Kennedy's Disease Association

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Kennedy's Disease Chat Transcript  09-1-2007

Topic:  A Question of Balance

Host: Mike Goynes



MikeG: good morning all...

norminstormin: good morning

TerryW: Hi Mike,  I did not think I would be able to make it today but our visitor is still sleeping LOL

JoeK entered the room.

MikeG: visitor?

TerryW: Hi Joe

MikeG: hi Joe

TerryW: Susannes Dad

MikeG: oh

TerryW: up for weekend

JoeK: Goodmorning from North Carolina

MikeG: I'd be sleeping too oat 7:30

TerryW: am usually up by 6:30

TerryW: in bed by 8:30

MikeG: where in NC, Joe?

MikeG: me too

JoeK: Greensboro and Highlands

TerryW: I may only be in chat for part of the morning session today

Butch entered the room.

MikeG: Great - Greensboro is probably beautiful this time of year.  I loved to go driving on the Parkway near Ashville when we lived in Greenville, SC.

Butch: Good morning guys. How are you all doing?

MikeG: ok, Terry - I should be able to cover the entire chat - nothing planned until later today.

MikeG: Hi Butch - doing fine here in Fla.

Gary_KS entered the room.

MikeG: Morning Gary

TerryW has left the room.

Gary_KS: Good morning! Gary Uchiyama ffrom Kansas City. It is a nice day here.

Butch: Hi Gary--guess you guys are still having the heat.

MikeG: We could use some of that rain that you guys had over here in Florida - still bone dry here.

norminstormin: nice day here too starting to get cool though

Gary_KS: Yes, it is still hot weather here, Butch.

MikeG: how cold is it up there now?

Butch: My brother-in-law lives in St. Louis so I know you are having similar weather.

norminstormin: 12 degrees f

JoeK: Mike-- Highlands elevation is 4181 feet and most of the time it is cooler then Ashville

emeyerth entered the room.

emeyerth: good morning group!

Butch: JoeK where are you from?

MikeG: Well this chat is about Balance - how does that affect you in your life?  Does anyone have a solution - other than staying seated all the time?

MikeG: Morning Ed.

jameson411 entered the room.

MikeG: how's the training going?

emeyerth: Mike, just got home from  a quick run with Sean

emeyerth: Very well, actually

JoeK: Greensboro, NC and Highlands,NC

MikeG: kool!

emeyerth: I am feeling quite good

Butch: Ed--sure admire you being able to RUN.

MikeG: amazing!

MikeG: I can't run 5 feet!

emeyerth: It has nothing to do with me - I am just a late bloomer (or should I say un-bloomer)

jameson411: I can manage 5 feet, on a good day :-)

MikeG: I guess you don't have much problem with balance while you're running...

Michael17860 entered the room.

Michael17860: Hi ALl

MikeG: Hi Mike

emeyerth: I have always thought that I was a bit clumsy

Michael17860: How  is everyone today?

emeyerth: and I do trip a lot, so I am especially careful when going up curbs and places where the pavement height is changing

Butch: Balance--This is a good topic. We all handle falls and being off balance in our daily lives.

emeyerth: I generally do not lift my feet up enough when I run

Murf entered the room.

MikeG: is that your secret or problem?

Murf: Morning all

emeyerth: problem

MikeG: Morning Murray!

Murf: hey Mike

Butch: Hi Murf--How are you today?

Michael17860: Hi Murf.

emeyerth: morning, Murray

MikeG: how's your balance today?

Murf: Great Ron, I'm pouring concrete this morning finally

Butch: Good news.

Murf: What balance?

Murf: //2

TerryW entered the room.

Murf: Morning Terry

emeyerth: Morning Terry

MikeG: welcome back Terry

Butch: Hi Terry.

MikeG: connection problems?

TerryW: I got kicked off the other PC, wifw had to do finances onit LoL

TerryW: on laptop now

MikeG: :)

Murf: Hey Norman, how's the weather up there?

norminstormin: little bit cool

norminstormin: had frost this morning

MikeG: wow!

