Kennedy's Disease Association

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Kennedy's Disease Chat Transcript  07-24-2004

Topic:  Medications that Alleviate symptoms

Host: Susanne Waite

 

Chat Participants:

SusanneW
Bruce
MICH
FL-DON
Terryw
PA-Paul
JohnM
Duane
Doughboy
LouLou
heyvern
Bugsy
MikeG
Stevefu64

BEGIN CHAT

.

SusanneW entered the room.

MICH: Bruce, goodmorning from Utah.

SusanneW: Good Morning!

Bruce: Good Morning, Susanne

Bruce: Good Morning all

SusanneW: Wow - its been a while since I've hosted a chat! I don't think I've hosted since we got this new chat program!

Bruce: I think you will like the change

SusanneW: Just got back from Tahoe on business and now running to LA again tomorrow! UG - But... I plan for lite travel in August and NONE in September if I can help it!

Bruce: That will be a nice change

Bruce: How is your horse doing these days? Are you getting any riding in?

SusanneW: Yes, it will - Terry is starting to wonder what I look like!

Bugsy: goob morn fr

Bruce: Kelvin, I could use a little of your summer temperatures about now. How about sending some our way.

Bugsy: ok

SusanneW: The horses are just fine - I haven't ridden as much as I'd like to ... every spare moment is taken working on this place - today we will be digging 4" of dirt out of the stable boxes, putting in pea gravel and laying down stall mats... we're having a couple neighbor boys come help - no way I can do it all myself!

LouLou entered the room.

Bugsy: i will send it by email he he he

SusanneW: Bugsy and MICH - I don't think I've chatted with you all before! I'm glad to see new faces in chat!

SusanneW: Lou Lou - is that you ROn?

MICH: Susanne...since I found your chat sight in the Fall....I've really gotten enlightened about what's going on with KD and thank you and Terry very much

Bugsy: yes susy nice to meet you

SusanneW: You're welcome- everyone involved in the KDA - volunteers, Board of Directors, Scientific Review Board, Associates and Donators all should be commended for helping the KDA grow and keeping the momentum going!

LouLou: Good morning all. Hope everyone is OK.Susanne--Yes it is Ron. Had to change my name to get on the chat.

Bruce: I received an email from Jim Nolte. He sent several pictures of his ATV. He joined a club of ATV'rs. The pictures showed his ATV totally covered in mud and I asked what he looked like afterwards. He said he was 25 pounds lighter after removing his clothes and showering. It sounded like great fun.

SusanneW: Ron: How is Annette? I miss her!

heyvern entered the room.

LouLou: She is good--Now in Hawai vacationing.

Bruce: Hey Vern, how are you?

SusanneW: Hi Vern - is this Quimby?

stevefu64 entered the room.

SusanneW: Good Morning Steve.

stevefu64: good morning

SusanneW: Today's topic is "Medications that Allieve KD Symptoms"

heyvern: Hey SusanneW and all. Yes this is your missing friend VernQ

LouLou: Bruce--you asked me a question earlier in the week--Yes I would be honored.

SusanneW: Its been such a long time Vern! I'

SusanneW: I'm glad to see you are joining us!

FL-DON entered the room.

SusanneW: Good morning Don - how iS Judy?

FL-DON: GM SUSANNE. JUDY IS JUST FINE

SusanneW: Lou Lou - if it's what I think -GREAT!

Wizzer entered the room.

Bruce: Ron, thanks. Would you mind sending an email to Susanne and reflecting your interest? That will make it official.

SusanneW: Hi Wizzer. Where are you from? Do you have KD?

heyvern: It's good to be back . maybe now that I'm not working sarurdays any longer I can join you more often.

SusanneW: Bugsy - where are you from?

SusanneW: MICH - I'm guessing MICHigan?

Bruce: Good Morning, David. I don't think we have met before. Were do you live in NC?

Wizzer: North Carolina. Yes about 8 years.

Wizzer: Hickory

Bugsy: //2 canada sask

Bugsy: saskatoon suzzane

Bruce: That's a nice area of the country.

