Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am very glad to see that you have added the personal stories, they are a great help. They give an outlook on what to expect with such a disease. It makes me proud to see people who are willing to express and share their stories with the world, keep up the good work!"

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Kennedy's Disease Chat Transcript  11-15-2008

Topics: Topic:  Open Forum

Host: Mike Goynes


Bruce: Good Morning, Stan
stan: Good morning Bruce
Bruce: Where are you located?
stan: Michigan. It looks like my fingers are not quite ready for this chat
Bruce: Winter does that to all of us. We are going to have below normal temperatures for a week here in Georgia.
Bruce: I call it the club syndrome. The only thing good that you can use the hands for is a club.
stan: 36 degrees here now, rain with 15 mph winds. Sometimes I would like to use a club on the computer, ha, ha
Bruce: We woke up to 51 degree temperatures and it is going to fall all day. By Wednesday we will have a low of 30 and a high of 40.
Terryw: Hello
Bruce: Morning Ron and Terry
Bruce: Where is everyone today?
Terryw: Don't Know, I sent a reminder
Ron: Good morning Bruce. Stan and Terry. How are you all doing?
Bruce: Yup. Saw it. Normally we have more on than this at 25 after.
stan: Not too bad.
Terryw: I think they will come
Ron: Bruuce--63 deg here in Penna.
Terryw: still early
Terryw: I have been Xmas shopping through the KDA site
Terryw: Use Amazon a lot
Terryw: aloyt
Ron: Was it easy, Terry.
Terryw: yes very
Terryw: as easy as going direct
MikeG: morning everyone
Terryw: hi mike
Ron: Wow!!!!Great.
stan: Morning Mike
Terryw: I ordered a GPS navigator
Ron: Hi Mike.
Bruce: I just received an email from Kurt Fischbeck. The NIH put in a new internet security system and he can't log on. He has tried several times and needs someone to help him from NIH, but that won't happen until next week. He apologizes, but can't do anything about it. Bummer!
Terryw: Garmin Nuvi 760
MikeG: :(
Terryw: :(
Terryw: just out luck
Terryw: our
stan: Story of my life. It goes with my initials, SH
Terryw: Maybe he can do Dec 6th?
CER: Hi to all from WV.
Bruce: Kurt said he should have tried to log on during the week, but hadn't had a problem in the past so didn't really think about it.
Bruce: I'll write him and see if that works for him.
Terryw: ty bruce
Terryw: I had my overnight sleep study a week ago
MikeG: I wonder if we could have him modify his firewall to allow the addonchat...?
Ron: How did it go?
loshimo11: Good morning everyone. This is Luis Shimomura logging in from sunny San Francisco.
Terryw: I have a real problem with the masks, none fit me, they said I have a strange face LOL
Ron: LOL
Terryw: the muscle tissue around my nose & eyes is gon so the mask leak
MikeG: it's probably a lot farther upstream than that though...
Terryw: Hi Luis
KellyC.: hello friends...
Bruce: Mike, he said he doesn't have access to a personal computer at work and everything else goes through the NIH firewall and he doesn't know how nor have the authority to change the confuration.
Terryw: Hi Kelly long time, how are you doing now
KellyC.: ok ty terry
MikeG: oh well.
KellyC.: Never got kelvins results yet should be soon
Bruce: For those just joining us: I just received an email from Kurt Fischbeck. The NIH put in a new internet security system and he can't log on. He has tried several times and needs someone to help him from NIH, but that won't happen until next week. He apologizes, but can't do anything about it.
Terryw: None of the mask for the Bi-Pap would work so they may try a Space suit helmet
Terryw: LOL
Terryw: full face
KellyC.: lol
Terryw: I don't want that
Ron: Who is JoeK?
Bruce: Well, Stan and I were commenting about how well our hands work as the colder weather sets in. Anyone else have that problem? (Just joking)
Michael17860: Hi All
Terryw: It looks like I have Joe K in a special guest category by mistake
MikeG: Terryw - our neighbor has tried a mouthpiece that he really likes. Paula is going to try that next... she's been through every mask that is made...
Gary_KC: Good morning. This is Gary Uchiyama joined from Kanasas City.
Terryw: let me know mike
Ron: Hi Gary.
Terryw: hi Gary
Ed M: hello everyone
Terryw: hey ed, nice run
MikeG: it doesn't have any attachments - just a mouthpiece that keeps the passageway open.
Ed M: I was pleased
JoeK: Just to advise all near Charlotte that the Carollina Medical has great help with KD and ALS
Bruce: Morning Gary. FYI - Kurt Fischbeck is having computer problems and can't get out through the NIH firewall this morning. He won't be able to join us and we are trying to reschedule him.