TerryW: so who hates to have to bend over to pick up things?

MikeG: we woke up to 80

Murf: summer is over for you and I'm watching the Hurricanes

TerryW: I wobble like a weeble

MikeG: don't mention those

norminstormin: me too when i bend down

TerryW: Ihave to hold on to something

jameson411: luckly, I can still pick up things with no problems....

Murf: I can't bend over with out going down

MikeG: yes, me too - especially when I bend over

norminstormin: i have to hold onto something or i,ll go down too

Murf: I have a few of those grab things located around the house

TerryW: It is frustrating

MikeG: have to hold on to the floor :)

jameson411: The only time I loose balance is sometimes when I change direction... the little muscles don't respond very well.

jameson411: but no big falls yet

Butch: I wouldn't mind a fall once in a while if I could get up by myself. Hate to ask for help..

Murf: Had another in the garage two weeks ago

MikeG: yes, that's what my problem is - I'm not getting the sensory signals to tell me where I am.

TerryW: i hear that mike

Murf: only scraped my knee

Murf: Lucky again

MikeG: me tto Butch

TerryW: same here butch

MikeG: falling is not fun!

Murf: I use my chair more to avoid the fgall

Sammy entered the room.

TerryW: It is hard to get up if people dontknow how to liftus. they think they can just grab our armsand lift. NOT

Murf: fall

emeyerth: Speaking of sensory info, I have almost no feeling on the soles of  my feet - they are always numb and cold

TerryW: sorry i type terrible on a laptop

MikeG: I think if anyone of us will try standing up and just closing your eyes, you'll see the 'balance' problem manifest itself.

Sammy: morning folks

TerryW: Emeyerth, i still have feeling but they are always cold even in summer

Murf: Hi Sammy

Michael17860: Hi Sammy

Butch: Terry you are right--The belt lift is the only way someone can really help me.

TerryW: Mike,  or try to look thru a camer eyepiece and take a pic while standing

jameson411: what is the belt lift?

Murf: We always have to wear one

MikeG: and then - while you're feeling unbalanced - just touch tomething.  The balance becomes fine again.

TerryW: you llose all senseof balance

emeyerth: I have even worn socks to bed to keep my feet warm, my wife thinks I am crazy and she is always telling me that it is so hot in the house

TerryW: me to ed

TerryW: I tuck my PJ bottoms in my socks

TerryW: looks funny

Michael17860: You can always use the belt loop if you do not wear a belt.

Murf: when someone grabs the back of your belt to lift you

jameson411: oh

Butch: Jameson--When someone can help lift you by holding onto your belt.

Murf: Sometimes you get a weggy

jameson411: //10

Murf: but that's the price we pay

Michael17860: Thats the fun part Murf.

Murf: //2

jameson411: luckly there are all the benifits.... :-)

jameson411: like handicap parking.

jameson411: someday, I'll get a sticker.

TerryW: I was at taco bell the other day and a poor old fell on her face as she tripped while trying to get up the curb, her face hit the cement. people looked funny at me because id did not help her up, I felt so bad

MikeG: has anyone been successful in using the Liberty Cane to get up?

Murf: I needed that last night but healthy people have stickers now

TerryW: old lady

TerryW: I was just getting out of my car in the Handicapp spot

TerryW: All i could do was help her sit up

TerryW: others then came to help

MikeG: didn't anyone else try to help her?

TerryW: I explained

TerryW: yes but I was closest when she went down

MikeG: well, you shouldn't feel bad about that.

TerryW: I felt helpless

Michael17860: Terry at least you did not just walk away.

TerryW: yeah

MikeG: that's right

jameson411: KD is a lifes lesson on humility.

TerryW: sure is

jameson411: we have no choice but to depend on others.

Murf: yup

TerryW: The one thing is from the incident is I understood the way she felt when it happened

TerryW: I know she felt embarrased

Murf: Me too

TerryW: I told her I fall all the time

TerryW: but noton concrete

Murf: falling in public is embarrasing

TerryW: not on

MikeG: trying to get up is more embarrasing...

jameson411: other people understand when old people trip or fall or take their time going up the stairs.  But for a middle aged man to struggle with a few stairs usually draws comments and stares.

