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  07-18-2009

Topic: Open Forum

Host: Terry Waite


Terryw: Hello
loshimo11: Good morning everyone. This is Luis Shimomura joining in from a cloudy morning in San Francisco.
Terryw: Send us some clouds and fog to cool us down
loshimo11: Where's the rest of us?
Terryw: supposed to be 109 today
Terryw: I don't know Luis
loshimo11: We recently had a heat wave here in SF. Got into the mid 80's. Our neighborhood hit high 70's.
Terryw: LOL
Terryw: heat wave
Terryw: so how have you been
Terryw: hi Pooh
loshimo11: Been OK... have had some vertigo the last week or so. Not KD related.
Terryw: Luis, I have had it for the last month, positional, how do you get rid of it?
Terryw: when I lean my head back or forward and to the left
Terryw: not real bad though
loshimo11: For some reason I keep telling everyone and everything to quit moving around but no one listens.
shar: Hi everyone, this is all new to me so I'm just trying tofigure out what is going on with this. I think I got it Shar
Terryw: It can be a really sickening feeling sometimes
Terryw: mine is almost gon now
Terryw: hi SHar
gary_kc: Good morning all. This is Gary. It is nice sunny days in Kansas this weekend.
loshimo11: I think mine is ear related. This is the second time I've had it this year. It eventually goes away but it's not a very good feeling.
Terryw: Yep Shar, it looks like you got it
poohsdaddy: Good Morning guys -- Mild today in WI.... Had 1 warmer day with AC on, but mostly 60's-70's.
Terryw: Ahhhhhhhhhhhhhhhh I want the cool
loshimo11: Hi Shar... Welcome!!!!
Terryw: So Shar, what's on your mind? do you have any questions for us?
Terryw: Hi UTE
poohsdaddy: Terry, Feeling better than last time?
UTE: Hi Terry and gang
Terryw: a bit, better , yes
shar: So how does this work and what is the purpose of it. Is it just to talk about anything
Terryw: Hi Yak
yakima kid: Hi everybody
Terryw: Shar, we talk about dealing with HD, research, and anything
Terryw: KD
poohsdaddy: Shar, Where are you from? and how are you doing?
shar: HD?
Terryw: some chats we have in research doctors that talk about current research and their labs findings
Terryw: next chat we have a special guest researcher
Terryw: to answer questions
Terryw: Aug 1
loshimo11: WooHoo!!! I like guest researchers!!!
shar: Is this not for Kennedy's Disease spouses?
poohsdaddy: It's always interesting to see how others are doing with KD, and the daily struggles.
Terryw: Shar you probabaly want to kount the Signifigant others chats that is held on the 2nd Sat of each month a 8AM PST, but you can joine any of the tregular KD chats also
Terryw: Sorry for the typo
Terryw: want to join
poohsdaddy: Stick around if you want to share your perspective with us too...
shar: So, I'm talking with people who have KD?
Terryw: do you see the little icon unser your name on the right side of the screenb that says Significant others
shar: yes
Terryw: that is the room that you will want to click on once you come in here on the 2nd saturday, it is a special room that I created for souses & such
Terryw: spouses
Terryw: my fingers don't seem to want to work well today
loshimo11: Hey... Has anyone else been receiving what appears to be erroneous emails from our friend Alexander in Brazil? I've received 2 in the last day or so.
yakima kid: no
UTE: No erroneous here
Terryw: Luis, I got a couple, He probably put you on his mailing list from when we exchanged e-mails at a [past conference
poohsdaddy: I only get e-mails from Terry when to get up--for the chats.
Terryw: how has everyones progression been? Stable, slow, fast?
shar: Have a nice day you all. God Bless
Terryw: bye SHar
loshimo11: Alexander's emails are in portuguese...from the little Spanish I know, it seems he's talking about his ongoing project.
Terryw: I think so also Luis, the web has some sites that will translate
poohsdaddy: Difficult Week--Couple of falls, but was able to get back up after short rest on the floor.
yakima kid: I wonder how people are dealing with scooters. I couln't handle a ramp. Finally got a hoist installed
Terryw: sorry pooh
gary_kc: Terryw, I feel slow. I am planning to buy a power wheelchair.
Terryw: Yak, yes, even though those ramps are light for others they are so hard for us to move & lift
poohsdaddy: My brother-in-law suggested putting a pulley form the ceiling to help me get up.
yakima kid: significant strengh loss in my legs the last few weeks
Terryw: great Gary, you will like it
Terryw: Yakima have you been over doing it?
yakima kid: A friend adapted a Bruno hoist to fit my Honda Odessy
Terryw: cool
loshimo11: It would be great if someone could invent some type of gadget to help us get up from the floor.
Terryw: I wish Luis
yakima kid: Had to use a piece of plywood for the base
UTE: Probably slow to moderate, but I've had the symptoms for 15 to 17 I have only about one placce in the house that I can get back off the floor and I use public transportation with a powerchair
poohsdaddy: My Disability Retirement has finally been approved... Hopefully, I'll start receiving my pension within a few weeks.
Terryw: great news Pooh
loshimo11: Congrats poohsdaddy.
poohsdaddy: I usually use a chair to get back up from the floor.
