Kennedy's Disease Association

Kennedy’s Disease Knows No Boundaries...

Kennedy's Disease Chat Transcript  04-15-2006

Topic:  Open Forum

Host: Bruce Gaughran

Chat Participants:

BEGIN CHAT

Ron--PA: Good to see so many here early.

Bruce: Today is an open topic, so whatever you want to talk about is fine...

kellyC_: back

PA-PAUL: HI ALL

MICH: What does Physiatrist mean?

PA-PAUL: sorry loaded and then stepped away

TerryW: Ok here's a topic, does anyone have a problem going to the bathroom passing stools, seems my sphincter muscles are not the same as they used to be.

PA-PAUL: cant believe this darn thing is working

Baddaddy entered the room.

TerryW: hard to push out

Ron--PA: Bruce--Since you did well, can you give me some stock tips?

Bruce: Morning Bad Daddy

TerryW: feel constipated

kellyC_: yes terry i do yup i went to the doctor and he says its my mucle weakness

TerryW: what did he advise

TerryW: lots of fiber

Bruce: Bad Daddy, I am not familiar with the name.  Do you have KD?

Baddaddy: Goodmorning, this is Baddadys wife as he is very tired, he has asked me to chat for him today

Murf: I did Ron

kellyC_: nothing terry its kd i guess//8

Bruce: Welcome

PA-PAUL: WOW that is what i need..  I have had diareha for about a week now 4 or 5 times a day and I am ready for a little constipation

TerryW: I have been eating dried apricots

kellyC_: lots of fiber or prune juice

TerryW: or grape nuts cerial

Baddaddy: Baddaddy is Bob and yes he has KD

Bruce: Terry, I don't have the problem.  I am as regular as a clock normally.

TerryW: I used to be until just recently

MICH: I definitely lost a lot of muscle in those lower cheeks... it all started with the beginning of symptoms and trying to push a lawnmower...had to use my midsection instead of my arms

kellyC_: I have been like this now for 2 yrs

Bruce: Thanks, I am sorry I didn't recognize the name.  Where do you live in AZ?

Baddaddy: I see your speaking of bowel problems. Bob's new pain meds are giving him constipation too

PA-PAUL: i bought the metamucil fiber tablets long ago and tahke 4 o5 5 a day and I had really good luck until about a week ago..

TerryW: med can do that

Baddaddy: Gilbert

Bruce: Yes, I do know that meds can cause problems.  WHile I was recovering from the breaks, I had to be extra careful and drink loads of water to flush the system.

TerryW: I feel kinda wierd talking about this stuff but I feel that other may have the same problem but may not want to ask

kellyC_: no need to feel like that terry,

PA-PAUL: terry watch for plain flue bugs too.. maybe it will pass (no pun intended)

TerryW: others can read about it in the transcrpts

craig_h: Just to throw an idea out there. Seems I've noticed we are all effected somewhat differently. Could it be other problems that we immediatley blame on Kennedy's

Baddaddy: We are all adults and don't worry about me Terry, all I have been through, everyone has seen every part of me  ....//1 //1

Bruce: Soft drinks also cause problems.  I switched to only water and tea several years ago.

kellyC_: Well our body is mostly made up of Muscles

TerryW: thanks

MICH: Baddaddy...how long have you had the KD symptums and about how old are you...I'm 59 and had symptums since about 1992

Bruce: Craig, I agree.

PA-PAUL: on another subject " scotter batteries" can anyone tell me where they bought theres and how long do they last ?? a year or

PA-PAUL: is it really based on my weight..

PA-PAUL: the more to carry the more juice it uses

Bruce: Batteries on my scooter lasted three plus years.

Baddaddy: Bob got diagnosed with a DNA test in Dec but has not been well for about one year

PA-PAUL: wow

PA-PAUL: what brand were they

Bruce: Weight does cause more power, Paul.

