Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript  01-02-2010

Topic:  Open Forum

Host: Murray Williams



Trailblazer: Good morning, I have the flu and got started on antibiotics 3 days ago. How are you Murf.
murf: HEY tj?
Trailblazer: Yep it's me
murf: Bummer no flu here
murf: I had dinner last night with 2 old friends from 22 yrs ago
Trailblazer: That's good, ut oh got to go make a pit stoop be back shortly, Jerry said he's headed out to your place Monday!
murf: One just movered from Canada to Magnolia
murf: It was good to remanise about old times
Trailblazer: Well maybe you can run out to see him
Trailblazer: Hope you have a Great New Year this year!
Trailblazer: Well gotta run to Tomball and pick up 2 prescriptions, I'm glad medicares picking up the tab again!
DanT99: Good morning & Happy New Year
murf: morning
murf: Happy New Year everyone
murf: Morning
poohsdaddy: Good Morning all... and Happy New Year !!
murf: Happy New Year
UTE: Good Morning and Happy New Year Y'all... where's Magnolia and Tomball?
murf: North West Houston TX
poohsdaddy: Sunny and cold in WI today.. about 10 degrees with wind chill of -20-25.. Brrrr !
murf: we have two guys up there with Kennedy's
murf: Brrrrr 44 in Houston
DanT99: At freezing in VA, dusting of snow last night
UTE: We're finaLLY getting up to 32...feels better than 10
murf: I don't know how you do it
murf: I sieze up below 50
Bruce: Good Morning
murf: morning Bruce
Bruce: Murf, I will trade your 44 for my 19. All this week we are supposed to be in the teens for the low and low thirties for the high. TOO COLD!
murf: I couldn't do it anymore
poohsdaddy: Any ideas as to how we could get more KD-ers to participate in our chats ?
Bruce: I thought I moved to the SUN BELT?
murf: I'll have to think on that
poohsdaddy: Maybe they celebrated a little too much for New Year's eve.
Bruce: Poohsdaddy, it seems that participation has dropped off recently even when we have guest doctors and researchers. I cannot figure out what has changed.
murf: Maybe
UTE: Maybe by mentioning about our group in Quest Magazine or at MDA clinics?
Bruce: UTE, how are you doing these days? Are you still working (taking the bus to work)?
poohsdaddy: Do we have any guests scheduled ?
Bruce: None in the hear future.
Bruce: near
UTE: It takes a mile to get to the bus thru the snow...but use Paratransit sometimes...getting weaker...but still making it in to work by a wing and a prayer
murf: we usually call in January for them
UTE: How's everyone else doing?
Bruce: Our paratransit system is quite good here. When I broke my leg (several times), they have been quite helpful.
DanT99: Chats have to be relevent--those months that we don't have a guest scheduled perhaps we should announce a topic such as mobility, occupational therapy, etc.
murf: I'm sure there is one in Houston but I've never checked
murf: Not a bad idea
Bruce: I am losing the use of my left thumb. The cold makes it not function at all. My fingers have always been affected by the cold, but now my left thumb? It is hard to do much when a thumb does not work.
poohsdaddy: I'm still going to PT for a few weeks... finally learning to walk better wearing two shoes.
DanT99: We have the Handi-Ride system here but the funding has been cut way back
murf: I'm still driving but figure that will end in a yr or two
UTE: I get the numb right hand in my sleep but both feet are that way from neuropathy
Bruce: I am looking for a van that I can drive into. I presently use a Joey, but recently, I can no longer go anywhere without someone to put the chair on the joey. Bummer
poohsdaddy: My wife has been doing the driving since my accident in October... (broken leg).
Bruce: UTE, Dr. Taylor has discussed the loss of sensation in the feet quite often. It appears to be an unstudied condition that many of us with KD have.
murf: I'm trying to get things set up so I will not have to use a vehicle
murf: Getting food and mail delivered to the house etc
Bruce: Murf, are you finding that you miss work?
UTE: Bruce... I feel for you...I can't use the manual lift in my suv to lift my chair in anymore either...glad there's public transportation
murf: no I have dinner last nightwith a guy i worked with 20 yrs ago and I'm quite happy now sitting on mt butt
murf: I was moving at 120 mph for the last 30 yrs so I need a rest
murf: no energy left
Bruce: Good to hear. I did not miss work when I was forced to retire. I missed some of the friendships and daily interactions with fellow workers, but not the stress. But, many of stayed in touch and several have visted me.
murf: yup same same
DanT99: Bruce-- I am having the same problems, when my hands get cold I can't even turn a key. My neurologist prescribed a regimen of Gabapentin (1500 mg/day). My feet and hands don't get quite as cold and I get better use of my hands.
