Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

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Kennedy's Disease Chat Transcript  01-17-2009

Topic:  Open Forum

Host: Bruce Gaughran


BEGIN CHAT

Bruce: Hello
billeric: Good morning from lovely Phoenix
UTE: Good Morning Bill and Bruce
Terryw: There we go
UTE: So Bill what's the temp today?
Bruce: Good Morning World
billeric: Are you guys routing for the Cardinals tomorrow?
Terryw: morning
Bruce: I am
billeric: Will be 75 today.
stan: Good morning everyone!
Bruce: They are the real Cinderella team this year.
UTE: Go Arizona!
billeric: Were all in shock here. Nobody predicted this.
Bruce: We have been very cold in Georgia. Morning temps in the single digits and it never makes it above freezing.
Bruce: I moved south for a reason and now I feel betrayed.
Ron: Good morning guys.
Ron: CCCCCCCold here in Penna.
Bruce: Ron, I see the temperature up your way isn't moving much today.
Ron: 10 deg
poohsdaddy: Good Morning....Brrr....It's even colder in WI -25 to -40 F with the wind chill factor !!!!
Bruce: Even Florida is getting hit hard, but at least it warms up there during the day.
stan: My nephew says it has been 45-50 in Alaska. Very strange warm weather. +5 here in Mich with -15 wind chill
Michael17860: HI All
Bruce: I remember being young once in Minnesota. We loved to hunt and ice fish. 25 below was child's play ... because we were dressed for it and our blood had antifreeze in it.
Bruce: Stan, I saw that also. Anchorage was warmer than Birmingham, AL today.
gary_kc: Good morning. This is Gary Uchiyama joining from Kansas City. It is a nice day but COLD.
MikeG: Good Morning ALL!
Terryw: ok my fingers have thawed enought to type now
Bruce: Morning Gary and Mike
Terryw: I was out with the horses
MikeG: 50 in sunny FLA this morning...
MikeG: hi Bruce
billeric: About the same in Az. Mike
stan: My nephew is in North Pole, Alaska. He can see Palin's house from his. :}
Ron: Rub it in Mike.
MikeG: :)
Terryw: One of my horses charged me from behind yesterday and hit me from behind and I fell under his feet, close call
fl-don: gm all
MikeG: come on down!
Bruce: My brother called from Phoenix yesterday, Billic, and he rubbed it in about the temperature. They were thinking about turning on the AC.
Terryw: my dog ran in and guarded me
Bruce: WOW Terry. Which horse was it?
Bruce: Morning Don
Bruce: Morning Jack
Terryw: the baby which is now 900lbs
JACK: Morning all
Ron: Good DOG
Bruce: Well, let's officially get started. BEGIN CHAT
loshimo11: Good Morning Everyone. This is Luis Shimomura checking in from a nice sunny day in San Francisco.
Terryw: she is always by my side when I take the horses in & out
billeric: I would still be there Terry
dsproul: Morning-yawn
Bruce: I am thankful for my electric blanket.
Terryw: the male dog stays back because when he was a pup he was stepped on my the horse
Michael17860: It was -5 this morning in Paxinos PA
Bruce: Morning Luis
MikeG: sounds like you need glasses w/rear view mirrors, Terry!
Terryw: yes, I learned yesterday to be aware of him from behind now
fl-don: fl sunny but a little cool
Ron: You should sell the horse and get another dog. lol
JACK: Was -3 when i went to wrok yesterday
MikeG: how do you guys stand that kind of COLD??? Even with gloves my hands would be nubs...
Terryw: it was a small bump at me but as you know even the small bumps can send us down, an able person I don't think would have fallen.
dsproul: So what's new with KD?
Terryw: Right in the pile of manuer
Bruce: Over the last six weeks I have had a physical therapist come to my home twice a week. He really has helped me with my strength (especially leg strength) and my balance. He has also helped improve my self confidence.
billeric: I fall enuf without something pushing me.
loshimo11: Our daughter bought us an electric blanket this past Christmas. Best present I've ever gotten!!!
Terryw: Manuer is soft though
Terryw: I had to crawl through the manuer over to the gate to get back up
Bruce: Terry, it is a crappy job, but someone has to do it. :)
JACK: What type of therapy does he have you do or your legs
Michael17860: Bruce what kind of balance exercise do you do?
MikeG: nice exercise guide on the forum, Bruce!!!
