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Kennedy's Disease Chat Transcript 02-20-2010
Topic: Mobility Aids
Host: Murray Williams
murf: Morning Stan
Stan: Good morning, Murf
murf: I'm waiting for the cleaning ladies
murf: may have to duck out for a minute
Stan: That's ok, mine just left to go shopping with her sister.
Stan: I'm here all alone to get into whatever trouble I want without interference or objection
murf: I hire mine once a month LOL
murf: Me too
Stan: Of course, I really am never alone according to my wife and sister-in-law. With all the things that have happened to me, God and my Gaurdian Angel must be here all the time.
fergior: evening from Spain
murf: Good Morning Madrid, how is the weather?
Stan: Good morning Fergior
fergior: sunny but cold
murf: ouston is the same
fergior: where are you from (live)
Stan: Wow, I have thw same weather here in Michigan
murf: All is good with the world
fergior: do you know Patrick Peper?
murf: No is he from Houston?
murf: My cleaning ladies are lost OL
fergior: He was living in Arozona, but now is moving to Louisville Kentucky
Stan: What do you mean, murf? Can't they just follow the trail of dust to your place?
fergior: what is the time to begin the chat?
murf: They should be able to do that, I've had construction going on so I hope they brought a shovel for the dust
murf: 10 minutes
fergior: in Madrid now 16:20
murf: ok so 16:30 in Europe
murf: good to know
Stan: In Michigan, it is 10:21 EST
fergior: Stan, cuold be Michigan is colder Madrid
Stan: It's 25 degrees F here now.
fergior: 3ÂºC here
TedA: Good morning
fergior: murf i as in Houston years ago
fergior: Good evening
Stan: Good morning Ted. Fergior, yes it's a little colder here.
murf: ok Cleaning ladies have instructions
murf: Morning Ted you got on!
TedA: Terry got me in
murf: fergior were you visiting?
murf: Morning Terry
fergior: Houston , New Orleans , Mobile and Tampo
TedA: morning Terry, thanks again
fergior: wen i was in Merchant Marine
Stan: Oh, oh, the boss logged on. Gotta behave now. Hi Terry.
murf: A good tour of the south
TerryW: you are welcome
TerryW: Boss. Murray has been with the KDA almost as long as me
murf: Morning Lou
TerryW: hi lou
loutudor: Good morning!
fergior: also i was 15 days in Miami in 1992 for busuness
murf: ya but you started it
Stan: Morning Lou
TerryW: Seems like so long ago
murf: without you we would not be here
loutudor: Hi Stan!
TerryW: BUt research has come far
murf: yup it does
murf: I remember when I first met Kurt
TerryW: I remember when we started the KDA, seemed like there was not much research and not many knew about KD
loutudor: We have so much to thank you for, Terry!
murf: long time
Stan: I thought my brothers and I were the only ones with KD until we started doing some research.
TerryW: You are all welcome, I just hope that we get to some kind of treatment or cure soon.
TerryW: 2000 Murf
murf: that would be nice
TerryW: hi Gary
gary_kc: Good morning. This is Gary joining in from KC. It is 30 degrees and cloudy this morning.
murf: ya it was 2000
gary_kc: Hi Terry.
murf: wow time flies when your having fun
TerryW: I stared out 1 years ago felling like I was 30 now I feel like 70
murf: As some of you know I have been remodeling
TerryW: is it done murf?
fergior: Terry, i want to send an updated to my personal historie. What can i do?
murf: can you get on opur website?
Stan: Yep, I know. My mind says I'm 30, but my body says YFN. It's 57 going on 80
TerryW: Ferg, Just type it up in an e-mail or MS WOrd and e-mail us
TerryW: we will replace the current
murf: so I thought it would be a good topic to talk about mobility aids
murf: does anyone have a question?
TerryW: Ferg, If you don't want to retype the whole thing, just copy the text from your personal story page and then paste it into MS Word and edit it.
murf: Hey Paul from Dallas
loutudor: I'm anxious to hear about anything new or of special help....
fergior: ok. one more thing: My wafe wants retired from actual history the familiar picture. She says her face doesinÂ´t like her.
