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Kennedy's Disease Chat Transcript 07-21-2007
Topic: Open Forum
Host: Murray Williams
MICH: Good Morning Todd from the windy city
Murf: Morning Todd & Mich
ToddAllen: Hi Mich! Can you tell me your full name? It's been awhile since I''ve chatted and I don't recall all the nicknames.
MICH: I'm Rick from Utah, but born in Mich, but my parents were from Illionois
MICH: Good morning Murf
Murf: Todd - it been at least a year
ToddAllen: Murf, yeah it's been a while. I should have checked in sooner.
ToddAllen: I've been experiencing some fast deterioration lately. I'm hopeful that one of these trials has positive news for us.
Murf: I'm not sure if Nick will be here today, I've not been able to contact him
ToddAllen: Do you know much about the current status on the Dutasteride trial?
Murf: He has joined Johnson & Johnson company
Murf: I don't know if I'm on the med or sugar
Murf: We are one year into it and I just had my one year check
ToddAllen: How have you been doing? Better, worse, holding steady?
MICH: Todd, deterioration seems excelerate from time to time, I'm 60, how old are you?
Murf: I feel like I've gone down some but tests show no real decline
ToddAllen: I'm 42. Up until last year my deterioration was slow and steady.
Murf: I think I was about 46 when I had a very noticeable decline
ToddAllen: But in the last year my left arm went numb and my left hand has become emaciated and somewhat useless.
ToddAllen: My tongue went numb after having my wisdom teeth pulled last year and has never recovered.
MICH: I was 45 when things started to happen 15 years ago
Murf: That's the first I've heard of that happening
Dart! entered the room.
ToddAllen: And my left foot just started going numb and is causing me to stumble a lot.
Murf: Morning Dart
ToddAllen: Hi dart.
Murf: I don't really go numb unless I sleep on my arm
Murf: But arms and legs are very weak
Dart!: H'lo Everyone
Murf: I spend most of my time in a chair now
ToddAllen: I thought the numbness might be caused by lack of blood flow or some such but have tried many different sleeping positions, etc. and nothing has made a difference.
ToddAllen: I'm still active but everything is becoming more challenging.
Murf: I actually have three: one for work in my car. one at home for around the house and one in the garage to take the dog for a walk
ToddAllen: A couple days ago I took a fall while gardening and stupidly put out my arm to catch myself because I didn't want to smash the tomatoes I was holding.
Bruce entered the room.
Bruce: Morning everyone
Murf: I can't garden anymore
Dart!: Three chairs - one butt!!
Murf: Morning Bruce
MICH: Todd, when I think of Chicago, I think of my relatives who went to Northwestern and boot camp at Great Lakes, have you ever been associated with either?
ToddAllen: Still smashd the tomatoes and I sprained my already impaired left hand making it mostly worthless now.
Murf: Dart - It saves me moving the chairs
Murf: which is not eary around here
Murf: How do you manage in the winter?
Murf: not easy around here
ToddAllen: Northwestern university or the hospital? I've visited Northwestern U to see speakers there and when I broke my leg in two places a couple years ago in a bicycle accident I had it set and cast at Northwestern hospital.
MikeG entered the room.
Dart!: Of course, Murf - I jest!! It makes perfect sense to have your chair location set up to be the most convenient.
MikeG: Morning everybody!
Murf: Insurance pays for one every 5 yrs - use it
Murf: Morning Mike
Dart!: What on earth are you trying to do with yourself, Todd - set a record?
MikeG: Hi Murf
MICH: Todd, my Grandfather was a football player at Northwestern and my mom got her 1st degree there
Bruce: Terry Waite and I tried the new chat room format (using Flash instead of Java) this last week. I really like it. We found several bugs in the software, however, so Terry went back to Bummer and filed a report. Once they are fixed, we will convert over to the new format. Faster, cleaner, etc.
Murf: Oh good faster - I can't keep up now //2
kellyC_ entered the room.
Murf: Morning Kelly
MikeG: That sounds great Bruce.
Bruce: The interface is cleaner also.