Terryw: I have started using the Wii balance board for balance
Bruce: There is a whole series of exercises designed for balance and strength. I wrote a new exercise guide and published it on our web site. I will be adding to it shortly (a few more exercises he recommended).
Terryw: Nintendo WII that is
poohsdaddy: I also go to a physical therapy -- to exercise and maintain both strength and abilities with arms and legs.
MikeG: I'm just getting started with it but can 'feel the burn' in my legs already.
Terryw: I think bruces new guide is a safer bet though
loshimo11: Did anyone/everyone get the holiday picture Alex (our Brazilian friend) sent us a few weeks ago?
Bruce: I haven't used a cane in over three years. I only used the walker occasionally. I now am using the walker regularly and the cane for short trips. I never would have thought I would be using that again.
MikeG: I thought about getting a WII too Terry. How is it?
Terryw: The Wii is good because it makes you use your arms to do things
JACK: I know kd hits the legs, but i am having a lot of troube with my arms. I will be doing something and my arms just loose all strenght
Bruce: I told Terry the other day the my PT recommended the Wii. He said it can be excellent exercise (playing tennis, bowling, etc. ... even from a chair).
Terryw: I can bowl again Yea!!!!!!
Terryw: ANd tennis
poohsdaddy: I continue to use my single-point cane whenever I go outdoors; and have been looking into getting a wheeled walker.
Terryw: and others
Bruce: Jack that is normal. The progression is in the lower extremeties initially ... starting at the legs and arms and moving up to the shoulders and back.
MikeG: loshimo11 - I did not get that picture but I have a new email address so that's probably why.
JACK: Thanks bruce, because i will be carrying some thing and my arms just go limp
Bruce: What I liked about the PT, is that his goal was to improve my life around the house by making things easier to do. The exercises start very easy and progress (tweaked) as your strength and abilities and confidence improce.
JACK: Or if i am swinging a hammer i can not even lift it to hat a nail
stan: I'm kinda jealous. I don't really see any improvement doing the exercises. Physical Therapy is almost out of the question since the closest place is 60 miles, one way. Not using a walker, but I am needing my cane more.
gary_kc: Bruce, you are right. I have weakness for shoulders and back, too.
loshimo11: Alex has continued to carry on his dream project and I guess he's quite busy. That may be the reason why we haven't heard from him in a while.
Bruce: I also learned I was using the cane and walker incorrectly. Once he adjusted the height to the correct position for my height, everything became a lot easier and I was amazed at what it did for my confidence.
dsproul: my dream is to be able to hoist my scooter into my honda
poohsdaddy: My therapists let me come in almost daily to use their equipment... and generally to increase the wieghts and endurance gradually.
MikeG: How far along is Alex?
UTE: Bending over to pick something up and getting off the floor are my biggest challenges
Terryw: same here UTE
Bruce: There are currently 35 exercises to choose from and I will be adding another six more shortly. Initially, one of the toughest exercises was just to stand at attention for one minute without holding on to anything. Once that was accomplished, we moved on from there.
MikeG: same here
MikeG: trying not to fall while doing it
Terryw: how is hand and wrist strength with everyone, some days I go to lift a glass of water with my dominant hand and I cannot do it. I have to use my other hand. Anyone else?
Bruce: The focus of almost every exercise is to move very slowly and also hold positions for a count of five or ten before releasing. Less reps ... less wear and tear on the muscles ... but, the same or better results.
Ron: My therapist noticed that we lock our legs when walking or standing. She asked why? I said to keep from falling down.
Bruce: Terry, that is common also. I have the problem also. Look at my guide for the wrist and hand exercises. They are helping me.
MikeG: Terry, I have that same problem but it's sually with BEER!!! Oil cans...
JACK: I have days it takes two hand to hold up my cup of coffe at work
UTE: I need the counter and two hands to lift a glass
Bruce: I am certain everyone has problems with the cold. My muscles just don't want to work when it is this cold outside.
loshimo11: MikeG... He was traveling during the holidays but he sent me a picture of what the building will look like. He also mentioned that 50% of the infrastructure on his farm has already been done (don't know what that means). I can forward his email to anyone interested.
MikeG: however, with me, it's the sholder strength as much as it's the wrist.
dsproul: my challenge is walking more than 50 feet--with a cane. Then I have to find a chair and there are so many places that don't have any place to sit. try to find a chair in a dept. store!
stan: I get involuntary movement. I'll be holding a glass and spill it all of a sudden. No grip strength to open bottles or jars. I use a strap wrench.
