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  04-17-2010

Topic:  Aids for Living

Host: Murray Williams


terryw: hi
Bruce: Morning Terry. How are you feeling these days?
terryw: [b]I am still recoveing but almost better, Susanne is really sick. Going to take her to urgent care at 9am
Bruce: IS is the flu or something else?
terryw: [b]been a bad year so far
terryw: [b]flu
Bruce: Bummer!
terryw: [b]I hope I don't get it
Bruce: YES!
Bruce: We are having extreme pollen levels this spring. It seems half the population is having problems with it. Everything is yellow and we need rain.
terryw: [b]Here also
terryw: [b]
terryw: [b]lots of rain this year
terryw: [b]been trying to keep things going around herre
terryw: [b]finally getting some energy back
Bruce: We are finally going to cool down a little this week. Temperatures have been in the 80s and low 90s ... we went from winter to summer. This week we are supposed to be in the low 70s again with nights in the high 40s and 50s. It will be nice to get a break.
terryw: [b]wow
Bruce: Are your lungs doing okay now?
terryw: [b]still have gunk in them, seems to want to cause problems only at night
terryw: [b]I use the assisted cough machine
terryw: [b]helps a lot
Bruce: Did you get that suction device to help clear out the phlegm?
Bruce: Okay, that answered it
terryw: [b]yes but have not had to use it yet
terryw: [b]I finally got the last 2 chats posted
terryw: [b]been behind
Bruce: I might have to leave early when our cats wake up and want to eat. I will try to come back.
terryw: [b]ok,
terryw: [b]how's yoour health been
Bruce: It is a beautiful morning and I have enjoyed my two walks with Fred (our beagle).
Bruce: Great, thanks for asking.
terryw: [b]cindy?
Bruce: She is over-doing in the gardens and front lawn. She hurt her back carrying bags of mulch and hurt her calf carrying the bags up the hill to the house.
terryw: [b]Hi Stan
Bruce: Morning Stan
Stan: Hi.
terryw: [b]It is so easy to over do it in the yard
Bruce: She is a trooper and does not let it slow her down much. She loves to work in the yard and woods ... except when the gnats are so bad.
terryw: [b]we are no spring chickens anymore
Bruce: I do not tell her that! I value my life.
Bruce: Stan, what is going on up your way?
terryw: [b]LOL
Stan: Just working in the yard. Nephew is on his way over to get my chipper.
Stan: A little cold and windy today, but sunny.
Bruce: Terry, I love my new chair (Permobil C300). It is a piece of technology that is well designed.
Bruce: Stan, are you in Ohio?
Stan: Michigan
Bruce: Okay, I thought it was up there, but wasn't certain.
Bruce: A Spartan or UofM fan?
Stan: If Jennifer has her way, it'll probably be come part of Canada. Then she can run for office again.
Bruce: Succession is not in the cards ...
Stan: Doesn't matter, Spartan or Uof M, It's all Michigan. But I lean more toward Uof M since I went there and so did two of my brothers.
terryw: [b]Hi Paul
Bruce: What do you think of Rodriquez (?) as coach?
Bruce: Morning Paul
Paul Sramek: HI,
Bruce: Paul, where are you located?
Stan: Don't pay much attention to sports. Hi, Paul
Paul Sramek: Good Morning to all
Bruce: I love college football and basketball ... especially the NCAA tournament. Great fun!
Stan: Only sport I was involved in was Track in high school. More involved with Drag Racing. Too many other things I want to do.
terryw: [b]Hi Lou
Bruce: Morning Lou
Stan: Hi Lou
loutudor: Good morning!
Bruce: On May 1 and 15 we have two guest researchers (both won KDA grants this year). It should be interesting.
Stan: Good, maybe they can tell what's wrong with me. : )
Paul Sramek: Hi, to all from Dallas
Bruce: On the first we have Lenore Beitel from Canada. On the fifteenth we have Parsa Kazemi-Esfarjani from the Univ of San Diego.
Bruce: Morning Poohsdaddy
Stan: Morning Jeff
loshimo11: Good morning everyone. This is Luis Shimomura joining in from a nice and warm San Francisco.
