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Kennedy's Disease Chat Transcript 02-16-2008
Topic: Open Forum
Host: Bruce Gaughran
Murf: Morning James
Bruce: Morning James
MikeG: morning James
jameson411: good morning Murf, Bruce, Mike :-)
Murf: echo echo
Butch entered the room.
Bruce: Morning Ron
Murf: Hey Ron
MikeG: hi Ron
Butch: Good mornoing guys.
Murf: echo echo
Bruce: We three were feeling like the three musketeers until you two arrived
jameson411: one for all and all for one
Butch: Where is everyone?
Murf: we were going top have a BOD meeting
Murf: to have
Bruce: Terry didn't send out an announcement before leaving on vacation
Butch: The last couple of chats we had morethan twelve guys.
Murf: James remembered
jameson411: no reminders, that must have been it.
Bruce: What is the weather like this morning in CT
jameson411: warmish, sunny
jameson411: warmish = above freezing
Murf: warm and fuzzy all over the US today
Butch: Sunny and cold in PA. 27 deg right now.
Bruce: Above freezing is good
Bruce: Ron, did you have any of that NorEaster in January
MikeG: spring has sprung down south - going to 80 tomorrow.
Butch: I guess you miss all the cold weather in PA don't you Bruce.
Bruce: Without a doubt!!!!
Butch: We had alot of rain and cold but very little snow.
Bruce: I still remember going out to feed the birds in the back yard when there was about 2-3 foot of snow on the ground. I fell and couldn't get up.
Bruce: I had to crawl all the way to the garage through the snow.
Butch: How is your ankle coming Murf.
jameson411: we had 4 inches of snow and then it was weighed down with a few inches of rain
Murf: The birds would starve if they were waiting for me to do that
jameson411: my back was very sore the next day from shoveling
Bruce: James, shovelling was a killer.
jameson411: I have to do it 15 minutes at a time
Murf: foot on the other leg (its ok but tender) the anchle was last year//1
jameson411: cause my body get tired
Bruce: I remember one NorEaster where we shovelled five times one day and woke up the next morning and the wind had blown eveything back onto the driveway. We were so exhausted we could hardly shovel again.
Murf: once a year now
Butch: Murf--have you heard anything from Louise or Bill lately?
Murf: ya both
MikeG: time for a snowblower...
Bruce: Time to move south!
jameson411: time to hire a plow
Murf: Weaser is out of town
Butch: What did you do with TJ?
Murf: Billy is still working but thinking about slowing down
Murf: I was talking to him 1/2 hr ago but he was up all night sick
Bruce: The snow was so deep that day that when I was driving home from work the snow was up over the front of the Acura Legend I had at the time and I looked like a snow plow with the snow flowing right up over the windsheild and dropping off the back of the car.
Murf: sounds like a legend
Butch: Has your foot healed, Murf?
Bruce: My goal from that moment on was to move south
Murf: Ya I broke a toe and the bone behind it this time
jameson411: oh no
Murf: I can walk on it now
MikeG: now that's a lot of snow, Bruce! Good thing it was powder...
Butch: You have to stay up-right.
Bruce: Murray and I are competing as to who has the most breaks
Murf: that was Dec 24th at the Noack xmas party
jameson411: I don't want to play that game
Murf: ya, don't5 fall , don't break
Bruce: Me neither ... but, unfortunatly I am an unwilling participant
jameson411: Should I take wooden nickels from strangers?
Murf: Thats why I use my chair now
MikeG: what were you drinking, Murf? :)
Bruce: My brother has fell dozens of times and never broke a bone
Murf: to much obviously
Butch: I've had alot of choaking episodes lately. Trying to be more careful. Turning my head to either side seems to help during choaking spells.
Murf: I had my chair in the next room when I went down
Bruce: Ron, that is interesting. I wonder what the movement does to help?
MikeG: It would be godd if you could fall gracefully...
Murf: straight down on your feet is the way I go
Bruce: Or, have an airbag installed on you so it goes off when you go down
jameson411: Move to Mars, you'll fall slower at least
Bruce: Murray and I go straight down
Bruce: My brother falls forward
Murf: Shoes with airbags .... we'll make a fortune
MikeG: Ron, are you taking neurontin or gabapentin?
Butch: I remember the Dr from Israel talking about that at the Baltimore conference. It really helps.
jameson411: falling forward/
Bruce: I must have slept through that presentation
MikeG: it really has helped me.
jameson411: What does it mean?
Bruce: James, versus falling straight down over the legs
Butch: No, but I take naproxen.