Terryw: my hands are getting so think I look like I am starving
Terryw: only bones & skin
Bruce: Stan, I have some funny stories about that same thing happening to me at social or business meetins/events.
Terryw: stan they make electric jar openers now
stan: That's me too, Terry
MikeG: stan - I have the same problem - typing is really a problem...
billeric: dsproul-a walker is the best. A place to sit and to help with the walking
Terryw: I can type way better than write
stan: Yes, I know. But I'm old school, BFH
Terryw: I can hardly write a check
UTE: In a restaurant I need a chair with arms...against a wall...and even then my wife usually has to get me up
loshimo11: Just found out my original CAG repeats. Does that change over the years? Mine was 50 when tested many years ago.
dsproul: Yeah, my legs used to show muscles--now just bones
poohsdaddy: Have you tried squeezing a ball to maintain your hand strenght?
Terryw: I have to have susanne fill out forms and such for me
stan: I don't go to restaurants anymore because of the choking risk.
dsproul: Don't forget to stretch
Michael17860: Mike who is Alex and what is he doing?
Bruce: Ref CAG repeats, it is my understanding that it really doesn't change, but different labs might report slight differences in the actual count. That happened to me.
billeric: I take my walker in most places. Much better than most chairs.
loshimo11: Thanks Bruce. Is 50 CAG repeats about average for KDrs?
MikeG: loshimo11 - my new email address is This email address is being protected from spambots. You need JavaScript enabled to view it. I would love to get down there someday and see what he has. It really sounded interesting at the conference.
dsproul: Not to change the subject, but has anyone tried HGH?
Bruce: There is no average. The range is from around 37 to 60. The higher the more severe is my understanding.
Bruce: No dsproul. What is it?
loshimo11: Bruce...That's what I thought. Thanks for the info.
poohsdaddy: No, but many other vitamins and supplements. Like cherry and/or blueberry juices.
dsproul: growth hormone
UTE: Stan...the choking my doctors have told me goes away after not being able to breath for a few seconds...minutes... and the worse that can happen is to pass out
MikeG: Michael17860 - he's from Brazil and he's building a complex down there for handicaps
dsproul: Althetes use it
dsproul: Illegallly
loshimo11: Michael17860... He's also a fellow KDr.
Michael17860: WOW thats cool, Good for him.
stan: Thanks UTE, but I don't much feel like eating after an episode.
Bruce: I believe there is some research on creating the super mouse use a growth hormone.
Terryw: WHen the throat closes it is called a Larengeal spasm, the muscles contract, as they begin to starve for Oxygen the muscles start to relax
Bruce: Morning Dart
dsproul: At 82 I don't worry about long-term effects!
poohsdaddy: Anyone hear from NIH for results status lately?
Terryw: WOW full house today
CT_jameson: hey everyone
Terryw: hi
MikeG: Alex came to Atlanta for the conference there and presented his plans. Really nice land and great plans!
Michael17860: dsproul how do you get HGH?
dsproul: I'd like to find something that works now!
JACK: I thought they said feb wass when the test results would be done
Bruce: No, it is my understanding that they will notify participants shortly of whether there were on the real medication. The final reports isn't do out for a couple of months however.
UTE: Morning Jameson!
Bruce: Morning CT
dsproul: I'm hoping to get my doctor to approve it
dsproul: Althetes seem to get it easily
JACK: I thought lindsay said around feb
CT_jameson: PA-Paul, you must be looking forward to football this weekend!
Bruce: Jack, I could be wrong on the timing, but that was the last that I heard.
PA-Paul: hi not a big fan of any professional sport
CT_jameson: oh
dsproul: Thanks Bruce I will look forward to seeing it
JACK: Sooner would be better
Ron: My therapist is trying to improve my stregnth. I told her I would like to maintain what I have. Hopoing it wouldn't get worse.
UTE: Weve got Cardinal fans though!
billeric: and how!
Bruce: I am routing for the Steelers and the Cards
dsproul: My therapist didn't really understand what KD was all about
Michael17860: Hey Paul how you doing?
Dart!: Howdy to y'All
PA-Paul: just hanging in there
PA-Paul: are you my friend from Paxinos
Bruce: Part of the process of working with a PT is to educate them on KD and the damage that over-exercising can do. Trying to find the right balance is important to seeing long-term improvements.
Michael17860: Yes I am
PA-Paul: did your email change?
Bruce: Where is Paxinos?
