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Kennedy's Disease Chat Transcript  11-29-2003

Topic:  Other ways of doing things

Host: Terry Waite


Chat Participants:



terryw -- Hello Michigan
butch -- {welcome butch}
terryw -- hi butch
bruce -- {welcome bruce}
bruce -- Good Morning Ron, Terry and Utah
terryw -- I have to let you know now that I need to leave the chat in
about 20 mins to return a trencher I rented that needs to be returned by
8AM pst
terryw -- I forgot all about that
terryw -- the return time was in the middle of my chat
terryw -- Here is the first tip to make things easier. Hiking sticks help
you to get around property that has eneven terrain. Use the type that the
apls trekkers use.
michigander -- Good morning Terry,Butch & Bruce
butch -- Good morning guys. How are both of you? Glad to hear from you too
Bruce. How was your turkey day?
bruce -- It was great! The benefits of being near family again keeps on
racking up. How was your's?
michigander -- Turkey day was a wake up call for me that after 10 years of
having KD kick in...the last couple years I've had 10 pound weight surges
totalling 30 pounds and its time to stop
bruce -- Utah, I have gained six pounds since retirement. I need to take
that off before spring. I need Terry's diet...
butch -- You needed a work day just to burn off the extra calories.
murf -- I gained 5 lbs in the last 2 days.
terryw -- We had a great TUrkey Day and then yesterday was a work day
since I had relatives visiting. They helped me put in a drainage trench.
terryw -- I put my relatives to work while they are visiting. They help
out a lot.
terryw -- I was crawling around in the dirt all day laying in glueing
pipe. I was on my butt most of the day but I still feel like I have beat
with a bat.
bruce -- Terry, relatives and friends are great to have around. I think I
make an excellent supervisor (even though the help doesn't think so)
billeric -- I don't mind crawling around in the dirt Terry. My problem is
I can't get up once I am down
terryw -- Bill I found an easy way, I would put one foot down in the ditch
and the other on the flat ground and I could get up easier.
bruce -- Utah, do you have any family living near you now?
butch -- Bruce you missed a very good and informative convention. We
missed you also.
don48312 -- {welcome don48312}
bruce -- HAPPY TURKEY, Don
terryw -- Hi Don
terryw -- Hi Bruce
murf -- {welcome murf}
don48312 -- hi all
murf -- good morning all
terryw -- Hi Murf
bruce -- Good Morning, Murray
butch -- Howdy Murf. How is Texas treating you?
murf -- Hi guys, how was the Turkey?
terryw -- Thank Bruce
billeric -- {welcome billeric}
bruce -- Welcome, Bill
terryw -- Hi Bill
billeric -- Mornin' guys
butch -- I want to thank everyone who bought the lottery tickets to
benefit the KDA. If anyone thinks they can sell some tickets at work or
around home, let me know. I'll be glad to send some to you. Thanks again.
terryw -- Butch I have a winning one! remember that LOL
butch -- There are 29 winning tickets.
bruce -- Another tip: Keep folding chairs in frequently used areas in case
you need to get up off the ground or floor.
murf -- Good idea bruce!
bruce -- If Cindy is gone, knowing that a chair is nearby helps.
billeric -- That is a good idea Butch. I had to crawl from the front yard
to the back last week to get up.
bruce -- Another spouse of a KD'r had an excellent idea a few chats back.
Buy a set of those walkie-talkies and give one to your spouse when you
leave the house to work in the yard. I could have used one the other day
and now I am in the market for a pair.
butch -- When you are on the ground we always have time to think how to be
able to get up the next time. Amazing how creative we become.
terryw -- I went to my local fire house last week and talked with them &
the paramedics about KD and the choaking problem so they know what to do.
terryw -- I have had choaking spelles numerous times everyday this month,
3 times were the worst ever and I thought I was going to die. my airway
stayed closed for up to 2 mins with no opening at all.
don48312 -- terry, r u on any cold meds?
terryw -- No cold meds don
billeric -- I feel for you Terry. I choked at Thanksgiving dinner but
thanks to you guys I tried to relax and it worked. Scared the heck out of
michigander -- I also get airways cut off every couple months or even
three times a month...dryness...a breeze...dusty
anything can do it...and extra air conditioning makes me cough alot...but
amazingly winter seems to dry the throat up from coughing
terryw -- I feel like I ripped something in my throat or tore something, I
get sharp poking pains right near the adams apple that triger the
choaking. I am gonna have my doctor sent me to a Throat specialist to get
me checked.