Bruce: Stan, when I was a kid I would go to the drag races at least twice a month during the summer. It was great fun. I was part of a car club and we built our own rail and also raced some cars.
Stan: Hey Luis
Bruce: Morning Luis
Bruce: Those were the days of the muscle cars. I am happy to see some of them coming back again. I just can't get in them (or out of them) any more.
terryw: [b]I will be back, have to go put horses out
Bruce: My wife has been test driving the new Carmero SS and also looking at the Challenger. She likes them, but still loves her Corvette.
Stan: I had two cars I ran back in the 1970's. 1957 Chev Wagon I ran in the Hot Rod class, and my 1970 Chevelle SS I ran in C/SSA. Still have the Chevelle. Was involved with two local clubs and the International Classis Chevy Club. Still a member
Bruce: My neighbor completely restored his Chevelle SS. It looks good and sounds nice.
Bruce: Luis, can you still get abilonie out there? Many years ago that was one of my favorites.
Stan: Have to get mine back on the road - Mobility Aid; Fast Mobility Aid. Hard to steer though with the front wheels off the ground.
Stan: How's that for a lead-in to today's topic?
Bruce: Has everyone been boting in the Pepsi Challenge? We just cannot seem to move about 90 for some reason.
loshimo11: I believe there are still abalone out there. However, for some reason they are extremely expensive and difficult to find.
Bruce: :} lol
Stan: Voting every day. Same with Carla and my kids.
Bruce: Morning Paul. How are you doing fella?
loutudor: Thanks Bruce...we sure need more votes!
Paul Sramek: Yes vote every day
PA-PAUL: Hello All I am always late anymore
Bruce: Luis, I loved to eat the stuff, but noticed on a few trips years ago that it was not always available and was market priced (ouch).
Bruce: Luis, there was a restaurant on the pier down at the warf that served it and it was a favorite stomping grounds for me along with the Sea Wolf.
Bruce: Stan, you mentioned your hobby. What does everyone else do for a hobby?
poohsdaddy: Good Morning everyone... I was here, but could only read... I was locked out of typing anything in for some reason... or my computer was just slow loading the chat room today.
loshimo11: Bruce... The last abalone I truly enjoyed was given to us (Free!!!) by a co-worker whose husband would actually get into the freezing bay waters to get them. That was good stuff!!!
Bruce: Glad to have you back, Poohsdaddy. Was your weather like MN this spring? No snow in March.
loutudor: My son loves photogrphy!
Bruce: So does Terry and Susanne. Susanne displays her work every year at festivals.
Bruce: My three favorite hobbies are bird watching, writing, and reading.
terryw: [b]I am back
Stan: Photography is my daughter's minor at Western MI. She's graduating in two weeks with a degree in Fine Arts.
poohsdaddy: I didn't pay much attention to the weather while in the nursing home, but it's been pretty good since they let me come home... A few rainy days with the warmer weather.
Bruce: Terry took a shot of some pelicans sitting on posts on the water. It was a great shot!
Stan: I hated being in the nursing home for a month last year. I almost went stir crazy not being able to get my hands dirty fixing or building something.
Bruce: Yes, I would not be a good candidate for nursing home duty. I am too active and need to stay involved.
terryw: [b]thanks, I still do photography, but I have not been as active
poohsdaddy: Yes, Kathy and I vote every day for the $$ in the Pepsi Refresh Project.... and have several of our families and friends who also vote daily.
loutudor: Thanks for voting!!!!
terryw: [b]We have been votingALSO
PA-PAUL: I do try to remember. Now i added a desktop icon to remember
Bruce: Today we are 95th. I just do not understand how we are losing ground with so many voting. Lou, is there any way to see the number of votes cast?
terryw: [b]I use my new Sony HD HANDICAM now to take photos
loutudor: Unfortunately, no....
terryw: [b]its lighter than our regular cameras
terryw: [b]takes amazing video
Bruce: Murray just bought a new Canon Rebel. He is pretty thrilled about it.
