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Kennedy's Disease Chat Transcript  01-10-2004

Topic: The Year Ahead

Host: Susanne Waite

 

Chat Participants:

 

susanneww
bruce
butch
pa-paul
billeric
garyu
duane
don48312
mikeg
john-c
kristykendle



BEGIN CHAT


butch -- {welcome butch}
butch -- Good morning to all. It is a cool 4 degrees here in Lancaster PA.
Send some of your warmer weather our way. I hope you all had a Merry
Christmas and a Happy New Year.
bruce -- Butch, I couldn't believe the paper this morning when I saw you
were that cold. I am sure thankful I moved south.
susannew -- {welcome susannew}
susannew -- Good morning Butch!
butch -- Good morning Susanne. How are you and Terry doing? Hope you are
healthy.
susannew -- We're doing good. THings seem to be calming down a bit on the
homestead - knock on wood. Allowing us to focus back on our normal
routines.
pa-paul -- {welcome pa-paul}
susannew -- Hope you had wonderful holidays too. A sleepy morning for me.
Didn't get home from work til 9:15 p.m. last night. Had a very long day
preparing for a business trip next week!
bruce -- {welcome bruce}
bruce -- Good Morning World
pa-paul -- Hello ALL
murf -- {welcome murf}
murf -- good morning all
butch -- Hey Paul and Bruce. Glad to her from you.
susannew -- GOod Morning Murray and pa-paul.
bruce -- Good Morning, Murf and Paul
billeric -- {welcome billeric}
susannew -- Good morning Butch!
susannew -- Good morning Bruce.
susannew -- Good morning Bill. Hey, do you have a new email address yet?
We still have your invalid one.
billeric -- Susanne, still using the Phoenix address. This email address is being protected from spambots. You need JavaScript enabled to view it.
billeric -- A good Phoenix morning to all of you
pa-paul -- it said -1 when I wenty out at 8:00
murf -- I freeze when it gets to 32!! LOL
butch -- Murf--Good to hear from you. How are you? Hi Bill-- good to see
so many anxious to share holiday stories. No snow here in PA but it sure
is cold.
murf -- butch - I sent some pictures I found from the night on the water
to Susanne. How have you been?
susannew -- Ok, and we've been complaining cause its getting down to 23/24
here! THought we'd never be able to stand the cold, but I'm surprised.
Down to 34 and I'm fine outdoors. Lower than that and my hands get like
Terry says, I can't move my fingers or type afterward. So now I know
exactly what he's talking about.
murf -- It's 42 and sunny in Houston this morning.
billeric -- Hi guys. You need to be in Phoenix today. Hi of 77. It do feel
good!
pa-paul -- OK everyone Billeric just invited us all over
garyu -- {welcome garyu}
susannew -- We plan to post the conference photos on the site. And some of
the presentations, as well as the doctors' transcript. We have so many
photos, we need to figure out which to post. There are far too many to
post as we received photos from lots of great "photographers" who
attended!
susannew -- Good morning Gary.
garyu -- I am Gary Uchiyama in Kansas.
susannew -- Today's topic is the Year Ahead. There are lots of things the
KDA has planned going into the new year!
bruce -- Susanne, we can hard wait. Please tell us all about it!
murf -- Morning Gary
pa-paul -- I would like to see the group photo PLEASE
susannew -- Paul - we will definitely be posting the group photos!
pa-paul -- THANKS
murf -- Susanne - I don't know if Karol will make it today. I have not
heard from her since she left yesterday.
duane -- {welcome duane}
murf -- Maybe that was planned!
garyu -- A carsur disappear while I am typing a mrssage. I is envinient
and am just lestening today.
murf -- She should have arrived in Canada last night at about 6:30.
susannew -- The Board is wondering if we should have another KDA
Conference and Symposium - since we've done one on the east coast, then
the central states, this year the Society for Neuroscience (SFN) meeting
will be held in San Diego - October 23-27 - which means we would wrap
around their meeting again, either in front or behind. Again the question
though is interest levels. If enough are interested in attending, we are
game to do it again. I know we've had discussions about it going
bi-annually, but if we do that, it won't hit the west coast again for 4
years.
