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Kennedy's Disease Chat Transcript 11-06-2010
Topic: Open Forum
Host: Bruce Gaughran
Bruce: Good Morning
dant99: Good morning
Bruce: We are cold in Georgia this morning ... 35 degrees. What happened to fall?
carofer: good morning all
carofer: from 45 degrees cloudy felton, ca
Bruce: My hands just are not working well this morning.
Bruce: Where is Felton?
Bruce: Morning Ted
dant99: In the 40's here in SW Florida, record lows!
Bruce: Morning Stan
TedA: Good morning from Richmond, VA
Stan: Goog morning all on this 32 degree sunny day.
carofer: 60 miles south of san francisco near santa cruz
Bruce: During the winter I have to wear gloves in the house just to keep them working.
Bruce: Thanks, I know that area. Pretty country.
Bruce: Morning Gary
Stan: Yep, it's cold. Fingers are not yet working properly.
Gary_KC: Good morning, Bruce.
TedA: I lived in the SF Bay Area for 30 years
Bruce: These mornings I have to remember to not button the jeans because my thumb will not unbutton it easily after my morning trips with my dog.
Bruce: The Bay area is great and north of their is wonderful country ... especially the Redwood Forests and Napa Valley.
dant99: Wheb my hands are cold I can't get my pants buttoned to begin with
Stan: I do the same thing Bruce. But then my pants want to fall down.
Bruce: Mike and I were talking the other day and joking about this problem ... buttons ... zippers ... and preparedness for having to go to the bathroom when the hands just do not want to work.
Bruce: Morning Rich
TedA: I cut the button hole a little larger and lie down on the bed to button it, gavity helps!!
carofer: anyone try button loops for pants buttons?
Bruce: Yes, Ted, I have used that technique especially enlarging the hole.
Bruce: My feet just never seem to get warm either.
Stan: Hey TedA, you and my brother are neighbors. He lives in Redwood City.
Bruce: Morning Poohsdaddy ... what is it like this morning in WI?
TedA: For the jeans and other pants zippers I use fish swiell (sp) with clip. It works great.
UTE: buttons on pants are definitely a near impossiility... particular since my arm is in a splint from a broken arm
poohsdaddy: Good Morning .... Low 30's here today.
Bruce: Rich, what happened?
TedA: Stan I am not in Redwood City any longer. Moved to the Richmond, VA area in Dec 2009.
Bruce: We are as cold as you Poohsddaddy.
Stan: Didn't know that Ted. How is Richmond?
carofer: i am about 50 miles from redwood city
Bruce: Morning Rhode Island
elvspretzl: Good Morning.
dant99: Ted I just moved in May from Virginia Beach to Ft Myers FL really miss virginia
UTE: I tried walking in the pitch dark from the bathroom in the middle of the nite...its a first for breaking an arm
Bruce: I pulled out my box of Hot Hands this week in preparation for WINTER!!!
carofer: anyone going to convention in san diego next week? i will be there
TedA: Richmond is great. Have some family here plus friends and prices are a lot lower the CA. Gas is 70 cents per Gal less and houses are 1/4 to 1/3 the price!
Bruce: Where did you you break it? Upper or lower arm?
carofer: california houses will be cheaper soon, too
TedA: Try using a night light so that it is never completely dark!!
Stan: I'm born and raised here in Michigan. Lived here all my life. It' gets cold, but I have no desire to leave. Won't be long and I'll be the only one still living in Michigan.
Bruce: This year's conference is doing well ... there are over forty associates and 17 or 18 doctors/researchers.
Bruce: Morning Marsi
dant99: I wish I could attend but it's not practical this year
Bruce: Morning Ron
Marsi: Good morning
Bruce: Is the Lancaster County Ron?
elvspretzl: Wish I could make it to San Diego, but I'll wait for the next one on the east coast.
Ron: Good morning to all.
Stan: I can't swing a trip to the conference this year .
UTE: broke both bones on left arm just above wrist...it hasnt healed after a month with a cast
elvspretzl: Sorry to hear that.
