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Kennedy's Disease Chat Transcript  01-6-2007

Topic:  The effects of stress in our lives

Host: Bruce Gaughran

Chat Participants:




Bruce: Good Morning

goody: welcome

Bruce's new status is 'administrator'.

DarwynP: Hi Bruce, I'm just going tom grab a coffee be right back

DarwynP: to

Bruce: What is the weather like in Indiana this morning?

goody: rain but 50's

Bruce: This winter has been something else so far.  We were in the 60's and 70's most of December and it is still warm today.

Bruce: Of course, if I was living in Colorado, I might not be enjoying it very much.

goody: wow--I think the weater patern are going crazy-- but in my humble opinion it has little to do with the global warming

Bruce: About 20 years ago, I almost took a job in Lafayette, but ended up going to Seattle instead.

goody: if you like rain --you made the right choice  :-)

Bruce: We liked the city and thought it would be great to have a local college team to back.

MICH entered the room.

goody: what is the matter with Purdue????    they don't win much but fun to watch

Bruce: I went to work for a forest products company and ended up being transferred after several years to PA.

DarwynP: I'm back, 8F here in Winnipeg

Bruce: Morning, Utah!

Bruce: What has your weather been like this winter up in Canada?

DarwynP: really warm!!! above freezing last week or so.

MICH: Good Morning, PA, GA and CANADA

DarwynP: Broke record 2 days ago

Butch entered the room.

Bruce: I still remember my several trips to Prince Albert during the winter.  WOW!

Bruce: Morning, Ron

goody: what about Indiana

Dart! entered the room.

Bruce: Good Morning, Dart

Butch: Good morning from Penna. It is 66 degrees here in Lancaster. Hard to believe.

Bruce: We have been talking about how mild the winter has been so far in the east.

Dart!: G'morning Bruce - it is -5 (celsius) here in B.C.

Butch: Hope you all are having a great day.Todays topic should hit home

Bruce: Eric, what has it been like in Utah?

DarwynP: Is it 4:30 or 3:30 est for the game today

Bruce: 4:30 Eatern Time

Bruce: Or 4:00

DarwynP: good

MICH: It's 19 degrees here in SLC

Bruce: You can have that kind of weather!!!

Bruce: The other game today is at 8:00 eastern

DarwynP: I always chuckle when I see them frezing there .... off on field!! Poor them!!!

craig_h entered the room.

craig_h: good morning

Bruce: Okay, the big question of the day, who is going to win Monday night between OHio State and Florida?

Bruce: Morning, Craig

goody: no question about that---OS

Bruce: You must also be warm this morning, Craig

DarwynP: Couldn't tell ya, I don't follow the college ball.

MICH: I'm putting my money on FLA, as I'm originally from MICH

craig_h: yes, it's in mid-60's

craig_h: wooohooo

Bruce: Eric, I was very disappointed that UofM didn't match up better against USC.

DarwynP: maybee a couple months we'll get that warm

Sammy entered the room.

goody: that's a big 10/4

DarwynP: wow typing sucks today

Bruce: Morning, Sammy

Apache entered the room.

MICH: Yes, it was embarrassing, but watching Boise State beat a big team and Oregon State was great!

goody: unless your from OK



Bruce: Well, the subject for today is how does stress effect us?  I pickted the subject because in my working days, it did effect me.

DarwynP: Hey guys I seriously looking for a power wheelchair with tight turning radius and still mobile outside as I'm in a Condo apartment. Any suggestions?

goody: I have more problems with frustration than stress

craig_h: I get stressed in an unfamiliar atmosphere, tend to over think it, panic, and leave

Dutch entered the room.

DarwynP: Sorry Bruce was typing same time as you started the subject.

JACK entered the room.

DarwynP: I can wait

Bruce: When I was a little younger and could exercise, I could blow off a lot of stress.

MICH: Stress effects me both mentally and physically at times and best not at the same

goody: the jet 3 is the easy to turn on a dime ---but my invacare is the best all purpose chair

Bruce: Frustrations is something many of us have to deal with ... I link it with stress, because when I become frustrated, I have stress.

MICH: Bruce, do you still exercise or do you find it counter productive?

DarwynP: I do feel I'm stressed but I don't know if it is actually affecting me physically?

Bruce: I exercise every day.  I have a light exercise every other day and about a 30-40 minute workout on the heavy days.

goody: has anyone come up with exercise is helpful or actually wears out our muscles faster???