TerryW: I just got a new set this year and they don't last like my originals did.  My originals lasted me 5 years and held a good charge to go for a week or so, the new ones they replaced them with only last a day

Baddaddy: Bob got his scooter batteries paid for by the MDA Association just last month!

Bruce: I don't remember, Paul, but I will try to find out.  What kind of scooter do you have?

TerryW: MDA paid for mine also

PA-PAUL: I submitted the bill to MDa but this was the first time replacing and the new do not seem to last any longer that the old ones i replaced

Murf: I'm back on my originals but have bought two sets that didn't last more than 4 months

Bruce: Paul, call the MDA and ask how their program works in your area.  They will normally pay for the servicing of the scooter once a year.

Baddaddy: How many of you do not know about the MDA and what wonderful services that will provide for you?

MICH: My Jazzy powerchair batteries lasted about six years... Praxair said I needed new ones but I think they could have lasted alot longer... I agree with Terry the new ones aren't as good

Baddaddy: They will pay up to $500

PA-PAUL: I have a GO chair (way to small for me) and also a jazzy 3 wheel scooter

TerryW: I just mailed in the fish & game for my free annual fishing license.  almost time to fish here

Baddaddy: Bob wished for me to ask as question

PA-PAUL: terry i keep thing about that free fish in CA and I keep wanting to check in PA but I keep forgetting

Baddaddy: Does anyone have a problem with their hearing since getting KD?

TerryW: SOme states offer free fishing licenses for life for the disabled. you just need to ask them

TerryW: no baddaddy

Bruce: I am not aware of hearing problems related to KD.  Normally that is an age issue and also an environment one.

doughboy entered the room.

kellyC_: Have you Guys heard of eye problems associated with kennedys????

Murf: You have to make sure both batteries are changed at once and both are the same and from the same lot

Baddaddy: He thinks that since he is having such a hard time chewing that the two must be related. he is only 46

Bruce: I use to go to a lot of rock concerts when I was young and was also in the Navy (Vietnam) where we had no ear protection.  It did cause some problems with my hearing.

Murf: Morning TJ

Bruce: Morning TJ

doughboy: Good Morning everyone and Happy Easter

PA-PAUL: another Question ???

Murf: Kelly - My eyes are killing me

Baddaddy: Hi DoughBoy or TJ?

Ron--PA: Baddaddy--My wife says I have a hard time hearing her..Could this be selective hearing?--LOL

doughboy: Both

PA-PAUL: font size is it easy to enlarge here on the screen ioof the chat???

kellyC_: yes me to all the time i think its kd altho my eye dr doent know

doughboy: What's the topic today

Bruce: No topic .. open forum

MICH: Baddaddy...I'm confused...who is he at 46?

Baddaddy: YEAH...Thats what I think sometimes too!!!LOL, but no, he defintely has something going on there

PA-PAUL: your nickle Doughtboy

Murf: Baddady - doughboy is TJ

Murf: chat name - real name

Baddaddy: Bob, my husband - (baddaddy) who is still slepping as it is 7:44am here and he has such a hard time slepping

Baddaddy: sleeping'

doughboy: Ah Ha!  Well I will share this, since I have had my Neurontin upped to 600mg I have been feeling better than I have in years

craig_h: I keep going to mail box looking for a return address of NIH

Bruce: What is Neurotin?

doughboy: It is a drug for nerve pain

Bruce: NIH is busy preparing for the trials.  They can only add two people a week (I believe that is correct).

doughboy: Leg pain etc

Murf: Kelly - My problem is sitting infrond of a computer 12 hrs a day

PA-PAUL: yes murf

PA-PAUL: Me too

PA-PAUL: can i enlarge the type here on the chat window??

doughboy: Murf I'm sure your legs stiffen up, mine do

Ron--PA: Pain in the a double ss.

Baddaddy is currently away.

Bruce: NIH won't have everyone signed up and evaluated until this fall becuse of the two per week limitation.