murf -- Terry - That may be what is triggering it.
murf -- I was in Dallas last week for meetings when someone decided to
call a fire drill. I was on the third floor. My legs haven't worked since.
bruce -- Murray, been there and done that! It is a killer.
bruce -- Hint: Murry made me think of this. I was assigned a buddy when I
checked into hotels just for that reason. They had the job of making
certain I was safe going down the stairs. I am not a speed demon taking
stairs any more.
murf -- I stay on the bottom or close to it floors. for that reason. I
could go down stairs real quick! LOL
billeric -- Michy--We did get to Utah but snow drove us out the next day.
We had already been snowed in in Rawlings, Wy. Sorry we didn't get to
talk. My e-mail is now This email address is being protected from spambots. You need JavaScript enabled to view it.
terryw -- I need to take off everyone. Sorry about this I was looking
forward to this chat. I guess I will have to just read the transcript.
pinkie -- {welcome pinkie}
gary -- {welcome gary}
terryw -- Sorry have to run. Bye
pinkie -- hello, David pinkerton here
billeric -- Anybody want to share the newest dope or revelations that came
out of the conferance?
terryw -- {goodbye terryw}
bruce -- Alright all of you creative geniouses out there. Tell us your
secrets - those other ways of doing things.
don48312 -- any research news from conference???
bruce -- David, welcome. Are you a KD'r?
pinkie -- yes; I have KD
gary -- {welcome gary}
bruce -- Welcome Gary
murf -- Bruce - David was at the conference.
murf -- Good morning Gary
gary -- I am listening chat today.
pinkie -- we are having a snow storm today here in OTTAWA
bruce -- The subject for today is "Other ways of doing things". How we
keep mobile, constructive, and creative with KD. Terry had to leave to
take back a trencher and asked me to take over as moderator.
chuck -- {welcome chuck}
bruce -- Welcome, Chuck
murf -- Bruce - you get your better half to do it! LOL
bruce -- Murray - a good one! Cindy does 95% of the work and I supervise
(when she hasn't taped my mouth shut or locked me in the office).
murf -- I know what you mean. Karol does that to me all the time.
bruce -- Hint: I have talked about this in the past. The UP LIFT seat is a
great invention. I take it with me whenever visiting people that don't
have bar stools or into restaurants occasionally.
murf -- Bruce - what is that seat?
bruce -- It is called an 'Up Lift' seat. My brother and I have one and it
is great. It has a hydraulic or gas operated cylindar to lift your but off
the seat 12 to 15".
don48312 -- i tred the UPLIFT, but found it didnt work for me
bruce -- Don, what didn't work for you?
don48312 -- bruce, the UPLIFT
mikeg -- {welcome mikeg}
billeric -- Someone mentioed a few chats back that a toilet stool riser
was available that had a carrying case for when you travel..Anyone know
the name of that device?
pinkie -- my mom has the toilet seat riser, is it ever good
bruce -- I use a 'Tall-ette' for the 'johns' away from home (especially
needed where the handicap stall isn't really handicap accessible.
pinkie -- My mom's is just a large plastic doughnut
bruce -- The Tall-ette is a six in high plastic seat that fits over the
john to give you height and better leverage when it is time to get up.
pinkie -- It seems so long since the conference...a lot happpened there
murf -- Billeric - there is a link on the spead sheet I handed out at the
billeric -- Thanks murf. Is that now part of the home page?
murf -- Susanne the question was; is the spead sheet going on the web
susannew -- Bill: The last chat transcript contains a lot of information
from the conference. I'm not sure if it was sent out yet, I know Terry was
going to do that. But its posted on the site under chat transcripts. We
also have a volunteer transcribing the doctors/researchers session - we
recorded it versus video taping this year.
susannew -- The spread sheet? Do you mean the questionnaire results?
murf -- No the spead sheet I compiled with links to web pages.
pinkie -- I am still ecxited and baffled about the research they are doing
murf -- Susanne will be putting it on with all the presentations we have
permission for.
billeric -- Thanks Susanne. I will check the transcripts.