Bruce: Frustration comes for me when I can no longer do something that I was just doing a few months earlier.

craig_h: Sorry, little off subjust .........At my 2nd NIH appt they discovered I'm diabetic. Since my doctor started pills to lower the glucose level, I've been geeling so much better. I've even put full days in at work !!!

goody: diddo

craig_h: feeling


Butch: DarwynP--Give me your e-mail address--The Kda has severl wheel chairs which we are restoring. They are demo-chairs. Maybe we could hook you up.

Bruce: Good news, Craig

DarwynP: I just can't seem to do any physical exercise. I'm just wasted trying to walk from the couch to the kitchen table.

JoeK entered the room.

Bruce: Yes, me too, Jack.  It takes it toll physically, but also drains me mentally and emotionally.

Sammy: Only newly diagnosed, so still getting familiar with things. One day to day thing I've noticed is stress/ panic during the walk in commuting - as legs get tired, there's an increased tendancy to stub toes. Some of it I passed off to recovery from broken ankle last year & regaining strength, but some no doubt also Kennedy's effects.

Bruce: Morning, Joe

DarwynP: This email address is being protected from spambots. You need JavaScript enabled to view it.

JoeK: Hi from

DarwynP: thanks

JoeK: Greensboro, NC

DarwynP: hi joe

Bruce: I also find I am more irritable these days ... much of that is probably caused by the frustration and stress.


Butch: Bruce--you mean Cindy finds you more irritable----RIGHT???

DarwynP: SAmmy sounds like the start of foot drop.  I have to wear AFO ankle foot orthodic to stop from tripping on toes.

JoeK: The Charlotte,NC ALS clinic has a great support section for KD

Bruce: Probably the most frustrating thing, however, is not being able to do simple things without having to exert a lot of energy.

Bruce: Yes, Ron

DarwynP: Your right Bruce

DarwynP: Drive me crazy

craig_h has left the room.

DarwynP: I'm not always sure my family understands just how difficult it really is?

Bruce: For those working, have you noticed an increase in stress as your KD progressed?

JACK: I find that sometimes when I get irritable with what i am doing or with some one i just walk away and tell myself that this is not who i am. and that it might be just the fact that kd does affect my every day routin, don't mind the spelling

Apache: Sammy, I thought my tripping was related to my broken ankles also until I was finally diagnosed with KD.

DarwynP: I would have to say yes Bruce.

Butch: We all have stress in our lives. We all have to deal with our own kind of stress. BUT--if you have a tough time dealing with stress--talk with some one who is dealing with the same type of problems. KDA guys.

Bruce: I always talk about quality of life.  I need to adjust my thoughts around what quality means and remove the physical aspects from the list.

Bruce: Good point, Jacl

Bruce: Jack

goody: I don't go into the restaurants much any more--where I used to most of all maint. both out and in side

Butch: Right Bruce--work within our limitations..

DarwynP: some days I hate the thought of all the effort its gonna take to get going to work!!

Bruce: I remember when the most difficult part of dealing with KD is that others would find out I had it (ego thing).

Butch: DarynP--Be glad you can still go to work. It helps keep your mind off KD problems.

Bruce: Today, no one would not notice that I have it, so it is a little easier because I am not longer trying to hide it.

goody: getting to meet the day now (shower-getting dressed-etc) now taks about an hour or more and am worn out for a few hrs after that  :-(

DarwynP: I'm thinking quaility of life is related to fianacial also, so am still working as disabillity is not enough for me right now.

DarwynP: Probably that is the most stress that I'm feeling

MICH: Darwyn, I',m teatering on not making it to work...keep getting up earlier...exercising but seems to be somewhat counter productive

JACK: i guss i am still on the ego thing. i have not told meny peopl about my kd.  some of the guys at work kid me about the fact that i have trouble climbing ladders. or that i can not carry the heavy thing like thay do.

Bruce: Darwyn, I can understand where you are coming from.  One of the biggest decisions we made, was when to pull the trigger on retirement.

goody: mitch--that is my opinion on the work out--it wears me out and could see no improvement  :-(

DarwynP: Exactly mich, I'm doing the same but very little exercise.

Bruce: Jack, been there...

Apache: I do not get frustrated and stressed as much anymore since I quit work. Although I had learned to avoid it more in my later years by accepting things that I couldn't change.

DarwynP: Jack 2 years ago I carried out a moose 600yds. Now I can barely carry myself!

