Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

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Kennedy's Disease Chat Transcript  05-02-2009

Topic:  Open Forum

Host: Murray Williams


BEGIN CHAT

UTE: Yaaaaaah!!!! New computer, I finally made it in!
UTE: Good Morning MURF
murf: Hey UTE glad the new computer works
murf: My appraser just pulled up so I'll be on and of for a bit
UTE: You mean you can still read my message from 11 pm last nite
UTE: Are you selling or buying a house?
murf: 'm back
murf: refinance
murf: good rates
murf: Hey Stan
Stan: Morning
UTE: Good Morning Stan, how are things in Mich?
MikeG: morning all
Stan: Sunny and 46. Not to bad
murf: Morning Mike
MikeG: sunny and 75 in FL
MikeG: hi Murf
murf: Cloudy and 76
murf: Humidity high good if you're a plant
UTE: Utah is probBLY 46 too
murf: Hey Pooh
MikeG: our humidity and temps are usually equal.. :)
murf: I'm staying inside today
MikeG: what kind of computer did you get UTE?
murf: Hey Gary
gary_kc: Good morning all. This is Gary joining from Kansas City. It is cloudy and 53 degree.
gary_kc: Hi murf.
Stan: Morning Gary
gary_kc: Hi Stan.
murf: Is anyone feeling sick?
UTE: Its a hp paVILION dual core desk top
poohsdaddy: Good Morning to all....Sunny at last in WI....don't know temp yet
MikeG: NO... how about you, Murf?
Stan: Same PC I have
murf: no I'm very careful when swine flu pops up its ugly head
MikeG: Bruce was tyelling me about his Dell Vostro and convinced me to get one too - NICE machine!
Stan: Not sick. Just the usual weakness, shortness of breath, aches....
murf: Hey I just got an HP laptop for $500
MikeG: nice
MikeG: all the prices are dropping
murf: Have a cam corder dual core 3GB and 3 GB RAM
poohsdaddy: Not sick -- just same as Stan the past week or so.
murf: you can't beat that with a stick
loshimo11: Good morning everyone. This is Luis Shimomura joining in from an overcast San Francisco.
MikeG: I got this Quad Vostro with almost a terrabyte of disk space for $800
murf: Hey Luis u ok?
loshimo11: murf... just got up... so far so good....
murf: WOW Mike I can't count that high
murf: lol
MikeG: :)
RH2706: Good Morning all
murf: Hey Lou
MikeG: it helps when you're converting all your old VCR tapes to digital - believe me!
murf: Hey RH
loutudor: Good morning everyone!
MikeG: hi Lou
loshimo11: Good morning Lou!!!
michael17860: Hi All
loutudor: Glad to be here:}
murf: Hey Michael & Dart
poohsdaddy: I can count, but have had CRS lately! (Can't Remember Stuff) Ha Ha Ha !!!
murf: Mike I'll be on & ff this morning as I have an appraiser here
loshimo11: So... other than the ongoing swine virus, what's up with everyone?
murf: Re-financing the house
Stan: Just cleaning up the flower beds, trimming trees, cutting grass
murf: rates are below 5%
michael17860: any news on AC_J9
Dart!: Good morning All - sorry for being latev - problems on this end with connection.
loshimo11: Hey Dart!!!
murf: Looks good now
poohsdaddy: Real Estate prices seem to have dropped in our area lately, but that didn't have any effect on property taxes.
murf: never doesa
murf: lol
MikeG: what kind of rate did you get?
Stan: I'm looking at a refi too. At least my taxes didn't go up.
murf: death & Tax and D.C.
gary_kc: Does anyone hear the PH2 trail result from NIH?
murf: 4.875%
MikeG: I got a 15yr refi for 4.25%
Ron: Hi guys. Hope you all are doing well.
MikeG: Sun Trust
loshimo11: As bad as real estate things are here in California, our property taxes still went up its usual 2%.
