Kennedy's Disease Association

"KDA is One SUPER, Non-Profit Organization."

Kennedy's Disease Chat Transcript
6-2-01
Topics: Mental Health and Depression

Chat Participants:

• terryw
• lenj
• jock
• kdfl
• don48312
• billeric
• teda
• dbenson
• jean
• vern
• butch
• phoenixet
• chuck
• yves44

Begin Chat

terryw -- {welcome terryw}

lenj -- {welcome lenj}

lenj -- Hello everyone. I'm len Janicki and my wife jeanne is also here.

This is our first chat.

terryw -- hi

terryw -- Hi len, Its just us at present the others should arrive soon

jock -- {welcome jock}

jock -- Hello All

terryw -- wow, there are usually more people here by now.

lenj -- Terry, jeanne & I will be in Chicago early Thursday. Hope to meet up with you & Susanne

terryw -- we will be there at around noon Thursday

terryw -- hi jock

billeric -- {welcome billeric}

terryw -- hi bill

jock -- Been sitting for one hour had wrong time for chat session

jock -- Hi Bill

terryw -- oh, sorry. Did you use the time conversion utility on the chat page?

jock -- Yes but put down wrong time in my note

terryw -- Oooops,, thank for hanging in there

billeric -- Hello Alistair good to see you up and around

terryw -- Who here deals with bouts of depression?

terryw -- I know I do

dbenson -- {welcome dbenson}

terryw -- Hi Dbenson

lenj -- I do too, my doctor has me on serzone to help the anxiety

billeric -- I can't believe anybody with this stuff doesn't have times of depression

dbenson -- Hi everybody

terryw -- I have found that an allergy medicine I take also give me very bad depression, but its the only allergy medicine that works for me. Its a double edged sword.

terryw -- it is called Dimetapp Extend tabs 12hour

jock -- Not I to busy to think about depression

terryw -- Alistiar, I commend you for that. I try to keep busy too but sometime it sneaks in on me

dbenson -- Duane is on Zoloft for his depression, seems to help quite a bit.

terryw -- I have talked to my doctor about it yet. I will next week even though I am not depressed at present.

terryw -- not

chuck -- My doctor has me on Zoloft also - 50mg daily. It has helped me...

terryw -- I have also found that getting out in the sun each day helps quite a bit

terryw -- Maybe I will try Zoloft in my next depression bout

chuck -- Terry, my doctor told me you had to start this gradually and build up. I started with 25mg for a week and then moved up to 50mg.

jock -- If I think about a bad day I look in the mirror and say to my self

you are the person that is causing me to have a bad day

billeric -- I take a 10 mg. pill of amitriptyline at night. Also makes me sleep better

terryw -- bill, what does that drug do?

billeric -- It is a mild anti-depressant

kdfl -- {welcome kdfl}

terryw -- hi KDFL

chuck -- {welcome chuck}

dbenson -- Duane also takes Klonopin at night which also helps him to sleep and some with the spasms.

terryw -- hi chuck, welcome

jock -- HI KDFL

yves44 -- {welcome yves44}

kdfl -- Hi all. Late due to working on other computer.

terryw -- I found out what causes my leg muscle jerks when I try to fall asleep. Its Caffeine. When I don't drink cokes it does not happen

dbenson -- The doctors told Duane to cut out all caffeine and just drink large amounts of water and this is supposed to help his CPK levels and kidney function with the muscle wasting.

terryw -- I have been drinking a lot of water instead lately too. I think it does help a lot.

kdfl -- My wife & I share a DIET-CAFFEINE FREE COKE every night with no side effects.

yves44 -- Yves44 is a KD from France - Hello to everyone

terryw -- Hi Yves

jean -- {welcome jean}

yves44 -- Hi terry

terryw -- Hi Jean

kdfl -- I'm doing pretty good on the depression side. I haven't got time to think about how bad off I am. There are too many people here in Sun City Center that are worse off than I am.

terryw -- wow, getting quite a crowd in here today. That's good

yves44 -- Hi Jean

jean -- hello everybody

lenj -- My definition of depression is this past winter in Buffalo with close to 200 inches of snow.