Paul Sramek: Hey, @ my Desk
murf: well I need to tell everyone I can NOT TO PURCHASE a premier bathtub
Stan: You mean like having a skateboard that your dog pulls you around the house with?
loutudor: What kind of tub is it?
murf: no thats my ceiling lift until I get used to it lol
TedA: maybe sitting on the skate board
TerryW: Hi Bruce
murf: hEY bRUCE
Bruce: Good Moerning Everyone
murf: fingers work good today
TerryW: looks like our fingers are all numb
TedA: just cold
murf: The tub was $14,000 but only worth 1K maybe 2
murf: No comunication after sale with company or installlers
Bruce: I am coming in late, Murray, what is the tub supposed to do or not do?
murf: I got stuck in it for 2 1/2 hours
murf: 1/2 in and 1/2 out
Bruce: Did you look like a prune?
murf: opening at bottom is only 8""
TedA: is that a walk in type tub
murf: yes so tub was empty
murf: my head was out hips in the 8"" door and legs in the 2' x 2' bottom
TerryW: Must have been frustrating
Bruce: How did you get out?
murf: panic attack
loutudor: Big red truck come?
murf: my wheelchiar pulled a little
TerryW: One of my horses got loose the othr afternoon and I had to catch it, It took me 1.5 hrs, No one else was around
murf: no big red ... no phone
TerryW: I was in the Yamaha Rhino trying to round it up
loshimo11: Good morning everyone!!! This is Luis Shimomura joining in from a rather overcast and semi cold San Francisco.
TerryW: I was so mad & frustrated also
TerryW: hi los
murf: At 14K I thought I would have better service
loshimo11: Hi Terry.
Stan: Hi, Luis. Yell over and say Hi to my brother in Redwood City
TerryW: Tha't not right Murf
TedA: Lois I just moved from SF back to Virginia in December
TerryW: Should write them a letter
loutudor: How did you get out of the tub??
murf: so I warn people these guys do not care about you
murf: only the sale
Bruce: My brother who had KD was always claustrophobic (sp), I am beginning to wonder if it was because he fell so many times in places that he could just not get out of without help.
TerryW: maybe Bruce
loshimo11: Stan... I used to live almost right next door to Redwood City.
murf: wheelchair pulled some and when I got my legss straight 1hr I pushed
Bruce: I know that I have been stuck in positions that caused me to panic for a moment or two.
murf: Lots of screeming at the chair & tub
TerryW: WOrst place I have been stuck was in my boats engine compartment
TedA: Actually it was Redwood City (Shores)
murf: Emma was on the bed scared
loutudor: Maybe a good idea to keep a phone within reach...
TerryW: I got in and could not get out
Bruce: So Murray, what is the problem with the tub? I missed the beginning of the topic.
murf: I had a phone on the countere reachabl;e while I was in the tub
loshimo11: TedA... My wife works at a credit union in Redwood City Shores.
murf: you need to be able to walk in and step up 6""
fergior: Please, what""tub"" mean?
fergior: i am lost
loshimo11: Teda... Yeah.... How did you know???
murf: problem is when you are in it you need more room to stand to get out
UTE: I looked at one of those narrow walk in tubs at Sams Club...looked like the seat was too low...and the sides too high to get out by myself???
murf: biggest problem is standing up in the tub before you exit
murf: that is where I failed
Bruce: Got it, thanks. My current shower has the raised step in and it is causing me problems these days ... balance and control.
TedA: I'm a member and used the one at the Nob Hill shopping center. What is her name, maybe I know her
Stan: Fergior, sorry for the American slang. Tub, meaning bathtub that we use to take a bath
loutudor: sounds dangerous...are there grab bars?
murf: I just had to install a ceiling lift to get me in & out
fergior: ok, thanks.
murf: that was $12,000
loshimo11: TedA... Probably not... She works at the corporate center a few blocks away. They don't let her out too often.
murf: so now my baths cost $26,000
murf: long time before I pay that off
Bruce: This last year I have been having problems standing up from the commode. It is not too bad until wintertime when my legs are weaker because of the cold. About a month ago I invested in a Stand-Aid (www.stand-aid.com). It is a great addition and has made life a lot easier for me.
fergior: I ve got a electric seat colled ""aquatec"" and can take bath very confortable
TedA: I know where that is, near Soffitel Hotel
murf: I would recommend a lift and a bath tub. period
murf: save thousands of $
Bruce: What does the Aquatec do for you?
loutudor: Good info...I believe you should contact the head of Premier, Murf
loshimo11: TedA... Yup... Right across the street.
fergior: tchnic water lift
murf: I tried Lou
Stan: I think I'll just save my money and have the wife hose me off in the backyard when she washes the car.
murf: Bruce I have two toilet lifts
Bruce: Great idea Stan
loutudor: love it, Stan!lol
murf: they lift you up lick the lift chairs do
murf: run on battery
TerryW: Bruce, How do ou deal withthe issue out in public?
murf: were $1700 but I got two for $1200 each
Bruce: My stand aid does that also. It raise me up 13"" if I need to go that high.
murf: I have one extra now .... who needs one?
