Kennedy's Disease Association

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"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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Kennedy's Disease Chat Transcript  02-16-2008

Topic:  Open Forum

Host: Bruce Gaughran


BEGIN CHAT

 

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: nice

jameson411: warmish, sunny

jameson411: warmish = above freezing

Murf: warm and fuzzy all over the US today

MikeG: heatwave!

Murf: :-)

Butch: Sunny and cold in PA. 27 deg right now.

Bruce: Above freezing is good

Murf: oh

Bruce: Ron, did you have any  of that NorEaster in January

Murf: burrrrr

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!

Butch: LOL

jameson411: time to hire a plow

Murf: Weaser is out of town

MikeG: RIGHT!

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

Murf: //2

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: water

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/

jameson411: ?

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

Butch: Right.

Murf: but he was standing without a cane

Murf: so legs were good

Murf: werd

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

Murf: ?

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

jameson411: lol

Murf: lol

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: 34

jameson411: too young for this

jameson411: :-)

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

jameson411: lol

Murf: that was when this all started

Butch: I'm almost twice that age.

Murf: LOL

Bruce: Ron and I are the ancient ones in this group

Murf: only 52 here

jameson411: that is ancient.... sry Murf

jameson411: ;-)

Murf: lol

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

jameson411: hopefully

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).

jameson411: ya

Murf: lol

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

jameson411: lol

Murf: which country

Murf: lol

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?

jameson411: yep

MikeG: yup

Murf: you missed TX lol

jameson411: oh

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

Murf: invite

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: Great!

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

MikeG: Y?

jameson411: :-)

Murf: no temp hotter than 104

MikeG: :)

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?

Murf: lol

Murf: yup

jameson411: oh

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

Murf: magic

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.

jameson411: Yes.

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)

MikeG: :)

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

Bruce: You can send sensitive questions to me at This email address is being protected from spambots. You need JavaScript enabled to view it.

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: l8r

jameson411: ty

END CHAT