MICH: Susanne...actually grew up and went to college in MICH but then to NY, Oregon and now in Utah.

LouLou: Once again--we KD'ers can't do alot as a single person, but as a group we can accomplish miracles.

JohnM entered the room.

Bugsy: yes very nice here we just fin our river roar!

SusanneW: Good morning John!

SusanneW: MICH - you have now thoroughly confused me - I'm blonde you know! : )

stevefu64: lol

PA-Paul entered the room.

Bugsy: yes very pretty too//0

SusanneW: Good Morning PauL!

JohnM: Good Morning All.

PA-Paul: yes yes GOOD MORN

FL-DON: SUSANNE, WE HAD A PICNIC HERE IN SUN CITY CENTER WITH 5 KD PATIENTS ATTENDING WITH THEIR CAREGIVERS, A FEW WEEKS AGO!

Bruce: What is a river roar?

SusanneW: That's great Don! That's exactly the kind of meetings we'd like to take place all over the world - regionally.

Bugsy: boat racing the best in northern america

SusanneW: 5? Let's see - I know you, Mike, John... who else?

JohnM: A good time was had by all, I may add, Don.

FL-DON: the subject of blonds came up several times

SusanneW: Alright... what do you call a blonde in a jacuzzi?

MikeG entered the room.

Bugsy: since all blondes ...........do you have blue eyes???

SusanneW: Good morning Mike - How is Paula?

SusanneW: Bugsy: I have eyes that change with the colors I"m wearing - green - blue - gray

MikeG: asleep

SusanneW: Lucky her!

stevefu64: where;s ur hubby susanne???

MikeG: she needs her beauty rest...

Bugsy: oic contacts lol

SusanneW: I've already fed the horses, 8 feral cats, 4 house cats, pulled some weeds, trimmed some rose bushes, raked out stalls, and watered down stalls!

MikeG: how are you guys doing?

FL-DON: fred, rich, jerry, john & don. mike was on vacation

SusanneW: Bugsy - no natural! I had Lasic 5 years ago!

Duane entered the room.

Bugsy: what about changing diapers .....kids?

Bugsy: oic

SusanneW: Is Fred, Rich and Jerry "registered with the KDA"?

SusanneW: Good morning Duane - or should I say Lori?

SusanneW: No kids! I don't have time!

Duane: it's Duane good morning all

FL-DON: dont think so susanne, not yet. but we are working on them

Bugsy: he he he ..kool

MikeG: Susanne, is Terry riding horses these days?

SusanneW: Great! Good to see you at the keyboard!

JohnM: Fred Foge, Rick & Jerry Hamblin

Duane: are we talking meds today?

JohnM: Fred from Orlando & Jerry &

FL-DON: fred from orlando, rich and jerry from venice fl area

SusanneW: We did get Terry up on his horse about 4 times now... We use one of those step stool things that fold out... We made sure to buy the right horse for him - Beau is gentle, solid, and doesn't spook easily - he's perfect for beginners...

Duane: how is terry adapting to horse riding?

SusanneW: The whole plan was to give Terry legs through the horses - now we can go on "hikes" (Trail Rides) together - we used to love to hike and can't anymore - so one needs to find solutions...

FL-DON: morning mike & john

SusanneW: Yes Duane - Meds is our topic

Duane: is it too early to tell if it helps with balance.

JohnM: Morning Don.

MikeG: The last day of riding for me was a few weeks ago - I rode bareback!

Bugsy: i would,nt mind getting a cyldes dale my self

heyvern: I'd just like to be able to get on the first rung of a step stool. No horses for me anymore!

MikeG: morning Don

SusanneW: He's doing well - he just goes at a walk - no running which is just fine. We don't want him bouncing around up there and falling off - at a walk he's fine and balances well.

Duane: LOL

FL-DON: heading for las vegas 2morrow morning. gonna parlay judy's pension check into a fortune at the poker tables.

stevefu64: lol

SusanneW: Bareback! You're brave - we have Terry in the full Western Saddle set up - boots and all.. no cowboy hat yet though!