Bruce: Morning Gary
loshimo11: Hey Gary.
terryw: [b]yes, I reccommended some lenses for murray
Gary_KC: Good morning. This is Gary joining in from Kansas City. Sorry to late.
terryw: [b]hi gary
poohsdaddy: Are you guys still ""able bodied""... or ""restricted"" as far as mobility is concerned ? I've had to switch from my four-wheeled walker to a two-wheeled model since my broken leg.
loutudor: Hi Gary!
Gary_KC: Hi Bruce, Loshimol1 and Terry.
terryw: [b]can still walk short distances
Bruce: There is an interesing, but short and not very detailed, article on trying to reprogram genes including those not functioning in KD.
PA-PAUL: no i can not even stand but for a minute...
Stan: I'm still pretty much able-bodied. I use a cane for additional support. I still walk out to my mailbox everyday, about 500 feet.
terryw: [b]in the grocery store I still walk but use the cart as a walker. I have to find places to sit for a few minutes while I shop
Bruce: Poohsdaddy, when I broke my tibia and fibula at the same time a few years ago, i migrated to a wheelchair. I just could not afford any more falls like that.
poohsdaddy: Stan... I'm a bit jealous... and am doing PT to get back to that option.
loshimo11: Terry... I too use the shopping carts as a walker. However, they are very difficult to put back into the car.
terryw: [b]haha
Bruce: Morning Murray
terryw: [b]hi Murray
murf: Sorry I'm Late
Bruce: We have several photo bugs or family members who are photo bugs today.
murf: Fell asleep in the chair
poohsdaddy: How about today's topic ??
PA-PAUL: hi murry
Stan: I surprised everyone last year. When doing doing rehab and PT. They all thought I would be wheelchair bound and on Oxygen. I love proving people wrong.
terryw: [b]:)
Bruce: Good attitude, Stan
murf: poohsdaddy do you have a question?
loutudor: Must leave for an appt...sorry to go early...
Bruce: Take care Lou
murf: Buy Lou
terryw: [b]tc
Stan: Bye Lou
loshimo11: Take care Lou.
poohsdaddy: Thanks to all who have joined me as friends on Facebook. No real question... just wondering about the topic that was suggested.
Bruce: Poohsdaddy, PT really helps. It has made a huge difference in my life.
Paul Sramek: I use a Travelscoot it folds in my car & I can lift 45 lbs yet. Also air line approved.
terryw: [b]Had a scary experience the other day. A new KDer called me and while I was on the phone talking to him my airway closed.
terryw: [b]He thought I was dying
murf: I have spent the last yr or so installing and researching different aids can that assist us
Stan: My Pt ended a few months ago. I still do the exercises every day; the ones they gave me and some from the KDA site.
Bruce: Can you imagine back to your early 20s. Would you have ever thought we would be comparing mobility devices and capabilities today?
terryw: [b]I had to hang up the phone on him
terryw: [b]He called back and I explained
murf: Did he ever call back Terry?
terryw: [b]yes
Bruce: Yes, Terry, that would be scary for the other person. Helpless feeling.
poohsdaddy: I get quite a workout at PT once a week... and also have daily exercises to do at home.
Stan: Nope. I was still doing weight lifting, and was a heavy repair mechanic then, Bruce.
murf: Welcome to KD
murf: LOL
murf: Must have scared him
Bruce: Daily exercises are still my routine. I do leg exercises every day and arm and upper body exercises every other day.
terryw: [b]My vet was here for my horses giving shots to them and I was down at the stables, he noticed me when he came out of the stall not breathin and thought I was choking on food.
terryw: [b]I had to try to let him know I would be ok in a min but I could not talk
murf: Had a doctors appointment yesterday & my blood pressure was 153/118
terryw: [b]I used hand signals
Stan: The airway closing up is what put me in the hospital last year. I have COPD along with KD, and a pacemeker from a few years ago. I don't let any of that stop me. I have just had to adapt. Last sentence sounds familiar.
terryw: [b]murf that ia high like me
terryw: [b]is
murf: You high too?