Bruce: Terry, I have a ""tallette"" (5"" raised molded seat) that I carry in the van.
fergior: is a seat powered by bateries that let you take a position in deep baht and whon you want the seat lift up at bath level
murf: Maybe I'll donate to the auction
Bruce: Fergior, how high will it lift you up?
murf: to standing
murf: charger will be 110 v
fergior: just lift to a normal position sitting
murf: left hand hand controlsd
Bruce: My Stand Aid is also battery operated with a trickle charger attached to it.
murf: I wipe (when I can) with my right LOL
murf: Bruce this is a brand new thing to the market
murf: I have two still in the box
Bruce: Murray, what is the brand again?
TerryW: People have been whiping for years
murf: some of us have trouble Terry
fergior: in my case the bateries are in a waterproof case and pluged . For charge, tou remove de case fom it
TerryW: i do when my hands are cold
murf: one second Bruce
TerryW: Ots like trying to wipe with a log
TerryW: figers wont work
TerryW: many typos today
TerryW: hi Dan
Bruce: In the last couple of years I have become an advocate of making life easier and safer. In the past, my pride would not let me invest in these accessoiries. Now I love the fact that another part of my daily life is easier.
loshimo11: Not to change the subject, but has anyone seen any non-traditional remedies to treat KD?
DanT99: good morning
loshimo11: By non-traditional I mean not associated with MDA.
loutudor: Hi Dan!
Bruce: Loshimo11, nope, nothing recently. I keep looking, however. I need a local Qigong master.
murf: Bruce its a Mountway Inc.
murf: Solo is the model
loutudor: Do you think Mountway is the best on the market, Murf?
UTE: What's a Mountway?
murf: best I've seen and good to deal with fast shipping
murf: UTE toilet lifts
loutudor: Thanks for that info...
Bruce: Showering is now becoming more of a problem. I have a shower chair and it helps, but entering and exiting the raised stall is not always safe when I am weaker. I am looking at options.
murf: My ceiling lift goes over one toilet so for that one I have a bidet
loshimo11: The reason I'm asking is because my wife recently found a website based out of Europe that sells a homeopathy that claims to reduce (not cure) KD symptoms.
murf: Ceiling lift is good for 650 lbs so no more dieting LOL
Bruce: Stand Aid Toilet Lift was also very helpful. They shipped within a couple of days and the unit comes totally set up except for the leg height adjustment.
Stan: Fotunately, I don't need mobility aids yet. I have been looking on the web to see what is available. A lot of that stuff seems way overpriced.
fergior: y get have my hands and fingers in relative good conditions (i think) due to my hobby. I fly helicopters radio-controlled, and its micro-mechanic make me have the fingers well (by moment)
loutudor: Any other info for shower help, guys?
murf: Stan everything with a red + on it is double priced and now our Prez has raised that more
Bruce: Stan, the market is terribly overpriced. I recommend getting into bed (so to speak) with your local medical supply company. I saved $300 on my Stand Aid by ordering through him.
murf: fergior good exercise is good so i'm into computer games
Bruce: Most products have a 50-100% markup.
UTE: How much is a stand-aide?
TedA: Any recommendations for a travel scooter. I have a power chait but not good for ailline travel
Bruce: Ordering direct ... approx. $1100 pluys $60 shipping.
Bruce: I never thought I would pay that kind of money, but my wife talked me into it because she is gone so often. She wanted to make certain I was safe.
murf: To insure all my new gadgets (new mosquito killer system) say powered up I installed a 20 Kw standby generator
murf: Any one wanting a scooter or powerchair please check eBay
murf: I got my last chair Brand new for $600
Stan: What about disability resource.org.? It seems there is a lot of stuff on that site
Bruce: Chairs on the internet are substantially less expensive. Many chairs have been used for less than a year.
