Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"This is one SUPER organization and a Non Profit one at that."

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Kennedy's Disease Chat Transcript  07-3-2010

Topic:  Open Forum

Host: Terry Waite


TerryW: Hello
prp1: hi first time on here
TerryW: [b]Welcome
TerryW: [b]I am glad that you could join
TerryW: [b]I am Terry Waite the co founder of the Kennedy's Disease Assoc
TerryW: [b]There should be more joining us soon
TerryW: [b]where are you from?
prp1: england how about you
TerryW: [b]Sunny California USA
TerryW: [b]Hi UTE
TerryW: [b]I will be right back
UTE: Good Morning Terry and prp1
TedA: Good morning from Richmond, VA
UTE: Wow...there's now a too!
TerryW: [b]It looks like they are not a real Kennedy's Disease SIte
TerryW: [b]Hi Ted
UTE: How's the weather in Virginia and England...mid 80's to 90's in Utah
TedA: Terry, has the weather cooled off yet in the foothills?
TerryW: [b]It was about 85 yesterday but going to be 5 degrees hotter today and even hotter tomorrow
TerryW: [b]Hi ROn
Ron: Good morning and a happy fourth .
TedA: Weather in VA is in the 80' but climbing back to 100 by Tuesday
TerryW: [b]Ron, thank you for the letter and the donation from the Lions club
TerryW: [b]It really helps, donations are down this year
prp1: weather hot and sunny been 28 30 ish rare for us
TerryW: [b]I will not be able to stay in chat for long today I have relatives staying with us
Ron: I thought it was great that another nonprofit gave to us.
TerryW: [b]PRP1, do you have any questions or specific issues you want to discuss with us today?
TerryW: [b]Yes, Ron, that was great
TerryW: [b]Hello Gary
Ron: Hi Gary
Gary_KC: Good morning, all. This is gary joining in from Kansas City.
Gary_KC: Hi Terry and Ron.
Ron: Are you doing any better with your health issues Terry/
TerryW: [b]Everyone welcome PRP1, New to chat
prp1: cheers hi just been diagnosed any advice are there other people in the uk
TerryW: [b]Ron, I am having some other issues right now. I will write you about them
Ron: ok
TerryW: [b]Yes PRP, there are a few in the UK
loshimo11: Good morning and happy holiday to all. This is Luis Shimomura joining in from an unusual sunny and warm San Francisco.
TerryW: [b]Hi Pooh
TerryW: [b]Hi Losh
TerryW: [b]Hello Stan
stan: Good morning everyone.
loshimo11: Hey guys!!!
Ron: tERRY--how is susanne doing/
TerryW: [b]SHe is good Ron, Busy busy as always
poohsdaddy: Good Morning guys.... Happy Fourth of July weekend to all of you !!
loshimo11: Good morning poohsdaddy.
loshimo11: We actually have quite a few people joining today's chat. I thought I was going to be the only one here.
TerryW: [b]I am going to have to go soon, I have reatives visiting I just wanted to be here to get chat started
stan: We had our big family bash last wekend, so this weekend is quiet.
UTE: Happy Independence Day...although those English have become great friends and allies
poohsdaddy: Something's wrong here.... I'm only seeing part of the chat. I'll try to come right bac ""refreshed"".
TerryW: [b]I am taking advantage of my guests, they are helping me out with some things around the house while they are here
loshimo11: Quiet weekend for the wife and I. The kids have gone to Reno to gamble away their fortune.
TedA: Terry, I'm sure that your guests and you will have fun doing the things around the house otherwise you all might be just sitting around
poohsdaddy: Our sons and their children are gone this weekend too, but have plans for a picnic at my sister's house next Sunday. Don't think I'll be able to get there.
TerryW: [b]THey told me to have a list for them so I made one. Mostly small ones
stan: I had about 50 friends and family over at my place last weekend for a campout. My fron lawn looked like a Ford Dealer lot. (Most of us work(ed) for Ford.) I'll try and post a couple pictures on FBook
loshimo11: Has anyone voted in Lou's Chase Community Giving thing?? I've voted almost every day, but it is quite depressing since everyone seems to be ahead of us.
TerryW: [b]I have
TedA: But I bet they are ones you are not able to do by yourself
TerryW: [b]yes Ted
poohsdaddy: Sounds like a good time, Stan. And, good to see you're on Facebook.
TerryW: [b]I am going to go and get started helping them before it gets too hot outside.
