Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"As a mother with a son who has KD, I appreciate those of you who are so dedicated to informing the public of this rare and difficult disease."

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Kennedy's Disease Chat Transcript  08-7-2010

Topic:  Open Forum

Host: Lou Tudor


BEGIN CHAT

UTE: Good Morning Elvspretzl, hows the weather where your at?
Stan: Good morning everyone.
UTE: Good Morning Stan, how's thing in Michigan?
Stan: Good. Sunny and about 70 degrees right now.
UTE: We've been staying in the low 90s
UTE: Do you swim in any lakes nearby?
Stan: We've had a lot of 85 + degree days here, high humidity too. Usually too hot to do anything outside.
Stan: Don't swim, even though I have another place on a lake.
loutudor: Good morning all!
UTE: Good Morning Lou
loutudor: It's HOT here in FL
Stan: Hi Lou, how are you? Some of us are here, and now you too.
UTE: What lake is your property on Stan?
Stan: Prairie Lake
Elvspretzl: I was away from the computer ... Good morning
Stan: Morning
loutudor: Elvspretzl where are you from?
UTE: I grew up om Washington Lake right by Cambridge Junctiom
Elvspretzl: I'm in Rhode Island.
Stan: That's not too far from me Ute.
loutudor: nice in RI!
Elvspretzl: Great day today.
Gary_KC: Good morning. This is Gary joining in from Kansas City. It is another hod and humid day.
Gary_KC: sorry, hot
Stan: Hi Gary, welcome to the show.
MikeG: same here Gary_KC
loshimo11: Good morning everyone. This is Luis Shimomura joining in from a typical cold summer day in San Francisco.
loutudor: We are all from different states except Mike and I both from FL...
MikeG: how cold is it loshimo11
Stan: I'm also in the state of disrepair.
loutudor: HA =D
MikeG: :)
loshimo11: We live near the ocean, so I'd say it's about 56 degrees right now.
MikeG: nice!
terryw: hello
loutudor: Hey Terry!
Stan: Hi Terry
UTE: Morning Terry
MikeG: I remember going out in the bay one year on a 35' racing boat - we all about froze!!!
loshimo11: Terry!!! How are you??!?!
MikeG: it was fun though
terryw: I am doing fine today
poohsdaddy: Good Morning all..... Good news today..... Finally got the cast off on Tuesday after ten months !!
MikeG: I wonder if Ed forgot...?
loshimo11: MikeG... wheareabouts was this?
MikeG: SF
loutudor: Good news Pooh!
Stan: That is good news Pooh. Now you have to learn to walk again.
MikeG: I believe it was 1993
UTE: Pooh, what part of you was cast?
loshimo11: The water in the bay is always cold. No matter what time of the year it is.
poohsdaddy: Thanks... It's seems relly strange to havetwo shoes. lol
MikeG: I know exactly what you mean poohsdaddy
loutudor: Was that cast on due to a fall?
UTE: I prefer to fall backwards instead of forwards...I've had two big toes black and blue for a few weeks
MikeG: If you want to be really safe - look into the AFOs that Murf wears now
loutudor: Did I miss the chat when Murph taled about the AFO's?
poohsdaddy: Yes, Mike.... I think you had some pictures with an ""Air-Cast"" like mine. And yes, Lou ... I fell and borke my leg October 5th, 2009.... and again January 15,2010.
loutudor: Ouch!
MikeG: yeah, and falling forwards is almost impossible with AFOs on...
Stan: Just about everything else on me is broke, but I've never broken any bones yet, even though I have fallen many times. Yes, I'm knocking on wood.
MikeG: you's better, Stan
loutudor: You obviously look b-4 you leap! :)
MikeG: I did trip and fall forward one time with AFOs on and it messed up my knees for about a year!
loutudor: Anyone planning to attend the KDA conference in Nov?
MikeG: SURE!
MikeG: wouldn't miss it for anything
Stan: So, what is supposed to be on the agenda for today? I can't attend the conf. Broke.
loshimo11: Yes!!! Just haven't signed up yet. Will be doing that soon!!!