Bruce: Well, most of you know that I am an advocate of smart exercises.  While recovering from the last series of broken bones in the leg, if I hadn't exercised afterwards, it is hard telling how bad off I would be today (six motnsh without being able to put weight on the left leg).

Butch: JACK---You shouldn't be ashamed to tell anyone about your KD. It is an inhereted disease not a personal weakness on your part.

Bruce: Good attitude, Apache (is it Jerry?)

Sammy: Sorry folks - slow at keeping up as this is my first chat of any type & so trying to figure it out. Some good ideas with ankle things thanks. Knowing  what may be causing the ankle difficulties does help to tone done some stress/ frustration for me. Have to depart for a bit with the pooch - will be back in a bit - thanks.

Apache: Yes, Hi Bruce

goody: D you've joined our club--some time ago a hundred # sack of cement was no problem--now I use two arms to pour my coffee

Bruce: Sammy, welcome!

DarwynP: Right Butch, don't be scared to tell. People are very understanding!

MICH: As a good friend with KD said we go from being happy the cup is half full to...being grateful theres even a cup

craig_h entered the room.

Butch: LOL

DarwynP: I fall over if I use 2 hands

Bruce: I hid my disease for many years.  I could always find an  excuse for not being able to do something physical.  In the end, however, it was easier telling key people in my life.

goody: I'm sitting --I don't stand unless to change out of my power chair

Bruce: I like that Eric

goody: My employees have been very understanding and helpful

Bruce: I keep threatening to capture all of these pearls of wisdom someday and consolidate them into a little book for future KD'rs.

DarwynP: It is pretty amazing at times how connected we are Bruce

Bruce: How many of you are involved in the clinical trial at NIH?

craig_h: I am

DarwynP: All of us that is

JACK: butch, it is not that i am ashamed that i have kd.  my girl friend says i a  just to stuber to except that fact that i can not do any thing to make it bette so i will keep fighting it

DarwynP: I'm #42

Butch: Butch--I am in the trial.

Apache: All of my friends are very understanding and supportive with regard to my physical limitations. Actually, it is much less stressful for me now that they know about it.

MICH: Goody, I'm 60 and work at a Planetarium... can I ask you the same?

DarwynP: Jack over exerting yourself causes more damage and that's from experience

goody: Something different is that I am getting to the stage of my lips and t age feeling fat and slober more than usual--

Bruce: When I was 42, I was still climbing mountains out in Washington state ... and often falling down them because my legs wouldn't hold me up.

craig_h: butch hid from me at the Double Tree

JACK: i am in the trial i go back in march

Sammy: Thanks Bruce. Good hearing everyone's perspective. A good thought Bruce - I find similar things that if people know why I'm walking slower & being challenged on stairs, usually pretty understanding and that helps me lose a bit of frustration and back to concentrating on task at hand - walking/ stairs etc. Gotta dash -  the pooch really won't wait this time. Ciao for bit folks.

Butch: Come on craig--you were nowhere to be found.

goody: mitch I have 4 KFC's

DarwynP: My second visit to NIH is April

craig_h: actually Butch, I was having a bad day then

Apache: My second visit to NIH is in late March

Bruce: Goody, is that you Bud?

DarwynP: In the last 3 weks I've lost another 7 lbs and have lost strenght again. Drives me nuts.

goody: YES

goody: ---bud goodnight

Bruce: Darwyn, why are you losing weight?  Is that planned?

Dart!: In such an uncaring world, I find it encouraging to see how understanding many people are of physical limitations.

JACK: i do not need to lose the strengh but sure could stand to loose the weight. lol

DarwynP: No, I believe it's muscle again

Butch: I am really concerned just how many facilities are not truly Handicap excessible. I try to check them out first. Bethesda is a hard plce for handicapped folks. Most restaurants have alot of steps to enter.

Apache: Same here Jack.

goody: when going out in the public (dinner-movies, etc.) I find most every one is very helpful

DarwynP: My gut still over hangs my belt, I've lost about 40 lbs since december last year

JACK: i wonder if the NIH could put me on a good diet when i go back down?

DarwynP: 158 lbs now

Bruce: I find it amazing to see how much muscle mass I have lost in recent years.

DarwynP: I can almost watch it dissapear

Bruce: That's great Darwyn

craig_h has left the room.

JACK: 223 lbs now

Butch: Same here Bruce. Getting really thin. No muscles.

DarwynP: I wish it was mostly fat but doesn't seem to be

goody: Try going from a 52 coat with a 38 waist to 44-42  :-(

Bruce: Wieght is a curse for me.  I need to keep it down to stay mobile.