susannew -- {welcome susannew}
pinkie -- It did sound so promising
murf -- Morning Susanne
bruce -- Welcome, Susanne
pinkie -- we have a huge blizzard
murf -- I still have to write the text for mine.
billeric -- Hi Susanne
bruce -- Hint: High-top shoes (ankle height) help give you better support
in rough terrain.
don48312 -- hi susanne
pinkie -- hello susanne, david pinkerton here
michigander -- pinkie,WHERE did you say it's a blizzard??? snow here in
billeric -- It's got to be pretty, Pinkie
bruce -- David, I do not miss the snow at all.
don48312 -- what is 'snow'?????
bruce -- Don't rub it in!
pinkie -- snow is what keeps the whole world from invading CANada
pinkie -- The doctor that talked from Japan mentioned a drug starting with
L that is 3 months into human trials
pinkie -- He spoke near the end of the last day
bruce -- I am trying to find the exact spelling of the drug. Give me a
murf -- He is gathering 40 patients at the moment
pinkie -- It sent me spinning
pinkie -- He said that there was good results in the mice
susannew -- I believe the drug was Leuprolin? (SP?) But am not sure - Will
know for sure once the tape is transcribed.
pinkie -- Yes, susanne, i think that is it
bruce -- Thanks, Susanne. I have the exact name someplace, but can't find
it at the moment. Sorry
pinkie -- It seemed to me to be such science fiction
bruce -- The potential side effects of the drug are always a concern and
that is why the tests...
pinkie -- I have been startled ever since
susannew -- Dr. Sobue for the University of Nagoya Japan has done some
very promising research in which he's found testosterone actually affects
mice (male and female) in negative ways. So the thought is to limit
testosterone - as he's castrated male mice, he's found improvement.
Leuprolin (if that is in fact the drug) is a testosterone suppressant and
acts as a "chemical castration". However, there are other affects
obviously from reducing testosterone that aren't that pleasant. But it is
a choice that will have to be made if in fact this drug proves useful as
one of the first treatments of KD.
pinkie -- The guy from Japan said there was 9 more months to go for the
butch -- It all sounds great except for the castration part. Count me out.
don48312 -- i was involved in a test at Henry Ford Hosp where we were
given Leuprolide to inhibit the testosterone. i became extremely weak
during the test.
susannew -- Don; That may be the drug. I'm not sure on Spelling!
don48312 -- was part of an experement at OHIO state univ
susannew -- Once we know for sure the name of the drug we can let everyone
know. Its on the tapes. ONce the tapes are transcribed we will post to the
site and send out to everyone. It takes time though. THey have to be
transcribed and then reviewed and approved by our SRB before sending out.
butch -- I still think there must be some drug that would help us to
maintain the muscle mass we have. We are not looking to be body builders
but, body savers.
bruce -- I found it: Gen Sobue, MD, PhD Department of Neurology, Nagoya
University Graduate School of Medicine has been kind enough to share some
preliminary information in regards to a clinical trial: "We have started a
placebo-controlled clinical trial of leuprorelin for SBMA patients. We are
carrying out to administer the drug to the patients for one year trial
span, and measuring quantitated muscle strength, ADL score, EMG measure,
serum CK and several other markers. Although its efficacy was profound in
our basic research with transgenic mice, leuprorelin has potential adverse
effects including anti-anabolic effects, infertility, dys-erection, and
psychiatric problems such as depression. Therefore, as we discussed with
Prof. Fischbeck, the plan of next clinical trial, that would be
multi-central study, should be based on the forthcoming results of our
trial in Japan. We hope that our trial would be a hope for SBMA patients
and their families.
susannew -- Thanks Bruce!
susannew -- Good morning - sorry was catching up. I woke up to see Terry
leaving and realized the chat had barely begun. I know he was going to
come in and have to leave early, but thought I'd pop in to see what's up!
michigander -- Has anyone tried an AFO or is it IFO to keep legs and
middle of body from wabbling???
pinkie -- I am not sure what AFO is
gary -- What stands for AFO and IFO?
susannew -- Bruce: What was the topic for today?
bruce -- Other ways of doing things
mikeg -- Good morning Susanne! We woke up to a chilly 41 in Tampa this
morning. I was catching up on reading this chat when I saw that Terry is
having quite a few choaking spells... is he taking Neurontin? I haven't
had a choaking or dry drowning incident since I started taking it.