Bruce: When you fall forward ... like a trip
Murf: he was the guy that had to use his hand to suport his month
Murf: but he was standing without a cane
Murf: so legs were good
jameson411: I believe it
jameson411: I'm noticing that my face muscles are cramping easily now...
Butch: I've noticed as I get older that my mouth or lower lip seems to drop more.
Murf: Mine stopped about 3 yrs ago
Bruce: It still amazes me how KD shows up so differently in people. Some people fall straight down, some fall forward, some have more bulbar issues, some can't walk at an early age while others can ski in their 60's
MikeG: it's my knees that give out - causing me to go straight down on my foot. That's how I broke my fibula
Murf: but i find myself doing things with my mouth wide open
Bruce: Mine too Mike
Murf: Me too Mike the left knee
Bruce: Mine is the left also
Butch: Me too murf.
MikeG: just got to remember to keep the knees locked!
MikeG: at all times!
Bruce: That is interesting that is the left knee on all three of us
Murf: he kind of looked like he could be your brother Ron
jameson411: My left leg is weaker also
Murf: we are all right handed
Bruce: My right arm is losing strength much more rapidly than my right this last year. It is frustrating, because I am right handed
jameson411: not me, i'm a lefty
Murf: ok there goes that theory
Butch: During my walk at NIH with the Murry belt on--Im stopped abruptly during the walk. Angela said don't stop like that..But I said it is better than falling down,
Murf: they still really don't know
jameson411: I use righy scissors, maybe your theory can be revived
Bruce: Dr. Taylor talked about sensory issues (numbness) as something that hasn't been documented in people with KD.
Murf: they have to pay attention and thats when we go down
Bruce: My feet have just about lost all feeling
jameson411: What is a murry belt
Butch: You tell him Murf./
Murf: mine too Bruce they ting when I can feel them.
Bruce: Paul wants to study this sensory issue in more detail to see how KD is involved.
Butch: Hey Murf--explain the Murry belt.
Bruce: People without KD do not seem to understand the involuntary nature of the fall. Just the slightest break in concentration and the knee can buckle and down you go. No time to recover.
Butch: James--last year during the walk at NIH--Murf fell injuring himself--so--from now on we wear a belt to help control the falls.
Bruce: Earlier on, at least with a stumble you could try to catch yourself.
jameson411: Ya, i can still catch myself
Murf: jameson411: I was one of the first at NIH and I hand a bad flight (fell getting off in first class section). We were doing the walking test and Shuru got a cell phone call. she dropped her eye and I went down. when I did it was be himd the hall but my head fell outside the hall with a big crack. they called a code blue at the nurses station because that was all they saw. solution Murray Belt
Bruce: How old are you James?
Butch: Usually the ground catches me. LOL
jameson411: too young for this
Murf: Butch: never missed it yet!! lol
Bruce: WOW! 34 ... I can't even remember what it was like to be 34
Murf: I was 34 once
Murf: that was when this all started
Butch: I'm almost twice that age.
Bruce: Ron and I are the ancient ones in this group
Murf: only 52 here
jameson411: that is ancient.... sry Murf
Butch: You would thing being older we would be smarter---but NO.
Bruce: The good thing about your age James is that you have a bunch of good years ahead of you yet.
Murf: good ones too
Bruce: KD doesn't necessarily have to slow you down
jameson411: things that were easy a few years ago are really hard now
Murf: dodn't wait to start breaking bones to get in a chair
jameson411: I don't want it to
Bruce: I believe most of us have lived an adult life of compromises.
Murf: I'd rather had KD than ALS
jameson411: I went to Paris last summer, must've walked 10 miles in a few days
jameson411: true that Murf
jameson411: and then i drove across country with my dog and daughter
Butch: I would love to be able to walk 10 miles.
Murf: 10 ft would be nice
Bruce: We have had to learn how to adjust our lifestyle around our declining capabilities without negatively impacting our quality of life (hopefully).
Murf: there is so much to do and so little time
Bruce: James, I forgot about you telling us about your trip across country. What an adventure.
Butch: One thing good with this chat is that we have learned to share experiences we have had over the years. Some good some not so good.
MikeG: and everything takes twice as long as it used to...
Murf: I was going to the gun show today (we can still do that)
Bruce: Some ugly
jameson411: It was a memorable trip. What a beautiful country
Butch: The only thing I shoot off is my mouth.LOL
Murf: which one?
jameson411: Not many gun shows in CT
Murf: which country
jameson411: I drove through TX
jameson411: kinda flat
Murf: The best!!
jameson411: and lots of cows
MikeG: Big Bend isn't flat...