MikeG: hey Ron
poohsdaddy: Gary and all--Yes. I got a letter from Dr. Fishburn this week.
MikeG: did you get that juicer?
murf: Well they still don't trust Canadians in Texas
MikeG: :)
murf: lol
murf: Got a letter from Nih
MikeG: about the trial?
loshimo11: So, anything worth mentioning in these letters?
poohsdaddy: He said hey are not recommending Dutasteride at this time.
murf: The study really didn't show any thing conclusive
MikeG: :(
MikeG: I think Ron would beg to differ...
murf: Many be a longer study but are not planning one yet
murf: Thats good Ron should continue
gary_kc: poohsdaddy, thank you.
Ron: Mike--got the juicer--Hope it works like it did for you.
MikeG: J9 is what I think we need!
RH2706: Is anyone aware of any other studies underway?
murf: As long as everyone has quit using Hydroxicut
poohsdaddy: The patients on the placebo only experienced a 2% decrease in muscle strength per year.
MikeG: yep - I juice stuff that I didn't think you could EVER juice
murf: Pooh and I confirm that
murf: thats why they said maybe a longer study would revel something more
michael17860: what is the name of the juicer
MikeG: it's the Jack LaLanne Delux
poohsdaddy: Two percent may not seem like much to someone that has not been affectted, but I'd rather maintain what I have or try to get some of it back.
michael17860: how much does cost
murf: a French Juicer?
MikeG: not any stronger but I sure feel healthier
murf: does it speak english?
MikeG: it speaks squash
MikeG: lol
murf: lol
Ron: I felt that the deusteride didn't make me stronger but, i thought it kept me from getting weaker.
loutudor: Ron, any ill effects?
Ron: No.
MikeG: I got it on eBay for $117 - no shipping cost
michael17860: ouch..........
MikeG: well worth that!
poohsdaddy: I had thought they would follow-up with those on the real thing to see what changes there are after stopping the dutasteride. I have gotten weaker in recent months.
michael17860: was it new Mike
murf: NIH did say that they do not currentlyrecommend dutasteride as a treatment for KD
MikeG: sure was
MikeG: unopened
murf: this does not mean if it makes you feel better to stop taking it
murf: please see you doctor and ask him it it's right for you
poohsdaddy: My PCP (doctor) has agreed that it may be time for me to get a walker and that he'll presscribe what I need.
murf: I have not because was waiting on these results and still would like to read the final results
poohsdaddy: Murf, ditto>
murf: Pooh - good for you
MikeG: I got a walker for around the house - sure has helped me
murf: MDA will also help
RH2706: Where are the final results posted?
murf: not posted yet ... we'll let you know
RH2706: Thanks
michael17860: Does anyone know if Med-care or MDA help on the cost of a ramp van?
UTE: If I walk quite a bit in the house the wALKER COMES IN Hady
murf: Yes REGISTER WITH mda AND GO SEE THEM
loutudor: It's worth asking for help...
murf: tHEY WILL ASK YOU IF THERE IS ANYTHING THEY CAN DO FOR YOU BEFORE YOU LEAVE
murf: Ttell them what you need and they will tell you what they can do for you
MikeG: the VA helped Don with his conversion van
murf: sorry for the cap locks
murf: lol
loutudor: Does anyone use a stair glide for steps on their home?
MikeG: he has a nice one
poohsdaddy: Some of you may have met my cousin David at the conference last year or the year before... His younger brother was found deceased a week ago Tuesday. Memorial service was last Saturday. He was only 60.
murf: dam - I'm sorry
murf: was he a member of the KDA?
Ron: Sorry to hear that pooh.