KellyC.: so dr fishbeck wont be here then??
poohsdaddy: Good Morning to all. Haven't been here for a while, but good to get back!!!
Terryw: Here is a question for everyone, How do you take a shower and wash your hair while standing without losing balance?
Gary_KC: Bruce, thank you for the info.
Terryw: I have been propping my elbow against the wall with one arm
Michael17860: use a shower chair
MikeG: Terryw - I sit in a chair... :)
Terryw: I should do that more, It is there but I dont use it so much because the shower head just pours on me
MikeG: either that or lean up against a corner
Bruce: Joe, when you get a chance, ask your neurologist if the KDA could post his information on our website (name, telephone number, address, hospital/clinic, etc.). We are always interested in expanding our list of doctors who know about KD.
poohsdaddy: I like to conserve water and energy by taking showers with my wife whenever we can.
Duane: lean against the corner and use one hand.
stan: Not much of a problem for me yet, but I do have hand rails in the shower. I have a small chair that can be put in the tub to sit on if necessary.
Terryw: that is what I do duane
Bruce: Terry, I bought a shower stool with arms and back. It works great.
loshimo11: Terryw... I don't. I've got one of those chairs and a portable thinggie that attaches to the wall. I use it to assist my arm while washing my hair as well as a balace holder when I'm standing up and lathering.
Dart!: Greetings All!
Bruce: Morning, Dart
Terryw: ty all for the tips
Bruce: For those just joining us: FYI - Kurt Fischbeck is having computer problems and can't get out through the NIH firewall this morning. He won't be able to join us and we are trying to reschedule him.
dean: Good Morning from Phila rain
Bruce: Terry, I haven't felt so safe and comfortable showering in some time. The shower stool allows me to forget about the possibility of falling and just allows me to enjoy the shower.
Bruce: Morning, Dean. Where do you live in Phili?
Terryw: Everyone remember to use the KDA site to shop this holiday season & send flowers
poohsdaddy: We also have a shower head that is on an extension hose for easier use. many types arte available at plumbing or hardware stores.
MikeG: I hope the Marriott has shower chairs.
Bruce: I just dug out the hand warmer packets last week. It won't be long and they will be part of my daily outings with my dog.
stan: I should start showering with the wife again. That could be fun :)
Terryw: :)
dean: pc locked up 10 minutes from phila
Bruce: Winter is upon us and I have plugged in the electric blanket again. Boy is that nice.
KellyC.: :}
Bruce: I use to live in Exton for eleven years.
Terryw: I like the mattress pad warmer
Terryw: the heat rises from under me
Terryw: good on the back
Bruce: My brother in Phoenix was complaining about the colder weather this week. He said the highs were in the 70's and low 80's. What a joke!
MikeG: that's probably better than the heavy covers - hard to turn under them.
dean: bruce exton not to far from phils where do you live how
poohsdaddy: I finally had the chance to get re-acquainted with my cousin who also has KD. He was also a participant in the study at NIH. Any news from them ???
Terryw: Bad fire here in Calif (Sagus) A trailer park is burning 100's of homes today and elderly trapped
Terryw: winds 60mph
Bruce: I retired in northern Georgia about six years ago. Didn't like the winters up there ... especially the occasional ice storm.
Bruce: Dean, I do miss the cheese steak sandwiches and pretzels, however.
dean: yes that is a problem in the northeast
KellyC.: Come to Canada for the winter Months you'll love it:}
KellyC.: lol
Bruce: Terry, the Santa Anna winds make life miserable out there ... especially during a dry season.
Terryw: yes
dean: Pat steaks in south phila
poohsdaddy: Weather is mid-40's, damp, and rainy today in WI withe forecast of 4-letter words...
Dart!: Winter is special in Winterpeg!!
Bruce: KellyC, I spent too many winters traveling to Prince Albert from Sask. No fun!
KellyC.: lol
KellyC.: yes bruce for sure..
Ron: Terry--are you in any danger from the fires?
KellyC.: I live in Prince Albert now
Terryw: I am going to sign out now, me and Susanne are going to an estate sale
Bruce: Have a great one
Terryw: No danger here
MikeG: cya Terry
KellyC.: tc terry gtsy
loshimo11: Bye Terry
Ed M: So long, Terry
Ron: Stay healthy.
KellyC.: well gtg to... see ya next time friends
Bruce: Dean, other areas of the country try to imitate Philly Cheese Steaks, but no one can match it for some reason.