kdfl -- Lenj, That's why I'm here in Florida

lenj -- KDFL and all, does living in warmer climates and sunshine help the depression and overall well being. I'm thinking of moving to the las vegas area.

terryw -- Yes sunlight helps me and warm temps

billeric -- We live in Phoenix in the winter so I am sure that helps. Not much sun in Minnesota. Mosquitoes shade it out!

chuck -- At my age, (73) I have had several bouts of skin cancer so I do not indulge in the sun anymore.

kdfl -- I spent time in the sun when we first got here but don't get out too much anymore.

terryw -- I know this is a hard topic to discuss for most but this is the place to do it. Its hard for me because I feel I must be an example for the KD sufferers and not show my weak side but depression does affect me and I would be lying if I said otherwise.

yves44 -- I think a lot of KD has been suffering of depression...;because, we are very sensible..more than common people...do you think so

terryw -- I think that most of my recent depression has been from adjusting to not being able to work the past 6 months since I have gone on disability. I had lost a lot of my self worth.

billeric -- Your right Terry, this is not the place to be a hero. We have got to learn from each other. Requires honesty.

terryw -- I am doing better now.

dbenson -- They say that the ultraviolet rays of the sun help with depression in some people, I believe that to be true.

vern -- {welcome vern}

terryw -- Hi Vern

terryw -- I have been going in the backyard and getting about 30 mins of direct sun on me a day for the past 3 weeks and it has helped tremendously, not to mention my tan :)

vern -- Sorry I'm late. Computer problems

terryw -- Jock, are you still planning to host some chats in a more convenient time for your side of the world for us at the KDA?

jock -- Yes around August I Hope

vern -- I may just have to sit back and listen through most of this.

terryw -- that's OK Vern

jock -- If everybody does not know who Jock is it is Alistair from Australia

terryw -- I want to look into getting a live 24hr chat utility for the KDA website that anyone can go into anytime and see if anyone else it there to chat with. What do you think of that idea?

dbenson -- I think that is a great idea.

vern -- Hey, that would be great, do it!

jock -- The more the better

billeric -- Good idea Terry. I enjoy the one on one chats too.

terryw -- I will look into it very soon, the chat utility has a small cost but I think it will be worth it

yves44 -- Its an very good idea -Terry

jock -- Had a chat session with Towantic this morning on AOL Messenger it was great

terryw -- thanks

billeric -- I am sure we can help with the cost Terry

terryw -- thanks. I will keep you all informed about it

vern -- I have been really getting depressed with this computer trying to die. Have been looking forward to this mornings chat and then didn't think it would happen. Looks like I'll be able to participate after all.

terryw -- I am going to bring my video camera and videotape the Conference.

terryw -- and the meeting with Dr. Fischbeck

dbenson -- That's a good idea Terry.

vern -- will you make this available to those who can't attend?

terryw -- I may be able to make copies and send them out to people who want to the KD individuals for a small cost to cover tapes & shipping

billeric -- Great Terry. I sure would like a copy.

jock -- Just remember terry your format in the states is different to other countries

dbenson -- We are really looking forward to meeting Dr. Fischbeck.

yves44 -- I am waiting DR Fischbeck meeting too and some French researchers too

chuck -- I think it would be great to hear and see Dr. Fischbeck.

kdfl -- Terry, with all the work you are doing with the Kenney's Association, I don't see how you have time to be depressed.

terryw -- I thought the same KDFL but it still does get to me. I think my

allergy medication did most of it.

dbenson -- How many KD people are going to be at the conference, any idea?

terryw -- Maybe 10-15 I hope

jean -- I'm reading your reports about depressions who interest me for the future. For the moment I don't have problems, but I'm still working

full-time

butch -- {welcome butch}

terryw -- hi butch,

yves44 -- My occupation is to build some internet site for others association...so depression disappeared

terryw -- that's great Yves

yves44 -- the name is : www.lachainette.com and I put an English page on it

lenj -- {welcome lenj}

terryw -- are you new butch?

lenj -- sorry got off

vern -- Hi, bitch and Lenj

terryw -- ?

terryw -- Butch I think you meant LOL

vern -- Hey, I'm sorry Butch!!!