JohnM: Me too, Vern.

SusanneW: A Clydesdale? : ) That's a rough ride - unless you have them pulling you in a cart!

stevefu64: lone ranger hey lol

Wizzer: How to make a small fortune in Vegas-start with a large fortune

SusanneW: The first rung I help Terry - Good thing I'm pretty strong - I imagine most KD wives/sig others are!

Bugsy: yes a wagon burner he he he he //2

heyvern: I think I must be the ancient one here @ 71 years of age!!!

FL-DON: //8

SusanneW: Ok Don - when you win the millions, remember the KDA!

Duane: I'm having problems with balance, but thought it was due to meds...but have found out that even when I don't take meds, i'm vertically challenged.

JohnM: LOL Wizzer!!!!

FL-DON: will do susanne

SusanneW: Wizzer: Fortune! :)

SusanneW: 71 - you don't look that old - when was that picture taken you sent us? Hmmm... 30 years ago!

Bugsy: ha

Duane: terry needs a ten gallon hat and six shooters :)

heyvern: 2000

stevefu64: lol

FL-DON: make that 6 "Hooters"

SusanneW: Terry has problems with balance a lot lately. He loses it very easily. Just a slight bump and he's going over. I think that has worsened in the last year.

Bugsy: i have a pellet gun for sale ????? any takers

Duane: :)

heyvern: The year 2000 that is. Not 2000 years ago. lol

SusanneW: He has the 6 shooter - well almost - a shotgun. We use it with bird shot to shoot mistletoe out of our Oaks... Our neighbor has taught us lots of tricks!

Bugsy: i shake to much cant bare a sight .......lmao

JohnM: Vern, I'm not toooooooo far behind you at 69.

FL-DON: my cane helps with the steadyness. would be lost without it

MikeG: I think the main problem with my balance comes from the feedback sensors (nerves) - if I just touch something, I seem to be instantly stabalized.

SusanneW: Terry shakes also when shooting our 9 mm - I shoot targets a bit better than him!

heyvern: I don't go anywhere without my walker now.

LouLou: It is great to see 13 participants on board this morning. This is where we learn about how others are coping with KD.//1

Duane: Is anyone having problems sleeping through the night? I've got the bi-pap, i take Mirapex 1.5 mg at night, and still wake up every 2 hours. now I wake up around 4:15 and just say forget it and get out of bed. Anyone taking sleeping aids?

MikeG: yes the cane really help me too.

Bugsy: wow susanne you must be a jack of all trades lol

FL-DON: Duane, do you wake to go to the bathroom?

SusanneW: THose with KD should have something to keep them steady when walking - A fall can be very dangerous to your heath - no just in bumps, bruises, contusions, but a broken bone or worse...

stevefu64: yes i take clonazipam to help me sleep also for the spasms

Duane: no

FL-DON: the Neurontin makes me sleep like a baby!

Bugsy: yes i broke my tib fib and ankle

SusanneW: Duane - I don't know if you can take Klonopin - this is a muscle relaxer Terry takes before going to bed - knocks him out all night.

MikeG: I take 600mg of neurontin and it puts me out all night.

FL-DON: i take 300mg 3 x daily of neurontin

heyvern: 50mg Trazadone and .05 mg Klonopin at bedtime and still wake up several times during the night.

stevefu64: weis i tryed nerontin made me worse

SusanneW: Let me go get Terry's pills for dosages...

JohnM: I only take 300 mg of neurontin before bedtime and I don't have trouble sleeping.

Duane: What is the strength? I go to the dr's next month. I have to do something. Work is now expecting me to be there 5 days a week since I have the powerchair...go figure

Bugsy: the problem here is some meds you cant by in canada ......klonopin?????

PA-Paul: I was on the nurontin and it did nothing pro or con.

Duane: what is nurontin for?

Bugsy: als...people

stevefu64: bacclofin, and mexiltilne, helped me a little

SusanneW: Please note: All the med discussion that will take place is for information purposes only - please discuss with you doctor for the medication and dosages right for yOU!