MICH: I wish the doctors had a way of determining at what point walking down the hall is all the exercise one should do vs low impact swimming being too much? Kind of telling you how many muscles gone vs what left.

Apache: I agree Bruce, but I need to get my weight down.

Butch: Todays topic stress--what do you all do to curb your particular stress problem.

Bruce: Bud, the gravity situation is something difficult to deal ith.  My waste size has grown and it isn't from muscle.

goody: puzzels

JACK: i found that since i put on the weight , my legs get worn out that much faster

Dutch: I have been taking a suppliment called 5-HTP. It works very well for me. It just make me feel better mentaly and no negative side effect as far as I know. Also I do short and simple exersises several times during the day.

DarwynP: I'm still unsure about exercise versus non, I really don't want to progress it any faster?

Bruce: Exercise still helps me deal with some of the stress.  Meditation also helps.

MICH: Having a supporting wife...not just in lifting me up support... and still dragging myself to work...both decreases and in the case of work can do the opposite

goody: D--that's my conclusion--but it also may that I'm just lazy

Bruce: Darwyn, the doctors at the conference confirmed that 'smart' exercises (controlled) is substantially better than no exercise because it keeps the motor neurons firing and the muscles stimulated.  The issue is find the right exercises and not over-doing.

JACK: i find if i can take a break and just relax with one the the cd's that i have burned it helps me to get over some of my stress.

JACK: like thay say music souths the savage beast

DarwynP: I do stretching sort of exercise more than anything. I figure that should be of some benefit.

MICH: All of a sudden my trying swimming can definitely fire up muscles but I worry about those it snuffs out

Bruce: Stretching is excellent.

Dart!: Is there not a possibility that if a person puts off exercise because of fear of it escalating the disease, that down the road we will find that mild exercise helps a lot, and then it is too late to correct the direction?

Bruce: ALways check with your doctor before beginning any exercise program

goody: I find more peace 'within' by spending more daily time in His Word--He is why I still have Joy and Contentment

DarwynP: I think the deterioration is a constant the question is will the right exercise slow it or not.

Bruce: Dart, my brother with KD is in his 70's and he still exercises every other day.  He is still mobile (walker).  Of course every case of KD is probably slightly different and no two people have the same symptoms or the same age of onset or progression rate.

Bruce: That's great, Bud.

Apache: Stretching is my only "organized" workout. However, I walk around as much as possible and will work on hand strength a bit while idle.

DarwynP: True Bruce

goody: It's taken me from mid 40's to 70 to become chair bound

Dart!: That makes sense, Bruce - just keep pecking away, not trying for the marathon.

DarwynP: nice to hear

JACK: i have found that my legs feel better if i exercis them.  you all can laugh but my girfriend and i go line dancing one or two times a week and my legs feel better for it. and to tell you the truth i have not fallen as much. it has helped my stamena

Bruce: Great Jack

DarwynP: Great Jack

Butch: Line dancing--that is great.

JACK: of course i only do the easy ones. lol

Dart!: And Goody, the Master Physician does have a lot of answers.

goody: Jack ---that used to be one of my favorite things to do--LINE DANCING

Butch: My dancing is mostly the KD shuffle. LOL

DarwynP: I wish I could

Bruce: I always believed in exercise, but it took being laid up for six months to really drive the point home.  When I first started exercising again, I couldn't stand on my left leg for ten seconds without extreme pain and weakness.

MICH: Does anyone else have neuropathy in the feet that cause them to be numb and tingly except sometimes during the day when walking?

Dart!: That takes a lot off guts for a KDr to get out on the dance floor!! Congratulations!!

Bruce: Yes, Eric

Dart!: 'of''

DarwynP: I was hoping murf or kelly would be on today as I had a question about disabillity income tax benefits

goody: by holding on to something I can stand for a few min---but no balance and fall if not carful

Bruce: Balance is the key to staying upright.

goody: my feet have very little feeling at all --but don't know if that's the heart and not KD--they also are swolen most of the time

Bruce: A few years ago, I fell several times because I turned to quickly.  Today, I have to think about any movement before doing it.

DarwynP: Mich very mild and only when feet down long time, as poor circulation in feet they swell and turn purple and cold most of the time

Bruce: Cold feet!  I wear socks to bed.

Apache: I can stand upright for quite a while as long as I keep my knees locked so the weight is on the bones. However, I do experience some foot neuropathy.

goody: Same here D

DarwynP: Same here Bruce find I have to think lots when on my feet. I hate it when someone wants a conversation while I try to walk

Butch: DarwynP--talk to Bruce--he is the resident disability expert.