butch -- Susnne please tell Terry to include me on the contact list. I'm
still RonaldLou@aol,com. Thanks!
susannew -- We will Butch.
susannew -- Karol told me on the phone she wouldn't be here - told her to
make the February BOD to propose her fundraising ideas. We haven't made
the announcement yet cause I'm waiting for her bio, but for all who need
to know! Karol Williams is our new Fundraising Coordinator.
bruce -- Karol's joining of the team is great news!
butch -- Karol will be a great leader as far as fundraising. Thanks Karol.
susannew -- Hey Duane (and Lori!)
duane -- hello susanne. Lori's not here right now. How's everyone in CA?
susannew -- We're doing fine Duane - I know usually Lori types for you!
Well, say "hello" to her anyways for us!
butch -- Duane--How is your health?
murf -- I hope her health holds out.
duane -- Ok. Relying more on others to do things around house
don48312 -- {welcome don48312}
duane -- Anyone notice that cooler weather really agravates symptoms?
murf -- All the time!!
bruce -- Yes...
pa-paul -- I just thought I was getting worse
billeric -- Nope, Duane Haven't noticed a thing here in Phoenix!
bruce -- I read somewhere a few years ago that it is because the blood is
needed at the skin level to maintain body temperature so there is less
blood available for the muscles. I am not certain if that is accurate, but
it sounded reasonable.
susannew -- Other thoughts for the year coming are encouraging regional
meetings. There are already some individuals who meet regularly - I know
in Sun Center Florida they get together pretty regularly. But what we'd
need to do to get this off the ground is volunteers from around the
country who want to run regional "chapters" so to speak. Chapters would
get together for a day meeting, perhaps bring in one "Key-note" speaker,
do local fundraising together, etc. This could be done around the world.
In fact, there is a new KD site in the UK now - they
could spearhead the UK perhaps, etc. etc...
susannew -- What are your thoughts on forming regional "chapters"?
susannew -- There was another gentleman I think from the West Indies who
wanted to run a regional chapter for the KDA also.
duane -- I would be in favor of regional chapters.
pa-paul -- I like the idea of the regional chapters am willing to help but
bad at organizing
susannew -- Paul - you have been elected the North Easterly KDA Chapter
Leader - See, we move fast around here! Murray, Bruce (other BOD who are
on the board - you may vote now!)
susannew -- We don't require anyone to be a rocket scientist to volunteer
to help out the KDA> All we need is those willing to give it a try!
duane -- All we need is South Central US covered. No I'm not volunteering.
murf -- Why is everyone looking at me? LOL
don48312 -- MORNING ALL
don48312 -- cool here in FL
susannew -- Good morning DOn - speak of the well, devil! I just wrote
about you in my last entry!
don48312 -- what ever it is susanne, i didnt do it, lol
butch -- I still have a couple of weeks to sell Lottery tickets for the
KDA. It doesn't look like I will sell them all but, we should make some
money for the KDA. Good morning DON.
butch -- Thanks Paul--We have sold over half of the tickets but we still
have several weeks to sell the rest.
duane -- Ran into problems with my HR dept at work. They want me to go on
personal leave two days a week instead of working from home. Anyone
experience these issues? perhaps we can e-mail ?
susannew -- Duane: If they put you on personal leave - how long before
they discontinue paying you for those personal days? I know here in
California, to take "Personal leave" days you have to start using all your
sick time, then vacation time, before they pay you short term disability
for only a limited amount of time... is it the same where you are?
don48312 -- duanne, most employers fight the work at home issue. but most
find after a test, the work still gets done
bruce -- Duane, I was able to work five-days a week out of the home in the
end. I started out with one day and eventually went to five. The company
felt it was good for my safety and I proved I could be just as productive
at home. I went into the office about one day every two weeks for
meetings.
don48312 -- problem is most managers feel insecure if they dont have
troops to order around
duane -- They pay 12 weeks / rolling calendar year. Also, use all
vacation. Now telling me I have no sick time (they call it personal time).