Bruce: The hardest thing for me these days is using a toilet when away from the home. Even handicap stalls have the low seats. I bring a 4"" tallette with me everywhere I go just in case.
terryw: [b]lol
terryw: [b]180 over 121
terryw: [b]but with 2 meds it comes down to 130 over 101
murf: I got new prescription
Bruce: I am still fortunate. My blood pressure is fine and my cholestorial is great. Genes!
murf: I just had two coffees and stressed getting out of the car & into my chair
PA-PAUL: yes bruce that toilet thing is a real problem Hard to visit friends houses never know what to expect
murf: All makes it higher
terryw: [b]Bruce what bout a strap that you can hook to the powerchair and put the chair in very slow reverse to pull you up offthe seat
Stan: I still live on coffee, murf.
murf: PA-PAUL I just bought two new lift seats for the toilet
Bruce: Never thought of that, Terry. It sounds ingenius, but probably a little scary also.
murf: Lift you up like the lift chair
terryw: [b]yes but might woork if you bend armand hold strap with inner arm bent at ebbow
Bruce: So many newer homes today have the very low toilets. Even with the Tallette, they are still too low for me.
poohsdaddy: Kathy went out and bought a ""doughnut"" for my bathroom.... which raises the seat by 5 inchess... And who said size doesn't matter ? Lol
murf: My new hift seat works great guys
PA-PAUL: yes that does work
Bruce: Good One
terryw: [b]I have got to go and take Susanne tourgent care
murf: Stands u right up!
terryw: [b]Take care all
murf: CYA Terry
PA-PAUL: you to terry
Stan: Take care, Terry. Hope Susanne gets better soon.
Bruce: I bought a new lift seat also this year. It is great and has a battery backup system just in care we would lose power while on the thrown.
loshimo11: poohsdaddy... I keep telling my wife that doughnuts are good for me. 5 inches is pretty high... how secure is this thing?
Paul Sramek: I am out see all next time
murf: I have an extrra seat lift cost $1700 do u think it would be a good silent auction item?
Stan: Bye Paul
Bruce: Again, the problem is not at home. It is when we are out somewhere.
murf: I don't go anywhere any more
PA-PAUL: yes murf
PA-PAUL: i too dont go out much
murf: Not a hurmit but close
Bruce: I normally have to have the wife stand outside the door and listen for a yell in case I cannot get up.
PA-PAUL: thank GOD for wife's
poohsdaddy: That's the main reason that I've been unable to go places... even though they're supposed to be ""handicapped accessible"". Most of them aren't really ....
murf: Don't have that luxury
Bruce: I still find it interesting that these public restrooms have such a low toilet seat height and the low bars. They are of no value for someone like me.
Bruce: Yes, I am certain when she said ""I do"" she did not mean hauling me off a toilet in the middle of a Walmart.
murf: All our excursion trying to get up sends our blood pressure high
loshimo11: Bruce... It's funny how although we don't know each other well, we've all come up with very similar solutions (the wife outside the bathroom door).
Bruce: :}
Stan: Someone mentioned in one of the other chats that they need hand-holds for when they travel. The suction cup ones at the store are pretty expensive. I found very similar ones in an automotive catalog and a lot cheaper. $7 and it is capable of holding 80 lbs. But it only comes in Orange. I use them outside, or wherever I need one at the moment.
Bruce: I am fortunate to have great bladder control. My wife's parents live in a tri-level home with bathrooms on the first and third floors, but you enter on the second level.
PA-PAUL: i would not visit them
Bruce: I use my scution cup hand holds in the shower every day. I take them on trips also. What a great invention.
murf: PA-PAUL me either
poohsdaddy: Bruce, Ditto ! That's exactly why she bought the doughnut for my bathroom. We're also looking at hand rails that fit over the seat so I'll be able to push myself up form the seated position. The handles on the wall aren't always enough to pull up from the seat.
Bruce: Paul, I stop on the way into town and on the way out of town at a McDonalds. But, watching what you eat and drink for a full day is not fun.
PA-PAUL: yes poohsdaddy i have a seat that has handles and sits over the toilet its great but getting a litrtle narrow for my size
murf: Can not do a full day of fun, I need to plan my time out to two -three hours max
Bruce: As I mentioned in my blog, I have turned over a new leaf this year. Everything I now buy to help is first evaluated for my current needs as well as my needs in the next three to five years. It has made a difference in my recent purchases. I used to just buy the bare necessity item to get by.