terryw -- Oh yes, you are right jock hmmmmm

yves44 -- I prepared a French site for patients with any others associations -

terryw -- NTSC Here

terryw -- PAL in others

butch -- YES TERRY I AM RON FROM LANCASTER PA

terryw -- Great Ron, thanks for joining in

vern -- Sometimes my fingers don't go where they should.

jock -- Hi Ron

butch -- I AM GRATEFUL TO ALL OF YOU FOR COMING ON LINE TO TELL YOUR

STORIES

vern -- Butch, That's exactly how I felt in late April when I first joined. It DOES HELP to know there are FRIENDS out there to share with!

terryw -- I think this is the most people we have had in any chat so far.

kdfl -- Looks like you may be right, Terry with 11.

terryw -- We need more personal stories for the website if anyone wants to send one in.

dbenson -- We are going to try and get Duane's sent in soon.

lenj -- I have mine done. I need to transfer from word to email, but I need help. I'm new to computers

jock -- Send straight from word

kdfl -- Len, If you email me at This e-mail address is being protected from spambots. You need JavaScript enabled to view it I may be able to help you get your story into email.

lenj -- Thanks KDFL If my son can't help I will E mail you

jean -- I think a good medicine against depression is to work or to be occupate, but only with an object you are interest in

jock -- How about more emails to each other to pass on as to how everybody is going

vern -- I've made a special file just for email and responses from fellow KDrs

kdfl -- Vern, I have done the same with my Kennedy e-mailers.

yves44 -- What about the U.S questionnaire - In France we are working hard on it (Jean-Jacques and some KD)

yves44 -- Questionnaire is very important...Researchers need statistical result to progress

yves44 -- For example ....Researchers need t known statistical results about muscular testing ( KD and ALS too...to compare progress during years...if someone can help to find a statistical documentation...

jock -- yves44 I might be able to help there

terryw -- Thanks Alistair, I could not find anything for Yves

billeric -- Yves, The University of Minnesota did computer testing of ALS patients. They are probably still doing them.

jean -- Yves Sorry no results to give you

yves44 -- jock:very goog e-mail : This e-mail address is being protected from spambots. You need JavaScript enabled to view it

terryw -- Dr. may just emailed us back on the questionnaire this morning on her review. I have not read it yet, We are still waiting on Dr. Fischbecks review of it.

terryw -- Dr Merry I mean

billeric -- I have never received a questionnaire. Are we all to receive one?

terryw -- Yes, bill, After Dr Fischbeck & Dr. Merry sign off on it will be sent out to all KD individuals. Its a monster survey but the results will be well worth it.

butch -- Terry I know by now that you and Suzanne have talked to my daughters Annette and ANITA.

phoenixet -- {welcome phoenixet}

terryw -- yes butch we remember now.

butch -- They will be a great asset in handling fund raisers for us.

butch -- I want to acknowledge all on board for this chat but this is the first time in a chat and I only knew Terry.

vern -- Hey, Butch. I'm so sorry to have had a typo error on your first visit.

butch -- Thanks Vern for your acknowledgment but I will answer to any

name.

jean -- High BUTCH I'm JEAN from Belgium/Europe

kdfl -- Maybe we could all give our names, ages, and were we're from again

for Butch's sake.

butch -- JEAN PLEASED TO MEET YOU. HOPE YOU ARE WELL.

dbenson -- Duane Benson, age 41 from Hurley, South Dakota. Welcome Butch.

kdfl -- I'm John, age 66, from Sun City Center Florida.

jock -- Alistair Fyfe Age 63 from Australia Originally from Sunny Scotland

phoenixet -- -> Henry, 45/male from Waterbury Connecticut

chuck -- Charles Rannells, 73, Martinsburg, WV

vern -- Vern, 68, Santa Rosa, CA USA This e-mail address is being protected from spambots. You need JavaScript enabled to view it

yves44 -- Yves 58 ans from France

terryw -- Terry Waite, Age 39 California USA

lenj -- Len Janicki, 53, Buffalo, New York

billeric -- Bill Erickson age 66 Alexandria, Minnesota

butch -- Thanks for sounding off your names. I am Ron from Lancaster Pa. I am 61 years young. An ex jarhead.