Ron: So long Kelly.
dean: bruce that's the phila flavor i guess
Bruce: For those interested, the KDA has signed on as an organization to support the congressional amendment to change the Medicare waiting period for those on disability.
poohsdaddy: Our eldest son lives in Central Philly; and we spent a couple days there before NIH final visit in October.
MikeG: so Ed, do you miss running with Sean?
dean: ron what's the weather up there in lancaster today?
Ed M: Mike, I never ran with Sean - he was too fast for me
Duane: so long everyonel tie to run errands
MikeG: :)
Bruce: Currently the waiting period is two years. We are asking for it to be the six month waiting period for disability acceptance from Social Security.
Ron: 63 deg and rainy and windy.
MikeG: I couldn't believe he ran that Iron Man in Austrailia
dean: same down in phila
Ron: So long Duane.
poohsdaddy: Bruce -- Do you have any information that we can contact our representatives to support pending legislation?
Bruce: The change looks like it has some positive support.
Ed M: I was impressed! He made a great time
Bruce: Yes, I will try to get it out through a KDA Email this week.
MikeG: I can't believe you're turning in times as good as you are now!
Ed M: I was a bit concerned over the summer but I feel much better now.
MikeG: even beating last year's times!
Ed M: I just hope I can continue it
MikeG: me2
dean: If I retire and sign up for sc disability how long do have to wait?
MikeG: I'm just trying not to go to the chair any more than I have to now.
Bruce: I just received another email from Kurt Fischbeck. He will try to have the firewall problem resolved so he can be our guest on December 6.
Dart!: Mike, what 'chair' are you speaking of?
MikeG: power
MikeG: I'm still using a cane as much as possible
Bruce: Dean, if you work with your company ahead of time, the normal waiting period is six months. Use the guide on the KDA web site. I believe everyone that has used it was approved the first time.
MikeG: but Home Depot and WalMart are just too much for just a cane.
Gary_KC: Bruce, great!! thanks for the reschedule.
poohsdaddy: No chat room on November 29th; with our next on Dr. Fishbeck on December 6th?
Dart!: Good for you, Mike, to continue to try!
Bruce: Yes, the first Saturday of December.
loshimo11: Out of curiosity, what do you guys recommend to lift the chairs into the cars/vans/suvs?
Ed M: I need to go, I will see some of you next week!
Gary_KC: Bruce, YES, I used the guide you made 6 yeas ago to get the approval.
MikeG: yep - I know as soon as I go 100% to the chair - there won't be any turning back.
poohsdaddy: I have found that many stores have wheelchairs or motorized carts for thos who need them...and want to spend money in our economy.
Bruce: Kurt said that if he can't resolve the firewall problem by then, he will try to borrow someone's personal computer and see if he can get in that way.
MikeG: cya Ed
Bruce: Take care Ed
Bruce: I and several others I know use the Bruno Joey. It is great for a mini-van. It will not lift a person, however, just the chair.
Bruce: I use to use the hoist and swing arm system, but it was difficult to use on hills or uneven ground.
Bruce: If you need to be in the chair, there are several good lifts or ramps for vans.
loshimo11: I have a Toyota Highlander SUV and I'm thinking of getting something to lift my chair.
Dart!: Is the 'Bruno Joey' a hydraulic?And what is the company name, so I can get information?
Bruce: The interior height and entrance is important.
MikeG: The Freedom Lify is good because it is powered in both lift AND in/out directions
poohsdaddy: I am still able to get around fairly well; and am not looking forward to using a walker or wheelchair.
Bruce: Bruon is the name of the company and it is called the Joey. It is quite reliable. John Coakley turned me on to it and now I know several others including my brother who use it with their van.
loshimo11: Yeah. I've got a jumper seat (3rd seat) in the back which may limit what I can install in the back.
MikeG: yeah, that may have to go
Bruce: The Joey uses a battery and gears to lift (it is a platform) the chair and slide it into the back of the van.
Bruce: Sorry, Dart. BRUNO
MikeG: Bruce - so it's like an elevator?
Bruce: If you have a trailer hitch onn your Highlander, there are external lift platforms that also work. The only problem is that the chair is exposed to the elements and will need a cover.
Bruce: The Joey has a gear driven track that extends the platform out beyong the vehicle. Then it lowers it to the ground.
loshimo11: Bruce... Yeah, that's what I'm afraid of. The weather in San Francisco can be quite foggy which is not good for the chair.
MikeG: but it's stored in the vehicle
poohsdaddy: We have a dealership that specializes in vans and other vehicles for those with mobility problems in Milwaukee. They offer both new and used for people on a fixed incime or limited budget.
