Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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Kennedy's Disease Chat Transcript
01-26-02
Topics: General Discussion/Open Forum
Host: Patrick Griffin

Chat Participants:

  • kdfl
  • ton
  • patrick
  • fergi
  • jean
  • don48312
  • bruce
  • chuck
  • john-c
  • butch
  • billeric

don48312 -- {welcome don48312}

kdfl -- {welcome kdfl}

don48312 -- GOOD MORNING ALL

don48312 -- HI JOHN

kdfl -- Good Morning Don. Not too much activity yet is there?

don48312 -- NOT YET. HATE THIS SITE

ton -- {welcome ton}

kdfl -- Don, did you know that typing in all CAPS is considered yelling?

don48312 -- GONNA FILL OUT MY MEDICAL SURVBEY THIS MORNING

don48312 -- YEP, lol

don48312 -- easier to differentiate between chatters though

kdfl -- Your right about the differentiating though.

kdfl -- Ton, Can you tell us where you are from?

don48312 -- hi ton

ton -- I am from the Netherlands

don48312 -- I was in Copenhagen airport in the 60's

don48312 -- and Helsinki airport also

ton -- I am from Assen, a town in the north of the Netherlands

john-c. -- {welcome john-c.}

kdfl -- Ton, Can you tell us a little about yourself?

ton -- My father-in-law has KD.

ton -- I have two sons, so I'm interested in all the things about KD

billeric -- {welcome billeric}

don48312 -- ton, both of us have Kennedy’s Disease

kdfl -- I am 66 and living in Sun City Center, FL and was diagnosed more

than 20 years ago.

don48312 -- tom, I am 57, living in Sun City Center, FL and was dx's 10

years ago

ton -- Myself I am 39 years old and my sons are 10 and 8

kdfl -- My mother's sister's son put me on to the testing for KD. He is

younger than I am.

ton -- This is the first time I joined the chat. I've read the transcripts

of the previous chats though.

don48312 -- you are most welcome here ton. tell us about your father-in-law

ton -- My father-in-law is 64 now and has diagnosed KD about four years ago.

don48312 -- ton, are there many KD patients in the Netherlands?

ton -- Previous to the diagnose he had complaints over pain in this legs

for several years

ton -- I am aware of one person, who send me an email a couple of days

ago. Further more I know Jean from Belgium, who just joined the chat.

Hello Jean.

kdfl -- Ton, in my case there is now pain whatsoever and never was.

john-c. -- Ton: Obviously there is possible concern for your sons in your mind.

ton -- I know my sons have an 50% chance of having KD

don48312 -- ton, some of our other members in KDA suffer from pain, I

personally do not.

ton -- My father-in-law has quiet some problems with his mobility. He

cannot walk very easily anymore and has problems with walking on the stairs

don48312 -- ton, we all have trouble with stairs. and most of us use canes

john-c. -- I have 2 grandsons, and one of them (he will be two (2) next

week), has choking problems. Possible that there is KD here. Decision for

now is NOT to have him tested.

don48312 -- tell your father-in-law we share his problems

kdfl -- Ton, I cannot do stairs at all any more and if I have to go any

distance I use a three wheel scooter or wheelchair. I also have trouble

getting out of a chair and use an Up-Lift Seat Assist to help me up.

john-c. -- I use a cane, and can't do stairs unless I have cane & also

hold on to the rail. Forget about carrying anything up the steps.

don48312 -- I had all my brothers and sisters tested, and I am thankfully

the only one affected in our family. I do have a cousin who has KD though.

ton -- My father-in-law has an electric wheel chair in which he can drive

along his hometown

ton -- He also has a chair which positions can change in comfortable ones.

don48312 -- a recliner ton?

ton -- Yes, the chair is also a recliner. It has got some possibilities to

uplift the legs

kdfl -- I plan on getting me one of those recliners with a motor to raise

it up for getting out of.

john-c. -- KDFL, I bought one before Christmas...it's GREAT. Looked at the

ones at the "old folks" store & the Pharmacy, but they had a better

selection at 40% less at a small local furniture store. The "professional"

models were in the $1200 range, and s l o w . Mine is great, fast,

reclines, has a heater, and also vibrates/massages. $650 range. Sealy

posturepedic for when I fall asleep.