FL-DON: Duane, mda doc gave me neurontin to dry up throat

JohnM: I don't really notice any effects of Neurontin either way.

Duane: Thanks Susane...good point

denny entered the room.

PA-Paul: nurontin is for pain but it also is given foir depresxsion'

FL-DON: sleep isside effect of neurontin for me

SusanneW: Clonazepam is the generic Klonopin

heyvern: I was taking 900mg Neuronyin per day until falling and breaking my fibula. I cut that out real quick. I was in a daze all the time.

Bruce: Good morning, Dennis

Bugsy: does every one in here have kd????

stevefu64: neurontin seems to help the older folk with kd

SusanneW: Terry has 1 MG Clonazepam (Klonopin) tablets - he takes 1/2 to 1 tablet before going to bed

FL-DON: <--------- kd

denny: Hello

Duane: I've begun having this gurgling sound in my throat,,,drainage? hard to cough up

SusanneW: I do not have KD - but I live with KD

SusanneW: Hi Denny.

FL-DON: same here Duane

Bugsy: no i dont mean sussane

Bugsy: i mean every man here

heyvern: living with KD for 12 years now.

Duane: do you take anything for it don?

SusanneW: There are women carriers who show symptoms... none here on the chat though.

JohnM: Neurontin is the only prescription that I take. The rest are just vitamins.

SusanneW: Not all carriers show symptoms, but some do

FL-DON: neurontin. thats why doc gave it to me

Duane: I notice it especially after eating...like something is stuck in my throat.

SusanneW: I read that Niacin is what helps our bodies make energy - but in too high a dosage can be harmful

Duane: i'll talk to dr about that also.

FL-DON: i eat small portions at a time, washing frequently with liquids

SusanneW: Terry also gets things stuck in the throat - especially breads... some foods are harder to get down than others.

heyvern: I too feel like something is stuck after eating or taking any pills, no matter how much water I drink.

Bugsy: drink beer !!!!!!

Duane: is he taking anything for it, or just really careful, drinking lots of water?

stevefu64: in the early stages of kd... do the spasms dissappear lateron into the progression or are they there with us kd;er ;s to the end?????

JohnM: I haven't had any problems with eating as yet.

SusanneW: Terry also takes Tramadol (Ultram) - 50 MG - 1 a day... for pain. It lasts him about 5 hours... but he only wants to take one a day as he doesn't want to have problems with his liver from taking too many meds.

Duane: beer...mmmm....work frowns on that without a dr RX

FL-DON: i quit, whole kernal corn dry meat & popcorn

Bruce: My spasms have diminished substantially. I am not certain whether it is because of timing or the fact that I stretch every morning and evening.

SusanneW: I think the spasms begin to wane over time. In the beginning they are more frequent and more intense

Bugsy: beer and bannock he h ehe

heyvern: I am almost spasm free now. Only show up with too much stress or fatigue.

Bugsy: moose meat too

stevefu64: oh ok ty

LouLou: Our caregivers have a much tougher time dealing with KD than we do. They do all the things which we can no longer do.

Duane: banock...is that fish?

SusanneW: Nothing to take for the swallowing - that is a sign of KD - speech and swallowing muscles wasting as well due to Bulbar part of KD.

Bugsy: he he he .

Terryw entered the room.

Bruce: Morning, Terry

LouLou: Hi Tex.

heyvern: I sanyone experiencing constant pain in legs and back?

Bugsy: hey cowboy how are ya

stevefu64: i have alot of problems with my fingers closing by them self and neck spasms

Terryw: Hello

FL-DON: if ya have a swollowing test, you can see the throat damage kd has dont to our bodies!

Duane: Do any experience the gurgling sound in throat while breathing...?

JohnM: Lou, I agree fully about the harder on Care Givers.

PA-Paul: back pain never goes away for me

Bruce: My aches and pains have increased substantially over the last few years.