Baddaddy is back again.

kellyC_: H'MMMMMM,,,, personally myself i think its the muscles fasiculating behing the eye ball and casuing tired eye's and dry eyes, etc

TerryW: Susanne just yelled at me to go take a look out the window on the property, she thought she saw an EMU

craig_h: It's a long story, but I had so much trouble getting the University of Virginia to send my genetic test results. Thank goodness Dr. Paul Taylor had them

TerryW: It was a Wild Turkey LOL

TerryW: big one

doughboy: Hey Bruce, my neurologist prescribed it to me and I mean it helps!  Me anyway, medicine effects different people in different ways.

Murf: I don't know Paul - Terry can we?

TerryW: le t me read back

Ron--PA: Wild Turkey--a great drink.

Murf: Big time TJ

Baddaddy: Is anyone planning on doing the test in Washington?

Dart! entered the room.

Bruce: Morning Dart

Murf: Get your gun!

Baddaddy: hahhah

Dart!: WHEW!!! There you are at last! And a good morning to y'all

TerryW: ENlarged type, No I dont think so

doughboy: Bruce, does it take that long to enroll patients (2 WKLY)

Baddaddy: Bob is seriously thinking about going for the drug trials

TerryW: hi dart

Murf: Most of us are yes

Dart!: Hello Terry and all!

kellyC_: There is about 2 of us here in sask may go to NIH,? if selected?

Murf: Morning Dart

kellyC_: that i know of

Bruce: I need to ask everyone if they wouldn't mind clicking on their My Profile tab and add their first name.  It helps to know names especially if you are trying to associate a name with a face or a name with a previous experience.  Thanks

Baddaddy: I said to him that is might be a nice chance to meet some other men

doughboy: I hope you get to go Kelly

kellyC_: yah,,,, i guess kinda freaked out about the drug            dusteride tho?

Bruce: TJ, NIH has to evaluate each person.  They bring them to the clinic and run a series of tests.

PA-PAUL: Hello BadDaddy  where are you from

kellyC_: SIDE EEFECTS

Murf: baddaddy - he needs to come to the conference in October. both of you do!!

Bruce: It is my understanding that it takes about two days for the initial run through.

Baddaddy: We are in AZ, Bob spoke to the person almost 2 hrs, isn't in in phase 2? and FDA approved

Bruce: BigDaddy, has he sent in an email reflecting his interest?

Baddaddy: yes he has

kellyC_: The problem is no body knows if there on placebo or the actual drug

doughboy: Well, when Dr. Chen saw Murf and I a while back she told me that since I had just been seen by them, I would not have to do that, maybe they changed their mind!

Murf: who did he talk to?

craig_h: thought dutasteride site said there is no know side effects

PA-PAUL: yes murf   i hope to join you all in OCT  the info has not gone out yet has it.  Can I help maybe send it out??

kellyC_: there is graig research it

Bruce: TJ, what I was explaining was what we were told and it could be different if you were just there.

Murf: Not yet Paul

Dart!: Bruce: Could you send me that address for the company that makes braces, etc? I lost a computer AND the address.

Murf: We're still trying to fill the venue

PA-PAUL: would be happy to help???

craig_h: kelly, such as a third eye formed?

Bruce: Dart, I am not certain what you are referring to.  Sorry

Baddaddy: Is there a page on this site to post individual member photos so you can put a name and a face together?

doughboy: Dutasteride for the most part is only going to lower your testosterone which then lowers your energy level if I'm not mistaken, I need what energy I have left.

kellyC_: huh? graig/ what do you mean ? lol

TerryW: not really baddaddy

craig_h: nothing kelly, was making a bad joke

TerryW: only personal storis page

TerryW: story

Baddaddy: I wonder if all of you men would be at the NIH at the same time, wouldn't that be nice?

Bruce: Yes, you can add your picture and story to the Personal Story Page.

kellyC_: //10  lol

Murf: and the past conferences

MICH: Mrs. Baddaddy, is your husband still working?