susannew -- No. He doesn't take Neurontin. He takes Ultram for pain and
Klonopin for relaxing/sleeping through the night. Perhaps he should try
it. Neurontin is for muscle spasms right?
murf -- I've only had choaking spells once or twice a month. Just lucky i
bruce -- I rarely have choking spells any more. It used to be a regular
thing with me. I only have them now when I try to talk or take a breath
while eating.
pinkie -- I need to start taking something to help me sleep at night
mikeg -- yes - it also helps me sleep at night. I don't know exactly what
causes the dry drowning but all I know is it has not happened to me in
over a year now.
bruce -- One thing that helped me was elevating my head while I sleep. I
bought an 8' foam wedge and it made all the difference for my night time
susannew -- The "dry drowning" is a laryngeal spasm. I'll have to ask
Terry to at least try it. When he get sick, he frequent attacks. When he's
not sick, he's fine. Perhaps the phlegm triggers it in someway.
don48312 -- Neurontin has many approved and non-appreved uses
murf -- Try a sleep study to find out if you have sleep acnia. You may
need a CEPAP machine
pinkie -- I, and my 2 brothers, have acid reflux quite a bit
billeric -- I have taken neurontin for several years. My neuologist
recommends it for pain. Haven't had too many episodes of choking.
bruce -- I can't remember the last time I woke up choking. For several
years it was a 2, 3 or 4 time a night ordeal.
pinkie -- I wonder if it is related to KD
mikeg -- I'd say for him to run it by his neurologist first and see if
would be a good thing to try. I know that's the first thing my doctor put
me on when I moved down here.
pinkie -- Yes, i have woken up choking
butch -- I found that snoring causes my choaking problem. The more I
snore, the tighter Mary Lou chokes me. LOL
susannew -- Pinkie: The Laryngeal spasm? Yes.
don48312 -- i found since i stopped taking 'Contact" which has an
anti-histamine, during colds, etc, i havent had a choking spell
susannew -- Butch: : )
bruce -- Good One!
pinkie -- I haven't choked for a while, i don't knowwhat to do about it
murf -- good one butch! LOL
bruce -- What are some more tricks of the trade - ways to get by - get
things done - etc.
susannew -- Have your wife do it! Hee Hee...
murf -- Thats what we're all saying. LOL
bruce -- Right on, Susanne.
butch -- David--I'm sure you learned alot about KD at the conference. What
helped you the most?
pinkie -- I do pretty much everything
susannew -- I think taking your time is definitely key. Terry pushes too
hard and overdoes it. A job that normally would take 3 hours might take
you 3 days. Breaking it up into different steps instead of pushing so hard
to get something done and overdo it.
pinkie -- I think seeing other guys that had it was somehow comforting
don48312 -- i was having trouble getting my butt up and back into a van
seat. we found putting Armorall on the leather seats made them just
slippery enuf to make entry much easier.
bruce -- Susanne, that is the hunter/gatherer way of doing things. When I
start something, it is difficult to put down until it is done. (DUMB!)
pinkie -- there was a lot of thing that alarmed me
mikeg -- Very well put, Susanne. We all need to plan for at least 2 times
as long as what something used to take
butch -- Not heat others have it also but, there is someone to share the
good and bad times with.
butch -- should be Not that---Sorry
susannew -- Bruce: I know - I'm the same way. Just push through and get it
done. But if you have the time, its best not to push too hard and feel the
pain later!
mikeg -- ... and now he will pay for it... may take him several weeks to
recover from what he just did.
pinkie -- I am so independant - losing my independance scares me
murf -- You could invit friends over for dinner and then put them to work
like changing light bulbs.
susannew -- I know. Last night he looked terrible after being out there
all day with my Dad and my mom's boyfriend (Yes, my parents are divorced!