MikeG: so sorry to hear that
loshimo11: loutudor... I currently have a stair glider in the house. It's great!!! It allows me full access to the whole house.
murf: Pooh could you contact Terry with contact information
loshimo11: My condolences poohdaddy.
loutudor: I'm happy for you...my father had one for the basement stairs
RH2706: How much does a stairclimber cost?
poohsdaddy: Were you trying to yell by using caps? We are listening to you -- no need to shout.
murf: lol
murf: figers sliped on the cap lock button
murf: lol
loutudor: The stair glide is affordable and you can get assistance if needed from MDA
loshimo11: Stairclimbers are not cheap. Each one is customized and basically dependent on the height and angle.
UTE: sORRY i have capitis too...that cap lock keeps getting in the way
poohsdaddy: Thanks for the smiles guys !!!
murf: I'm back
Dart!: This 'stair glider' that you speak of - what would I ask for as to an actual name, on internet?
MikeG: poohsdaddy - was John Mengel related to you too?
loutudor: I don't know the current price, but I know you can get help financially
RH2706: I read the KDA newsletter yesterday -- extremely well done
loshimo11: I think I paid $5600 three years ago. It was a top of the line model that folds up at the bottom so people don't trip on it.
poohsdaddy: Terry already has my contact information... He's the one who reminds me about the chat room.
murf: will it hold a chair or is it just a seat?
loutudor: Well worth the price of mobility
murf: ok Pooh
loshimo11: It is just a seat. You have to transfer unto it and then it becomes a Disney E' ticket ride.
Ron: My aunt just got a stair glide for 23 steps which cost about 2800.00.
MikeG: RH2706 - we are looking for volunteers to help with that newsletter. Anyone good at writing here? We would sure appreciate the help.
loutudor: I'll be happy to help
MikeG: :)
poohsdaddy: Mike -- YES. David, John and I are all first cousins. Our mothers were sisters.
MikeG: Lou you already help!
MikeG: a LOT!
loutudor: Thanks...it's a privledge!
Dart!: Does this glide have to be mounted on a straight stair? My stairs (outside) make a 90 degree, and the one inside is a 180 degree.
Stan: Every thing I write comes out as H.P., torque, volumetric efficiency, cubic inches, etc...
loutudor: They can be customized to go around corners
MikeG: that's ok, Stan. We need techies too! :)
Stan: Sounds like I could make a stair glide with the spare garage door opener I have.
murf: ok Back again
loshimo11: Dart. Yes, the newer models can accommodate just about any set of stairs; even for the outside environment. From what I hear though, they are not as durable as the straight ones and they are more expensive.
poohsdaddy: I also learned recently that another cousin to our mothers had SBMA; and that his grandsons have been diagnosed with ALS. I told their mother to have them checked for KD too.
Dart!: Could you give me a brand name fore the 'glide'?
poohsdaddy: she said she had not heard it.
loutudor: Sorry, I don't know brands
loshimo11: Dart... give me a few minutes... I'll go check for information on my chair.
murf: Pride makes one I think ... need to check
MikeG: poohsdaddy - yep most of us were misdiagnosed
MikeG: what happened to David's brother was it KD?
Ron: Murf--you still have a list of stores which have medical equipment for KD'ers. Right?
murf: yup its on the website
Ron: I think it is on the KD home page.
murf: mobility aids
murf: exl
murf: excel
murf: xls
murf: xxx
murf: lol
poohsdaddy: Mike - Don't know anything for sure yet about Paul....just that he had probably died the previous weekend.
loutudor: Is this multiple choice8)
MikeG: so he was alone in the house?
poohsdaddy: His wife had been away for the weekend; and found him when she came home. Don't know the whole story.
murf: thats too bad
Ron: What a shock.
murf: I hope they find me before I start stinking up the neighborhood
loutudor: Is there an autopsy being done?
Dart!: Facing that situation alone must be a frightening situation, and harder to take, if one doesn't have a hand to hold!
loshimo11: The manufacturer is Stannah. I believe they're a company in England. Don't know the model number but the salesman told me that these are the guys that the queen on England has installed in her home/castle. I though he was joking, but he swore to be telling me the truth.
poohsdaddy: Thank God that our spouses take such good care of us!!! Remember that Mother's Day is coming up.