MICH: I don't have problems falling asleep but can't sleep past 6 am since calves and feet get so tight...eating twice this week lost breath but usually not much of a problem except out of breath after words or exhausted just doing practically nothing...take no meds except nexium and vitamin E

Bugsy: does smoking make things worse in kd?

MikeG: I have problems with fingers closing up also.

stevefu64: no i dont think so Bugsy

JohnM: I don't have any pain at all.

JoeK entered the room.

Duane: MICH...good point, when I come home from work the first thing is take off the shoes and socks...my feet and ankles are swollen and feel constricted.

FL-DON: i started using a nebulizer 5 months ago inhaling duoNeb and abuteral, and my throat and lungs have cleared up remarkably

Bugsy: by loose fiting soks and shoes

SusanneW: On my trip to Tahoe, I was sitting next to a National Manager of a Pharmaceutical company. We began to talk about, what else - KD! (I've told you all before, if you are lucky enough to be my flight mate, then you get to hear all about KD!) We of course rounded back to his company and what drugs they develop. When I discussed Terry only taking one pill of Ultram and then bearing the pain for the rest of the day, he suggested we talk to our doctor about Avinza... Its a Morphine based drug also (Ultram is too), but with 24 hour release for chronic pain - comes in 30-120 MG pills. I'm always concerned about addiction when there is MOrphine. But what's the difference, Ultram or Avinza, both contain morphine... I think Terry will give this a try and see what it does for him.

LouLou: Smoking makes things worse no matter what your condition. Expensive too.

MikeG: I have a slight pain in my lowere back if I arch it backwards. Normally no pain though.

SusanneW: I think the pain makes Terry go to bed early and take naps as pain can drain you.

stevefu64: i drool at nite while iam asleep yuck

JoeK: good morning all from Norh

JoeK: North Carolina

SusanneW: Good morning JOe.

SusanneW: Two NC's in the room - you should plan to get together sometime!

Bugsy: well p

SusanneW: There were other meds mentioned in the questionnaire:

PA-Paul: morn joe

Wizzer: I start each morning with a 20 oz. bottle of gatorade and 600 mg. otc ibuprofen. Seems to eliminate most of the cramping in my jaws, etc. Also, keeping a regular intake of protein sems to help too.

SusanneW: Amantan - 100MG 1 /day Muscles Tranquility - caused user dry skin

LouLou has left the room.

Duane: I'm having a hard time at work staying awake...well sort of. I want to take a nap around 10:00 and 2:00...just can't stay awake. Drinking too much coffee...anyone else?

SusanneW: Codeing/Tylenol - 200 MG for pain

Bugsy: yes protien helps the shaking

SusanneW: Amytriptoline 10 MG - to aid sleep

SusanneW: Zyloff - 50MG - Depression

Wizzer: Stay off all caffeine, it makes you cramp and dehydrate.

Terryw: I get very tired to Duane, I have to lay down a few times a day

Terryw: then I can go again for a bit

MikeG: I've got to have my java...

Bugsy: wizzwe that is the plain truth .

SusanneW: Baclofen - & Tegretol 5 ML to releive cramps

SusanneW: Valium 10 MG for intensive cramps

MICH: Duane, I definitely knap in morning and afternoon between four hour work day

stevefu64: yes i tryed those sue they help a little

SusanneW: Celebrex - 200 MG - Depression?

Duane: Terry I know...just kinda hard to do at work. I'm afraid to mention to boss.

Bugsy: yes thats what i take susy

LouLou entered the room.

Bugsy: valium

Terryw: I understand Duane

SusanneW: Rilute-Rilusole - nerve/muscle tranquility and les pain

MikeG: Susanne, when were you at Tahoe?

SusanneW: Testosterone Injections

Duane: Rilute-Rilusole---kin to Rilutek?

SusanneW: Oops - hit enter key too fast - recent proof that testosterone is bad for those with KD!!!!

Bugsy: yes

FL-DON: doc took me off testosterone. too dangerous she said

SusanneW: Atenotol - 100 MG - High Blood Pressure

SusanneW: Prononix - 40 MG STomach Acid

SusanneW: Beciomethasone - 42 MG Nasal Congestion

SusanneW: ASA 325 MG - Heart

Bugsy: holy cow .who takes all those drugs you mention?