Have been for over 25 years!)
bruce -- I couldn't agree more and practice it less, unfortunately. When I
do put something down until later, I and the project is often the better
for it.
pinkie -- I get my apt cleaned 2 times per month - that helps a lot
butch -- utilize all resources---
susannew -- Murf: That's what we did! My family comes to visit at Foxtail
Stables and instead of getting to relax and enjoy the beautiful scenery,
they are put to work!
susannew -- He also was extremely snappy from the exhaustion and pain he
was feeling. This happens frequently after he pushes himself too hard. So,
not only you suffer, but those around you also - even if you don't realize
pinkie -- I wish I could get someone to paint my walls and steam clean my
bruce -- We do something similar. Every time someone visits, we have
little projects that need to be done. They have been understanding and
helpful. The funny thing is that they keep coming back.
murf -- Most friends don't mind and always ask if there is something they
can do.
susannew -- Hmmm. Pinkie - now you give me an idea for another non-profit
organization! One that would help those with disabilities who can't do
repair/fix it work around their home...
pinkie -- Sounds great to me!
don48312 -- last monday, i worked as a security dispatcher from 7am till
9am, walked in the pool from 11am till 1pm, couldnt nap, then attended a
football game from 6pm till 1am. been paying for all that activity since.
pinkie -- I just don't thing I can paint the walls
murf -- Susanne - Not busy enough?
bruce -- I am THANKFUL for our family, friends, and support groups.
Without them I am not certain how we would fair.
susannew -- I believe others want to be useful and helpful. Now, I know
the jobs we have around here are pretty physical - tree trimming,
trenching for drainage, painting ceilings, picking up rocks from the
pasture... eventually, they might not want to come back!
susannew -- murf: No, I think I have 5 minutes a day that I could spare!
michigander -- My wife is a super wife and mom...since she's able its
difficult for others to see we could use help in the yard, garage, getting
heavy furniture out of the garage and into the house...things don't move
very fast and she has to be extra mighty doing things
murf -- I tell my guys that they sleep 8 hrs. a night, so must have the
time. LOL
pinkie -- All i do is take care of the basics - the rest doesn't get done
billeric -- pinkie--climbing ladders is almost a thing of the past for us
kd ers.
pinkie -- I don't use ladders
mikeg -- Has anyone noticed their fine motor skills are degenerating
faster in the non-dominant hand. I have had to improvise with everything -
from holding a nail or screw to putting on my clothes.
don48312 -- mikeg, i am losing fine tuning in Dominant hand
murf -- What fine motor skills?
mikeg -- I do good to get up one flight of stairs. With handrails on BOTH
pinkie -- I am so left handed - I hardly use my right hand. when i do i
make all kinds of mistakes
bruce -- Utah, Yes, I have had a similar observation. I now attempt to
exercise both my hands and fingers daily.
michigander -- Actually I'm right handed and the three fingers to the far
right started curling down and didn't come back up from years of
typing...had to give up typing as a job
mikeg -- When did you first notice the fingers curling up, michigander?
michigander -- Probably 4-5 years ago from a life-time of typing my right
hand started to go...and symptoms of KD have been since 1991??
pinkie -- I think hand are better used as objects of beauty rather than
bruce -- The cold effects my hands - strength and dextarity. If it is cold
outside, I lose the use of them quickly.
murf -- We can't handle the cold much. I don't know how some in Canada can
do it.
bruce -- Let's here it for our spouses and significant others! Without
them life would be a disaster.
butch -- Soo true, Bruce.
billeric -- Fully agree Bruce.
mikeg -- amen to the spouses!
bruce -- So often the spouses and S.O. also take the abuse when things
don't go right for us KD'rs.
pinkie -- I don't have sharp knives, they cut me too much
murf -- Thats cause we're so frustrated
pinkie -- I have had to become a philosopher to cope with kd
billeric -- your right murf. We tend to take our frustrations out on
whoever is the closest.
pinkie -- I live alone to spare anyone my wrath
pinkie -- we are having a huge snow storm here in CANADA right now
michigander -- What part of Canada is having the storm...maybe it's headed
this way??
pinkie -- OTTAWA
bruce -- Do you verbally abuse yourself, David?
pinkie -- I am a very gentle person
murf -- Cold here too 54 deg F
butch -- I don't think we vent our frustrations on just anyone, but the
ones who do the most for us. These should be the people who do the MOST
for us and the ones we should not aleniate.
michigander -- And Murf where is it 54??
murf -- Houston
pinkie -- I hate the cold weather, i might go back to NEW ORLEANS
pinkie -- I had a lot of fun there
bruce -- Has anyone used those 'grasping' devices shown on TV? The ones
that extend your reach to pick up things. Do they work for someone with a
weak grip?
murf -- Bruce - I bought one of those.