Ron: Too late. lol
murf: amen
murf: lol
murf: Has everyone seen the tissue donation stuff?
murf: All I want is to die somewhere that they get to my tissue before it goes bad
MikeG: yep - I'm a donor
Dart!: Thanks for the 'glide' information!
Stan: ????????????
RH2706: Got to go. Great chat. I will see you next chat.
murf: Stan
Ron: Stay healthy RH.
loshimo11: Dart and anyone else that may need more info... email me.
murf: Tissue Donatio0n?
Stan: What tissue donation stuff?
murf: RH cya
loshimo11: Take care RH.
murf: We have a tissue donation program on the website
Stan: Puffs?
poohsdaddy: I've already told my family that I'll be going to the Medical College of Wisconsin whe the time comes.
poohsdaddy: I also signed up to be any organ donor -- as if they'd want to re-cycle any of my parts....
Stan: Ok, now I see. I don't have enough. When I go, there won't be any left. Organs are shot, or will be. Wife will just toss me out on the acerage.
MikeG: murf - I was looking on the web site and I can't find the link to our tissue donation program any more. Do you know if it got deleted?
poohsdaddy: Gotta go too -- just got a call that our brother-in-laws mother died. Thanks to all til next time.
Stan: Take care.
Ron: Take care Pooh.
MikeG: I found it using Google...
MikeG: http://www.kennedysdisease.org/Tissue%20Donation%20Program%20Rev%20021106.pdf
murf: I can't find it either which only means its not user friendly
michael17860: by all got to go.
murf: thankyou google
MikeG: :)
Ron: so long Michael. stay helthy.
murf: Stan there you go for doctor Attorney and your will
MikeG: Ron - try some of the exotic recipies in that juicer book... they're really great but they don't sound so good.
loutudor: Are you replacing meals with juice?
MikeG: I never thought cucumber and cabbage would go together... :)
Ron: Stan--tell your wife not to spread any spare parts on your acerage. She will get arested for littering. lol
MikeG: no but I'm thinking about it. I still eat breakfast and dinner lunch is juice
murf: lol
loutudor: Yum,,,
Stan: You cannot litter on your own property. Here, you can actually define an area to be used for burial if you have enough acerage
MikeG: NO BEER Murf! lol
loshimo11: My grandfather used to put everything in a blender and then it eat/drink it. He lived to be 101!!!!
murf: don't drink Mike lol
UTE: Is it possible there are doctors out there that can do an autopsy on KDers and see how the disease progresses or even want to explore the idea?
Ron: It was a joke Stan.
MikeG: right on - loshimo11!
murf: UTE thats what they want the tissue for
Stan: I know. It's my kind of humor.
murf: They can get info from tissue they can't get from any other means
UTE: Great!
loshimo11: OK everyone. Gotta go. Please stay healthy and vertical.
loutudor: Take care
Stan: Until next time.
murf: this is all done via Mayo clinic etc so we respect the remains
MikeG: yeah, me2 - until next time - stay vertical!
murf: No falling down guys
Ron: Got to go also. Stay healthy till next we chat. Bye.
murf: Ron take care
Stan: Bye Ron
loutudor: I'm going to a Ken Derby party...should I bring juice?
UTE: the tissue e-mail Address ran off the page...what comes after rev%
gary_kc: Bye all.
Dart!: How time flies--- take care All!
murf: yes !!! lol
murf: cya Dart
murf: u ok Gary?
Stan: Bye all. I'm off to mow some grass. Claim my spot
loutudor: Nice mtg...thanks all
murf: Stan u got some one to do that for u
Stan: It's therapy for me.
murf: olk stay vertical!!
Stan: Bye
murf: cya
UTE: Nice to be back... that old 10 yr old computer was keeping me away.. have a good week
murf: u 2
murf: good to have u back
UTE: thanks...see ya
murf: u bet