Murf: badaddy that will not happen

Baddaddy: OK, guess we will look into that, do you really want to know??//16

Ron--PA: Terry--that may be a great idea to have just a list of KD'ers with their photo and name only.

Baddaddy: And maybe the state too with the picture & name?

TerryW: I can set up a section in the forums where people can post a photo of themselves maybe

kellyC_: there is so many in the kd database.. why dont they post there personal story on the kd web page??????//7

TerryW: but i would need to limit the size of the photo

doughboy: Well gotta run everyone, my brother in law Charley is leaving for New Delhi in a few hours and before sister Loiuse takes him to the airport I'd like to visit with him for a while!  Happy Easter!

Baddaddy: how many men are members on this site with KD and are any of the same family?

Bruce: On a different subject, I am still amazed at how many places I come across that are not handicapped accessible.  In the larger cities it isn't as much of a problem, but in smaller communities it can be frustrating.

Baddaddy: By doughboy and Happy Easter!

Ron--PA: So long TJ. Have a nice Easter.

TerryW: Yes Baddaddy

doughboy has left the room.

Murf: Have fun TJ tell him good luck for me

Murf: $ short & a day late again

Bruce: We have close to 700 associates with almost 500 having KD

Baddaddy: Bob has 3 brothers not yet affected and we do not know if they ever will or not, basically his family has now rejected him, and outcast

Bruce: We also have 66 registered as carriers.

PA-PAUL: hey Terry  I just read an article about creating your own avatar  would that be helpful for our chats???

craig_h: rejected him for a physical problem ?????

Baddaddy: are all in the US or all over?

Bruce: KD normally effects 50% of the sons in a family.

Bruce: They are all over the world with the largest numbers in the US and Canada

Bruce: 300 men with KD in the US

craig_h: doesn't Japan and Finland have a fairly high percentage?

Baddaddy: does KD affect one race more than another like sickel cell does , ect?

craig_h: I read that somewhere

Murf: badaddy - you have a new family now.

PA-PAUL: yes Bad Daddy welcome aboard

Ron--PA: Bruce--I am involved in an egg hunt for the kids in this area. It starts at 12 noon so I won't be able to attend the BOD meeting. Sorry--first one I missed. We colored 90 doz eggs.

Baddaddy: I wish Bob could have had a better nights sleep but I will save the chat for him.

Baddaddy: wow, that sounds fun..

craig_h: I want to color beer bottle ...... glass doesn't take dye very well  //1

Ron--PA: LOL--LOL

Dart!: I am the seventh son [the last], no sisters. Two left, with neuropathy, two died, having same, mother died with probably the same, and who knows but what the others would haver developed.

johnweeb entered the room.

Bruce: Morning, John

PA-PAUL: I have a younger brother who has not had the test yet Sooooo

Murf: badaddy - chats are save and posted on our website for you

Baddaddy: I am so sorry Dart to hear this.

johnweeb: morning. sorry to be late.

craig_h: I have a question about medical records. Who actually owns them? The doctor (or institute) or the patient ?

Murf: Morning John - do you have KD?

MICH: Baddaddy, there's a good likelyhood that  one of the future times you join us, you'll find that others with KD around the Phoenix area will join us, they're just not with us today

Bruce: It is my understanding that the doctor owns them, but you are entitled to a copy of them.

Baddaddy: MDA said there are only 3 in the PHX area.

Dart!: Fifty years ago the medical 'profession' knew even less about such diseases, and my mother deteriorated to the point that she could hardly swallow, and lost a great deal of weight, until someone was smart enough to install a feeding tube directly into her stomach, but she died after being in the hospital for 3 years, completely paralyzed. There are worse things than death, says I!

MICH: Baddaddy that sounds about right...there's only me for Utah

Murf: Wow Dart. I feel lucky now.

craig_h: thanks Bruce, I was told that I (as the pateint) could not request my records be sent somewhere.

