Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Surfing the internet I found the KDA and for me it was like an island for a castaway. Thanks to them, I have a lighthouse to help find my way."

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Kennedy's Disease Chat Transcript  01-16-2010

Topic:  Open Forum

Host: Bruce Gaughran



Bruce: Morning Rich, I was getting a little lonely.
Rich Smith: me too. this is my first time in chat.
Rich Smith: mow are you today
Bruce: Are you guys warming up any? We went thru two weeks of hell down here, but yesterday we were 60 degrees.
Bruce: Normally we have several regulars on about now. I am not certain what is going on.
Rich Smith: it's warming up a little but i can't wait til spring
Bruce: I like Bethlehem. I had some customers in the area when I lived in York and then we traveled there several times when we were living in the Exton/Downingtown area.
Bruce: It was so cold here that I had to curtail my walks with my dog (he walks and I ride a cart). Instead of four to five times a day, we were only going out twice in the afternoons.
Bruce: More Gary and Rick
Bruce: Rich and I were feeling a little lonely. THis is a first time for Rich from PA.
Bruce: Morning ... that is
gary_kc: Good morning. This is Gary joining in from KC. It is 30 degrees and cloudy this morning.
gary_kc: Hi Bruce.
Bruce: Gary, we are having a heatwave in GA. It was 60 yesterday. What is your weather like?
Bruce: UTE, have you guys warmed up any out there?
Rich Smith: that's a good area. I go to the MDA clinic in Allentown several time a week for clinics and treatment.
Rich Smith: hi gary
Bruce: For those that have been following my blog? I made a decision on my chair yesterday.
Bruce: Morning Billeric
Bruce: Sorry Gary, I did not read your weather forecase before responding
UTE: Just a little below freezing here...and due to high pressure we have inversion where the clouds and polution are in the valley insteAD of in the sky
gary_kc: It was up to 40 degrees and fine weather yesterday. It usually feels cold temparature but I felt warm. :-)
Rich Smith: Morning Gary and Billeric.
Bruce: UTE, I saw that in the paper this morning. It looked like LA Smog
Rich Smith: Morning UTE.
UTE: Bill.. I guess Phoenix gets pollution in the valley this time of year too?
Bruce: We are planning on publishing our first six months schedule for the chat room soon. We have three researchers scheduled so far with possibly two more and two interesting topics.
billeric: So far not too bad. Some years it is a lot worse.
UTE: Welcome Rich
Rich Smith: Bruce-sounds good to me.
billeric: Are you still working Ute?
Bruce: My brother in Phoenix has been rubbing in the cool weather they have been experiencing ... 60's at night.
billeric: We may get lots of needed rain this week. 1 to 3 inches.
UTE: Still working...but can't get the powerchair in the car manually get there by bus and train
Rich Smith: Is anyone doing Vitalstim treatments? It's great!
Bruce: I am now looking for an uplift assist for my commode. It is becoming harder to get up these days ... especially in the winter. Anyone know of something that works well?
Bruce: Rich, what is Vitalstim?
UTE: Bruce, I use a gismo thats several inches of plastic and a couple arms to push up on
Bruce: UTE, I might be beyond that point soon. I need something that will lift me up enough to easily get my feet under me and locked.
billeric: I use a 4 and one half inch riser on my commode. Next step will probably be the higher commode.
UTE: Testing...testing
Bruce: Billeric, I use a four inch riser today. It still works, but I am looking out for the future.
Rich Smith: They stimulate the swollowing process (train your oral muscules). They put the electrodes on your neck.
UTE: Like Bill I use a few inches of plastic with a couple of arms to push up on
Rich Smith: Each session is 45 min. long.
Bruce: Were you having trouble swallowing?
UTE: Besides the WC lift chair (like a lazy boy) I can hardly live without in getting up
Bruce: I use the swallowing exercises that I put into my exercise guide and they have really helped me. Anything to keep the muscles stimulated is important.