Bruce: What both my wife and I like about the Joey is that it is so easy to use. Just drive the chair onto the platform and use the remote control to lift it up and in.
MikeG: That's what John Mengel had on his new Toyota van that he was never able to drive or even get in...
Bruce: Yes Mike it is stored inside. You lose the third row, but if you don't need it ...
MikeG: yes - those are the very best!
Ron: Bruce I know you and Terry will be missed at the conference. Sorry you can't make it this year. I guess this might be my last conference. It is getting harder to do what we must do to get there.
poohsdaddy: John Mengel was my first cousin...Our mothers were sisters.
MikeG: same here Ron.
Bruce: The nice thing is that they don't need to convert your van so that when you want to trade you can just take the Joey out and put the third row back in.
MikeG: poohsdaddy - that's right I met you in Atlanta
poohsdaddy: ???? The only time I was in Atlanta was on my way to NIH for my first visit two years ago.
Ron: Bruce thanks for setting Kurt up to be our guest once again.
MikeG: ok, I thought I met you at the Atlanta KDA conference
poohsdaddy: I don'tt know that I've ever actually met anyone else with KD--other than my cousins.
MikeG: it was David Campbell
Bruce: Kurt Fischbeck has been a wonderful supporter of the KDA for all these years. We are so fortunate to have him on our team.
loshimo11: I met Dr. Fischbeck in the Vegas conference last year. He's a nice, approachable guy!!!
Bruce: Does anyone on today have a converted van ... one they can just drive the chair in and then drive away? I am beginning to research options for the future.
Ron: Well guys, I must go for now. Stay healthy till next we chat. Bye,
Bruce: Take care Ron
MikeG: poohsdaddy - have you seen this yet?
stan: Bye Ron
poohsdaddy: Yes--He's my other cousin with KD that I met again recently. His younger brother has also started to have many similar symptoms lately.
MikeG: I sent it out to all of John's contacts - I may have missed you.
MikeG: wow
MikeG: just like my family
poohsdaddy: Not yet, but will try to check it asap.
dean: Bruce i thought you go though sc dept for sc disability not your company
Bruce: Dean, some companies have a short-term diability plan. During the time a person is on short-term, they apply for long-term through Social Security.
Bruce: If a company does not have short-term, they need to apply for Social Security-Disability (SSD) while still working to minimize the wait period.
dean: ok i will have to look into that when the time comes thanks
Bruce: You need the support of your manager and HR to make this as seamless as possible.
stan: The company I worked for had short and long-term disability. Once the long-term expired, you either had to go back to work or file for Social security
Bruce: Dean, check out the guide on our web site and it will explain the process in greater detail.
Bruce: Yup, Stan, that was the way my company worked and it worked very well.
dean: so i can apply when i am still working ?
loshimo11: Well folks, it's time for me to go. Stay healthy and vertical!!!
stan: I did not go that route. I took the early retirement package instead of going on medical disability, and then filed for SS. Less paperwork and it turned out, more money.
MikeG: ok, cya loshimo11
poohsdaddy: I've been approved for Social Security, but am still fighting with HR @ USPS for disability, and/or re-assighnment .
Bruce: Dean, it is too detailed to get into it here, but if you work with your manager and HR and go on short-term disability without the chance of returning to work, yes there is the possibility. You are not actually working while on ST-D.
Bruce: A good friend who was a doctor said that you have to treat the SS-D process just like any business venture. Know the rules and the traps and work the system tirelessly.
dean: thank you bruce I have to go now i will talk to you later
Bruce: Take care
Gary_KC: Bruce, I want to say one more time. Thank you very much for making the great guide. It helped me lots when I appied the SC disability.
MikeG: good chatting with everyone - until the conference next week or the next chat - stay safe!
Bruce: You are welcome. I am pleased that it was effective.
stan: Bye Mike
poohsdaddy: Mike--I'll try to e-mail you within the next week. I'm still learning how to use the cimputer and internet.
Bruce: Well, I need to sign off and take my dog for a walk (he walks and I ride my golf cart). Take care and stay vertical.
stan: Bye Bruce. Bye everyone. Time for me to sign off too.
Gary_KC: See you at next chat, all.
fl-don: morning all
poohsdaddy: Thanks to all til next time. I've gotta get moving to go to church to sing for a funeral. Bye.
Dart!: As I don't have a key to lock up, I had best go too. Nice to be with y'all.
adalducky: hi
adalducky: i´m adalberto gómez from México