TerryW: how does everyone do with shopping for groceries alone when they need a heavy object?

fl-don entered the room.

Michael17860: I went out and got some really good knee and elbow pads that I wear around the house if I any doing thing that I might fall.

TerryW: like water or dog food

jameson411: Most people in my life don't know about the KD yet.

MikeG: morning Don

jameson411: I can't hide it anymore

fl-don: hi all, just back from pool exercise

Murf: I get people to help Terry Its not worth trying to do it yourself

jameson411: good idea Michael

norminstormin: i always fall over when i feed mycat

Butch: Jameson--don't try to hide it. Share info with others.

Murf: Hey Don How was it?

MikeG: me too - I'm not ashamed to ask for help.

TerryW: Ihave fallen on my cat LOL

fl-don: pool water feels great.  never fall

norminstormin: i did once too

jameson411: I'm going to get a YMCA membership.

jameson411: I want to swim again

Murf: Surprise the cat?

fl-don: saving my money for the conference in vegas

fl-don: and poker

Sammy: Not a balance question - sorry, I joined late. Anyone had a series of flobotomys? ( I asked for leech treatment to let the blood, but it seems things have progressed in medicine...) Did you notice any changes with Kennedy's symptoms with the flobotomys? The flobotomy's were for another adventure of mine that got identified after the Kennedys.

norminstormin: sure did

MikeG: that's one way to overcome the balance problem, Don.

fl-don: yeppers

TerryW: not me sammy

jameson411: ?

Murf: Don - what exercises do you do? I just installed a pool

jameson411: flobotomy?

fl-don: i walk most every day for 2 hours in a large exercise pool heated to 88 degrees.  i push the water with my arms .  nothing too strenuous per the doc

jameson411: wow, 2 hrs.

jameson411: you must have some serious pruning

Murf: 88 deg was that temp recommended?

TerryW: I need to go everyone.  chat with you all again soon

fl-don: water takes the weight off my legs

jameson411: bye Terry

Sammy: Flobotomys for hemacromatosis. Taking a pint or so every couple weeks for a few sessions to lower ferratin/iron levels. Noticed I had a different set of weak/ sore joints in the early sessions, but it's changed/ improved (still not great) a bit with further blood letting sessions.

Murf: Later Terry

MikeG: cya Terry

TerryW has left the room.

fl-don: cya in vegas terry

Butch: So long Terry--stay healthy.

Murf: Don - did they recommend 88 deg?

MikeG: Wow Sammy, I never heard of that before.

fl-don: arthritic assn recommends temp betwen 83 & 88 for safety

Sammy: me neither. But I hadn't heard a whole lot about Kennedy's a couple years ago...

Murf: ok, I know that too hot will not work. we can't do hot tubs

Michael17860: Sammy I use to give  blood  every two months until I started Avodart. I never noticed any problems.

jameson411: why no hot tubs?

fl-don: any news on the research front?

Murf: They make your legs wabbly

TJ entered the room.

Sammy: Thanks Michael. Was the blood donation a voluntary thing? What's avodart?

MikeG: Morning TJ

Murf: my leggs are wabblly enough

Murf: Morning TJ

Michael17860: Murf I have a hot tub, no problem with it.


fl-don: hot water raises ones blood pressure.  combined with exercise could be dangerous

jameson411: more wabblly than normal ;-)

Murf: Michael17860:  what temp

emeyerth: Don, I have not seen any new scientific papers released in the last couple of weeks dealing with KD


jameson411: ouch

Michael17860: Yes I  was up to almost 8 Gallons. I started donating when I was 18 years old. Avodart is the med. in the clinical trial.

MikeG: yep - you've got to watch over doing it TJ.

Murf: TJ - do I need to come up there?

fl-don: tks em

Michael17860: Murf 102


Gary_KS: Mich, how long have you taken Avodart? Do you feel any improvement or change?

