4 a long time, or playing poker
mikeg -- Same here - cold hands and feet and swelled feet. That’s why I want to move to FL.
lenj -- Getting any socks on is a problem for me, but my hands and arms don't work well.
don48312 -- doc says neurontin can cause swelling along with salt
john-c. -- I just read the chat transcript from this AM and have a suggestion (from Doctor John): All the meds talk, and all the various things out there from the Drs are probably worth trying, BUT for 30 years I've taken QUININE SULFATE which is OTC in many areas. It STOPS 99% of the pain and cramping of muscles. It's really worth you guys getting 5 pills (1x/day) and giving it a try. There are NO side effects!!!!!!
terryw -- I have the same problem with socks also
patrick -- When I get home after a trip, I take off my shoes, raise my feet (lay on the couch with my feet on the top of the sofa), and rotate my feet. That gets the circulation going and reduces the puffiness.
kdfl -- Don, I tried to wear support socks when I broke my foot but found it impossible to get them on so I gave up on that idea.
john-c. -- you guys wear socks??
don48312 -- I can reduce the swelling also, but it keeps coming back
don48312 -- Judy helps getting sup socks on
patrick -- How many gin and tonics will I need to drink to equal that many quinine tablets?
terryw -- John I asked about that, they said to me yesterday that they thought that Klonopin would better suit me. I did ash for Quinine but they would not give it to me until I tried Klonopin.
kdfl -- Patrick, if I would lay on the couch, I couldn't get up.
john-c. -- Terry: stick with it! Patrick You won't care about the cold when you've reached limit.
terryw -- I have terrible problems sitting up from a lying position. Anyone else?
john-c. -- Me too
chuck -- Oh yes Terry.
patrick -- One thing I noticed is that some of my socks have an elastic band at the top to hold them up. That band seems to cause my feet to swell more.
lenj -- Terry, me too. I have to throw my legs to do it
terryw -- It really frustrates me
don48312 -- I can get up if I can get my legs over side and use leverage.
kdfl -- When my hands get cold they just don't work. I lose all strength. I haven't gone in my pants yet because I couldn't get my zipper down but it is always in the back of my mind. I don't have any trouble with my feet though.
john-c. -- We all get frustrated at times, but we can't let that take over.
butch -- Terry--I also have trouble getting up from a laying position. But I also like to lay on the floor to watch TV. Of course getting back up from the floor is always a challenge.
terryw -- I need to invent the KD grappling hook. Just give it a toss and hook it on any near object and attach it to your chest vest winch and have it pull you up. LOL
lenj -- KDFL I have that problem, I can barely get it out in time.
patrick -- Len, that's what I do. Hold my legs bent, throw them over the edge of the bed or couch, and pull or push with my arms.
don48312 -- I put a leather string in zipper to aid in getting down/up
terryw -- hook
kdfl -- Terry, I also have to lift my legs and throw them down to help me get up.
john-c. -- Don, I didn't think it got cold in Fla. I put the string on too, but was tied to the wrong thing and didn't work.
lenj -- When I can't get my zipper up, I am trolling as I call it
john-c. -- (couldn’t get it up)
don48312 -- feet cold in FL due to poor circulation
don48312 -- len, give the girls a free show, lol
lenj -- and dampness
terryw -- Another invention,,A ZIPPER CLIIPPER" Clips on to your zipper to ease in pulling it up
kdfl -- You guys are really making me laugh this morning.
terryw -- I am full of em today LOL
don48312 -- use the clipper they have to aid in using zipper on jacket
lenj -- My wife zips me up when she notices. If in public, she claims she looks like a pervert
terryw -- LOL
patrick -- I leave my zipper down while at home to make things easier. However, when I go out, I gotta check to make sure I'm zipped up I won't get arrested.
don48312 -- MDA gave us the clipper at a conference here in Tampa FL
terryw -- and you look like a lucky man
john-c. -- I have some old time skate hooks next to the ice skates. One of those could be an aid for this.
butch -- Terry--You are full of something but I don't want to say what.
mikeg -- The button hook has just that at the other end of it. It's just too hard to hook that zipper when you're trying to do it with your elbow!
patrick -- Of course we could just wear dark pants...
don48312 -- Judy replaced my buttons on pants with Velcro. so much easier
terryw -- with the zipper clipper, you just need to make sure you know what your hooking it on or you may be in great pain..
john-c. -- Mike, try the other elbow
don48312 -- no pain, no gain
kdfl -- Terry, I don't have to worry about that. Mines not very big around but It's short.
terryw -- If we all move to a nudist colony we don’t have to worry about zippers at all.