UTE: Sitting on the butt is an interesting phenomenon...I can only get up from a lift chair
Bruce: Morning Carofer
murf: LOL
murf: morning
Bruce: What is Gavapentin supposed to do? Are there any side affects?
poohsdaddy: Murf, ditto... I used to work very long hours; and even had two or three jobs for years.
murf: no I'm on 1800 a day and it kills the leg pain
carofer: hi a33
carofer: hi all
murf: carofer Happy New Year
Bruce: What is the weather like in Santa Cruz this morning?
carofer: cloudy and cool
carofer: no rain or snow
murf: I'm loosing the feeling in my toes (both feet)
DanT99: It's for nerve pain which according to the doc feels like cold. I haven't had any side effects, but dizziness is the most common side effect.
Bruce: Yup, that has been a problem for me for several years.
murf: Legs are always cold and I think circulation is the problem
Bruce: My legs feel cold, even in the house. I at first thought it is a circulation issue, but I exercise every day. Now, I believe it is a nerve issue.
murf: ok
murf: explains the pain
UTE: Does anyone else think it's rediculous the way power wheelchairs are like computers and TVs...when they lose their memory your expected to throw them away?
Bruce: Murf, I am not certain, however. The doctors ran some tests (pin prick) and they said that my nerve response was very poor in the lower legs and almost non-existent in the feet.
murf: me too
Bruce: UTE, what do you mean?
murf: had the pin prick thing too and little reaction
Bruce: My doctors could not believe the nerves were that bad.
murf: nerves in feet going out
Bruce: I can be in bed with the electric blanket on and two quilts over the feet and they are still cold.
murf: My feet are the warmest when I wake up
UTE: I have a Quantum and Jazzy made by Pride.... the Jazzy which also costs about 10,ooo dollars had the control is 10 years old... the control costs over 1400 but now places tell me not worth fixing as parts ARE OBSOLETE
murf: after that they just get cold and stay that way
carofer: sounds like circulation
poohsdaddy: Have you tried ""thermal"" or ""hunters"" socks ?? They're battery operated and available from sporting goods departmet at Wal Mart, K Mart
murf: I just bought a jazzy on eBay for $700
Bruce: UTE, I now understand. Yes, I totally agree. I have a five year old chair and was told the same thing. Jazzy had made so many advances recently, that the older chairs and their parts are not recommended for repairs.
Bruce: Poohsdaddy, I am actually researching that right now. Thanks
Bruce: Ref. Jazzy, I have had three motors burn out and now my gear box on the left side is going out. My controller has been giving me fits for over a year and the only possible solution is a replacement (very expensive).
Bruce: I am also wondering if the MDA will cut the annual repair allowance now that contributions are down?
murf: no they said that's ok for this yr
poohsdaddy: Are any of you on ""Facebook"" ??
murf: yes I am
Bruce: No, I tried it but do not like it. Too old I guess.
carofer: me 2
murf: Terry is also on FB
carofer: i don't use facebook much
UTE: sOMETIMES I still beleive in the tooth fairy and Frankenstein...and their have to be Jazzy parts that can be taken off a chair in the junk yard and put on mine for hundreds not thousands of dollars
carofer: can we create a kd group on facebook?
Bruce: UTE, you should talk with Ron Wiker. He, at one time, had several used Jazzy chairs. He might still have a part or two laying around.
murf: we have a kd page on FB
poohsdaddy: We've found many ""old friends"" and ""younger"" relatives, as well as a number of fun games to play. It gives us practice with hand/eye coordination... and reflexes.
Bruce: Good idea
DanT99: I'm on facebook everyday since I can't work FB has become a lot of fun. Check out the KDA group page.
Bruce: Murf or Dan, please add the link here so that others reading this can find it on FB.
poohsdaddy: I'll have to check the KD page. Maybe others (KD-ers) are also unaware of it.
murf: just search KDA in groups on FB
Bruce: I also tried Twitter, but that really was a waste of time in my opinion.
murf: ya twitter is lame
DanT99: Ijust checked it, 194 members or fans
UTE: Bruce, what state does Ron live in? maybe his e-mail is listed with the KDer list?
DanT99: on FB
murf: good
murf: I got $100 donations from that page
murf: for us
Bruce: Try this email: This email address is being protected from spambots. You need JavaScript enabled to view it.
murf: Ron
murf: ?
Bruce: He lives in PA.
Bruce: My wife is tired of me watching college bowl games. There are so many these days.
murf: ok missed the line above
Bruce: I have drifted away from pro bowl until the playoffs, but still love college ball.
Bruce: Poohsdaddy, are you a Packer fan?
poohsdaddy: Most of the time, but not a fanatic about any one team... I watch a variety. (still angry about Brett Favre)
Bruce: I still remember my last trip to WI. The sales rep had me eating cheese balls (a whole plate of them was served for lunch as an appetizer).