MikeG: TJ, sounds like a case of the shingles...

MikeG: you ever had them?

Murf: Michael17860: ?

TJ: Mike, what are shingles?

Michael17860: this month will be two years. I feel alittle better.

MikeG: Me too Mike - I think it may just be holding me where I was a couple of years ago.

Murf: ok 83 - 102

fl-don: shingles usually in upper extremities if bidy, neck, face, stomach etc.

Michael17860: I also take alot of other things, so it's unsure what is working and  what is not.

Gary_KS: Thank you, Mich.

TJ: Mike G - what are shingles?

MikeG: nerve problems on the surface of the skin.

Barb entered the room.

Butch: Hi Barb.

Murf: Hi Barb

MikeG: Morning Barb

fl-don: shingles is a virus caused by measles.

Michael17860: thing I put on the Roof LOL

Barb: good morning

TJ: Hell, maybe I should ask my Dr. about it, what can you do for it?  Anyone that knows, please tell me!

Butch: LOL

MikeG: how are things in the big D?

Murf: I have trusses

Barb: o.k.

Murf: Almost like shingles but lower

fl-don: does not sound like shingles to me tj

fl-don: maybe syatica

emeyerth: I think that shingles is caused by the virus for chicken pox not measles, but I could be mistaken

Michael17860: that is a woody joke,  Trusses.

fl-don: but i'm not a doc

TJ: What do you think Don?  My neurologist says it's my muscle shrinking, but would it burn like that?

Murf: //11

fl-don: right em, sorry

fl-don: i have no idea

fl-don: sorry

Butch: Mary Lou had a severe case of shingles. She had 4 different pills--anywhere from 10 mg to 200 mg. The 200 mg cost 35 dollars a pill.

Murf: TJ its like growing pain in reverse I have the same thing

fl-don: i would listen to doc

MikeG: A friend of mine had shingles that he fought for months with different kinds of meds... he finally had a eppidural block that stopped the pain - they never came back after that.

TJ: All I know is when I get in my easy chair or bed, any position my leg is in it starts the burning sensation, prickness and goes numb.

fl-don: u going to the picnic at the pool monday mike?

Butch: Hey guys--I must be going for now. Stay healthy till next we chat.

TJ: It could'nt be a blood clot, could it?

fl-don: gotta go gang.  luck 2 everyone.  cya in vegas.  bye

Butch has left the room.

Sammy: TJ - I had descended 25 flights of stairs in fairly short period and legs were totally pooched for around 1 week. I didn't have the prickliness etc. My Dr noted she was not surprised my legs were pooched, the nerves were completely overloaded with my stair adventure...Things returned to my "normal", sluggish state (feeling like I'm walking in sand) after a week or so.

MikeG: If we get back in time - we've got telethon duty from 1 - 3:30...

TJ: It could not be a blood clot could it?  Obvisouly you can tell it's worrying me

fl-don: we doing telethon monday here in tampa.

fl-don has left the room.

TJ: Well, I do over do my walking, that I know!

JoeK has left the room.

Murf: TJ: Sammy thinks you just need to rest too. Why don't you just rest for a week and see

MICH entered the room.

TJ: Sammy, whtcha doing walking 25 flights of stairs?

Murf: Cemet truck is here I got to go

TJ: Good luck Murf

Murf: Stay on your feet people

MikeG: cya Murf

Murf has left the room.

emeyerth: so long, murf

jameson411: I went to the top of Notre Dame and back down a month ago.

Barb: Looks like a lot of you are helping with the Telephon.    Guess I'd better go watch it.

Barb: Bye

jameson411: the next day down a ton of stairs with the Iffel tower.