LouLou: Sorry--I got kicked out. I guess back pain is one of the common ailments we all have.

Terryw: The Protonix is to help with the prevention of the triggering of the dry drowning

SusanneW: Zocor - Lower cholesterol

JohnM: Boy, do we ever have a long list of different drugs taken by different people.

heyvern: I'm a bit concerned about the article on castration that was just published. Are we all going to need to go to the slaughter house to be altered to stop this ugly disease?

Bruce: I am showing 16 associates today on the chat. This is a great turn-out!

Terryw: acid reflux up to the airway opening

SusanneW: Not one person is taking all of these! Please don't think that - I'm listing what KDrs shared in the survey!

SusanneW: Neurontin - 300 MG Pain

Duane: holy moly...how can the MEDS be affordable...must have great insurance ...

SusanneW: Allegro - Allergy

SusanneW: Mestinon - for chewing - jaw muscles stopped working

JoeK: I can not tell much help from testsosectionstrone injuct

SusanneW: Diovan - Blood pressure

Bugsy: iam on just a measly ccp.cant afford the meds

SusanneW: Peptac & Ranitidine - 10 ML & 300 MG - before sleep to relieve laryngeal spasms

Bugsy: have to pick bottles lol

Bugsy: go seell them lol

SusanneW: Buscopan 10 MG - before sleep to relieve excess saliva

SusanneW: Co-Careldopa - 50/200 - bfore sleep to stope excessive leg movements - promote sounder sleep

JohnM: That is really some list Susanne.

SusanneW: Muse & Gildenafil Citrate - 250 MG & 50 MG - Impotency drugs

SusanneW: Zantac - 15 MG exces stomach acid

SusanneW: Quinine Sulphate 300 MG - Cramps

Bugsy: does viagra..............effect kd?

SusanneW: Metaclopromid - 10G - Swallow

SusanneW: Ranitidon - 150 MG Esophuditis

SusanneW: Enalapril - Chronic Hypertension

SusanneW: Synthjroide - Thyroid

SusanneW: Pravachol - Cholestrerol Control

SusanneW: Tricor - Trigliserides

SusanneW: Ok - that's the list - sorrY!

heyvern: Wow!

SusanneW: I gotta run - neighbor boy is down at the stables already!

SusanneW: Terry will take over from here!

Terryw: I will take over now

SusanneW: Talk with you all later!

PA-Paul: bye

FL-DON: bye susanne

heyvern: So long

LouLou: Bugsy--Viagra can be harmful if you have trouble swallowing. If you swallow the pill too swlowly your neck will get stiff.

Bugsy: i,ll be giggered..................have to pick a lot of bottles to by these he he he //42

Terryw: Susannes name will remain online to cature the chat

Terryw: capture

JohnM: Good One Lou.

Terryw: but she will not be there

JohnM: She did a real good job today Terry.

stevefu64: doe;s any of u guys hace problems with numbness while u know sex with ur partner

LouLou: Susanne always does a good job.

stevefu64: i do it feels dead

Bugsy: where?is the numbness

Terryw: numbness?

FL-DON: how old u r steve?

stevefu64: yeah in my penis no feeling

heyvern: No partner~ no sex since wife died in 2001. Also no caregiver now.

stevefu64: 41

Terryw: if you are taking any pain meds or muscle relaxers you will have problems

Bugsy: well i have no woaman

PA-Paul: do you have diabetes

stevefu64: oh ok

stevefu64: no

Terryw: numbs the sensitivity

stevefu64: u mean the meds???

stevefu64: will do that

Bugsy: terry can i ask a personal question?