ToddAllen: Winter is becoming a b*tch. I have to be very careful to keep my hands warm or they go numb. I've had panicked moments trying to undo my fly to take a pee after getting chilled outdoors and the strain of trying to use my chilled fingers makes the strain of trying to hold my bladder much worse. Can't take to much differing stresses at once.
kellyC_: good morning murf
Murf: you may have to move south Todd
jameson411 entered the room.
Bruce: Todd, I can understand. The loss of the use of hands is frustrating.
Murf: Hey James
Gary_KS entered the room.
ToddAllen: Kudos to who set up the new (for me...) chat system. Much better than the old one...
Murf: Hey Gary
emeyerth entered the room.
jameson411: greetings from CT
Bruce: Murray, will Nick be joining us this morning?
Murf: Hey Ed
Dart!: Three months of our winter spent on the south sounds good.
emeyerth: hello everyone
Gary_KS: Good morning, all. Gary Uchiyama joined.
MikeG: Hi Ed
jameson411: hello Gary
Murf: I lost contact but the last e-mail I got from him he said he would
MICH: Todd, I can relate, same thing happened to me in the winter, but so cold couldn't get off the pot so crawled to the public restroom door to have to strangers pick me up
Murf: Don't hold your breath he has a new job at J & J and big responsibilities
ToddAllen: I've taken to wearing oversize mittens and use the iron oxide chemical hand warmers inside them. Usually gets me by although I do have to pull my hands out to do many tasks like use my keys. Have to be quick which is tough when one is clumsy.
Bruce: Sometime we should all get together to write our memoirs ... lifes most embarassing moments.
MikeG: Todd, I have had the same experience. Just got to keep the hands warm. Move to Florida...
Murf: Bruce - would be funnier that Americas funniest moments!
Dart!: How embarassing, Mich - that mmust be terrible for you, and ALL that have to deal with this!!
jameson411: last winter, I was at an outdoor sporting event. Very cold for about 2 hrs. When we got back to the car, I could barely turn the key.
Murf: I used to keep track of all the worlds cities I fell in
ToddAllen: Mich, damn that sounds rough. It's tough to keep ones dignity at times with this condition. I've had a couple falls in public where I just barely had the strength to get myself back up. Fell in the grocery store last month and tried to pull myself up by using the shelves and almost caused them to tip...
jameson411: What are some of the walking devises you guys use
MICH: Dart, I just avoid public bathrooms that aren't very accessible, especially in the winter
Chuck entered the room.
Dart!: Good thinking, Mich, but when you gotta go, you gotta go!!
Duane entered the room.
MikeG: It's even worse when people try to help you get up and can't pick you up because your arms can't hold up.
Chuck has left the room.
Chuck entered the room.
ToddAllen: Hi Ed! Are you still running?
Bruce: I remember many falls while traveling on business. Twice, while in public, people looked at me like I was drunk or on drugs because I did one of those slowly losing balance and falling to the pavement. People walked by me. It was interesting and frustrating.
emeyerth: Yes, so far so this summer
emeyerth: sof ar so good ...
jameson411: i can't run anymore. at the beginning of the summewr, I was able to do a clumsy jog. Now, i can't get both feet off the ground at the same time... unless I lie down.
Murf: Last time I fell travelling was on the steps of the Shell Oil building in Beijing
jameson411: I went to Paris this summer. I managed to say upright the whole time :-)
Murf: My Chinease customer caught me
MikeG: Same here - used to do 10Ks once a month. Now I'm doing good to to 10 feet!
jameson411: nice of them to be there.
ToddAllen: I can sort of barely run a few blocks but my gait is awkward and afterwards I get quite stumbly. I also have been have a lot of trouble with my ankles so I'm afraid to push it as much anymore. I'm still biking ok but have mostly gone to recumbents as my wrists & butt get sore really quick on standard bikes.
Murf: James - I fell there before //2
MICH: Jameson, I was a swimmer in Junior High, but I've gone from the breath stroke to just a scissors kick
Murf: Last time I fell was Jan in the Lexus dealership front door. I broke my ankle
jameson411: I was a swimmer too
jameson411: I want to start again.
Murf: I'm putting in a pool as we speak
jameson411: Murf, you should stop walking
kellyC_: I thought Dr Pospero was with us this morning?
Bruce: Murray, did they give you a car afterwards to avoid a lawsuit?