loshimo11: Haven't fallen recently when I've been by myself (lucky). Don't think I could get up by myself.
yakima kid: If I can get my knees under me and reach a door handle I ca get up.
poohsdaddy: Having no income since November 2007 has been a struggle, but my wife and I learned how to get along with what we had....
Terryw: I carry a cordless phone on my belt when am alone and out on the property
Terryw: Pooh, I am sure that the disability money will ease things a bit once it starts
yakima kid: My cell Phn goes averywhare with me
poohsdaddy: Terry, Ditto... I keep the cell phone in my pocket all the time.
loshimo11: If you fall down and there's someone willing to help, there are ways when even a light person can lift a heavier person get back on their feet.
Terryw: I am in a cell dead zone up here in the mountains
yakima kid: bummer
UTE: My spouse is amazing the way she picks me up at restaurants, etc...
Terryw: WHat pick up line did she use LOL
poohsdaddy: Does that affect all brands? The commercials for some say that they're good anywhere.... Are they lying?
UTE: I deserved that one
loshimo11: LOL:}
Terryw: Pooh, I live on the side of a hill and the tower is on the opposite side, my neighbors all get cell reception
yakima kid: A dead zone!!
Terryw: yep
loshimo11: Just move the hill to the other side and all your problems are solved!!!
Terryw: :)
UTE: Sometimes it can be comical when people try to pick me up boss got one leg and one of my arms up on a desk and a second helper put all fours on the floor letting me push on his back
Terryw: have them grab you by the belt if you wear one
Terryw: it works best
poohsdaddy: It's great when anyone is there--and willing to help.
UTE: isn't that an atomic wedgy
yakima kid: Poohs--what kind of work did you do?
loshimo11: UTE...The easiest way to get someone to get you back up is to try to get on your knees, have the person face you, bend straight down and give you a bear hugh, put your hands around his/her neck and then have the person lift you up.
poohsdaddy: I worked for the United States Postal Service as a Rural Letter Carrier since 1987 full-time and a school bus driver part-time almost as long.
loshimo11: I meant to say bear hug, not bear hugh.
poohsdaddy: I had hoped to be able to work na few more years.
loshimo11: Has anyone else got any additional info on Bruce's mentionings of upcoming trials????
Terryw: will be right back
loshimo11: Are we on hold?
yakima kid: I'm surprised that the PS doesn't have better retirement plan.
Terryw: am back
poohsdaddy: They do, but the local management kept giving me more and more paperwork.
UTE: As were talking about retirement plans... did anyone else have a 401K and what kind of work did you do?
yakima kid: Yes, the local burocrats! (one day I will learn to spell)
poohsdaddy: Anyone hear from NIH or about any research lately?
Terryw: Yes, I had a 401K plan, I was a Network guy for a large company
gary_kc: I had a 401K plan and rollover to IRA.
poohsdaddy: I also had a 401K from my part-time job that had to be rolled over to an IRA when I left... Lost $$$$ in the past year or two, but slowly comin back.
loshimo11: I had a 401k plan which has turned into a 101k plan.
Terryw: :D
poohsdaddy: Hopefully, the economy will improve... Investements and Property values need to go up again!
yakima kid: Yeah. my IRA has dropped to half but still paying a small dividend
yakima kid: I'm hanging on to my GE and FORD stock
poohsdaddy: The Insurance Companies should pay all of us a bonus rather than giving it all to their execs.
loshimo11: Does anyone here do any frequent stock trading?
yakima kid: Not me, I'm long term!
Terryw: Sorry everyone I have to go
poohsdaddy: There are some good deals out there for anyone who has the money and desire to spend.
gary_kc: By the way, Robot suit HAL is being used at rehabilty facilities as trial in Japan. The venture company is planning to lease the 500 HALs with $1700/m for the facilities this year in Japan. It is still expensive but they are planning to reduce the price with more production. So I hope we can buy it near future as medical equipment.
UTE: See ya Terry
loshimo11: Take care Terry.
yakima kid: Robot suit with french cuffs
loshimo11: Gary... I saw a clip recently in one of the local TV channels which they were showing Honda's robotic mobility assistance gadget. Looks cool (and uncomfortable).
poohsdaddy: My IRA is through an agent for American Funds, but thinking of switching to a local service agent.
yakima kid: check fees and stuff
poohsdaddy: Thanks to all for being here today... Hope to see you again next time with a few more for the guest speaker. Bye.
UTE: Until things went sour a couple years American Funds were I'm in shock
loshimo11: See you poohsdaddy. Take care of yourself.
loshimo11: I'm hoping we've seen the bottom of this economy and that we're on our way back (hopefully).
yakima kid: Brekfast is ready! got to go! Bye
gary_kc: I got go too. Have a nice weekend, all. Bye.
loshimo11: Well... Gary and UTE... I will also sign off. Have a good one and stay vertical and healthy.
frajabaru: buenas tardes desde SPAIN
frajabaru: se sabe algo sobre los ensayos clinicos del NIHN sobre el LEUPRORELIN
frajabaru: ??