vern -- Sempre Fi Ron, Me too Korea 1953-54

butch -- Vern I was in 58-61. Several med cruises and several trips to Vieques PR.otherwise just a vacation.

jock -- Lot of oldies on to night

butch -- Hey Jock--oldies but goodies.

terryw -- If anyone wants to converse one on one with me about depression,

send me an e-mail after the chat and we can talk. This e-mail address is being protected from spambots. You need JavaScript enabled to view it

terryw -- We have a new LOGO for the KDA. Look for it soon on the website. Its very nice

terryw -- I will post it tomorrow

yves44 -- May I take your logo to put on the new French KD site - just to

put a link with you

terryw -- Yves Let me think about how to do that

terryw -- Yes Yves I think that will be fine. I will send you it

jock -- Yes your Right. Do we have a updated email listing

terryw -- Tom Goynes will be paddling 260 miles in a Canoe to raise funds. That's a lot of paddling.

terryw -- Yves, so it will be a graphical link? Yes

vern -- Terry, how are the cookbook orders going? I'm getting some interest in my neighborhood.

terryw -- The cookbooks are going great we have over 400 pre orders

terryw -- The more the better

vern -- How many are you printing?

terryw -- Printing 500 at present, they have been sent to the publisher for them to make a prototype to send to us for final review

butch -- I understand that we only ordered 500 cookbooks to be printed. I thinking that we are thinking too small.We should do more.

terryw -- Originally we started off with 300 then we increased it to 400 and then 500 we may increase it again due to overwhelming response

terryw -- Check www.kennedysdisease.org for more info later on cookbooks. The name of the cookbook is "Recipes from around the world"

butch -- Terry-sorry for interrupting our chat with so many personal things.

terryw -- its OK

jock -- Question to Terry! Exercise does exercise damage muscle that are there as I have been given exercises to do gave them away as some were like push ups from the floor onto all fours

kdfl -- Jock, if I had to get down on the floor to do exercises, that is where I would have to stay for a long time.

terryw -- Me too KDFL

dbenson -- We have been told that the more you use a muscle, the faster it will waste but to still do mild exercise such as walking, nothing

strenuous.

terryw -- we have about 30 min left, any more discussions on depression?

chuck -- {welcome chuck}

chuck -- Sorry I got kicked off line and just got back on.

phoenixet -- ditto-my wife would need a small crane to get me up

jock -- Same here as I crawl to a chair to pull myself up

lenj -- Once on the floor I can't get up without help

terryw -- Jock, I have always been told that exercise that tears muscle is bad for KD patients, Stretching is best or very light weights

vern -- About Depression: I've found that just doing something on the spur of the moment does help. even if it is something dumb.

jock -- I will tell the Physio to shove them

butch -- Depression goes along with this disease. Only if we can remember

our limitations and just do what we can.

jock -- What time is it there terry

dbenson -- Got to go, will talk to you all the next time. Bye.

kdfl -- Bye Duane.

phoenixet -- I find the best deterrent for depression is to keep myself very busy so I don't have time to be depressed.

phoenixet -- easier to say than to do, but it is the way I deal with it

terryw -- bye dbenson

dbenson -- {goodbye dbenson}

vern -- Bye dbenson

jock -- Bye Benson

lenj -- Butch, sometimes I don't know my limitations and push hard, then

find out I can't do it.

butch -- GOOD BYE.

phoenixet -- Bye Benson

vern -- I can relate to that!

jock -- Same here

chuck -- Bye and to the ones going to Chicago, have a good and a safe trip.

chuck -- {goodbye chuck}

terryw -- I suffer from pushing too hard weekly, I am right now

butch -- sOME OF YOUR STORIES ARE A REFLECTION OF MY LIFE. THANKS FOR

SHARING.

kdfl -- My wife won't let me push too hard. She doesn't want to have to pick me up.

phoenixet -- we have two choices, either we live our lives to the fullest or we lay down and die

vern -- I keep looking at projects that were once easy and now I just won't accept the fact they're beyond my limitations. That really makes me depressed.

yves44 -- My best medication is to work with my brain....a bit with my muscles...and to be very relax...I know...no easy but its work for me

phoenixet -- I will remember that Yves, that sounds like a good motto to live by

terryw -- butch, we are so glad to have Annette & Anita on board, they are real go getters.