Murf: Thats what the three chairs are for //1
MikeG: Todd, how is that recumbent as far as baloance goes?
Dart!: At least, Murf, you fall in the swankiest places?
ToddAllen: Murf, sorry to hear you broke your ankle. I hope it heals well. My ankles have given me a lot of trouble but I'm grateful I haven't actually broken one yet.
Murf: I got a GX470 but I had to pay for it ... good deal on the trade though
jameson411: I must've walked 10 miles while in Paris. I pushed my body hard.
Murf: Dart I do but in London right in front of a cab I thought it was all over
jameson411: anyone every notice a permant loss of muscle strength after pushing your body?
Murf: Was almost hit xing the road in Moscow too
Bruce: Kelly, Murray said that Nick is in the middle of changing jobs (going to Johnson and Johnson). He planned on being on today, but something might have come up.
ToddAllen: Dart, recumbents with a fairly upright seat are easy to balance. But I find I am much more comfortable riding with a really laid back seat.
kellyC_: Thanks bruce.!
Murf: James I have to reast for days
Bruce: Jameson, no, not permanent, but it always wiped me out for a few days.
jameson411: I did rest after paris, but I find stairs much more difficult now than before the trip.
ToddAllen: But with the really laid back seat if I get tired I have a hard time starting/stopping and have tipped over when really tired. I'm eventually going to switch to a recumbent trike.
Murf: If I don't then it adds up to a week or two of rest
Bruce: Nick might have had to change computers when he switched jobs and now is having trouble getting on-line, signing in, etc.
Murf: Jamies - I can't do one stair now
kellyC_: at times I can't hold a cup of coffee with my left hand! mucscle weakness!
Murf: I often have to use two hands for the coffee pot
kellyC_: sharp pain in the top of my left hand, when moving my wrist?it only happens once in awhile.
Murf: I can't wait to get older !!
jameson411: If this is how I am now, what will I be like when i'm 64?
Murf: Kelly check it out now while you still heal ok
ToddAllen: Jameson411, I strained my left shoulder moving furniture last year and it was immediately after when I started getting the left arm numbness and then the wasting of my hand. I think I might have damaged a nerve doing the work. Then again it might just be coincidence.
Bruce: Terry Waite is having fun right now! Their horse just gave birth to a colt and they brought home to puppies. He says he can't keep up with all the chores and duties around these new critters.
kellyC_: ok murf thanks
MICH: Jameson, I'm 60, how old are you?
Murf: Jamies I wont have to worry any more
jameson411: I have lost significant strength in the past year.
Bruce: Ohhh, to be 34 again ...
jameson411: At this rate, I'll be in a wheel chair by the time I'm 36
Murf: I'm 51 and will be surprised if im still hear in 10 yrs . hope so but surprised
jameson411: your sense of humor will keep you alive for another 30 Murf
Murf: Life does not end when you get in a chair
jameson411: good point
jameson411: I'm going on a solo cross country trip in a few days. Doing while I'm still able.... just me and my dog. Any recomendations?
Murf: Thats 100% correct James and what keeps me going
Dart!: Yeah, Murf - RIGHT!! But that is really bad news that y'all tell. Sorry about that!
MICH: Omen to a sense of humor and even part-time work or a hobby
Bruce: There are a bunch of us older guys around. I am sixty, my brother with KD is 73 and doing pretty well. We still have some people on chats occasionally that are in the 70's.
jameson411: besides, "don't fall in all the state capitals"
Murf: James stop in Texas for a swim!!
jameson411: I'll be driving through. Where are ya?
jameson411: I'm going to Carlsbad NM
ToddAllen: Jameson, I was doing quite well at 34. Skiing, hanggliding, running, etc. But at 42 I can't do any of those things anymore. I wonder if I accelerated my deterioration by pushing too hard. But then again I know the deterioration is fairly inevitable regardless (until we have viable treatments) so I'm glad I did what I could while I could.
Murf: Katy 17 miles west of Houston
Murf: Mark it on your map
Bruce: Todd, I agree. I pushed myself hard in those younger years and don't regret it.
MICH: Jameson, if you go thru Salt Lake City stop and see me at the Planetarium (or was that sanitarium?)