And have changed categories on my e-time card to reflect personal leave
instead. Just feel like they are pushing me out the door. Would like to
share experience via e-mail. Maybe others have similar experiences.
bruce -- Duane, you can reach me at This email address is being protected from spambots. You need JavaScript enabled to view it.
duane -- Thanks Bruce. I'll send e-mail after chat.
susannew -- Duane: is it time to think about going out that door? I know
after Terry went on disability he actually improved. I think because he
left the stress behind and could relax/rest when he needs to rather than
pushing through a whole day. Financially it was a tough decision, but
heath wise, it was for the best.
duane -- I'm wrestling the financial monster. I know it would be best.
susannew -- Duane: THat's a really tough situation. I'm sorry to hear
that. We'll pray for you and your family.
bruce -- Working out of the house was the best thing that happened to me -
healthwise. It was initially difficult to leave my friends at work, but
the benefits were ten fold.
garyu -- Duane, I am planning to apply SSD too
bruce -- Gary, if I may be so bold as to recommend the white paper I wrote
on applying for SS-D. It is on the KDA web site. It might help you move
through the process.
murf -- A very good piece Bruce!
duane -- Garyu - the SSD bruce mentioned is great white paper. Answered
many questions I had.
garyu -- Bruce, I have read your paper. It is very helpful for me. Thanks.
butch -- Bruce--What a great paper...So detailed with GOOD information.
Thanks for all your work on it.
vic -- {welcome vic}
susannew -- Good morning Vic. Have you been in our chats before? Do you
have Kennedy's Disease or someone in your family?
vic -- Good morning all. I was in one chat before. My husband was
diagnosed last year, although he had symptoms for about four years before.
susannew -- Thanks Vic. Have you joined the KDA?
vic -- Yes I have. After receiving the emailed article about Leuprorelin I
was hoping someone had some more information about it.
mikeg -- {welcome mikeg}
susannew -- Hi Mike! How are you and Paula?
mikeg -- Hi Susanne! We ok. A bit tired from having a bad cold.
bruce -- We are having a great turn-out today. I think Susanne should be
our host from now on!
murf -- got my vote bruce
susannew -- I wonder why? Maybe cause I'm prettier than Terry? Ha ha!!!
don48312 -- bad cold here a few weeks ago. has anyone had any experience
with a nebulizer???
murf -- No problem on this end!
john-c. -- {welcome john-c.}
susannew -- Hey John. No the entire KDA BOD is here. We can make some
important decisions if need be right now!
bruce -- Okay by me
susannew -- THat was NOw the KDA BOD
john-c. -- hello from the late John; i'll join in a sec after I read &
catch up.
bruce -- Good morning, John
butch -- This is going to be a great year. I know they are getting closer
to the cure. I hope we can help the researchers to find that cure.
duane -- I think research is getting close to a cure. Could be Y'04
susannew -- Another exciting piece of news for the coming year is Dr.
Sobue's clinical trial in Japan at the University of Nagoya. If they find
Leuprorelin improves those with KD, we may be on to our first real
treatment. Although it has other side affects that aren't very
glamorous... but its a step in the right direction. We'll keep you posted
as we hear more about this study. Other studies may be taking place in
Germany and the US. If the US reasearchers do move forward - they will
need volunteers - and of course, I think we have plenty at the KDA> We'll
let you know if this is the case.
don48312 -- years back, i participated in a medical study using
LEUPROLIDE. i got weak as hell using it
susannew -- Don: Perhaps it was the dosage? Perhaps they need to find
another testosterone blocker. But they will only know through a clinical
trial. I believe they will be testing 40 individuals if I remember
correctly.
john-c. -- Test was to be on 100, with 40 getting it, 40 placebo and 20
nothing as I remember. Topo bad they didn't find out about this with
something we would be willing to give up, like fingernail on left pinkie.