Dart!: Goody, do you wear elastic stockings to counteract the swelling?

goody: yes

Bruce: Only for the U.S. unfortunately

DarwynP: Sorry I'm talking Canaian Tax

DarwynP: Canadian

goody: gotta go talk to you all in a couple

DarwynP: bye

Dart!: Yes, socks to bed helps the cold feet problem, I find, but don't have to use them every night.

Bruce: Darwyn, as you learn more about the Canadian law, please keep me informed.  I would be good to know when others ask.

Bruce: Take care, Bud.

Butch: Well guys--I must go for now. Stayh healthy till next we chat.

DarwynP: I wil bruce

Bruce: Take care, Ron

goody: God Bless you all

goody has left the room.

Butch has left the room.

Bruce: My computer or the server is extra slow this morning.  It is frustrating.

Sammy: Hello folks - apologies for abscence - the pooch actually wanted to walk in the rain & I'm slow at this chat thing.... Mitch - have noticed the tingly toes, usually after walking for a block or two and then it turns to more focussed tingling - I tend to walk through it (carefully) for a few more blocks as I figure the exercise can't hurt.

DarwynP: I just got my doctor to fill out disability tax reduction forms.  Apparently they automatically deny the first time, to weed out the phonies I guess.

Bruce: Sammy, I miss walking the dog.  I now have a golf cart to walk him.

Dutch: I am scheduled to have a hip replacement next month. I am somewhat concerned about how much effect my KD has  on the   recovery time. Dous any of you have an idee?

MICH: Sammy I miss being able to walk the dog... and feed the dog... and having a dog

Bruce: I burned out a scooter a couple of years ago going up and down the hills with the dog.

Apache: To get back to the stress subject, I found that learning what my limitations are and accepting it eliminates alot of the stress. I get frustrated, but by knowig and accepting my limitations, the frustration doesn't lead to a lot of stress.

Bruce: Good attitude, Jerry.  I need to learn more from people like you.

MICH: Has anyone had a hip replacement?

DarwynP: Sammy the AFO provides anklr support as well as lift your toes for you. I recommend the swedish AFO as its is the most comfortable and doesn't irritate your legs as it only goes about as high as the bootom of your calf muscle and your socks prevent chaffing of your leg.

Dart!: Apache, those are good points - learning and accepting!

Bruce: Dutch, I don't have an idea, but I will tell you to keep your doctor and rehab therapist well informed.  Also, check out the KDA web site on anestheia (spelling) concerns.

Sammy: Dog walking and company is comforting for sure - he's had some arthritis or pinched nerve himself over the last month and so walking has been a challenge for him. Have had him at a doggy chiro and he's improving - both of us struggle through the walks. We're a good fit for each other! They're great friends for sure.

JACK: Apache i agree with you. just being happy with who i am is agreat help also.  i may not be famous but my kids love me

JoeK: bye to all Joe Kerley

JoeK has left the room.

Sammy: Anyone have any experience with primrose oil? My neuroligist (ALS specialist) had noted evening primrose helps reduce hand tremors. It seems to help me.

Bruce: Dutch, the other thing I found out when I was laid up.  Keep the rest of the body as active as comfortable and possible.  There are exercises you can do to keep the motor neurons firing.

Apache: I sit on my back porch and throw a tennis ball for my dog using a "Chuck-it" tool.

Bruce: Two minutes until the end of the formal portion of the chat.  You can stay on afterwards and continue to chat.

DarwynP: Haven't heard anything sam

Dutch: Bruce, Thanks !!!

MICH: Yes Bruce, good chat!

Sammy: Bruce - thanks for the subject and moderating!

Dart!: Bruce, where do we learn of these particular exercises to 'keep the neurons firing'?

Bruce: Thanks for joining us today.  It was good chatting with you and thanks for the good tips and thoughts.  Stay healthy, happy and upright.

Apache: Thanks Bruce

JACK: it was nice to be in the chat this day.  my god bless. hope to make the next one. but work makes it hard.

DarwynP: What hotel is the KD Conference going to be at in Vegas.

JACK has left the room.

Bruce: Dart, look onthe KDA website.  I put together an exercise guide approved by several doctors.  Also, discuss this with your neurologist.

DarwynP: Heard it was Nov.6 to 8

Bruce: D- I am not certain they have picked the final one yet.