Murf: not in the "hill country" around Austin
Bruce: Everyone that has driven through Texas remembers the winds and the hours of nothingness in the panhandle...
jameson411: I only went throught the pan handle part
Butch: Bruce--How is Cindy doing?
Murf: you missed TX lol
Murf: come south
Bruce: Austin and San Antonio are nice areas
Murf: you have a place to stay
Bruce: I especially like the river walk
Murf: Katy too
jameson411: someday, when I'm ready for a swim :-)
jameson411: ty Murf
Murf: init is always open
Bruce: What is the latest on your pool Murray
Murf: kan't type worth poop today
Bruce: Thanks for the pictures by the way
jameson411: Same for ya'll, but you'll have to sleep on a couch as my home is very humble
Murf: 90 deg clear as a bell and felt good last night
Bruce: What kind of a lift did you install at the pool?
Murf: I float a lot ... fells great on the legs
Butch: Do you have much trouble getting in or out of the pool, Murf/
jameson411: I need to start saving money for all of the "lift" equipment I'm going to need some day
Murf: I pull up to it in my chair, move my butt to the copping ... swing my legs over and in i go
jameson411: chairs, lifts, aids... It can't be cheap
Bruce: James, use the MDA program. They are a great help.
MikeG: We put a hot tub in - 103 and great for low back pain!
Butch: Ok murf-getting in is easy--how about getting out?
jameson411: nice, I want a hot tub
Murf: getting out I walk up two steps (i'm still in water) sit on the copping an swing my legs over to my chair
Bruce: The MDA also has a loaner locker to help you make decisions on what you need and what might help.
MikeG: do you have low back pain, James?
Murf: Hot tubs are very bad for us
jameson411: only when I shovel several inches of wet snow
Murf: no temp hotter than 104
MikeG: we keep it at 102 - 103
Murf: I tried that in Borneo a few yrs ago and couldn't get out
jameson411: The hot hot tub, is it a breathing thing?
jameson411: why not over 104
MikeG: I wish I could stay in it all day but 15 mins is all I can take at one time.
Murf: your legs will go to rubber ..... get it?
Bruce: It is my understanding that the muscles relax too much ... is that Murray?
Bruce: I use to use a hot tub and found the same problem Murray mentioned.
Murf: I had to roll out and lie on the floor for about 1/2 hr
Bruce: It feel good, however
Murf: to cool down
Murf: oh ya , you don't want to get out
MikeG: we tried it at 105 and got the same results you're talking about.
Murf: thats the trouble
Butch: I hope the BOD meeting is better attended than the chat today.
MikeG: that's why we keep it at 102/103 now.
Bruce: I have the same problem when I swim in very warm water. I love the bouyancy and tend to over-do. Then I can't get out of the pool afterwards.
Murf: I can't remember where I heard 104 but it seems to be the majic number
MikeG: When I've had enough I get up on the bench seat and cool off before getting all the out.
Murf: I never thought of that //2
Bruce: Ron, did you use your pool this summer
MikeG: that seems to be about right Mufr.
Butch: Not much at all.
Murf: A regular pool would need a lift. is that what you have Ron?
Bruce: James, I am sure glad you joined us today.
jameson411: Me too
Murf: no kidding
Bruce: Do you still exercise, James?
jameson411: Not very much.
MikeG: now we know who puts the chats on their calendar as a recurring event...
jameson411: walks around the park
jameson411: My wife and I have decided to start doing more
jameson411: maybe it will slow the progress of sympotoms
Butch: No Lift..MY pool is an above ground, about 4 and a half feet deep. Great for running in the water.
Murf: do not over do it but just do it
Bruce: It really helps. You should consider some type of regular exercise program to keep the muscles stimulated. Those motor neurons need to keep firing.
Murf: I need a valve job
Bruce: Years ago, they warned us not to exercise. Today they encourage exercise, but as Murray said, "Don't over do it."
jameson411: I just looked at the BOD part of the KD site... you're all hear (except Terry)
Bruce: You will know when you did to much and then just listen to your body in the future.
Murf: ask a question
Bruce: John, Ed, and Paul are also missing, but will join us in a half an hour or so.
MikeG: yeah, when you shovel too much snow!
Murf: you'll never get a better op
jameson411: Some of my questions are of a sensitive nature :-)
jameson411: not sure I want them published
Butch: Good chatting with you all again today. I must go for now so, stay healthy till next we chat. Bye for now.
jameson411: Bye Butch
Murf: ya I got to look at some notes. take care
Murf: stay on your feet all
Butch has left the room.
Murf has left the room.
MikeG: me too - have a good one James and be careful. Later
jameson411: tyEND CHAT