bruce -- I love it John
don48312 -- susanne, i wish them luck
duane -- I am concerned about the side affects. But will discuss in more
detail on Monday with KDA doctor. Lori's not excited about the Lupron and
references to "chemical castration". Go figure.
butch -- Duane--I'm sure the wives wouldn't like castration---BUT, I'm
darn sure we wouldn't like it AT ALL.
bruce -- If I remember this correctly, there was something about the
patient becoming weaker initially and then stronger as time went ont.
bruce -- I just confirmed what I thought I read about Peuprorelin:
Initially the weakness was exacerbated -decreased motor skills.
susannew -- Duane: I don't think any of the wives would be thrilled with
the chemical castration - a less glamorous side affect. But... to me, this
is a first step. If it works, they won't stop there. Research will
continue and I'm sure they'll find another drug compound that can work
without all the side affects. But it will be something as a first step.
vic -- Not thrilled myself about the chemical castration, but right now, I
think walking is much more important.
vic -- I don't know if this is a rude question, but what are the age
groups or the participants? My husband is 35.
bruce -- I am 56 years young
vic -- Bruce, when were you diagnosed?
bruce -- I had the symptons in the late 20's and early 30's, but had the
DNA test in 1997.
don48312 -- 59 here. wife is much older
butch -- Hey Don--That remark about the older wife may cause you alot of
stress.
don48312 -- i been living with mrs stress for over 35 years
bruce -- You are in rare form this morning Don
susannew -- Vic: HOw old is your husband? When was he diagnosed?
vic -- My husband is 35. He was diagnosed last January, but had the
symptoms for about 4 years. Went to a neurologist, complained about
weekness in his hand, mentioned he was concerned about a muscular disease,
and the doctor told him he was too young.
susannew -- Vic: THe good thing about this disease is that it is "SLOW"
progressing. And, an individual with KD can live a normal life span. It
could have been ALS (Lou Gehrig's Disease) - in which progrssion is very
rapid and a quick passing. And, in a time of high technology in which we
have hope for a cure in our lifetimes.
bruce -- And, if not a cure, perhaps a treatment
duane -- AMEN!
vic -- Hoping for at least a treatment. Are they going to be testing the
leuprolin on humans soon?
murf -- double AMEN!
susannew -- Still in the year ahead for the KDA: Hoping to fund the Mouse
Model grant - Dr. Lieberman at the University of Michigan - soon! We now
have $23,000+ in the fund - thank you to all who have donated!!! This will
be a reality! We're so close now, so please help us get to the $25,000
goal.
susannew -- We will also be giving updates in regards to the $25,000
granted to Dr. J. Paul Taylor at the University of Pennsylvania. We are
excited to see his progress with the fruit flies and the information that
will come from that!
susannew -- Terry, my husband, was diagnosed at age 35. I was 27 at the
time. If I can be unprofessional and just say, "it sucked". If you'd like
to talk off line, just call us. Our phone number is on the Web site:
www.kennedysdisease.org
susannew -- Terry had symptoms back into his 20's, but we never knew what
it was. Just figured the cramping and muscle twitches were normal for
everyone as we age.
john-c. -- I had symptoms from about 15 on, but thought I was clumsy (fall
down all the time, etc. Also has the first mastectomy at 30 . Looking
back, it was there forever.
mikeg -- Has anyone heard of or tried horseback riding for therapy. I
contacted a local chapter of the North American Riding for the Handicapped
Association, Inc. - NARHA. They claim to have quite a few MD patients that
get beneficial results (like better balance) from riding. The web site is
http://www.narha.org
susannew -- Mike: I volunteered at MACH1 (Move a Child Higher) - horse
riding for children with MD, Cerebral Palsy, Down Syndrome and Austism. It
really was great to calm an Autistic child down, but for Cerebral Palsy
(if brough in as infants) there were miraculous results with muscle
development. We plan to get horses soon - one for me and one for Terry and
friends to ride. We'll let you know if it helps. The type of riding MACH1
did was therapeutic without saddles for the Cerebral Palsy children, we'd
lay them sideways on their stomaches and we'd hold them their...