john-c. -- Also I can put all 4 grandchildren in it with me & lift it up

and they all fall in a pile on the floor. This is better than a carnival ride.

jean -- My brother and I have KD, My sister is a carrier. She has 2

daughters, 20 and 22 not tested.

ton -- My wife and I decided not to test our sons on KD. When they can

understand, we will let them decide what to do

don48312 -- ton, that decision is understandable. many of our members have

made the same decision.

don48312 -- good morning all

billeric -- Good sunny Friday morning

john-c. -- HI FOLKS, I shouted for all to hear

john-c. -- Happy Friday to you, Billeric: Happy Saturday to everyone else

billeric -- Whoops, sorry about that. The mind you know!

john-c. -- Understood: me too.

kdfl -- Doesn't look like our chat leader has shown up yet. I guess we can

just talk about anything that comes to mind.

john-c. -- OK with me: that's the "open Forum" idea.

don48312 -- john, Judy and I are going to attend the Daytona 500 this year

in Feb

jean -- {welcome jean}

kdfl -- Don, If you are interested in Flea Markets and have a little extra

time there is a big one in Daytona.

don48312 -- we r not into flea markets john, and the crowds anywhere in

Daytona during race week are horrendous

kdfl -- Don, you are probably right. I forgot about that.

patrick -- {welcome patrick}

patrick -- Hi everyone. I apologize for my lateness. The telephone company

had to repair some lines due to high winds yesterday and they evidently

just finished.

don48312 -- pat, we have been conducting an open chat.

john-c. -- 'morning Patrick

billeric -- Hi Patrick

patrick -- I'm the moderator today, and John is correct: it's an open

forum day. Anything is fair game.

butch -- {welcome butch}

billeric -- Has anyone come up with a flexible ankle brace that works for

them?

don48312 -- <--- dot use any leg or ankle braces

kdfl -- I have an ankle brace of both of my ankles. They were made from a

cast of my lower leg and work real well for me. I don't walk without them

being on at all any more since I broke my foot in a fall a little over a

rear ago.

billeric -- Are they flexible kdfl?

kdfl -- billeric, They have a hinge on each side and a stop on the rear to

prevent foot drop and tripping over your own feet.

billeric -- Thanks kdfl, I will pursue that.

kdfl -- billeric, the bottom that my foot sits in is also long enough to

protect my toes if I do happen to fall.

billeric -- Sounds good kdfl

don48312 -- I have been experiencing swelling feet lately.

billeric -- My feet swell somewhat don, but my ankles are really weak.

don48312 -- I walk 1 1/2hours in a wading pool every day. feet and legs

relatively strong say my MDA Neurologist

patrick -- We may want to consider one issue about testing and/or informing

sons. Of course, fathers with KD cannot pass the disease to their sons,

just their daughters. However, a woman with the KD trait has a 50% chance

of passing the trait to her kids. If a son does get the trait, they may

have problems related to androgen insensitivity during puberty and

adolescence. I know I did.

ton -- Sorry for asking Patrick, but what do you mean with androgen?

patrick -- The definitive test for KD looks at the androgen receptor gene.

Besides affecting the neuron nucleus processes, it also affects male

sexual development. Androgen causes us to have male characteristics, and

too little (or an insensitivity to it) decreases our male characteristics.

That is why some KD patients can have enlarged breasts, smaller testes,

and infertility.

ton -- Thank you, Patrick.

butch -- Good morning--This is Butch from Penna. We are having a beautiful

day here today. Temperature in the 50's. Wow...Great for this time of year.

don48312 -- morning butch

john-c. -- Butch: same weather here in MD

bruce -- {welcome bruce}

kdfl -- Butch, it's also pretty nice here. Only about 76 though.

butch -- kdfl..76 is great but we are happy to be in the 50's.

bruce -- Good Morning - sorry I am late. My wife was using the PC for her

emails this morning.

patrick -- When I was 14 or 15, I was a sophomore (10th grade) in high

school. I was a good runner and went out for track. I remember being

ribbed unmercifully by other guys for having small breasts "like my kid

sister" as one guy put it. A discussion with a young boy about why this

happens may prevent some emotional suffering.