MikeG: great!
loutudor: I really look forward to meeting some of you in person!!
poohsdaddy: So, now, I've learned to use my walker all the time.... and to slow down :? Had two surgeries.... two plates and 14 screws the first time and even more the second time. :(
MikeG: that's what credit cards are for Stan ... :)
Stan: Maxed out.
loshimo11: Luckly for us, the conference is not really far away. We're planning on a short trip to Las Vegas first, then doing San Diego later.
MikeG: poohsdaddy - I also use a walker - have found many uses for the seat in transporting stuff that I need to carry from one place to the other.
loutudor: Sounds like a great trip, Losh!
Stan: When I was in the hospital last year, all the doctors swore I'd need a walker and oxygen. I showed them!
Elvspretzl: I'm considering the convention, but it's a long trek from Rhode Island.
MikeG: loshimo11 - we're going to Vegas first also - on the 6th
Ron: Good morning guys.
MikeG: maybe be able to win enough to pay for the conference... :)
loshimo11: Elvspretzl... That is a long trip!!! 3k miles or so?
loutudor: Morning, Ron!
Stan: Morning Ron. How are you?
Elvspretzl: It's a long walk.
UTE: To be safe I use a walker too indoors
Ron: OK.
MikeG: how's it going Ron?
poohsdaddy: We're not able to attend this year's convention either.... Wanted to go to Chicago, but it got cancelled.
loutudor: Do most of you also have a motorized scooter for outside or long walks?
Stan: Crawl around on your hands and knees, then you don't need a walker and you don't have to worry about falling.
MikeG: oh yeah!
loutudor: Stan...love your humor!
UTE: Pride Quantum Powerchair
loutudor: The scooters are a blessing!
Stan: No scooter. I'm still wlking. I use a cane just in case for added stability.
loshimo11: MikeG... The wife and I went to Reno last weekend. Lost more than our moneys. Somehow, I managed to lose part of the nosepad in my glasses as well as my remote control to the car!!! Haven't figured how I accomplished that!!!
Elvspretzl: I haven't gotten any sort of walking aids yet ... I use a can when doing extensive activities .. travel, or standing for a long time.
Gary_KC: Lout, I have two powered wheelchairs and one powered scooter.
loutudor: Gary...that's giving you a lot of mobility!
Stan: For the long trips around my property, I use the riding mower or the ATV.
MikeG: loshimo11 - what were you drinking?
loutudor: My dad made great use of a golf cart...
Gary_KC: Yes, I recently bought a portable travel powered wheelchair.
Elvspretzl: What type of diets are people finding helpful ?? Can you tell the difference? I cannot have coffee, or much sugar items w/o noticble consequences the next day.
loshimo11: I'm looking at installing one of those electrical lifts in my 2004 Toyota Highlander but haven't found one that will fit.
MikeG: me too Lou. Golf cart is our second vehicle!
Elvspretzl: Sorry to have strayed from the mobilty topic ... I'll stay with that for the moment.
loutudor: Seems like the auto dealer could help, losh
Stan: Elvspretzl I'm on a see food diet. I see food, I eat it. My doctor said I need to keep my weight up. Of course, I do have a feeding tube because of the swallowing problems.
MikeG: Elvspretzl - same here. I'm down to one cup a day. I used to have a pot a day! No salt or sugar either.
MikeG: ...and I juice most every vegtable known to man...
UTE: The ALS Motor Neuron disease clinic doctor told me not to lose weight
Elvspretzl: Is it suggested we avoid salt too? I hadn't heard that. Makes sense, I suppose.
loshimo11: MikeG... What are you talking about??? This all happened before I even hit the casino!!! I knew it was not going to be a good day; and gambling wise, I was right. Had a great time though!!!
Elvspretzl: Juicing .. Yeah, I should be doing that...
MikeG: my BP suggests that I have no salt.
Stan: My doctors have not said anything to me about avoiding salt, caffiene, or anything else.
loutudor: Does the caffeine affect your digestion?
Elvspretzl: If I have a cup of coffee today ... which I will not ... I'd expect to be completely exhausted tomorrow and have considerably less strength as well.