eventually when enough strength was gained, we'd graduate them to a
bareback pad or saddle.
mikeg -- Susanne: I thought that this organization was for children too
until I called and found out that they are exclusively for adults. Totally
free too - funded by government grants. I'm going to give it a try - can't
hurt (unless I fall off the horse. LOL) and probably will help from what I
heard from the owner. It's a bit far from us - about an hour and a half
drive. but if it does help it will be worth it!
susannew -- Mike - that's great! Let us know if it helps you!!! I'd love
to know the exercises they will do with you there also - please let me
know so Terry can try them here once we get a horse!
mikeg -- Will do.
john-c. -- Give it a good try, Mike. You are suited to ride. I am scared
to death up there.
duane -- I think the most difficult part would be getting on the horse...I
doubt I would have trouble falling off! LOL
mikeg -- I think I'll have a LOT of assistance there. I hope so - cause I
couldn't get on a horse by myself if my life depended on it!
pa-paul -- Yeas Mikeg it would be of interest to all MAYBE AT next CHat
vic -- My husband had dirt bikes, but decided to sell. He never liked
riding a horse before because "he wasn't in control", but maybe he'll give
it a try now.
susannew -- Mike, They will have a riding block most likely. You'll go up
a few stairs and be at the same level as the horse. We'll be building one
here for Terry. THere's no way he could pull himself up by himself.
don48312 -- go up stairs, u gotta b kidding, lol
pa-paul -- Mikeg do you have a date for when you are going to try it?
mikeg -- pa-paul: Probably later this week. I'm going to call then on
Monday and see when I can come out.
susannew -- Sure... just have them push up on your butt like I do with
Terry!!! : ) MIke, you better make sure that's ok with Paula! She'll
wonder what's going on there.
mikeg -- Susanne: I wonder if I can get an elevator or escalator? Stairs
is a bad word!
butch -- Instead of steps to get on the horse, how about an elevated ramp
to the height of the horse? That way you could go up the ramp in your
chair and get off the horse the same way.
mikeg -- I like that idea, Butch!
vic -- Nothing unprofessional about that, it just sums it up perfectly.
john-c. -- lol Don-I'm really s l o w today
don48312 -- morning john-c
don48312 -- john-c, did ya get the irs pubs on disability tax issues to
pass out?
john-c. -- yes Don. It was really helpful for all.
murf -- John-c - how about the joke of the day?
john-c. -- Joke of the day is from John M. in FL who is kind enough to
send me his best ones: A small boy was lost at a large shopping mall. He
approached a uniformed policeman and said, "I've lost my Grandpa!"
john-c. -- ..........The cop asked, "What's he like?"
susannew -- Go on...
john-c. -- ..........the little boy replied, "Jack Daniels and Blonds."
murf -- I LOVE IT!!
billeric -- Oh, good one John.
don48312 -- go on
duane -- OUCH !! Don't quit your day job.
john-c. -- >>> One of the guys at work wanted to know how long I was lost.
pa-paul -- GOOD ONE jOHN
susannew -- : )
john-c. -- Thanks to John Mengel for that one
butch -- John C--when did your grandson lose you at the mull?
don48312 -- mike and i have heard all of john-m's jokes.
vic -- good one
john-c. -- Butch: do you work with me too? lol
susannew -- We now have a volunteer, Thanks Bruce, who will sift the
Internet regualarly for new KD medical articles/publications and updates.
We've done so in the past, but not as regularly as we should. So,
hopefully we will be doing a better job keeping on top of this area of the
site!
duane -- Thanks Bruce
susannew -- Butch: LOL!!! grandson lose JOhn at the mall.
don48312 -- we are going on a caribbean cruise on jan 31. we will not take
our horse
butch -- Thanks to the DOD. You guys give us direction. Together we can do
what we cannot do alone.
murf -- I hear that duane
susannew -- Your right Butch. There is strength in numbers! And the
information sharing is so important. You may know something we do not -
perhaps something you've found in your own research and reading, or your
doctors, or etc... and if its not shared, others cannot benefit from it.