Bruce: My neurologist said one time that people with muscular Dystrophy type conditions that their bones heal quicker.
Bruce: Morning Terry
carofer: maybe we can have a gotomeeting type of hookup at the seminars so everyone could interact from anywhere?
elvspretzl: I have a question about fatique ... Do many of you experience a lot of fatique?
Bruce: Maybe he was just trying to make me feel better
terryw: [b] Yes Elvs many of us do
elvspretzl: Great idea carofer.
Bruce: Elvs ... I experienced a lot of fatigue when younger. Now that I am less active, I do not have that problem.
UTE: the bones of all the metatracils in my feet have healed fast over the last few years but not the arm
terryw: [b]Hae to take frequent lay down time
Stan: I get fatigued very quickly. Legs mostly, especially when I am raking leaves this time of year.
elvspretzl: Seems I'm more fatiqued as I'm less active.
elvspretzl: Don't think I'll be raking leaves this year.
Stan: I try to stay active. Never could sit still very long.
Bruce: When I was still working and doing a lot of walking in mills and warehouses, I would become wiped out.
dant99: 5-10 min on my feet is all that I can do at one time, recovery time is about 20 min
Bruce: I noticed that I am weaker in the winter.
Stan: Raking leaves has become a real chore, especially with 5 acres to do. So, this year I bought a mechanical assistant.
elvspretzl: Thanks for the input on my question everyone.
dant99: If I push it the legs just go out without a lot of warning
terryw: [b]cool stan is that one of those pull behind machines
carofer: that's the risk, dant99
Stan: Yep, the Cyclone Rake. Works real well.
poohsdaddy: I get fatigued quickly too, but just try to stay active.
Bruce: When I become fatiqued is when I become dangerous. I never know when my legs will just give out.
Bruce: When I was a little younger, I did not know enought (dumb) to just say NO and find a place to sit down.
Marsi: that's what worries me about my husband he can't tell me when he can't go further and down he goes
poohsdaddy: I don't rake the leaves. We have a mulching lawn mower that chops them all up.
Bruce: Marsi, do you mean he won't tell you or can't for some other reason?
elvspretzl: My condition has excelled somewhat in the past year. Stairs were possible several years ago, now I can't do w/o a railing.
Marsi: usually won't tell me
Stan: I can avoid the legs giving out by taking frequent rest breaks. About 15 minutes at a time. It takes longer to get things done, but I have time.
Bruce: Got it! Our male ego just does not want to admit defeat.
TedA: I remember the old saying about walking and chewing gum at the same time! I can only do one at a time as I have to consitrate on walking
Bruce: Our ego makes us dangerous.
carofer: trying to keep up with faster walkers is a big mistake i make
Marsi: I think thats half our battle right now
elvspretzl: That's for sure, Bruce.
Bruce: Most of my injuries came as the result of pushing myself too hard or far.
Stan: Marsi, the wife and I went grocery shopping the other day. Cart was heavy. I had to tell the wife I needed to stop for a while. I think Bruce is right. Need to get over the ego.
TedA: We ALL know and accept our limits!!
Bruce: I like to think I am a little smarter today and a little more vocal about my capabilities. That does not mean that I still do not find myself in positions or situations that I should not be in.
poohsdaddy: I've learned to say no when I don't feel up to doing things. I 've even been able to stop and ask for directions when we get lost. LOL
Marsi: I have talked him into a scooter for work which is where he falls the most but then we don't have it for other things
terryw: [b]In the grocery stor when I go shopping I stop every few isles and sit on the end of the isle I clear a spot. People look at me andwonder what I am doing
terryw: [b] he store workers know whats up
dant99: I t took a couple falls and a few stitches in my head begore I learned not to push myself to far
Bruce: Marsi, have patience with your husband. He is hampered with a genetic disorder ... male pride!
Stan: Hey! I resemble that remark!
elvspretzl: I had to swallow a lot of pride when I first went to the supermarket and felt I needed to utilize the electric cart.
dant99: Terry, why noy use a motorized cart, once I got over my ego it made shopping a lot less of an adventure
Bruce: Have any of you been visiting the KDA forum recently. There are some great topics and the number of daily page reads amazes me.