john-c. -- {goodbye john-c.}

john-c. -- {welcome john-c.}

jean -- Ton - I had similar experiences than Patrick. Enlarged breast is a

real problem for a young boy

ton -- Jean, enlarged breast is a thing to watch for in the next couple of

years.

patrick -- One thing I'm trying to learn is if some sort of treatment is

available for boys so that they develop more normally during puberty and

adolescence through use of a testosterone treatment. I'll let you know

what I find out.

john-c. -- For what it's worth, I had a mastectomy at age 30, and a second

one last year at 58. Dr. Fischbeck at NIH had not seen/talked to anyone

who had this done.

jean -- Ton - Let us hope they are not affected by KD

ton -- Thank you, Jean. I hope that, with our efforts and support to the

doctors who investigate KD, that when they should be affected with KD,

they can have a normal life.

butch -- Watch the Eagles on their way to super bowl.

don48312 -- I think the NE Pats and the Eagles will be in the SB

bruce -- Don4812 - Hopefully you are getting points for that prediction.

patrick -- There is a very important issue for our American readers. There

is a bill before the Senate to increase funding for rare diseases. I feel

it is very important for all of us in the 'States to call our Senators and

ask their support. Then ask our friends and family to do it, too.

bruce -- My brother who also has KD is in the hospital. The doctors are

telling him that adult diabetes is associated with KD. I thought I heard

on one of the chats recently that there is no proof to this. Did I hear wrong?

john-c. -- Bruce: I never heard that.

don48312 -- my neurologist told me my diabetes is probably caused from

inactivity caused by KD. Not from the KD itself

patrick -- I'm going to paste in some information about how to contact

your Senators. I've done this already, and it is quite easy. However, we

can't put it off, because the bill will be up for vote soon.

jean -- Ton Who old are your kids

ton -- Jean, my sons are 10 and 8

john-c. -- Patrick: can you get the Bill #??

butch -- Bruce--My wife and I were in your area last week when we went for

a ride. We were at Eagles view but couldn't find an address to call you.

patrick -- The Rare Diseases Act of 2001, S.1379, which increases funding

for rare diseases research, has been placed on the Senate Legislative

Calendar under General Orders - Calendar No. 298. It is to be put up for a

vote soon. Please call you Senators and ask them to co-sponsor, support,

and/or vote for this bill. To do so, call the U.S. Capitol Switchboard at

(202) 224-3121, ask for to be connected to your senator’s office. Do this

for both Senators of your state. Since your Senator is probably busy, ask

for his/her Health Legislative Assistant (LA) and explain how this bill is

important to you. If you do not know who your Senators are, go to the Web

site ?Project Vote Smart? at http://www.vote-smart.org/index.phtml . At

that Web site, just enter in your ZIP code, and a list of your Senators

and Representative will be provided. Included will be their biographies,

committee memberships, office(s) addresses, phone numbers, email, and

other contact information. Then, you can call their offices directly.

Since the mail is still not working properly in Washington since 9/11, and

they get thousands of emails, the telephone is the best way to quickly

register your feelings about this matter. I did it, it works great, and

the Congresspersons? staff members were all very receptive. To read the

Senate Health, Education, Labor and Pensions Committee Report 107-129 go

to: http://thomas.loc.gov/cgi-bin/cpquery/R?cp107:FLD010:@1(sr129). You

can also access the bill language at http://thomas.loc.gov. If you have

any questions, call me, Patrick Griffin (Director of Education and member

f the Board of Directors of KDA) at (785) 325-2629. We all need to do this

ASAP. We all need to ask our friends and family to do this, too.

john-c. -- Patrick, you type really fast!! Thanks

patrick -- That was a paste I worked up before hand. It still has my usual

number of typographical errors.

billeric -- Patrick, when there is a bill number we should know it. It's

easier to send a message regarding bill number. Whoops you got it!


jean -- Patrick - do you receive my e-mail today?

patrick -- Jean, my computer's been down (bad phone line) since last

night. I just got it back online, and haven't had a chance to check my

email today.