Murf: Bruce - Thats right ... see the world while you can!!
jameson411: That is my destination Mich
Bruce: I took some falls, was banged up occasionally, but I still remember the joy of accomplishing those events when others struggled also that were in good health.,
MikeG: Murf, my cousin is in Katy too. 77450
emeyerth: Todd, I told myself that I would not take easy after I was diagnosed
jameson411: In Salt lake city, I'm picking up my Wife and niece and from there renting an RV to venture into Yellowstone for a week.
Murf: Mike I'm 77494
Murf: Has he been diagnoesed?
Murf: Be right back
MikeG: It's a she - and no, she has all girls too...
ToddAllen: Jameson, my only recommendation is that you take extra care as you get tired. I've caused myself several injuries while fatigued that wouldn't have happened with a bit more caution. It kind of sneaks up on you. Something that you've done for years with ease even when tired like carrying a basket of laundry down the stairs suddenly becomes just a bit too much. Avoid the hair that breaks the camel's back...
jameson411: thanks Todd. I'll be careful.
MikeG: Avoid stairs!
Bruce: Todd, great point! THe injuries always came after I was tired ... pushed too hard ... and the knees became like rubber.
jameson411: i don't want to break something when I'm in the middle of nowwhere
jameson411: ok Mich.
kellyC_: yup for sure after awhile of doing something strenous our legs and arms become weak. (Rubbery)...
Bruce: While in the 40's, I was climbing and hiking all over Mt. Ranier. Going up wasn't the problem. Coming down afterwards when I was tired was the issue. Several times I rolled down a portion of the trail, but fortunately never was injured.
kellyC_: as for me I'am still in the Muscle spasms stage severe ones all over my body!
Bruce: Kelly, those eventually went away for me and now I just have deep muscle aches.
ToddAllen: Ed, after push hard do you suffer much cramping or spasms. I have had times where I did ok during the day (like a round trip bicycle ride to Milwaukee from Chicago) but then was in agony the next day as whole body, but especially my legs just had mind blowing muscle cramps.
MikeG: So what do you guys over 60 do for exercise? I know we need to do something but it also needs to be something that won't hurt us. Anybody go to the gym to workout?
Murf: I'm back
kellyC_: Spending time in the swimming pool sure helps me with the muscles etc...
emeyerth: Todd, not really - I get postional cramps all the time. After a very long run, my leg muscle do undulate, looks like ripples of muscle twitches
Bruce: Mike, I exercise every day. One day is light exercise with plenty of repetitions and the next is using weights. I spend time on leg exercises and back, shoulder, arms, etc.
kellyC_: yeah i heard that before Bruce?
kellyC_: as we progress our muscle spasms dissapear?
emeyerth: I generally find that I feel worse when I exercise after a day of inactivity, so I try to do something every day
kellyC_: lateron in the Disease?
Bruce: I have two grab bars in the bathroom that I use for my standing/leg exercises.
Murf: Kelly I hope to find out ... those endless pool installers just got here
jameson411: Murf, i looked on a map. Even though I'm driving through Tx, Houston is 2 days out of my way.
Bruce: Ed, the same with me. If I skip a day of exercise, I have more pain and difficulty of movement. Doing something every day makes a big difference for me.
kellyC_: yes Murf! I'am quite sure you'll like it
jameson411: its a big state....
Murf: Keep it in mind for later
MikeG: Bruce, how long do you exercise each day?
Bruce: Light days about fifteen to twenty minutes. On the heavy days, about forty-fifty.
Bruce: Some days I am stronger than others and I will vary the workout (number of reps and weight) based upon how I feel.
Murf: I would have to install an overhead crane if I exersised that long
Bruce: I believe in the old saying, "if you don't use it, you will lose it."
ToddAllen: Ed, I often get the rythmic waves of muscle twitching which is mildly annoying but sometimes I get full on spasms/cramps. I still don't know exactly what triggers the worse cramping. I have noticed though that prolonged holding a muscle in mild contraction is much more likely to result in cramping then alternating hard pull and complete relaxation. But once the cramping starts voluntary relaxation is impossible. Just have to wait it out.
MikeG: I was going to the gym pretty regularly but got tennis elbow from the rowing machines - now I can barely do anythihng since it was my dominant arm...