Marsi: I do it just scares me because I don't know how much he can do and I worry for him
terryw: [b]Dan I would have it filled by the endof the forst isle
Stan: I like having my wife push me in the Kiddy Cart.
Bruce: Caregivers are so loving. We are blessed to have such wonderful support.
elvspretzl: lol, stan
Bruce: Stan lol
dant99: I usually take my niece or sister with me and they puch the reg cart whilst I ride
elvspretzl: I like the race car kids cart ... just need someone to push me around in it.
Stan: I'm kidding, but it would be funny as h...
terryw: [b]they say that they can have someeone assist me but I try to do it myself, I have someone help with the dog food & cat litter
terryw: [b]those are killers
terryw: [b]the cart actually works as a walker for me
Bruce: Marsi, has your husband accepted the fact that he has KD or is he still fighting it?
Bruce: Morning Billeric
Stan: That's why I push the cart too, Terry.
elvspretzl: Bruce, is the KDA forum accessed by a link on the KDA homepage? I don't think I've been there yet.
TedA: I'm thinking about adding a Little Red Wagen behind my scooter for shopping trips.
Ron: Have any of you guys talked to Murf or John Coakley lately?
Marsi: he is getting better at it, he is finally telling people what he has when they ask what is wrong with his walk
elvspretzl: Terry, that pretty much how I use the cart now too.
poohsdaddy: When we go shopping, we know which stores have the best wheelchairs and accessibility. My wife just loves to push me around.... Or, I use the wheelchair and she uses the shopping carts.
Bruce: It is under Discussion/Support on the left side
elvspretzl: Even when just buying milk.
elvspretzl: I use a cart.
UTE: Hi Bill, are back in the warm Southwest...
Bruce: Ron, yes to both.
Bruce: Marsi, that is a great first step.
Stan: That's good Marsi. When I was still in denial, I used to tell people I had German Shepherd Hip Displacia.
Bruce: This thing we call pride can do so much damage to us.
Marsi: my husband has trouble getting out of wheelchairs and other low sitting chairs so he won't use them when we go places
terryw: [b]stan :D
terryw: [b]:p :p :p
Ron: How about you Bruce. Are you doing OK?
billeric: Hi Ute, Have been for some time. Judy had a small stroke so that ended our summer early.
terryw: [b]Ron, I see Murf on facebook all the time
Stan: Poohsdaddy, I think all our wives like to push us around :)
UTE: Hope Judy is getting better
Bruce: Ron, I am doing great ... except that the temperatures are bothering me a little already.
Ron: I hear that.
TedA: Marsi try assisting him up from a low chair by grabbing his belt in the back and giving him that additional help he needs, lift straight up.
elvspretzl: Just remembered another question I have: Have any of you been unable to identify an ancestor or relative with KD? I have not found one other relative or ancestor with it. Just curious.
elvspretzl: Or KD symptoms.
Bruce: Marsi, in the early stages there are things like pillows and uplift seats that can really make a difference.
poohsdaddy: We had hail, cold and our first snow this past week.
dant99: Marsi, I have the same prob w/low chairs, When we go out to church or resteraunts we carry a folding counter height directors chair for me, makes it a lot easier and less fatiqueing
Marsi: I do that now but he gets embarrassed
Ron: KD only discovered in 1968 so mayn who might have had KD didn't know what it was.
Bruce: Elvs ... I have two uncles that they said had MD and another polio. Since this was the early-to-mid 1900s, that was all that was checked.
carofer: elvspretzl my son is doing a lot of genealogy research, but no one with this type of problem has come up
Marsi: where did you find a folding directors chair
billeric: I use my four wheel walker for my chair most of the time. Even restaurants etc.
Bruce: My too uncles lived on farms and I cannot imagine what life must have been like for them as the disease progressed. Stairs, SD winters, dirt or gravel paths, etc.
Stan: Elvspretzl, we can't find any ancestor with KD. It all seems to have started with my brothers and I - my Mom was the carrier.