PA-Paul: pa
Bruce: Where in PA?
gary_kc: I have a question. If the NIH PH2 trail has positive result, will the PH3 begun with more locations?
PA-Paul: near Knobles grove north east of Harrisburg
dsproul: Thats wy I quit therapy and just do home excercise
poohsdaddy: Bruce, ditto...If I do more one day; I pay for it the next day by resting again.
Michael17860: Yes , Sorry that I did not send it out to you. It's This email address is being protected from spambots. You need JavaScript enabled to view it.
Bruce: Thanks
PA-Paul: Thanks you very much
loshimo11: Gotta go in a few minutes. I'm supervising some work at my daughter's house. Hope everyone stays healthy and vertical.
Michael17860: How is the new House Paul?
Bruce: Gary, I am not certain.
PA-Paul: it is good
Bruce: Thanks for joining us Luis
JACK: Have to go to my grand daughters basket ball game. You all have a good day today and a better day tomorow. Terry stay away from the horses...lol
PA-Paul: ill email you with long story
Bruce: Take care Jack
Michael17860: Paul I got a new wheel chair, I am now looking for a van. ANy ideas out there on where to get one?
Bruce: For those on Medicare, it will pay for 4-6 weeks of Physical Therapy. There is no cost.
MikeG: Bruce, is that home therapy?
Bruce: Michael, now is a good time to buy a van. In the most recent Quest magazine several showed reduced pricing on everything.
Bruce: Yes Mike - twice a week.
Terryw: Bruce is that 30-45 individual days or for therapy over only that peiod
Terryw: period
Michael17860: Thanks Burce.
Bruce: If you aren't looking for a tricked out van, the dealerships in our area are begging for buyers ... any buyers, and they will negotiate.
MikeG: nice - I didn't know that. I went TO a therapist but never had one come to me...
Michael17860: Bruce, Sorry
MikeG: thanks!
dsproul: I tried a wheelchair but a scooter is the way to go if you can use a small light-weight model
Bruce: Terry, it is my understanding that it is four to six weeks of in-home visits - twice a week (consecutive).
Terryw: ok
Michael17860: Bruce what area are you talking about?
PA-Paul: I just got a flyer with some of the best prices i ever saw?/
Bruce: I live in northern Georgia ... right south of Chattanooga. But, the deals are everywhere. The dealerships are huring big time.
Bruce: hurting
dsproul: Still take money!
PA-Paul: No these vans are fully handi cap equiped
UTE: I use a power wheelchair for work and manual quickie chair for my wife t wheel me around...does anyone have one of those manual wheelchair lifts on the back of their car?
Michael17860: Paul where did you get the flyer from?
MikeG: Michael17860, that's true. If you can lift 30#s, the GoGo scooter will break down into 3 or more peices and go in the trunk.
PA-Paul: Yes I have a bruno lift
Bruce: Everything takes money, unfortunately. With the market being what it is, I am certain everyone is hurting.
Terryw: UTE I have an electric
PA-Paul: Mike Ill try to find it and email you..
Michael17860: Thanks Paul
PA-Paul: Just my 2 cents keep doing what you are doing and try to never stop. it doesw not ever come back
dsproul: I'm looking at a light weight hoist to modify for the back of my Honds SUV
Bruce: I still have my Bruno Joey lift for the back of my van. It was a great investment for us.
dsproul: Honda
Terryw: Don quit leaving to check the football scores LOL
fl-don: at work
fl-don: :( :(
Terryw: no TV?
MikeG: dsproul - I just upgraded my FreedomLift for the elevator type lift and put my old one in the loan closet in Tampa.
Bruce: What elevator lift did you get, Mike?
dsproul: A local shop estimated $4000 to install a hoist recomended for a Honda
Terryw: that seem high
poohsdaddy: I received an offer of a free rial membership to the YMCA by typing www.Your Name.freeYpass.com to get details on nearest location, etc.
Bruce: dsproul, that seems a little high for a hoist lift, but I could be wrong.
MikeG: I think it would be too expensive to ship but if you wan to make a trip down here...
PA-Paul: YES way too high
Bruce: My platform (elevator) lift that goes into the back of the van cost $3,000 installed.
MikeG: I can give you the name of the girl at the loan closet and you could see if it's still available.
MikeG: it's FREE!
MikeG: for the drive down
Bruce: What elevator lift did you get, Mike?
dsproul: I can buy an economy lift On-line for $350 but I will have modify it for my use. It fits inside which is best for me.