jean -- Pat - let me know if you get it, I will resend it later

bruce -- FYI - Remember the speech recognition discussion we had a month

or two ago. I just bought a new computer this month with Windows XP - Home

edition. It comes with its own microphone and software to dictate directly

into email or Word documents. It took about 30 minutes to set up. It is

great (and fun to play with).

patrick -- Bruce- speech recognition has really come a long way in a few

years. Macintoshes also have software for it. The ALS community has really

been at the forefront of activity to push this software along.

john-c. -- I also got the IBM Via Voice but it takes about a week of

constantly refining it for good accuracy. It is great with complicated

words, but still errs on simple words.

butch -- I was going over some of the old chats and I found that we've had

about 62 people respond to the KD chat room.I was really surprised to see

that many folks have been onboard our chats.

butch -- I was also listing all the meds that we have been taking for

various conditions. I would like to keep an ongoing list of what works and

what doesn't. Maybe this would help someone new trying to get some relief.

bruce -- Butch - good idea. I think that would be very helpful.

don48312 -- aren't we listing our meds in the survey due in Feb 2002?

patrick -- I think it is a very good idea to keep a list of all the

prescription and non-prescription meds we take, plus any vitamins or herbs

we regularly consume. This list would include those for KD as well as

those for other conditions. For example, my doctor is struggling to

maintain my blood sugar and triglyserides with medication. One side effect

of some of these meds is "muscle weakness and pain". Go figure.

don48312 -- anybody going to the FSMA convention? Judy and I are already

registered

ton -- It just could happen that if more doctors know about KD, more

people will be diagnosed with KD.

ton -- And then, maybe KD isn't so rare than we think or know now.

patrick -- Tom - KD is underreported. The estimates of its incidence in

the general population keep going up, the more we learn about it. It was

the DNA test that Dr. Fischbeck developed which has had a great impact. It

makes it easy and definitive to identify KD and to rule out other diseases.

butch -- ton-- It may not seem so rare the KD that we have but they say 1

in 40,000 men have this disease. We're unlucky enough to be the "1".

don48312 -- yes, we all won the lottery, lol

jean -- Pat - Do you know how KD's are listed in USA by 250 million

people.In Germany only 4 are registrated by 90 million people. It is an

evidence that it is many in the dark

don48312 -- with 200 million in the USA and only a very few we know of, I

really question the 1 in 40,000

patrick -- When I first started researching KD about 7 years ago, I saw an

estimate of the prevalence of KD in the general population as 1 in a

million. Most recently, I have seen an estimate of 1 in 50,000 males. Big

difference, but it is still an educated guess.

patrick -- Those who were at the chat last week will remember Dr. Merry. I

met her in St. Louis in 2000. I had a long telephone conversation with her

this week. Among other things, she really wanted me to thank everyone for

participating. For a researcher who works in a lab everyday, it helps to

know that we appreciate her efforts.


kdfl -- I am taking vitamins and Neurontin. I can't really tell if they

are doing me any good.

kdfl -- Correction: CAN'T Tell

don48312 -- I also take neurontin and vitamins, but then both kdfl and I

have the same neurologist.

billeric -- Kdfl, I also take neurontin but can't really tell if it is doing anything.

fergi -- {welcome fergi}

patrick -- We have about ten minutes left of our allotted time, although

we often get another 15 minutes after our "stop time".

fergi -- hello (late) all from Madrid

bruce -- I have to sign off to go shopping. Everyone - please take care

and we'll talk again in a couple of weeks. GO EAGLES!!!!

bruce -- {goodbye bruce}

don48312 -- tc bruce

don48312 -- hello Fernando, my friend

jean -- Fergi - are you senor Ortega?

butch -- Fergi--How is Spain? Do you have a hard time getting on this chat?

patrick -- Hi fergi. What part of Spain are you from?

fergi -- Sorry, I’ve forgotten the hat was today and I am too late

fergi -- I’m from Toledo but I leave in Madrid since 1973

patrick -- Madrid is a beautiful city! And Toledo is the home of great swords.

fergi -- Yes, I’ve been very busy in move at a new house.

don48312 -- I have the pleasure of chatting often with Fernando during the week.

fergi -- At least, I found a new KD in north of Spain (Bilbao). He has a

very sad history. He leaves alone. nobody help him.