TedA: Sometimes I sit on my walker seat because it is higher the the chairs
Bruce: Marsi, I found the folding director's chair at Pier One. It is great because of the height.
carofer: i could not get out of a movie theatre seat without the belt-lift assistance from my son last week
dant99: I bought them online a couple years ago, can't remember what company but it cost about $32
Marsi: I look there if we still have a Pier One tks
Bruce: The beauty of the director's chair is that it folds up and is easy to carry.
carofer: i need a cushion or something to raise the seat level
Bruce: I went from one cushion to two several years ago.
elvspretzl: I speculate that it's a gene that always exsisted and that something in today's environment may have launched active symptoms. ONLY speculation, though.
Bruce: Now I have a wheelchair with the elevated seat capability. I love it!
poohsdaddy: We bought a wooden ""bar"" stool to use from Target, but they available at Wal-Mart too for a little less $. (about $20)
UTE: Carofer...belt-lift assistance? Is that just a white belt? My wife has to lift me from under both arm pits
Stan: My favorite is my old aluminum lawn chair. It's the right height for me and arm rests for support getting up or down. I just re-weave it every few years.
Bruce: Ron, there are belt lifts available from most medical supply stores and on the internet. They have loops for the hands and fit right under your arms.
carofer: ute, teda explained: ----- Original Message ----- From: Roland Clifford To: 76 Bill Sherar ; Adell Clifford Sent: Saturday, October 30, 2010 9:39 AM Subject: Fwd: (no subject) Subject: (no subject) Interesting that the USA had so much to do with saving the miners Didn't hear this one on the news While the White House may not believe in American exceptionalism, I do. And I'm thinking there's a whole bunch of people in Chile that would agree. Regarding the mine rescue, did you know: The guy that designed the rescue module was a NASA Engineer? The Drill was made by Schramm Inc. from Pennsylvania? The Drill Bits were made by Center Rock, Inc. located in Berlin, Pennsylvania? The lead driller Jeff Hart and his team are from Denver, Colorado. They are on loan from the US Military in Afghanistan where they are drilling water wells for our Forward Operating Bases? He spent the next 33 days on his feet, operating the drill that finally provided a way out Saturday for 33 trapped miners. ""You have to feel through your feet what the drill is doing; it's a vibration you get so that you know what's happening,"" explained Hart. Hart was called in from Afghanistan, ""simply because he's the best"" at drilling larger holes with the T130's wide-diameter drill bits, Stefanic said. Standing before the levers, pressure meters and gauges on the T130's control panel, Hart and the rest of the team faced many challenges in drilling the shaft. At one point, the drill struck a metal support beam in the poorly mapped mine, shattering its hammers. Fresh equipment had to be flown in from the United States and progress was delayed for days as powerful magnets were lowered to pull out the pieces. The mine's veins of gold and copper ran through quartzite with a high level of abrasive silica, rock so tough that it took all their expertise to keep the drill's hammers from curving off in unwanted directions. ""It was horrible,"" said Center Rock President Brandon Fisher, exhausted after hardly sleeping during the effort.
Bruce: If you do not have one, you can use a regular belt in a pinch.
carofer: oops bad paste
billeric: Ute, lifting me under my arms doesn't work. I need to be lifted by the belt too.
TedA: Transfer Belts go around the waist or just use the belt that holds up the pants.
Bruce: Through the years, it has become almost automatic for my wife to grab my belt and give me a slight boost.
Marsi: we,ve bought high chairs for outside but not inside yet, he has a lift chair in our living room
Bruce: We use to call it a WEDGY!
Marsi: we do alot of wedgys
Bruce: The key as someone mentioned early is to lift gently straight up ... not forward. The weight has to get under the knees and feet.
Bruce: Also, wait for your husband to say he is okay before letting go ... otherwise he might not have his knees locked and he might go back down.
Gary_KC: Bruce, that is a good point.
Bruce: Gary, just plenty of experience talking here.