TJ: Wow, Jameson, thats awesome

Michael17860: How many flights was that Jameson.

jameson411: I was toast for about 2 weeks after that

Barb has left the room.

jameson411: It felt like 1000, not really sure

jameson411: Only went from level 2 to level 1

Sammy: I had been doing OK with 4 or 5 sets of stairs - a fire alarm dictated 25 flights - I had a brain cramp and was thinking back to pre Kennedys days...

jameson411: trying to find less crowded elevator

jameson411: didn't work :-)

MICH: and I can testify that Jameson walked our Gateway mall here in Salt Lake at great speed

MikeG: I don't know about a blood clot TJ, but it sounds like you need to have a neurologist check it out.  May be just poor circulation...

Sammy: Learned a painful lesson to take it easy. Was good speaking to the Dr about the nerve response thing..

emeyerth: I need to go, so long everyone.

jameson411: HEY MICH!

jameson411: yes, it was a great visit.

jameson411: First person I physiclly met that had KD

emeyerth: Mike, Sean took a picture of us to put on the firstgiving web site, I assume it will be up soon!

emeyerth has left the room.

TJ: Yeah, I told him about it and he said it was shrinking muscle.  I know it seems like I have really been going down hill lately.  We are booked for Vegas, hope I can go when its time!

MikeG: If your'e coming to the conference in November you'll meet several hundred of us who have KD.

Sammy: Gotta mosey here folks. Thanks for the chat. Keep well.

jameson411: Not sure that I"ll make it this year.

Sammy has left the room.

MikeG: that good Ed.  I'll take a look.

TJ: You need to Jameson, its going to be awesome

jameson411: Already blew the budget this summer going to France and Yellowstone

jameson411: Trying to do these things while i still have decent mobility

Michael17860: Mike G did you get the web site that I sent you on ACJ-9

MikeG: yes, thanks. Cheap drug huh?

MICH: Sorry to pop in at the last minute... my daughter has to take one of our cars for Labor Day weekend... and I have to take my wife to work with the other right now... you'all have a great weekend

jameson411: l8r MICH

MikeG: same to you Mich

MikeG: take care

TJ: You only live once, so go into debt, its the American way!

jameson411: lol

Michael17860: I wonder why  some of the other researcher dont get some and tye it on there mice?

Michael17860: try

norminstormin: gtg take care allc all

MikeG: I tink that's te next step Mike.

TJ: Hey, Jameson, its like having kids, if you waited till you could afford them, you would never have them

norminstormin has left the room.

Michael17860: I hope so.

jameson411: perhaps.

MikeG: me too

jameson411: I'll have to think about it.

MikeG: looks the the one that will do it.

jameson411: I'm a school teacher and the timing is a bit off.

MikeG: who would have thunk it - curry...

TJ: Come on buddy, it will be great for all of us to see and meet each other!

TJ: What do you teach

MikeG: oh, that's something I never thought about jameson

jameson411: Course, I get 15 sick days per year.

Michael17860: I hope that it does not that forever to get to a trial.

MikeG: there you go!


jameson411: i feel something coming on....

jameson411: :-)

TJ: Now your cooking!  This is only once a year

MikeG: right!

MICH has left the room.

TJ: Has anyone had any luck solicting items for the auction>

jameson411: In some ways, I am a little intimidatd

jameson411: I am still pretty moble and such...

TJ: your lucky

jameson411: not sure I want to see what is in store a few years down the line

Michael17860: See you all later, got to cut grass.

jameson411: to be honest

Michael17860 has left the room.

TJ: Bye

MikeG: I'm going to bring something small and light - like jewlery...

jameson411: I have a piano that no one plays ;-)

Gary_KS: Bye all

TJ: Good Mike,  Jameson you never know what the future holds

jameson411: bye Gary

jameson411: true.

MikeG: Bye Gary

TJ: Bye Gary

jameson411: I am enjoying the moment, ever so thankful for what I have and what I can still do.

Gary_KS has left the room.

TJ: Hey ship it there we'll sell it

MikeG: well, I'm going to save the chat and get out of here - take care everybody.

jameson411: me 2

TJ: Okay, take care and I enjoyed talking to you all

jameson411: good bye gentlmen.  Stay up right... physically and mentally

jameson411 has left the room.

TJ has left the room.