Bruce: UTE, my lift chair is nice also. It makes it much safer for me and more comfortable.
Bruce: The wheelchair I am ordering has an eight inch seat lift. That will be real nice to have.
UTE: Just wish there was like a car jack for getting me up off the floor when I'm down
billeric: What brand are you getting Bruce?
Rich Smith: Yes, big time. I'm concerned that it doesn't get into my lungs & cause pneumonia.Had several occasion when the food got hung up half way down.
Bruce: On a different subject, but one that concerns me. Why do you think our chat room participation has slowed from averaging ten or mroe a session to four or five?
Bruce: Billeric, I am going with the Permobil 300. It has the power seat, power tilt, power recline (just like a Lazyboy), and a memory cushion.
Bruce: I was looking at the C500, but it was too much $$$$. The C300 is almost identical and has all the same features ... just a little smaller footprint.
Bruce: I have a Jazzy 1121 right now, but it is being held together with bailing wire and chewing gum.
UTE: Perhaps some of the participation has to do with people getting busy with family or everyday projects that take longer and longer to complete???
billeric: I wonder if we aren't running out of things to chat about. We could consider once a month, at least for awhile. I like the chats but I agree we are losing interest.
Bruce: Rich Smith, I understand. You have to be extra careful when swallowing. I use the phrase that we can't talk and chew gum at the same time. We have to focus on our chewing.
gary_kc: Bruce, that is a good question. Why only a few people are attending the chat? May be COLD weather...?
Bruce: It might be time to conduct a survey and see what people think about the chat room and possible improvements.
UTE: I went from a Jazzy 1120?? to a Quantum 5000.... the 8 inch lift has helped me keep working and gotten me out of a few jams as far as boosting me up
Rich Smith: Bruce, maybe they figure it's a waist of time because ther'es nothing that could be done for them.that's right. I have to focus on every swallow.
Bruce: The chat room participation is a subject we will be discussing at our BOD meeting this coming week. Any thoughts (like those mentioned above) are appreciated.
billeric: A survey may be a good idea Bruce. May be some good ideas out there.
Bruce: We are trying to come up with some focused topics that might be of interest also.
Rich Smith: Sounds good to me!
UTE: Rich...I get esphogil (sp?) spasms too... but it can be caused by just about anything...including dryness..moisture...etc
Bruce: If you guys have a chance, read my article from yesterday's blog. It is important that we get rid of the two year wait for Medicare and the caps on health insurance.
Bruce: Blog address is:
gary_kc: Bruce, I bought an Invacare Pronto M61 with SureStep in December 30. It is able to lift seat up to 5 inches.
Bruce: For some reason, I did not have the two year wait. When I received SS-D benefits, I was immediately signed up for Medicare. Many others have not been so fortunate.
Bruce: That lift seat is something I need. I currently have a three inch pad on top of my seat to help me stand up or transfer.
Bruce: I was also impressed with the Memory Cushion (4"") that goes in instead of the seat. It was really nice and made me sit up straighter and be more comfortable (I tested a demo chair with the cushion at Emory Hospital).
Rich Smith: Some how I got mine 6 months early. I think my Dr. told them it was like ALS. They get theirs in a few months. I use a portable commode that works out great
Bruce: By the way, if and when you are ever in the market for a chair again, check into getting a seating specialist to evaluate your needs. These people are pros and can really help you find the best chair and accessories.
Bruce: Gary, what does the SureStep option do?
Bruce: Beng able to test several chairs at Emory was very helpful. They probably had 30+ different chairs sitting there. It was quite the experience.
Bruce: Billeric, how close are you to Apache Junction?
billeric: About 60 miles Bruce
Bruce: My brother, who has KD also, just moved into a retirement high rise and really likes it (especially the restaurent).
gary_kc: Burce, the Pronto M61 power wheelchair boasts a standard power elevating seat that provides zero to five inches of elevation with six wheels on the ground for optimum stability. In the elevated position the M61 provides smooth driving and accessibility.