That's why the chats are so valuable in my opinion!
don48312 -- DOD??????
butch -- not DOD but BOD boad of directors.
don48312 -- gotcha
vic -- bruce-how long did that last?
bruce -- This was in the mice models, so it appeared in week 4 and they
began to see positive results in week 8-9. Translate that into human years
and you will know the answer. SORRY i don't have that calculation at hand
this morning.
murf -- Susanne asked if we wanted a conference this year. Anyone
interested?
pa-paul -- Yes I MAY be interested need more info
don48312 -- we have not discussed this years conference as of yet. sorry
susannew -- I threw it out there, but noone commented about a national
2004 Conference and Symposium in San Diego in October.
don48312 -- we = judy & i-
susannew -- Don: Aha - sorry! Misunderstood!
john-c. -- IF we have a conference, someone will need to Chair it and will
need the help from about 4 others for the 6 month duration required to
"dot the i's , etc".
billeric -- I have been a poor participant in the conferances Susanne but
would sure try my best to make it to San Diego.
john-c. -- ......So, there are eleven folks here this AM: anyone willing
to start the process for the conference?
mikeg -- john-c: it sure did get quiet after that question...
john-c. -- I would go to San Diego for the conference. That's where I'm
moving to when I'm finally homeless as it's too cold here.
butch -- It would be extremely hard for someone on the east coast to set
up a convention on the west coast. I don't know how John, Murf and Susanne
and Terry did last years convention with all that distance between home
and the convention center.
susannew -- Butch: Magic!
mikeg -- How about Orlando?
john-c. -- very perceptive, Mike. I would be willing to help out whomever
wanted to carry the ball, but I'm still at my day job for 65-70 hours/week
and cannot afford the 100+ hours that it takes to do this properly this
year.
mikeg -- Luck to still have a job!
mikeg -- We've got enough people in Florida to share with the
responsibilities.
susannew -- One individual from last year's committee would need to be
involved in a 2004 conference committee. Noone has to reinvent the wheel.
But we need the help to get it done. And, of course the BOD would be
involved in helping make decisions - the committee would do the research
and propose their thoughts and plans to the BOD.
bruce -- It appears that the level of interest in a San Diego conference
is minimal and the level of support for volunteers for it is even less. Am
I reading this correctly?
susannew -- Bruce: At least in the chat room - we haven't put this out to
all associates yet.
susannew -- It would be great to do Orlando... maybe in the future years.
But I think we owe it to the West Coast to have one here also - some
individuals cannot travel great distances... If on the west coast its only
a short hop by plane for someone, versus a 4-6 hour flight and airport
trip.
john-c. -- The key element (besides the tremendous value of getting
together) is the ability to have KEY Drs & Researchers in the same city
/same time for a much larger conference: we just tag along.
butch -- Is eight months long enough to bring a conference together?
susannew -- Whether we have a full-blown conference or not, I still think
we should hold a Symposium for the researcher's/doctors while they are in
town. IN the symposium they share their information, research from their
different disciplines and brainstorm together. This time is very valuable.
I volunteer to go to San Diego to just do the Symposium if that's what we
wind up doing.
mikeg -- That's true the west coast needs to have a turn.
john-c. -- IF we want to have it (wrapped around SFN) we need to start
now!
susannew -- Eight months is enough time to put it together, but we need to
measure interest and decide to do so quickly. The toughest part is finding
the location to have it!
susannew -- Hotels book up for meetings well in advance.
pa-paul -- Good Idea Susanne
john-c. -- We have had the benefit of the SFN's great personnel
inassisting with the hotel last year. I spent about 8 hours with them
before we landed in NOLA at the hotel.
don48312 -- SFN?????
john-c. -- Society For Neuroscience, a 24,000 person group of Drs &
Researchers from around the world. That's why we were in NOLA and are
looking to San Diego. It's not where we choose, it's where the folks are
already going to. ......and it's not a question of "turn".
butch -- We need to spend more time with the Drs and researchers to let
them know our challenges. Sometimes we can lead the way for health issues.