UTE: My wife has been super woman so far ... but it has to be hard on her body when she lifts me out of the bath or a low chair
billeric: I started using a fabric knee brace. Has stays on the side. I feel more secure using it. Has anyone else tried one?
elvspretzl: Fabric knee brace? Any particular brand you recommend?
Bruce: Billeric, yes I used one earlier in life.
TedA: I always carry a Transfer Belt with me. Never know when I'll have to ask a stranger for assitance.
elvspretzl: And a location to buy them?
billeric: I got this one at WalMart.
poohsdaddy: Thanks for sharing everyone.... Time for me to get going. Hope to see all here again next time.
Bruce: Take care
Bruce: Thanks for joining us again Poohsdaddy
Stan: See you.
Bruce: Ron, you never said how you were doing these days. How is life, guy?
Ron: Well I guess I will go also. Hope everyone stays healthy till next we chat. Bruce I am experienceing definite progression of the Kennedy's.
Bruce: I bought CHOPPERS a couple of years ago for my trips out in the golf cart with my dog. They have been such a blessing. I can insert a hot hands packet inside and my hands stay pretty warm.
Bruce: Yes, Ron, that is frustrating. Let me know if you just want to talk.
Ron: Thanks. I really miss you guys on the board.
UTE: Got to go...catch you next time...stay upright
Marsi: what are choppers?
Bruce: Of course I look funny to some people when I am wearing choppers and it is 40 degrees outside.
billeric: By Ute
Bruce: Choppers are like mittens, but they are leather with wool mitten inserts. We used them all the time as kids in Minnesota.
Bruce: Morning SSJC
billeric: In the summer!!!!!!
Bruce: Marsi, I found that regular gloves just did not warm my hands enough and the HOT HANDS packets did not fit well inside and warm the fingers. Choppers allow both.
Bruce: I am still looking for electric socks and gloves that I can try on first just to see how they work.
Bruce: Welcome back TedA
dant99: I have to go now, thanks all for a good chat session, take care/
Marsi: gotta go tks for the info guys very informative
Stan: Try a motorcycle dealer Bruce.
Bruce: We are supposed to be 29 degrees tomorrow morning.
Bruce: Take care Marsi. Join us again soon.
Gary_KC: Burce, is it codeless for the electric socks?
TedA: IP loged me off and I wanted to say Bye.
Bruce: Stan, I had not thought of that. Thanks
Bruce: Gary_KC what do you mean?
ssjc: (Stewart)Goodmorning sorry I""m later over slept.
Stan: Bruce, I've seen them where they plug in to the Cigar lighter/power point, or are battery powered.
Gary_KC: Bruce, do you have a product of the electric socks? It is interesting for me.
Bruce: Stewart, you missed the crowd. We had a lively group this morning.
Stan: If you want to see what they look like and get specs, go to denniskirk.com.
Bruce: No, Gary, I just heard about them and saw them advertised on the Internet. I am still investigating, but Stan's idea sounds like a winner.
elvspretzl: I just purchased a pair of electric socks ... not cheap.
Bruce: How expensive?
Gary_KC: Bruce, thanks. My legs and hands are always feeling cold in winter.
Bruce: Gary, i use an electric blanket at night and it takes a couple of hours for my feet and lower legs to finally feel comfortable.
elvspretzl: $150 - 200, but, there are cheaper ones that operate on regular batteries.
Bruce: WOW, I had no idea that expensive.
Bruce: Well, guys, this has been fun. Thanks for joining me today and for your thoughts.
ssjc: See you next Tuesday evening I'm planning to attending the dinner.
elvspretzl: As I said, you can find cheaper ones, but I don't have experience as to how effective they are.
carofer: see you. thanks for all the chatter
Bruce: I need to grab a bite to eat before the football game come on. Take care and stay upright.
Gary_KC: Bruce, I also use the electric blanket, otherwise, I can't sleep ether.
elvspretzl: Have a good day everyone1
Stan: No problem. Take care everyone. ""Remember, I'm pullin' for ya, we're all in this together."" Red Green
Gary_KC: I got go. Have a great conference.