patrick -- Before we start leaving, I want to announce a couple of

personal things. First, my birthday is Tuesday, and I will be 52. Second,

my younger sister is very busy: her daughter and her eldest son both

decided to get married this year! I hope they are KD-free.

ton -- I will end my participation on the chat for now. Next time I will

join again. Have some fine days and weeks!

ton -- {goodbye ton}

don48312 -- congrats on all the events pat

don48312 -- tc ton

john-c. -- {welcome john-c.}

jean -- Fergi - Do you still have with people from the ARMK

patrick -- Fergi, does your friend in Bilbao have a computer and speak

English? I live alone, too, and perhaps we could share our challenges.

butch -- Maybe if you have tried meds that you aren't taking now, we could

list what was tried. What works for one person sometimes doesn't work for

another. I know alot of Doctors don't know what to prescribe. Maybe we can

help them.

john-c. -- Happy Birthday Patrick!!

jean -- Patrick - Congratulation for your 52. Hope you hold 50 more

don48312 -- butch, again, I think the medical survey we are completing

will help us in the medications area, dot u think so?

patrick -- Butch, you hit the nail on the head. Many doctors have little

knowledge of how to treat KD.

fergi -- Yes, I received all yours e-mails, but I do not be too much

avtive. Only read and see.

butch -- Happy birthday Patrick--Hope it is healthy and happy for you.

patrick -- Thanks Jean. When I was 25, I thought I'd live to be over 100,

and would celebrate my 80th birthday by climbing a mountain. Now that's

just a past dream.

jean -- Fergi - I'm Jean from Belgica, not the one from France

patrick -- However, with every door that is closed, another opens. While

KD has taken my strength, it has given me a bunch of new friends like

everyone here!

don48312 -- don’t lost that dream pat, stem cell research may help u

fulfill the dream one day

john-c. -- Not for me Pat: I'm 60 this summer and will live to see at least 120.

fergi -- For all. I´d like hear about stairlifts systems. I will need one

in a few weeks for installing in my new home

billeric -- Happy birthday,Patrick and thanks for hosting today’s chat

john-c. -- Bye men.

don48312 -- tc all, see you in 2 weeks

patrick -- Thanks Don. Also, Dr. Merry thinks that they are getting closer

to understanding how the spinal neurons sicken and die. If they can

interrupt that process, they can stop the progression, and perhaps regain strength!

john-c. -- {goodbye john-c.}

don48312 -- {goodbye don48312}

fergi -- Jean- do you have AOL instant message installed?

butch -- fergi--check with your local Lions club for a stairlift system.

Our Lions club have two of them not in use at this time.

kdfl -- {goodbye kdfl}

kdfl -- {welcome kdfl}

patrick -- Fergi, there are many brands, and types. If you have a two (or

more) story house, they really can help.

fergi -- butch, where are you from?

kdfl -- {goodbye kdfl}

jean -- Pat - Will open a good bottle next Thursday, hope you can do the

same. Bye to everyone till next time

butch -- I guess our time is about up. Hope to see you all healthy and

happy. Fergi-- I am from Lancaster PA--USA.

billeric -- By folks. Enjoy.

patrick -- We're on "borrowed time", now. At most, we have about five minutes.

billeric -- {goodbye billeric}

butch -- Good bye for now. Hope to chat again real soon.

patrick -- Butch - is that Amish country? I always wanted to visit there,

especially in the autumn.

fergi -- the problem is in Spain there are not many stairlift installed,

and are very expensive. I am looking for somebody could give me some url

address to found something about that.

patrick -- Fergi, what is your email address? I'll do a little searching

and send you some W3eb addresses.

fergi -- sorry Jean. Only Spanish and a little English

fergi -- but I can understand French written

butch -- PATRICK-- Sure is. I know you talk with Annette. She is my

daughter. I know she tells you about Amish country.

fergi -- my e-mail This email address is being protected from spambots. You need JavaScript enabled to view it.

patrick -- I didn't know she was your daughter, Butch. She is a very nice

and hard-working person. She also has a very sweet voice. You are a lucky father.

patrick -- Thanks, Fergi.

Fergi -- My nickname in AOL instant message is FERGIOR



End Chat