MikeG: I believe that too Bruce.
MikeG: Exercise is essential to keeping your strength up.
Bruce: The key to my exercises is the number of muscle groups I focus on. Feet, toes, ankles, calfs, knees, thighs (quads), back, neck, shoulders, arms, wrists, hands, fingers.
emeyerth: Todd, so far, I do not get anything that serious. After very, very long runs, I would get leg cramps if I just sat down and did not walk a round a bit - but I an sure that this doesn't happen to 'normal' people as well.
Murf: I getting tired just reading this
emeyerth: I mean, it DOES happen to normal people
Bruce: Keep those motor neurons firing ...
kellyC_: lol thats rite bruce!//2
Murf: I think mine ran out of bullets
MICH: At 60 going on 61 this month...part-time work... the challenge of getting out the door and on a bus and commuter train and the adenaline I get helping customers at the planetarium are what I like most... this ignores my legs though as I go in a power chair outside the house... I need to get back to a little swimming but getting in and out and ready is a chore
emeyerth: I have also found that weight training seems to help me in my running
Bruce: I have noticed a significant reduction in the size of my shoulders, arms, and hands recently.
ToddAllen: I let my drivers license expire a few years ago to force myself to keep walking/biking every day. Just getting myself around is my main exercise. There are days where I wouldn't feel like doing anything and
ToddAllen: if I was still driving I wouldn't get the regular daily exercise that I do.
Bruce: I find it fascinating that many of us exercise in different ways. It doesn't matter what you do as long as you do ...
ToddAllen: Ed, the worst cramps for me come in the evening after I have been inactive for a couple hours or more after a day of much more strenuous activity then normal.
MICH: Did someone say what happened to our guest speaker?
Murf: Nick switched jobs July first
ToddAllen: Has anyone started taking any of the trialed drugs outside of a trial yet?
Murf: Director of some research dept at Johnson & Johnson
Bruce: Todd, I am certain a few are because I received emails from some people asking if they could/should start taking it.
Bruce: We encourage everyone to give the trial a little more time and wait for some results.
ToddAllen: Dutasteride (Avodart) is not too difficult to come by, but has there been any significant evidence that it is more helpful than harmful?
emeyerth: I think my cousin is taking dutasteride,not sure he has seen any results
Murf: Not recommended Todd but I don't think so. lots are looking for that magic pill
Bruce: We do not know dosage, frequency, side effects, etc.
Bruce: Since no one knows whether they are taking the placebo or the real thing, you really don't know.
emeyerth: The reported side efffects are fairly mild, dutasteride may cause effects similar to lack of testerone
MICH: Speaking of research, I enjoyed that article on our Forum "don't use them, don't lose them...
Bruce: Dr. Fischbeck did say that if the results were positive and side effects were minimal, that they might announce something earlier (after October time frame).
Murf: for normal people but what about us?
MikeG: Todd, I've been taking Avodart for over 2 years now and haven't seen in improvement in anything except peeing and hair growth.
Murf: Conference time
Murf: Mike - did you have a "growning problem?
ToddAllen: I'm not expcting magic, but if there was anything that would even had a good shot of slowing the deterioration a little it I'd not like to look back in hindsight and wish I hadn't waited so long to start.
emeyerth: Murf, there is no reason to believe that we would be affected worse than normal but the NIH study will help determine this
kellyC_: Well got to go all! keep healthy be strong and be Postive! see ta all next time.
MikeG: I did
kellyC_ has left the room.
jameson411: bye kelly
MikeG: a going problem too...
ToddAllen: MikeG, well those are the approved uses. Hair growth and peeing. I'm balding and don't pee so well so perhaps I should start... Then again neither of those things matters as much to me as eventually losing the ability to walk..
Murf: I'm doing this fro my brothers kids I really think its to late for this old koot.
emeyerth: Murf, Mike, Bruce, I have to leave now and will not be able to make the meeting today. I did want to say, though, that Sean and I are thinking of due a series of races around austin as a fundraiser.
Bruce: I think we need to remain positive about this research. They continue to get closer and no one is giving up on the research side. I want to believe that if not in my time, in my childrens time.