Terryw: yes the meds numb you sometimes

stevefu64: ok ty

Terryw: ummmm, ok

Terryw: <--hide in corner

Terryw: lol

Bugsy: do you .or are you able to have intimacy ????with your progressivenesss

Terryw: yes I still can

Bugsy: ok kool

Terryw: My mind is like a teenager in puberty

Terryw: LOL

Bugsy: he he he ..........

stevefu64: yeah me to lol

Terryw: Body is just a bit slower to react

MICH: Does anyone feel KD effects their emotion...with dimples in my face gone...and exhausting easy...emotion sometimes seems to be drained as well??

stevefu64: yes mitch i do

Terryw: Like I say, If youo are on any meds they may interfere

Duane: slower to react...I just say I

Bugsy: iam always tired ...and lasargeck

PA-Paul: that exausting easy has just strarted to bother me a lot

Duane: I just say I'm been working to improve stamina :) LOL

Bugsy: well get used to it

heyvern: Yes, you have to keep a positive outlook or th emotions will make you really go into a funk.

Terryw: Duane, be on bottom

stevefu64: yeah

Bugsy: well i have to eat............bannock ,moose meat and tea by all

Terryw: <---the room goes silent

Terryw: hehe

Duane: My boss was put out with me last monday when I called in and took a vacation day. I had been shopping , grocery ,, ect...and was totally worn out. my legs were like noodles on monday morning...have to limit what i do...

stevefu64: so do u guys think they will ever find a cure for kd???? and if they do it wont matter to those who are already wasted hey???

LouLou: With testerone being low in all of us I think we become more emotional. Why? I don't know.

Duane: hey let someone else get a "workout" he he

Terryw: Steve, from the tests on mice that were chemically castrated they got back muscle strength

Bugsy: no cure boy...............not in our life time

FL-DON: i am convinced kd will have a treatment, and a cure in my lifetime.

MICH: Is anyone into swimming... I'm temped...can't do overhand strokes but dog paddle or breathstroke might work?

stevefu64: oh really

Terryw: so there is hope

stevefu64: ok

JohnM: I keep a positive outlook by keep busy helping OLD people with their computer problems.

Terryw: just have to get around the castration thing

stevefu64: u mean cut off our peni;s ????

Terryw: No

Duane: I found when in the pool, walk the perimeter helps with my legs...

FL-DON: castration can take place using meds

Bugsy: well .they aint cutting my doey ....

Terryw: Chemical castration involves no cutting

MikeG: Swimming is easy for me - I swim better than I walk.

Terryw: I think

stevefu64: what does it involve then

Bugsy has left the room.

LouLou: They just don't unerestand how you can be weak for 2 days by doing several hours of hard work.

Duane: Terry, chem castration is possible

FL-DON: i walk in a swimming pool daily for 1 - 2 hours

heyvern: Maybe if it comes to that we'll all be able to win the tour de france.

Terryw: Drugs to prevent the creation of testoterone

Duane: lol

Terryw: Bruce am I correct

Terryw: ?

Duane: 6 in a row...can he do it?

FL-DON: LouLou, our muscles just don't regenerate

Doughboy entered the room.

Terryw: They do it to sex offenders

Terryw: to stop their urges

stevefu64: hi tj

Bruce: Yes, Terry

Doughboy: Hi how are ya'll?

Duane: sucks though...nothing better than sex

FL-DON: louprolide is a chemical castrator.

Terryw: yes don

Terryw: that is the study that is currently underway

Terryw: in Japan

heyvern: I took testosterone shots for aboout four years. boy am I in trouble. Didn't do anything for the sex life back then.

FL-DON: we used louprolide in a kd study at ohio state in the 90's

Terryw: I think the Japan study is on Luprolin

Duane: heyvern...what do you mean in trouble..bad side affects?

Terryw: spelling

FL-DON: i got extremely weak using louprolide during study

Duane: luprolide....is that the chemical castration drug?

Bruce: I think one of the major hurdles the researchers have to overcome is what the correct dosage will be.

Doughboy: Even if it seems to work, would'nt it take a fairly long time before it was approved for use on humans?

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heyvern: No dune. just putting extra testosterone in my body ws probably doing more harm for the future from what they know now.