TerryW: [b]Sorry I could not stay long
TedA: Bye Terry
loshimo11: Take good care of yourself Terry. Let everyone else do the work...
poohsdaddy: Losh, I thought we could only vote once.... not daily. I'll try again later. THANKS!!
TerryW: [b]I have to help some or I feel bad
stan: I finally got the application issue resolved and have been able to vote. Pooh, yes, you should check out my page. Lot of good (useless) information.
stan: Take care Terry. Sit back and supervise.
TedA: Stan, what page are you refering to?
stan: My FBook.
poohsdaddy: I use FB to check on the relatives and friends, but mostly sit and play a few of the games.
TedA: I'm on FB too!
stan: I don't play any of the games. I use it just to keep in touch with friendds and family.
loshimo11: Didn't the KDA have a FB entry
stan: Yes, there is a Fbook page for KDA
TedA: FB keeps me in touch with my San Francisco Bay friends. Skype also helps
poohsdaddy: Ted.... look me up there too. I'm at: This email address is being protected from spambots. You need JavaScript enabled to view it.
poohsdaddy: I'm always interested in having new friends there.
UTE: prp1...I'm 63 and have had simptums of KD for over 15 years... any questions you'd like to ask?
poohsdaddy: Yes, KDA is also on Facebook.... but haven't been there lately. Many of our ""mutual friends"" with KD are on Facebook too.
loshimo11: I just turned 56 and have had the symptoms for over 25 years...
Gary_KC: pooh, I don't know the face book. What is it?
stan: I'll be 58 in three days. I have had KD for about 25 years. I just take each day as it comes since there is really nothing doctors can do for us.
poohsdaddy: Losh, Ditto.... had symptoms for years, but was correctly diagnosed at age 50.... about 6-7 years ago.
TedA: I wil be 60 in September and was misdiagnosed in 19990 with ALS. They got it correct in 1998
Gary_KC: Stan, I am 53 years old. I have had KD for 17 years.
poohsdaddy: Gary.... If you type ""Facebook"" in your Web Search.... you should be able to set up your own account... or page.
TedA: slow fingers the morning getting them off the key :-)
loshimo11: Was originally misdiagnosed with ALS and given 3 years to live. However, after more than 10 years later, the docs knew that something was wrong with their diagnosis. It wasn't until the mid 90s that I was finally told I had KD.
stan: Gary, FBook is a social networking site- at least that is what it started as- now it is much more.
prp1: hi i am 51 only been diagnosed couple of months ago early days bit of a shock finding this difficult as still trying to work i am a carpenter
Gary_KC: pooh and stan, thank you. I will check it after the chat.
poohsdaddy: If I was able ti figure it out.... anyone can do it. My grandchildren are already using it. And they're even faster with things on the computers. :)
stan: I was originall misdiagnosed with a couple other diseases back when I was in my 20's. I could argue that I have had KD since my teens, but the medical profession describes ""onset"" differently.
loshimo11: prp1... what you're going thru is normal. Just hang in there... The KDA is a great source of information as well as mental support.
TedA: I have a question for everyone. I am having a new condo finished the way I want it and trying to decide how to do the tub/shower. Any sugestions / what works for you?
Gary_KC: TedA, you have a good question, haven't you?
stan: I still use a conventional tub/shower. I have installed handrails though. My nephew has a tiled, walk-in shower. He can wheel right in with his other wheelchair and shower, no issue with falling.
loshimo11: TedA... We have both a tub and a walk-in shower. Have never used the tub because once in there, I wouldn't be able to get out. I use the shower daily and it works out great for me.
poohsdaddy: Ted, I've recently added a grab bar to the wall, and one to the side of our bathtub. I also sit on a bench to take my showers with the ""removable"" shower head.
UTE: Ted, I'm probably the exception to the rule...I have a jacooze height tub...that I can push off the side to get up...getting out of it is another story
loshimo11: TedA... I've recently seen on TV some type of contraption that resembles a tub. You actually walk into one of these things; there's a seat that appears fairly high and it has a handheld shower. Looks interesting but I'm not sure what the cost would be.
TedA: I had used a standard shower base with curtain, grab bars and shower head on hose. Was thinking about a Roll-in shower and the added cost if it would be worth it
poohsdaddy: Luckily, I can still get in and out by myself. No one really wants to see my naked body any more.:}
TedA: Murray has a walk in tub
loshimo11: What is a walk in tub?
stan: I saw that commercial for the tub too. My concern is the seal on the door leaking after a few years.