Murf: Take care ED
ToddAllen: Bye kelly.
Bruce: Sounds great, Ed
MikeG: Thanks, Ed. See you later.
ToddAllen: Bye Ed.
emeyerth: I will email the details - it does not start till October and thought that we could try to advertise it
emeyerth: See you all later
Bruce: I have to run also so I can take my dog out for another walk before the board meeting. Stay upright, healthy and happy everyone.
emeyerth has left the room.
Gary_KS has left the room.
Bruce has left the room.
Murf: Bruce I agree and I'm staying + and the humor as long as I can. I never give up without a fight and not going to start now
ToddAllen: I think I'm going to get going too. Take care all...
Murf: Not going to fool myself either
MikeG: Todd, that is very true. I find it interesting that you are balding... no one that has KD seems to have that problem. We were noticing that at the last conference in Atlanta.
Gary_KS entered the room.
MICH: That Forum article I was talking about said centers around the world were doing an antibody trial regarding myostatin blockers, does anyone know what their results were?
Gary_KS: I got back.
Murf: Hey Gary
ToddAllen: I'm not entirely balding, just losing the front and middle. The flanks are holding.
MikeG: oh, that god
MikeG: I haven't noticed anyone that is totally bald with KD.
Murf: Cool you need to talk to Kurt at the conference in Vegas this yr about that
Murf: Are you coming Todd?
ToddAllen: Elevated testosterone runs in my family - affects my mom, my sister and myself. Think that likely has some effect on the hair.
Murf: Thats what Dr. Merry & others were talking about last yr
Duane has left the room.
ToddAllen: Think that might also be why my mom has some KD symptoms although not as pronounced as most men.
MikeG: I too have receding in the front.
Murf: I'm still hairy
Chuck has left the room.
jameson411: hair is not a problem for me :-)
Murf: anyone talk to Duane?
jameson411: my barber comments on how thick my hair is everytime
mjo5712 entered the room.
ToddAllen: I despise travelling but have been considering going. Still I wonder if whatever money I spend in attending wouldn't be better spent simply given to KDA to help fund more research.
Murf: I didn't notice him or Chuck login
MICH: MJO, good morning, how's Tampa
MikeG: Hi mjo5712, are you from the Tampa Bay area?
Murf: Comming is better for now then you will find more later
ToddAllen: Jameson, how pronounced are your KD symptoms? What do you consider your biggest issue so far?
mjo5712: hello, tampa nice and hot
jameson411: going up the stairs
jameson411: my wife says she sees the change in my face though
Murf: Hi Florida
MikeG: Do I know you? I'm from Sun City Center.
Murf: Texas calling blub blub
MikeG: Where are you?
jameson411: my face is much less expressive than a few years ago
jameson411: I also get tired very easy now.
mjo5712: palm river road
MikeG: Wow, you're realloy close.
mjo5712: hwy 41 and 60
Murf: James - you knoe you can get a chair lif for the stairs don't you?
MikeG: Yeah, I'm close to Ruskin.
Murf: fingers getting tired LOL
mjo5712: mike g how old
jameson411: There are only 5 stairs I have to deal with regularly
Dart!: I talked to a neuropathy victim who had deteriorated to canes / walker / wheelchair, and becoming verry weak, and with his treatment, which has NO side efects, he has now gone back to work as a meat-cutter - no sticks nor wheels nor pain. He is near 60.
Murf: Ramp time!
ToddAllen: Jameson, that's what I experienced first too. Lip weakness in things like whistling or blowing up balloons, then general facial weakness and quickening whole body fatigue came on later.
mjo5712: i just turned 50
Murf: Dart WOW cold on the fingers!!
jameson411: I didn't notice the face weakness.
MikeG: just a kid... :)
jameson411: however, I have felt the body weakness for about two years now.
MikeG: we need to meet and talk.
jameson411: 4 years ago, I could carry my wife up the stairs....
ToddAllen: Dart, was the neuropathy from KD or something else? What was the treatment?
mjo5712: has any one had any surgery. Like knee
jameson411: now, I have to use the handrail
MikeG: There is one other person in SCC with KD and several in Naples
Murf: saving now keep chating
jameson411: or go real slowEND CHAT