FL-DON: already approved for use

Bruce: I believe when you talk about castration, it becomes a very sensitive subject to all of us.

Bruce: It's a MAN kind of thing...

FL-DON: kd is a sensative subject for me

Duane: AMEN

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Doughboy: Really, I did not know, I had lunch with Murray on Thursday and we were discussing it, but did not know it was already approved, that's interesting!

Terryw: My balance has really gone bad on me lately

JohnM: I guess if it would allow my strength to return, it would be well worth it.

Bruce: I also believe that as I get older, I become more interested in being involved in some sort of testing that could work.

PA-Paul: yes JohnM me too

Duane: friends and associates don' truly understand how one day you get around fairly well and the next day ....whew

heyvern: I'd sure go for it if offered

Doughboy: Hell, I haven't been able to have sex for a while anyway! LOL! , Duane, you hit the nail on the head. I hear that at work all the time.

Bruce: Will the strength really return? That is a good question. Or, would the deterioration of the muscles just slow or stop?

Doughboy: Hey, Bruce that is a great question, if you find out let me know, please!

Bruce: Right now I would go for a slow down or stopping of the muscle deteriorization.

JohnM: I just want to tell all of you to be VERY careful and don't fall and break anything. It is not a pleasant experience while it is healing.

Bruce: John, been there many times and you are right.

Terryw: I am sure that we will find out more at this years conference in San Diego

stevefu64: i have never fallen yet so luckey haven broke a bone yet

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MikeG: AFOs prevent breakage

Bruce: AFO?

Doughboy: Is anyone scared about flying around election time?

JohnM: Your right mike.

heyvern: I can attest to the no falling thing. It was last November I broke my leg and I'm still not completely back. It's a pain in the butt to use a walker all the time. But it's better than falling again.

MikeG: Ankle to foot orthodic

FL-DON: i fell on my right foot a few weeks ago. just went down without warning. foot just getting back to normal

MikeG: it will save your foot

Duane: Terry, when did you know it was time to leave work on disability? Did you consult with dr's first? I don't want to get where I miss alot of work or have problems concentrating due to meds...etc...I've decided to discuss with dr's next month...any suggestions? you can e-mail me seperately if you wish.

Terryw: I am having a Pulmonary test on Monday and a sleep study on Monday night

Bruce: Mike, is there more information on AFO available?

Terryw: we will see how it goes

LouLou: I think we all would volunteer for any kind of testing that might quicken a cure for KD. It may not ber here in time for some of us but it would help alot of the younger ones with KD.

Doughboy: I'm seeing a gastrologist next week for my throat problems

stevefu64: terry i spent 3 days in a sleep clinic all the test came back inconclusive

MikeG: My neurologist wrote a script for me.

MikeG: I think the KD website has info - right Terry?

Terryw: well folks, I am going to go see how i can help Susanne and the crew. will chat with you all again in 2 weeks. Continue chatting..

Bruce: Take care, guy

stevefu64: by terry

Terryw: mike, on what?

MikeG: take care Terry - later

PA-Paul: lots of luck with the sleep study terry. I still do not understand how they expecxt a person to go to sleep with a mess of wires attached to everything including your scalp throught the hair

Duane: byre terry

FL-DON: got things to do. great chat. cya in 2 weeks

MikeG: AFOs

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Terryw: Yes I think there is a write up on it by Dr. Gershuni

MICH: Definitely take it easy walking....as I get older and fall...don't bounce as good so stitches in head and pain in the back

Doughboy: I had 3 sleep studies and I have severe sllep apnea and restless leg syndrome. Use a Bi-pap now. Was stopping breathing 41 times per hr., kick my legs 1700 times per night.

heyvern: I'm glad I could join you all this AM, but gotta go for now. See you next time around.

Duane: I've done the sleep study ,,,twice...that was when the bi-pap was prescribed...

LouLou: So long Terry and Susanne. Stay healthy.

Terryw: bye all

Bruce: Be safe, healthy and happy guys.

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Doughboy: Duane, how long do you sleep with the bi-pap?

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END CHAT