lenj -- I'm going to try elastic waistband pants, Hopefully solve all problems
patrick -- If any of you have engineering talent, maybe you could invent a miniature garage door opener with a remote control.
john-c. -- LOL!!
don48312 -- the zipper clipper would be an interesting subject at conference in Balt. wives could lead discussion, lol
kdfl -- Don, like your idea about Velcro.
don48312 -- john, tell Pauline to discuss with Judy
terryw -- boy that Klonopin really knocked me out last night I felt drunk as a skunk for a couple hours before I went to bed.
butch -- Don--was the Velcro your idea or was it Judy's idea. It sounds like a very convenient idea for many purposes. At least I hope for your sake it has multifunction.
don48312 -- Terry, nudist colony in FL would be called Prune City
terryw -- LOL
john-c. -- lol!
terryw -- I have a vision in my mind now don,, Frightening
don48312 -- lol, butch, makes for speed when im up 2 it
butch -- don--Prune City. Thanks for the laugh.
don48312 -- yeppers, scary thought
terryw -- Prune city,, is that a new development community in FLA?
don48312 -- retired now so only once a day. but time is of the essence
kdfl -- Would it be Prune City or Wrinkle City.
terryw -- Prune City, FLA
john-c. -- Butch, I'll give you my extra Velcro for MaryLou to try out. If it works for you guys I'll ask Mary to try it.
terryw -- Good suggestion with the Velcro
lenj -- Gotta go, thanks for the laughs and info. I will miss next chat as we move to sunny, dry and beautiful Nevada
terryw -- Good Luck Len
butch -- It sounds as if you all have not lost your sense of humor. Through all we endure they can't take that away.
terryw -- are you driving
john-c. -- this gives a whole new meaning to Sunkissed.
terryw -- LOL
mikeg -- Good luck on the move Ken.
mikeg -- Len
terryw -- I will never eat raisins or prunes the same.
lenj -- Flying-- talk to you late goodbye
terryw -- bye
lenj --
{goodbye lenj}
john-c. -- Bye Len
don48312 -- gl len
patrick -- And to think you could ask a friendly person to help you apply sunscreen... ;-)
kdfl -- So long Len. Don't work too hard on the move.
don48312 -- gotta go, niece on phone, cya in 2 weeks, think prunes, bye
terryw -- wake up Patrick ,, You are dreaming
mikeg -- This has been a very uplifting session. I about busted my gut. Everyone have a good one and until we chat again - hang in there!
terryw -- bye don
don48312 --
{goodbye don48312}
mikeg --
{goodbye mikeg}
terryw -- I need to go also and get a few things done before our meetings
john-c. -- Keep smiling men!
terryw -- bye all
patrick -- Well, when I dream, I can still run, bike, and ski, too. :-)
john-c. -- Bye Terry
butch -- Patrick--Be careful applying sunscreen. You don't know what will happen once you get the wrinkles out.
terryw -- me also paretic, but sometimes I dream I am in the wheelchair
terryw -- bye
terryw --
{goodbye terryw}
chuck --
{goodbye chuck}
patrick -- Butch, that reminds me of a joke: a nurse with a patient who had "swan" tattooed on part of his anatomy. She found out later it was actually "Saskatchewan".
john-c. -- Butch, you've got a great sense of humor.
john-c. -- Great
butch -- Patrick--Your are certifiable. LOL
kdfl -- I guess everyone's bailing so I'll do the same. Enjoyed today’s chat with its many laughs.
kdfl --
{goodbye kdfl}
john-c. -- Bye Don
patrick -- Life is a great cosmic joke, and I'm still waiting for the punchline...
patrick -- Well, John, looks like we're the last guys at the dance.
john-c. -- You're right, you Butch & me.
butch -- Hope to see everyone once again at the next chat. Stay healthy and happy till then. Goodbye!
patrick -- Butch, too. I think we've got maybe five more minutes.
john-c. -- I'm sponsoring a dance in MD on 4/20
john-c. -- Maybe 4-5 of you guys could come
patrick -- Is it a polka dance?
john-c. -- This one is "normal"
butch --
{goodbye butch}
john-c. -- OK to you shortly. See Ya!
patrick -- When I was a little kid, I went to a lot of my older cousins' weddings, and they always had a polka band at the reception- plus a lot of food and booze.
patrick -- Bye John. Adios muchachos... Hasta la next time.
patrick --
{goodbye patrick}
john-c. -- I'll have to give you some of my home-made VIRYTOS, an old Lithuanian drink I make (120 proof)
john-c. --
{goodbye john-c.}
butch --
{goodbye butch}

End Chat