PA-Paul: and what vehicle is it into
MikeG: not sure of the name but it cost me $1,300 used.
MikeG: installed
Terryw: chat with you all next time, I gotta run.... I mean crawl
dsproul: I have a Honda Oydessy
fl-don: bye t
PA-Paul: Bye Terry
Bruce: Sounds like a good deal. Does it work on the outside or pull the chair inside?
MikeG: the chair is much more stable on it.
Ron: So long Terry.
MikeG: inside
PA-Paul: which vehicle is it installed in
MikeG: I'll go check and see if there's a name on it.
dsproul: It will hoist the scooter and then I can push it inside
billeric: Gotta go guys. Rout for those cardinals and stay upright.
MikeG: Toyota Sienna
PA-Paul: Mike G which vehicle is it installed into
PA-Paul: dsproul Yes I have one like that and it is good. once you get the hang of it
PA-Paul: thanks Mike
Bruce: I am hoping to find a van that I can load from the driver side rear door so that I can then just sit down on the drivers seat.
fl-don: bruce,
PA-Paul: Bruce when i find the flyer i just recieved I would be happy to emailo you also
Bruce: Right now I load it in the rear.
Bruce: Yes, Don
fl-don: i think all enteries are from passanger side for safety
dsproul: What brand of hoist do you have. so far I have found only one supplier that make a hoist for small scooters
Bruce: Thanks, Paul
PA-Paul: dsproul Mine is a bruno
Bruce: Don, I have seen a couple that load from the driver's side. Now they might have been modified illegally, but they sure look easy to use.
dsproul: Illegally?
PA-Paul: I just found a rollaramp that can install either side
dsproul: :)
MikeG: Bruce, I don't see a name on that lift at all... just a S/N
Bruce: If Don is right, then they must be illegal, but they sure look good.
fl-don: i enter from pass side, then slide into a drivers seat that moves a foot to the back and swivels. some drivers seats are removed and w/c can be moved to replace drivers seat
dsproul: I tried a ramp but it was too heavy for me
poohsdaddy: Another patient (from PT) has a van that uses a fold-out ramp instead of an elevator/lift. And, she uses a power wheelchair that looks very heavy.
Bruce: Don, do you have a full size van or mini?
fl-don: chrysler t&c
fl-don: mini
PA-Paul: the rolaramp has little weight it is mounted to floor and electric moves it out
Bruce: That is what I have.
fl-don: lowerd floor
MikeG: the FreedomLift was on the passenger side... it was nice because it could swing the chair all the way around to the sidewalk if you wanted it to.
dsproul: My lynx weighs about 120 Lbs
PA-Paul: rolaram supports 1100 lbs
fl-don: rollx
PA-Paul: yes
Bruce: I saw the chairs that slide back and swivel. How do you like it? I gather you have the lowered floor to give you more height inside.
fl-don: yup. love my van
fl-don: gives me independance
Bruce: Don, have you had any problems with the clearance (road to frame)?
fl-don: werll guys, gotta go to work. cya in 2 weeks
fl-don: no problems with clearance
Bruce: Take care Don. Thanks for joining us.
fl-don: semper fi
MikeG: cya Don
Ron: OOH RA
poohsdaddy: Bye -- Good luck to all in staying healthy and upright til next time !!!!!!!!!!!!!!!!!!!!!!!!!
Bruce: I will have to leave in about three minutes to get ready for the board of directors meeting. You can continue chatting for as long as you like, however.
PA-Paul: GUYS try the 3rd page of Quest mag this month new veh equiped 19k 20m k
MikeG: me2, take care everyone... until next time. Stay vertical!!!
PA-Paul: $19000 and 25900
Bruce: Paul, yes that was what I was talking about earlier. The prices have really come down as inventory doesn't move.
UTE: Thanks Bruce...have a good week
Bruce: Thank you
stan: Gotta go too. Need to see if I can get the snowblower running. Take care all.
Michael17860: just got my Quest yesterday, I need to check it out.
PA-Paul: best prices i ever saw
Bruce: Me too
PA-Paul: web site is www.fminow.com
dsproul: Thanks Bruce, I'll set the 7 oclock alarm for next time
Ron: So long for now. Stay healthy till next we chat. Bye.
Bruce: Well, I have to run (as I mentioned). Take care and stay upright.
Michael17860: Got to go, Paul I'll e-mail you later.
PA-Paul: Bye
PA-Paul: thanks
gary_kc: Bye all.
UTE: So long all