Some of which we have already conquered.
mikeg -- Good poiint Butch - another benefit.
susannew -- If we did hold a meeting on the West coast, I'm sure we'd
still have some individuals from the East, Central states who would come,
just as when we had on the east, those from the west and central came. But
it would give those with travel difficulties, whether its the time factor
or those who hate to fly and want to drive in, a chance to experience the
Conference. It is an amazing and for some life/hope altering event!
don48312 -- I AGREE WITH THE WEST COAST. ITS THEIR TURN
butch -- Hey Don--If it is on the west coast, we can still stop in Los
Vegas on the way home.
don48312 -- ill b in LV in the spring
susannew -- Don, when aren't you in Vegas?
don48312 -- when i'm in Biloxi
butch -- I said Los not Las Vegas. Los is close to LOST. LOL
don48312 -- i spent 4 months vacationing at the Marine Corps Recruit Depot
in San Siego
susannew -- The researchers really enjoy and benefit from meeting those
with KD in person - to hear what we go through. Since most of their work
is done in the lab and many of them are not clinical doctors, they rarely
get to see a KD individual.
don48312 -- sry, i figured out what the SFN stands for
bruce -- I think it is time to send out something to the associates on the
conference and see what the response is and if any are willing to
volunteer. San Diego is a great vacation spot.
duane -- I meet with MDA Dr. monday to discuss in more detail Lupron
treatment vs. Rilutek. I'll send info to you bruce for distribution.
bruce -- Sorry, I got that wrong. The weakness was right away and after 4
weeks muscle fibers increased.
susannew -- Ed Meyertholen is planning to run in the 2004 Boston Marathon.
He is looking for sponsors and individuals to pledge for his run for KD.
We need someone to help locate corporate sponsors. Any one interested in
helping out. Its just a matter of getting on the phone and talking to
marketing and/or goodwill departments of corporations. In return, he'll
wear their logo on his shirt and any publicity we receive, they will be
mentioned when possible.
murf -- Friends just dropped in so I should go. Talk to some of you in 40
minutes.
murf -- Take care all!
murf -- {goodbye murf}
vic -- thanks for all of the information, but got to go. Nice talking to
all of you.
susannew -- I know we've said it before, but we will have the neurologist
mailer out in the next 2 months. I am committed to making this happen. Its
been a low priority - probably because I know it will require us to do
more work - as we will reach those with KD without computers and email -
of course this is the most cost-effective way to communicate, but we also
need to reach others who can't get to the KDA electronically. It will mean
doing mailings also.
susannew -- Take care Vic. If you'd like to talk to another like you, call
me.
vic -- {goodbye vic}
mikeg -- I gotta go rewind the sundial...
susannew -- That's the tough part of running a non-profit org. You need
volunteers or you can't do the things you need to or grow. If we could
afford it, we would just hire someone. But we can't afford to do that!
susannew -- We need to be fiscally responsible for the precious donations
we receive and make those dollars spread - and most of them are slated to
go towards future research grants.
don48312 -- {welcome don48312}
susannew -- The Questionnaire has been tallied! We are awaiting the full
results from Sue W. who did the tallying. Then we can decide how to
publish the information to all and slice and dice the info. for any kind
of interesting correlations or items of note.
kristykendle -- {welcome kristykendle}
susannew -- Good morning Kristy. Does someone in your family have KD?
kristykendle -- no but my lil girl has CMD
susannew -- I'm sorry to hear that. What does CMD entail?
kristykendle -- She is mentaly 100% normal it is just her muscles they are
very weel, can't stand or walk
kristykendle -- week not weel
susannew -- Kristy: That is so much the challenge for those with MDs...