Elvspretzl: Just wondering if anyone else experiences that ........
loutudor: Since you feel better w/o it...I'd leave coffee too!
MikeG: after I started juicing I noticed sodium in canned foods and started paying attention to caffiene intake. My BP is much lower now.
Stan: No problems with my digestion that I have noticed. I'm having a second cup of coffee right now.
loshimo11: After my morning jug, I make visits to the bathroom quite often.
MikeG: :)
loutudor: Moving right along....
MikeG: btw, I called Ed and couldn't get an answer...
loutudor: Thanks, Mike
Elvspretzl: How about metabolism ... If you haven't eaten balanced meal throughout the day, do you suffer energy and strength losses the following day ... or the same day?
UTE: As far as obstructions to the throat goes...I do alot of coughing after meals or due to AC or any kind of breeze
loshimo11: Ed is such a smart fellow. I wish I could shrink and package him so he could translate all the technical/medical stuff into English.
Elvspretzl: Is Ed the scheduled moderator?
poohsdaddy: I had given up coffee too for about six months..... Thought the cream and sugar were causing weight gain. Wrong. It didn't make a difference. I'm still heavier than before my leg problem.
loutudor: How do you all handle coughing?
MikeG: yes
UTE: cough drops on the bus in the AM
Stan: Elvspretzl, yes, if I don't eat, I suffer, especially since I am under-weight already.
loutudor: Must remember to breathe thru the nose...
poohsdaddy: I have cough drops nearby (or in a pocket) or a drink of water which both help.
MikeG: Elvspretzl - the only thing that causes me to have strength loss the next day is too much exercise - or working too hard in the yard.
MikeG: I can't take too much getting up and down... wears me out.
loutudor: That's pretty common, Ute...
Stan: Yes, I also have to watch it so I don't over-do it.
loshimo11: Over activity seems to be a dangerous thing. That's why I stay away from it.
poohsdaddy: Mike, I agree. When I feel good and do more one day, I feel exhausted for a day or two afterwards.
MikeG: yep!
loutudor: Drs say everything in moderation...
MikeG: that's right - and the older we get the more we have to moderate...
Elvspretzl: Yes, it's very difficult to find a balance to what is too much activity and what is not enough.
Elvspretzl: I'm more worried about doing not enough sometimes.
Gary_KC: Elv. If you feel fatigue next day, you did too much.
Stan: It helps if I take a lot of breaks during the day.
Elvspretzl: Thanks, Gary.
Stan: I work a half hour, 15 minute break, work another half hour, another break...
loutudor: Good plan, Stan
Elvspretzl: I feel fatiqued a lot ... but even if I haven't done much the previous day. That's what makes it difficult.
Stan: I think we all have days like that, Elvspretzl
Elvspretzl: That's a good model, Stan ...
Elvspretzl: That about how I do it as well.
loutudor: Just standing for too long can be hurtful...
Elvspretzl: Does anyone have CPK (Creatine phosphokinase) issues. Or, is anyone familiar with anyone with that issue with KD ?
MikeG: always plan on 3 to 4 times as long as it used to take to accomplish a task
poohsdaddy: I got up, got dressed, fed the dog.... and did the dishes this morning. Already tired...This is my break today !
UTE: It's the getting up that's my challenge...I push off with my hands...grab right above the knees and push
Elvspretzl: I've noticed that if I'm at an event and I stand for a lot of it. That's trouble the next day too.
MikeG: Elvspretzl - I think we all do. It's part of KD.
loutudor: bar stools instead of chairs for sitting...
Elvspretzl: Okay ... I just wanted to confirm that MikeG.
Elvspretzl: I hadn't read that anywhere that I recall.
MikeG: yep - it's the muscle disentegration factor which we all have.
poohsdaddy: I think it's like that for most of us Elvspretzl.
Stan: Mike, it took me a week to fix the stairs on my deck and build a handrail. When I get done here, I'm putting new blades on my neighbors riding mower.
loutudor: Stan, you're a busy guy!
Stan: I try to stay busy. Next project, rear brakes on my truck.
Elvspretzl: Protein gets dumped into the bloodstream at a higher rate ... I think that's what causes the high CPK ... Acurate ??