Murf: My mother also died when I was 3

Bruce: We are showing eight assocaites in AZ

johnweeb: have you talked about the east coast KD control test group, bruce? what is the status?

Murf: Caig - everyone has the right to their medical records. even in Canada eh!

PA-PAUL: hey craig for about 5 years every Doc or test I had done  I requestred a copy and Kept them in a ring binder  no one ever gave me a hard time

Baddaddy: Personally, when I have tests, etc perfomed I request the copy each time and we have almost all of our own records of everything here at home

Bruce: Craig, when I retired and moved south, I asked for a copy of my medical records and received them.  You can also ask your current new doctor to request them from your previous doctor.

craig_h: thanks, I'll look into getting my own copy

Ron--PA: I was told by Shru Chen that my records could not be sent to my family doctor after being examined at NIH. Did anyone else have this problem?

Baddaddy: When we pick up films, x-rays, etc we don't take them back as I have found they are destroyed in 7 years or less.

Bruce: Big daddy .. I do the same and have my own records at home.

Murf: So do I Bruce

PA-PAUL: yes ron-pa  she told me she would send (me a copy)  but she never did..

Baddaddy: My orthopedic dr who did my shoulder replacement in 1997 informed me that I should start doing this and it was the best thing he ever told me to do

Bruce: John, I mentioned earlier that NIH is beginning their trials on two KD'rs a week.  They come in for two days of testing and evaluation.  NIH believes they won't have everyone on the trial until sometime this fall.

Baddaddy: Bob was supposed to get a letter sometime this month but we haven't received it yet, has anyone else?

Murf: I need a fat replacement. replace the fat with muscle

PA-PAUL: WOW Murf  find that for me toooo

Ron--PA: LO:L Murf!!!

Baddaddy: Hum...I was ready to send my fat....LOL

Bruce: I have found that when I need to apply for something (Soc. Security - Disability, Disability Insurance Benefits, etc.) that it is best to have copies of all the tests and major medical information on hand.  It speeds up the process.

Murf: I'm waiting too baddaddy

Dart!: Obviously, y'all have a reason for having your medical records at home, but what is the point? I doubt if the doctor reads our charts!! Sorry if that sounds negative, but it IS!!

craig_h: dart .....  but if someone else needs the charts (such as NIH)

johnweeb: i signed up for the test the day it was offered, bruce . how do i get included? will travel but want to plan.

Bruce: Dart, it will definitely speed up the application process when you need it (as I mentioned above).

Baddaddy: One, so you don't need to have the tests again. Two, in case a stupid doctor doesn't send them to the next one which has happened MANY times! and 3. So I have proof if they do something WRONG!

Dart!: Yes, that is true, there MAY be someone who cares, and we seem to be on the brink of finding out what makes us tick!

Bruce: John, did you contact NIH directly?

craig_h: the hospital at University of Virginia gave me a major run around ......  Maybe they knew I am a Virginia Tech fan !!!

johnweeb: yes.

Murf: I was resently stoped on my crestor because of CPK levels. I faxed the doctor records of the 900 levels were normal for me for the last 10 yrs and my crestor comtinued

Murf: saved me about 2 weeks of greif

PA-PAUL: WHAT IS CRESTOR

Bruce: John, then you will be contacted if selected to be part of the study.  It just is taking longer than we expected to get back to everyone and have them evaluated.

Dart!: What is a 'crestor'?

Bruce: NIH is responsible and we are just trying to help by spreading the word whenever we have additional information.

Murf: like lipitor

Baddaddy: Bob was on Lipitor which they thought had raised his CPK levels but it wasn't the lipitor

PA-PAUL: gotcha

johnweeb: good because i want to be involved and will travel from L.A.

Baddaddy: took a long time to figure out what was going on with Bob as i suppose it did with all of you?

Murf: Cholesterol medicine

billeric entered the room.