How old is she?
kristykendle -- 19 mo old suesan
susannew -- Did you know from the start she had CMD?
kristykendle -- 5 mo. old we found out, no one in our family has MA
kristykendle -- MD--OPPS
susannew -- Kristy: Kennedy's Disease is an adult onset lower motor neuron
disease - similar to ALS Lou Gehrigs, but slower progressing. Mostly
affecting men - age of onset is 30-50's generally. Some female carriers
show symptoms as well.
susannew -- Does the MDA have a chat for CMD? If not, you might want to
approach them about starting one for support for the parents.
kristykendle -- no they don't have one
susannew -- Is CMD genetically inherited? Do they know that yet? KD is an
X-linked gene that gets passed on...
susannew -- You might take the ball in hand and approach the MDA> They are
great about starting the chats for people who want to do so. Once they
have established a chat, they might be able to publish its availability in
their magazine and that could help you get in touch with others with CMD
in their family.
kristykendle -- thank you for the explanation, i'm on some chats to find
if they are close to CMD i guess this is not close at all
kristykendle -- yea i guess , in a way they all (43 types of md) are the
same
kristykendle -- thanks suesan -chat again
susannew -- On another note: The doctors/researchers transcript from the
2003 conference has been transcribed. Now we just need the
researchers/doctors to review, make any corrections, and then we can post
to the KDA site!
bruce -- I have to run for a couple of moments. I will talk to you
shortly. Be safe and healthy...
bruce -- {goodbye bruce}
susannew -- 15 minutes left...
don48312 -- does anybody use a NEBULIZER?
john-c. -- not me
billeric -- Nope.
pa-paul -- what is nebulizer??
duane -- not me
susannew -- Terry does not use a Nebulizer, but has thought about getting
Bi-Pap/C-Pap for sleeping at night.
don48312 -- when i get a cold, i have mucho troublle caughing up the phlem
in my chest. my neurologist thinks a nebulizer will help
butch -- Don--drink a shot of burbon to cut the phlem. If it doesn't
work--you won't care. LOL LOL
susannew -- When Terry is sick he chokes constantly - perhaps he should
check into this Nebulizer idea.
don48312 -- a nebulizer facilitates getting meds into the lungs
mikeg -- One thing that I noticed about everyone else (even my brothers)
with KD except me is that no one can cough hard enough to bring anything
up. I still have plenty of pulmonary function left. Does anyone else with
KD have a strong ability to cough?
susannew -- Terry can't cough strongly at all Mike.
mikeg -- That's what I'm finding... guess I can count my blessings.
john-c. -- Nice to with you all this AM....."see" you next time. Stay
upright.
susannew -- Bye John.
john-c. -- {goodbye john-c.}
don48312 -- cya john-c
butch -- So long John C. Stay healthy.
don48312 -- gotta go. great chat, bye all
pa-paul -- thanks Don
don48312 -- {goodbye don48312}
duane -- Breakfast is ready...gotta run. Stay safe and healthy
butch -- Good bye, Duane.
susannew -- Take care Duane.
duane -- {goodbye duane}
susannew -- Its close in that we are all going through a tough time in our
lives and face the challenge of losing muscles and ability with no cure or
treatment at the time.
susannew -- 5 minutes til the end of chat.
billeric -- Good chat folks. Susanne, would you check my e-mail address in
the log. I hate to miss out on the KD stuff. Thanks and thanks for hosting
the chat.
susannew -- We sure will Bill.
butch -- Has anyone heard from Patrick lately?
susannew -- Yes, in December. I wrote him. He said he's doing better. His
meds had him messed up but he's now getting that cleaned up. I'm glad to
hear that.
kristykendle -- Bye -good day all
susannew -- Take care Kristy! When there is a need - which I think there
is with no CMD support or chat - someone needs to make it happen. Perhaps
its you that will lead the way. We all need to talk to others who share
our same situation - it really helps to learn information and for support
- I didn't believe that until we started the KDA - its really helped me
open up and learn how to accept KD in my life.
mikeg -- Take care everyone and stay warm! Until next time... so long.
butch -- I must go for now. Stay healthy and happy till next we chat.
susannew -- Til next time! Take care....
butch -- {goodbye butch}



END CHAT