Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The site is essential for a source for the general public, whenever one encounters the diagnosis of Kennedy's Disease and has no idea what that might be. There is simply no other source as easily available to the public."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript   02-20-2010

Topic:  Mobility Aids

Host: Murray Williams

 

BEGIN CHAT

 

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
murf: Houston
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
murf: LOL
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: 3ºC here
TedA: Good morning
fergior: murf i as in Houston years ago
fergior: Good evening
fergior: was
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
TerryW: Hello
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: lol
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: Chicago
murf: 2002
murf: ?
murf: 2001
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
TerryW: 10
murf: As some of you know I have been remodeling
TerryW: is it done murf?
murf: no
TerryW: ?
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 doesin´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: oops
murf: fingers work good today
TerryW: looks like our fingers are all numb
TerryW: :D
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
TerryW: :(
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
murf: nightmare
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.
murf: orning
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.
TedA: Provident?
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
TerryW: ok
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
TerryW: Wiping?
murf: I have two still in the box
Bruce: Murray, what is the brand again?
TerryW: People have been whiping for years
TerryW: :D
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: its
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.
Bruce: Thanks
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
murf: LOL
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
loutudor: lol
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: www.4-medical-supplies.com
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


END CHAT