pinkie -- grasping devices are good - try it before yoy buy it
butch -- Yes Bruce, they extend the arm and don't require alot of
don48312 -- i got a grip bruce, and it works picking up morning paper,
don48312 -- but i would recommend getting one with a lock on grip
bruce -- So, the consensus is that the grip works. Interesting. Thanks
pinkie -- I need one of those things that can open jars
bruce -- Is there a particular make or model that you would recommend for
a grip?
bruce -- Chattanooga was 28 degrees 'F' this morning. TOO COLD for the
mikeg -- That's why we moved to Florida - to get down south where it's
warmer. But this morning is the coldest it has been in a LONG time... 48
right now. I heard it was as cold here as it was in Portland, ME.
chuck -- I strongly recommend visiting an occupational therapist. I just
visited one and got a LOT of help and ideas.
murf -- Should we buy orange stock?
bruce -- 15 minutes remaining
michigander -- I find frustration I tend to internalize but quickly put to
the back of my mind...but a knap makes being tired and frustrated go away
pinkie -- Does anyone else use a hotub? i find it great
bruce -- I have one, but I my muscles get too limp and I find it difficult
to get out afterwards.
pinkie -- Half an hou in the hotub and I AM GOOD FOR HOURS
michigander -- I don't have a hot tub but a tub as high as a hot tub
because a regular bathtub is to low to get out of
pinkie -- getting in and out can be dangerous
murf -- Bruce - thats why I don't get in one, can't get out.
mikeg -- Like everything else you've got to get in and out VERY slowly.
susannew -- Terry used to go in our hot tub all the time, almost every
night. But we don't have one since we moved.
billeric -- I am going to scoot.Thanks for the good ideas. Always pick up
something. Take care.
pinkie -- too bad - I use it everyday - sometimes 2 times a day
michigander -- I don't care for the water motion or hot tub affect on my
feet...and definitely stay away from showers after cracking 4 ribs
billeric -- {goodbye billeric}
susannew -- I see my mom out in the pasture digging - looking for a pipe
leak we have. I'm going to run and help her out! Take care all!
pinkie -- I do my yoga in it
bruce -- If it works - that is great!
susannew -- {goodbye susannew}
murf -- Bye Susanne
bruce -- Now Yoga is something I do every day. Between that and Qigong, it
makes my day.
bruce -- 10 minutes
pinkie -- must go, bye to all
mikeg -- If I lived in Canada I'd probably stay in one half of the day!
butch -- I guess it is about sign off time. Stay healthy and happy till
next we meet on chat.
bruce -- Take care, David
bruce -- Take care, Ron
butch -- {goodbye butch}
michigander -- Does anyone know if doctors have decided whether Viagra is
good or bad for KD??
murf -- Bye butch & David, take care
bruce -- I have found that stretching is excellent for my posture as well
as an anti-injury tool (for when I fall).
mikeg -- take care everyone.
chuck -- {goodbye chuck}
mikeg -- {goodbye mikeg}
bruce -- Utah, that is a good question. I don't know.
murf -- Does any one know?
bruce -- Of couse, if we were part of the 50% mice group, it isn't an
issue for them (whether it works or not)
michigander -- I find having grown up in Michigan and fallen on the lake
skating alot has not saved two teeth, or a few ribs or a finger from
taking a fall but must have saved the rest of my body
bruce -- I was referring to Dr. Sobue's tests.
bruce -- 5 minutes left
bruce -- Okay, the key question for today is: Noles or Gaters?
michigander -- What a Nole??
murf -- Gaters
bruce -- The second key question is: Who is better - USC or LSU?
bruce -- And, the third key question: Can anyone beat Oklahoma?
murf -- Good question
bruce -- Florida State
michigander -- IT's Michigan all the way!!!
bruce -- You can tell where my mind is right now. It is almost kick-off
bruce -- Michigan - I was so happy that beat Ohio State.
bruce -- ... that Michigan beat ...
murf -- Got to go. Take care all and stay on you're feet.
bruce -- Okay, we are almost done for today. Thanks for attending. Be
safe, healthy and happy until next time. You guys are great!
murf -- {goodbye murf}
bruce -- {goodbye bruce}
michigander -- MY parent's went to the U of M and I to MSU so Ohio State
has always been the arch enemy except in the case of ALS/KD research!
gary -- {goodbye gary}