Bruce: I was going to ask about Brett ... you answered that.
UTE: Murf, my school plays TExas Tech today...but most of my favorite teams have lost except the UTES
Bruce: Mich State, right?
murf: could be a ghood game
UTE: Spartans, right!
Bruce: I wonder what Tech will do with Leach being dismissed right before the game.
poohsdaddy: I think there's far more to his story than what was told before or since his retirement.
Bruce: I have many fond memories of the Lansing area.
DanT99: I'm from Ohio so I was thrilled with the Rose Bowl yesterday, a very good game.
UTE: I agree, there are two sides
Bruce: The Rose Bowl stigma was finally overcome
Bruce: The Pac 10 have not looked good at all this year.
poohsdaddy: Watched the parade, but fell asleep during the football games. :(
Bruce: I am still looking forward to the big matchup between TX and AL. That could be a good game.
Bruce: Has anyone had any experience with the Permobil chairs ... and if so, the C500?
poohsdaddy: Haven't seen the news yet today... only the weather forecast for flurries and more cold air.
murf: not me Bruce
DanT99: I have to get going, everyone have a good day. bye
Bruce: Take care and Happy New Year
murf: Cya Dan
poohsdaddy: Could we get a guest to discuss the variety of medications and the side effects with KD-ers ??
murf: we could ask for sure
murf: but there is still not trearment
Bruce: My sales rep is trying to talk me into the C500. It is a top of the line chair (very expensive). I am not convinced I can afford it, but it sure fits nice.
poohsdaddy: Could be interesting ?? Maybe Dr. Fishbeck or someone from NIH could join in again...
murf: that's the one that stands on 2 wheels?
Bruce: Kurt usually joins us in the Spring.
poohsdaddy: OK... a chat to look forward to being part of the discussion.
Bruce: Murf, no this one is a front wheel drive chair. The seat lifts up and the back goes back and the legs lift up. It is pretty amazing and I felt the best I have ever felt in a chair when I demo'd it.
murf: ok I saw two of those in San Antonio a few yrs ago nice chairs
Bruce: We will be sending out invites to the researchers in the next few weeks to see who wants to be a guest this first six months.
Bruce: Just the base (motors and wheels) retails for $12,000.
murf: wow
Bruce: By the time the chair is built, I could buy a nice van.
Bruce: But again, I have never felt so good. It is amazing.
murf: what benefit will you get from the chair?
poohsdaddy: I've only recently started using a four-wheeled walker with hand brakes. But, I try to get around a bit without using it in the house.
UTE: Both my Pride chairs have seats that lift and it sure comes in handy on weak days
Bruce: Murf, I need a chair with a lift seat because it is getting harder for me to stand up from my current chair. The seating specialist at Emory Rehab Clinic recommended this chair. It is supposed to be the Cadilac of the chairs. When you recline in it, it feels better than my Lazyboy rocker.
murf: ok that would solve a few problems I'm having
Bruce: It has a memory setting that allows you to program every possible position you want.
murf: wow like my Lexus
Bruce: You just push a button and it reclines to the perfect position for you, or raises you up. It also allows you to move around in the raised seating position (10 inch lift).
poohsdaddy: You guys must have $$$.... more than me.
Bruce: You move slowly for safety concerns.
murf: I could reach my kitchen cupboards again
murf: I can't aford it either
Bruce: Poohsdaddy, no not necessarily. It was the typical sales pitch ... try it and you will like it. After I fell in love with the chair, I was told how much it would cost. $ticker shock!
poohsdaddy: Time for me to get going...Hope you're all well til next time. Thanks for being here today !!!
Bruce: The rep is now checking into a demo model that might be more reasonable. I am still wondering if a Buick with many add ons would be better than a Cadilac stripped down (something I might be able to afford).
murf: ok Happy New Year
UTE: I lucked out with the insurance companies with my chairs but since then they only cover 5000 with a 10% deductible
Bruce: I am on Medicare.
carofer: nice seeing u all
Bruce: Take care everyone and stay safe.
murf: join us again
Bruce: Murf, thanks for hosting the chat today.
murf: no probs
carofer: iits early here == but i will try 2 get here more
UTE: I'm om MedicARE AS well as my wifes insurance...but Medicare wouldn't even touch paying for my chair,,,some lame excuse about it being for a heavier person
murf: anything ie\else men?
murf: MDA used to pay $2000 every 5 yrs
murf: no more
UTE: Murf and Carofer, hapopy new year, see ya NEXT TIME
carofer: ok
murf: they will pay $500 for repare
murf: u 2
murf: guys have a good yr