butch -- Terry My daughters are great but my wife Mary Lou is my steadfast helper day and night.

jean -- Right phoenixet

phoenixet -- caution is the key. we must know our limits

lenj -- phoenixet right on push hard always and try harder, the satisfaction is usually worth the consequences

kdfl -- My biggest problem is knowing what I want to do and how to do it but not being able to make my hands work good enough to get the job done.

vern -- Again, I feel very uplifted by this mornings chat. Thanks again to all. Got to go, Vern

yves44 -- Who are Annette and Anita - Hello you both

butch -- Yves Annette and Anita are my daughters and they have come on

board to help us all.

yves44 -- Tell to Annette and Anita....hello from some KD from France

kdfl -- Bye Vern

jean -- My time is over, bye to everyone

phoenixet -- Just knowing that there are all you people dealing with the same things I am and not giving up gives me the strength to go on.

jock -- I will sign off in a minute if you can remember Terry an up date on email addresses. Thanks for the support from everybody have a great time at the convention and a safe trip to all

terryw -- Yves, an announcement will be coming soon about their involvement in the Kennedy's Disease Association. They are Ron's(butch's) daughters.

billeric -- Bye Alistair. Talk with you later---

jock -- Your day is just starting I am off to bed 130AM Sunday morning Bye All

terryw -- Goodbye Alistair... Your changing your email address again?

butch -- good bye for now see you on the 19th

phoenixet -- Terry, I thank you from the bottom of my heart for starting this group I know it is hard work and time consuming but the good it has done for all of us is fantastic.

jock -- No I want KD Sufferers email addresses

terryw -- Jock: We cannot release the KDA member email addresses to you of those who wish to remain anonymous. We must respect their wishes. however, you are free to use the contact list that we email out or the one from the KDA Web site.

terryw -- However, Alistair, type your email address here and those who

would like to contact you directly may.

terryw -- Bye Jean.

jock -- Update

phoenixet -- Goodbye Alistair and I will keep in touch (Towantic)

jock -- Thanks for the chat this morning Towantic

terryw -- Then you will have their email addresses with their permission! I'm sorry we can't give them to you or anyone else. Only the one's on the contact lists.

jock -- OKAY TERRY

jock -- BYE

jock -- {goodbye jock}

yves44 -- See you soon....and we hope a good trip to Terry and Suzanne to CHICAGO...French KD will be in U.S next year

terryw -- The chat will automatically close in about 10 minutes.

billeric -- Got to go. Thanks Terry. We appreciate you. Bye

kdfl -- Bye All, see you again on the 16th.

terryw -- French KD will be where Yves?

yves44 -- U.U = U.S

kdfl -- {goodbye kdfl}

terryw -- Thanks to everyone for joining the chat. We hope to see you next time.

lenj -- Thanks to terry and all of you for a very pleasant chat. this was my first and I hope to have many more. see some of you in Chicago. good-bye

phoenixet -- Thanks for the companionship everybody and I look forward to our next chat. Bye

terryw -- We are in need of future chat topics. Please send us your suggestions. The next chat is an open session.

butch -- Hope to see you all on the 19th. Thanks again Terry for all your guidance and leadership.

yves44 -- French KD association will go to the next meeting ( next year after CHICAGO)

terryw -- Where in the US Yves? The Families of SMA conference in 2002?

terryw -- Ron, the 19th? The FSMA is on the 22-24 of June...

yves44 -- Yves - Will discuss about that with Jean and Jean-Jacques

vern -- {goodbye vern}

terryw -- Oh, Ron, you mean the next chat on the 16th!

butch -- Sorry but I thought the next chat was on the 19th.

terryw -- No problem Ron, I just happen to have a calendar here in front of me. The next KD meeting may be a cruise in 2002.

terryw -- Chat sessions are always posted at

www.kennedysdisease.org/chatpage.html Look there for topics and if there is a holiday coming up, when a chat may be skipped.

terryw -- Well, we will say our quick good-bye! Have a great day or night!

yves44 -- Bye

butch -- GOOD BYE TO ALL.

phoenixet -- {goodbye phoenixet}

terryw -- {goodbye terryw}