UTE: Stan, when can you come over...I have both those things that need to be done
MikeG: UTE - that's exactly what I do... but it gets harder every year. Balance makes it even worse!
poohsdaddy: We watch our youngest grandson most days.... he's got more energy than my wife and me put together.
Stan: Where you at Ute? I've been known to travel as far as 100 miles.
Elvspretzl: Yep, me too ... I need a new handrail intalled. But it'll be a long trip for you, Stan.
UTE: oops...Salt Lake City
Elvspretzl: :}
poohsdaddy: Near Milwaukee, WI.... Sunshine and hot already today.
MikeG: we're getting some nice rain here right now... how's it been where you are Lou?
loutudor: fwe sprinkles today...hot and humid
loutudor: ...but we have lovely winters!
MikeG: yep - just hope we can dodge the hur....... again this year!
Gary_KC: Elv, our CPK level is 2 to 5 times higher. I think Bruce can tell you for your questions in detail. but he is not chat today.
loutudor: I hate putting up hurricane shutters!
Elvspretzl: I need to go ... I do have a bunch of things I need to attend to today ... This is my first time here and will plan to be back. Are there other times besides the posted times when people chat here?
UTE: Elvs...hope to see ya next time
loutudor: See ya again I hope!
Elvspretzl: Thanks ute.
poohsdaddy: Elv, many of us are also on Facebook. You find us there too. Thanks for joining !!
loshimo11: Take care Elvspretzl.
loutudor: Scheduled only Elvs...
Stan: Take care. Some of us email back and forth too.
MikeG: Elvspretzl - the chat room is open 24/7
Elvspretzl: Please look for me on Facebook too ... can I post my f.b. page link here?
MikeG: just set a date and time and let people know when you want to chat.
MikeG: sure
loutudor: Is your Facebook under the same name?
Elvspretzl: My email: This email address is being protected from spambots. You need JavaScript enabled to view it. ... Anyone, please feel free to get in contact with me. Thx.
Stan: We will find you, we have ways.
MikeG: :)
loutudor: What state?
Stan: The little one, Lou
loutudor: Thanks, Stan :D
poohsdaddy: Mine is: This email address is being protected from spambots. You need JavaScript enabled to view it. I'm always op[en for new friends.
Stan: Elvspretzl is in Rhode Island
loutudor: Tnx...bad memory
loshimo11: Is there anyplace in the KD website that we can post personal email addresses?
Elvspretzl: I'm just checking to see how it's easiest to identify my on f.b. ... I have a cousing with the same name.
Stan: Yep, Of all the things I miss, I miss my mind the most
Elvspretzl: cousin
loutudor: HA!! me 2
poohsdaddy: I play a few games on Facebook almost daily.... and see other Kd-ers there often.
loutudor: More and more getting on Facebook....
MikeG: gotta run - it was good chatting today! Take care everyone.
Elvspretzl: Here's my profile link: http://www.facebook.com/profile.php?id=1391671200, I don't know if it will work, but pls. try. Just put KDA in the friend request note.
Elvspretzl: You too, MikeG.
poohsdaddy: You're each welcome to add me as a Facebook Friend.... if you don't already have me on your lists.
loshimo11: Take care MikeG
loutudor: Lots of KDA people on Facebook now...fun to communicate
Stan: Bye. Take care. Search for Stan Highe on FBook. There can be only one!
loutudor: For sure...bye Stan
Gary_KC: I got go. Stay cool from heat wave, please. Bye.
loutudor: Take care, Gary
loshimo11: Gotta go. Everyone stay health and upright!!! We'll chat again in a couple of weeks!!!
loutudor: Have a good one, losh
UTE: So long until next time
Elvspretzl: No luck with the ""Stan Highe"" search.
Elvspretzl: Did anyone try my link?
loutudor: Try just putting in the last neme...
Stan: No problem. I'll find you.
loutudor: We will find you! :)
loutudor: Bye to all...thanks for a great chAT!
poohsdaddy: Thanks to all.... back in a couple weeks.
Elvspretzl: Thank you all. Peter.
UTE: See ya peter


END CHAT