TedA: It opens up on the side just like a door. Close the door and it is a tub
loshimo11: OIC
stan: Like a Model T
TedA: I do use a shower seat rather then stand to take a shower
loshimo11: Stan... the last commercial I saw, they claimed a lifetime warranty against leaks. It also empties out in a minute or so.
stan: Pooh, I understand your plight. Women only want me for my mind.
Gary_KC: TedA, I use a shower bench. It is much better than chair.
poohsdaddy: I've seen several different types too.... and have seen commercials for ""mobility"" aids. It's a lot cheaper to do with new construction rather than re-modeling to change an existing bathroom. (My younger brother ia a contractor).
stan: It empties faster if you open the door while there is water in it. : )
loshimo11: Gary_KC... A shower bench sounds a lot safer than a regular chair. Was this bench custom made?
loshimo11: Stan... LOLlol
Gary_KC: losh, you can buy online shop or retail stores like Walgreen.
TedA: A shower chair is a plastic seat that has ajustable leg heights and can have a back or not. I prefer no back
poohsdaddy: My shower bench was from Walgreen's, but I think you could get one from many different pharmacies.... or even on line through e-bay.
stan: Many of those seats fit most standard tubs. Could not find one that fit mine properly, so I used my plastic lawn chair for a while.
TedA: Home Depot and Lowes also have them
Gary_KC: TedA, you can remove the back for my shower bench.
poohsdaddy: My youngest son works for Walgreen's.... and they have a toll free # for people who need ""special equipment"" that may not be availabe in all of the stores. They really helped me a lot..... even dealt with the insurance to pay for it.
stan: Pooh, now that is good information to know.
TedA: I think the seats are better then having the contractor but a fixed low height seat at the OPPOSITE end fro the shoer head
Marsi: hello, my husband has Kennedys and is 59. I was looking for rails for our toilet that go back up to the wall when not used so we can get in and out of the shower. I found an Italian company but they were $1200 each. Anyone know of any cheaper in the US?
loshimo11: poohsdaddy... It's amazing how much info and assistance is available to people with disabilities. It would be nice if more people knew about it.
poohsdaddy: It's called ""Walgreen's Direct"".... and any of their pharmacists should be able to give you the phone number. I'll look it up for you later if you have any trouble getting it.
stan: This is the kind of stuff we need posted on our forums. I am a little concerned. There seems to be more activity on FBook now than on the KDA site Forums.
Gary_KC: I found my shower bench in as following link.
poohsdaddy: Mars, I just found a set of rails for $50. My physical therapist had a catalog with several different types.
loshimo11: Hi Marsi... We had a discussion about toilets and assistive devices a few chats ago. You may want to check it out.
TedA: Mars, try a comode with arms on both sides. Easier the ADA toilet to get up and fits right over the toilet. Cost about $100 - $200
Marsi: our toilet is kind of tight against our shower and sink, but I will look up past chats tks
loshimo11: I'm currently using a commode that fits over our toilet. Works out great for me since it's height adjustable and has side arms. My only problem is when I have to go #2 outside the house.
stan: Marsi, I'm sure there are a bunch of places in the U.S. that offer what you need, at maybe a cheaper price. It really depends on what you need. Maybe we can update the Excel file on the KDA site, or on the forums for you.
loshimo11: Well guys (and gal)... It's time for me to go... Breakfast time here in the west coast. Have a happy 4th and stay healthy and upright!!!
TedA: There are also ""arms"" that get mounted right to the toilet same as the toilet seat. Search for raied toilet seats and you will find everything from ""doughnuts"" to other things
poohsdaddy: My wife also bought a ""doughnut"" to raise my toilet seat by 5 inches. It's plastic.... and fairly easy to keep clean, and makes it much easier for me to get back up from a seated position.
UTE: Happy 4th all...see ya next time
Marsi: we're using a doughnut plus an other raised seat bolted down tks I;ll be looking happy 4th
stan: It looks like we are losing people as we near the end of the chat. So, before you all go, have a safe and happy 4th of July!
TedA: Need an ""inflatable"" doughnut to use for travel for those of us that can not get up from an ADA toilet. Maybe KDA built and sell that as fund raiser????
TedA: Have a happy and safe Independence Day celebration everyone!
Gary_KC: Have a great Independence Day, too. Bye
stan: Well, it's 11:30 here. Anything else on your mind before I go?
poohsdaddy: Stan... I found the info : or 866-924-9377
Paul Sramek: Have A Great 4th.
poohsdaddy: Thanks to all for sharing.... See you here next time. Bye.
stan: Great Pooh. I think it should be added to the Excell sheet on the KDA site if it isn't already there. I'll check.
poohsdaddy: Have a great weekend !!
stan: Take care