PA-PAUL: I guess that is why ""depression ""is so easy to understand with KD
Bruce: YUP
murf: I've been buying things I think I'll need in the next 5 yrs too Bruce
Bruce: One thing nice about this change in thinking, it gives me more time to evaluate my needs now and in the future, as well as time to shop around for the best deal that will fit those future needs.
poohsdaddy: I've seen the suction cup handles in a couple of the mail-order catalogs. They used to have them at places like Walgreen's and Home Depot, but not lately. (under $20)
Bruce: Terry turned me on to a jar opener a couple of years ago that I use several times a week. My wife use to come to me to open up jars and now I go to her ... or, use the opener that works very well.
PA-PAUL: yes try DR LENARDs catalog
loshimo11: Bruce... your recent blog has me thinking about the same thing. In the past, it's always been about the needs for today. I have to learn to look at the whole picture and plan from there. Unfortunately, I'm in that transition mode still.
PA-PAUL: has and on line shopping
PA-PAUL: where is your blog at bruce??
Bruce: I found that talking to PT and others that have KD (more progressed) that is helps me evaluate what I will need and what is available out there.
Stan: I use strap wrenches to open jars, so does the wife. A lot of my aids are adaptations of automotive tools because of my career.
Bruce: Living with Kennedy's Disease -
poohsdaddy: One cataalog was from Harriet Carter, and I think the others were Lillian Vernon and Miles Kimball.
PA-PAUL: thanks
Stan: Harbour Freight
Bruce: The walker is still a great aid for short trips.
Bruce: But, now that I have my new Permobil C300, I find it so comfortable and convenient that it is my primary means of transportation.
Stan: Walker is too slow. I haven't found a way to soup it up yet.
PA-PAUL: my walker is heavy duty and does not roll through doors without folding
loshimo11: I lost my cane during one of our outings last weekend. I can't understand how the heck I was able to do that!!!
Bruce: A Hemi might help Stan
PA-PAUL: I take about 10m steps and have to sit down on it
murf: firstSTREET Online ...
Bruce: That is a wonder Luis
Stan: Bruce, have you put Nitrous on it yet? No Hemis. Has to be Chevy or Ford.
poohsdaddy: Maybe ""Tim the toolman Taylor"" from Home Improvement could soup it up for you. That was a funny show and has gone to permanent re-runs.
Bruce: I miss the old 327 and 427 engines. They sound nice and perform great. Cindy's Corvette was so much fun to drive, but today I just have to watch her drive away in it. Bummer!
Stan: Luis, I lost one of my canes because I left it hanging on the shopping cart.
Bruce: More Power!
Bruce: I have a neighbor that is like Tim Taylor. He has to sup-up everything including his water pump for his outdoor pond.
Stan: Sounds like me.
loshimo11: Stan... That is what must have happened. It's just that whenever I'm out, I alway relied on my old trusty cane.
PA-PAUL: niagra falls
poohsdaddy: I also had left my cane on a shopping cart a while ago, but the greeter at Wally World knew exactly who to give to and saved it for me til we came back for it.
Bruce: Well, guys. I have enjoyed it, but I need to go feed my cats and take my beagle for a walk. Take care and stay upright! Until the 1st and the 15th ...
PA-PAUL: later bruce
murf: CYA Bruce
Stan: Ok, take care, Bruce
poohsdaddy: Thanks to all.... Time for me to get going also. Bye for now.
PA-PAUL: Yes I too am gone, staying upright is a good idea
murf: poohsdaddy Take care
loshimo11: Take good care of yourself Bruce. We'll chat again in a few weeks.
murf: Cya Paul
loshimo11: Take care everyone. Please stay healthy and upright.
murf: OK you too!
Stan: Bye. Now it's time to say goodbye, to all our family. MIC, KEY. opps, wrong show. Chat at you all next time.
Gary_KC: Bye all until next chat.
murf: Cya Stan
murf: ok ary