Bruce: CPK is high with anyone with KD.  Levels can be extreme (in the low four figures or closer to normal).

Bruce: Morning Billeric'

billeric: Morning Bruce

Baddaddy: Bob's CKP was about 1200

MICH: Morning Bill.... Baddaddy is from AZ too!

Murf: Morning Bill

Bruce: Big Daffy, I had two older brothers with KD, so I knew what was going on long before the actual test results.

billeric: Hi Murf

Baddaddy: Bill where are you?

billeric: Phoenix, baddaddy

Baddaddy: Gilbert!

Bruce: The chat will officially conclude in ten minutes, but anyone can stay on longer if they wish.

billeric: Sun City

johnweeb: does any med out there now lower CPK?

Bruce: Is Gilbert the place way up in the mountains NE of Phoenix?

Baddaddy: Well Hello Sun City //2

Ron--PA: Hi Bill--Happy Easter.

craig_h: y'all take care ......................  see ya in 2 weeks

Baddaddy: No, we are sounth of Mesa and east of Chandler

Murf: take care Craig

billeric: Sorry guys, forgot about daylight savings time.  Az. doesn't go on it

Bruce: John, I don't think so, but I was able to reduce my CPK from over 800 to less than 300 in a year through my exercise program.

Murf: Happy Easter

Ron--PA: So long Craig--stay healthy.

Bruce: Take care Craig

craig_h has left the room.

Dart!: Sorry, Bruce, about your brothers. Bad break!! But there are better days ahead!

johnweeb: bruce, i'll call you,

Baddaddy: Take I-10 to I-60 and you go to Val Vista exit, thats us

Ron--PA: Great chat today Bruce. Alot of varried topics. Good info too.

PA-PAUL: buy guys

Bruce: You never know what will come up in these chats, but they are usually informative

Bruce: Take care Paul

Baddaddy: Hope that I didn't keep you from talking about "guy" stuff? and thank you so much for chatting with me today !

Ron--PA: So long Paul--Happy Easter.

MICH: I have a dumb question...what is CPK?

Murf: Take care Paul

Bruce: Dart, one brother is still alive and moving pretty well in his mid 70's

Baddaddy: Creatine Kenisis

Ron--PA: NO such thing as a dumb question involving KD.

Baddaddy: it has something to do with muscle damage'

Bruce: CPK test results are used to determine if you have kidney problems.  It is also an indication of muscle waste.

Dart!: Bruce, is your brother quite comfortable?

Baddaddy: usually high CPK levels indicate a heart attack

Ron--PA: Baddaddy--nice of you to chat for your husband.

PA-PAUL has left the room.

MICH: In all these year my doctors have not measure my CPK since 1992 when I was diagnosed

Bruce: It will normally show up before actual symptoms

Dart!: So kidney problems accompany KD?

Bruce: Dart, yes, he is doing well and still gets around on his walker and golf cart.

Bruce: He also exercises several days a week.

Baddaddy: at least thats what Bobs Dr told him when they saw his numbers and did and EKG

Dart!: That is good to hear, Bruce. I wish him and all well!

Bruce: Dart, no ... CPK is an indicator os kidney problems or ... something else like muscle wasting.

Ron--PA: Exercise--the key to success. Work within your limitations tho.

Ron--PA: Bruce--sorry can't make the BOD meeting. Will check minutes. Good luck and Happy Easter. So long for now~~Ron

johnweeb: happy easter from CA, too.

Dart!: We aren't the only ones in the world with problems, and we can be thankful for what we can enjoy. Ever wonder just who brought on the problems? Mankind didn't start out this way, for sure!

kellyC_: Well everyone, it was a pleasure chatting today,,, got to go,,, bye all untill next chat.

johnweeb has left the room.

MICH: Happy Easter to all from Utah

Bruce: Everyone, take care and have a great holiday.

Ron--PA: He is risen--also will lift us up! Bye.