Paul Sramek: I have a Travel Scoot it air line approved..I use it all time. Check the internet.
murf: I got a new air cleaner too ... Not an Ionic breeze
murf: same price but way better
murf: Hey BC welcome
Bruce: Hey Dart
murf: Olimpic Dart
Bruce: How far is Kelowna from the games?
murf: 1 hr
murf: down the new K freeway
Bruce: Vancouver is still one of my favorite cities. My wife and I really liked it there.
murf: I usede to live there LOL
murf: Nice place I have family there
murf: in whisler
Bruce: We loved Stanley Park and QE Park. Great places to just hang out and walk.
Dart!: Good Morning All - We wizh y'all a great one!
loutudor: Morning, Dart!
murf: If you are wondering how I paid for all of this I did not win a lottery
murf: I pulled my entire 401K
murf: hardship withdrawl
murf: 20% withholding
murf: I'll get it all back cause its medical
murf: I would not want to wait another yr
Bruce: I have a neighbor and friend who is in the medical supply equipment business. He has educated me on the markup for medical equipment. It is amazing.
murf: we may not be able to write it off any more
murf: I do not trust Washington (this is my opinion and not reflect the feeling of the KDA)
Bruce: BTW - Maria Pennuto, a KD researcher, will be our guest on the chat room March 6th.
Stan: I've been waiting to touch my 401 and ira savings until I really need it.
Bruce: Marsia, welcome. Are you warming up in Ohio these days?
murf: u only have ... when you go one long term disability the the next is when you are 59 1/2
murf: I couldn't wait
murf: I will re-invest what I don't spend on medical equipment
murf: o ya I got a new lift chair too
loshimo11: murf... you have to be very disciplined and not spend it all at once.
Bruce: What kind, Murray
murf: I am good at that
murf: one second Bruce
Stan: I know a few people that had to tap their retirement savings, couldn't wait. Sad. I'll see if I can hold out a year-and-a-half.
Bruce: I hope to get a lift chair within the next month or so. I am ready for one.
loutudor: I was told Lazy Boy makes a nice lift chair...
murf: Bruce I ordered this one for my hight and wieght
TedA: Lazy Boy are good chairs
Bruce: Terry, the jar openner you recommended has been a great help.
murf: the company builds when you order 3 weeks delivery
Bruce: Lou, I did not know that. I need to check into LazyBoy because I love their normal rockers and recliners.
loshimo11: Lazy Boy... they must have name it after me.
TedA: What was the name of the jar opener
Bruce: I do not have it in front of me, sorry. It has really helped me out around the kitchen. I'll check to see if I can find it.
Dart!: Murph, is the new lift o move your power chair into your vehicle? And what do you hear from Terry?
fergior: pardon , my PC failed
MARSIA KOTTE: Hello, I didn't realize I was actually in the chat room. Gotta love all the snow.
Bruce: TedA, it is the Oxo Goof Grip Jar Opener.
murf: no new lift is to get me on the toilet and in the bath tub
TedA: Thanks Bruce
murf: Bruce I had to boot the laptop where I ordered it from
Bruce: You can buy it at Amazon or in a kitchen supply store.
Stan: I use strap wrenches from my tool box to open jars and bottles; remove oil and water filters...
murf: Google ; Neptune toilet lifts
Dart!: Sorry about that, Murph - I didn't mean to invade your privacy, and I hope for better days ahead!
Bruce: They work too, Stan, but I wanted something I could keep in the kitchen drawer without my wife fainting when she saw it.lol
murf: for the chair lifts
Stan: My wife uses them and likes them, Bruce.
Bruce: Dart, Terry was online with us until about ten minutes ago.
Paul Sramek: I am out, see you next time.
Bruce: He is doing fine, but the ranch has been a lot of work for him recently.
Stan: See you Paul
loshimo11: I gots to go. Stay healthy and vertical everyone!!!
Dart!: Thanks Bruce. Is all well with Terry?
Bruce: Murray, good topic today. Thanks for hosting it.
Bruce: Dart, yes, he is just extra busy.
murf: cya Dart
loutudor: Very good informational chat...Thanks Murf!
TedA: Thanks for the good chat Murray
murf: Np lots more but no time
Bruce: Until next time, stay upright, safe and healthy. Bye
Stan: Thanks. Gotta go.
loutudor: Please do another like this, Murray!
gary_kc: Bye all.
fergior: bye all
UTE: Yes, lots of good info...including out of this world pricing.. thanks
murf: I think I missed Darts comment
Dart!: Thanks All, for the greetings - until next time!!
murf: Did she ask me a question
murf: did u ask me a question?
murf: sorry missed it
MARSIA KOTTE: interesting tks
murf: +take care