Bruce: I gather it is a mid-wheel drive chair?
Bruce: I was talked into a front wheel drive chair this time for better handling and control outside (grass, rock, etc.).
billeric: Bruce, Does your brother go to the MDA clinic at St Josephs hospital?
UTE: Bruce, is your brother's highrise in Apache Junction?
Bruce: Billeric, I am not certain which MDA clinic he goes to, but he does go to one as well as the V.A.
Bruce: UTE, yes. It is just a few miles from his house (that he just sold). He is always bragging about the food (the meals).
Bruce: Rich Smith, are you an Eagles fan? If so, what happened this December to them? They seemed to implode.
Rich Smith: I think awarness of the disease is something we should work on. ALOT of doctors never heard of it. I take a brochure with me to the doctors office and leave it with him.
UTE: My mother-in-law use to go to Apache I'vegone there several times over the years. My daughter and son-in-law and grandkids live in Gilbert... just up the road
Bruce: By the way, in preparation for buying a chair, I have been doing some research on Group 2 and 3 chairs and the Medicare allowance. It was quite educational.
Bruce: I like the Gilbert area.
Rich Smith: Sorry, Cowboys fan (somewhat).
Bruce: Then you must have been very happy. The Cowboys have been hot.
Bruce: I think they play the Viking on Sunday.
Bruce: Morning Mike
MikeG: hi Bruce
MikeG: sorry I'm so late - lots of things going on here
Bruce: Mike, we were just discussing the poor turnout recently for our chats. I plan on bringing it up at the board meeting.
Bruce: Mike, have you thawed out yet?
MikeG: yes - nice down here... back to normal 74
MikeG: but that 23 ruined everything!
Bruce: For everyone else, Mike is one of these spoiled Florida dwellers who believes that they should never have temps below
MikeG: :D
Bruce: I have been reading about all the crop damage down there. WOW
MikeG: yep - it's pretty bad
Rich Smith: Yes, but what goes up will come down. Their performance did shock me !
Bruce: The Cards and Saints play this afternoon. I am going with the Cards. The best game today could be the Colts and Ravens. The Ravens are another hot team right now.
Bruce: I love college ball and only follow the pros when the playoffs begin.
Bruce: The NCAA Tournament is a favorite time of year for me.
Bruce: UTE, you are a Mich State fan, right? Or is it Michigan?
UTE: NCAA...go Spartans and Orange men
Bruce: I thought so!
Bruce: You lived in Lansing, right?
UTE: Born in Ann Arbor..high school in Syracuse and college at MSU
Bruce: Rich Smith, how did you end up a Cowboys fan?
Bruce: Mike, I plan on putting out an email with the chat room schedule and guests/topics this coming week hoping to gain some interest in our upcoming chats.
MikeG: ok, I'll see if I can get a guest to commit
Bruce: Boy, this thing going on in Haiti right now is amazing. It always shows us how much worse things can actually be.
MikeG: yep - they sure have aq disaster there!
Bruce: Parsa, Lenore and Maria have already committed. I believe they will be good guests since they are discussing the most up-to-date research in their areas of interest.
billeric: It really is ugly. A broken country to begin with gets smacked with this.
UTE: Yes Bruce...and it shows how giving a nation we are
Bruce: Yup, people have really came out in support.
MikeG: I know someone who was scheduled to go there tomorrow for some mission work - he cancelled... or was cancelled.
billeric: Wouldn't it be great if we only could help with stuff like this instead of Afganistan etc.
Bruce: Yes, right now I do not know if you want to go there. Planes are backed up and people cannot get in or out.
MikeG: that's right!
Bruce: Haiti has always been on the edge of poverty and their political climate for years was not good for the country or the people.
MikeG: he had this trip planned for several months... good thing it wasn't a week earlier!
Rich Smith: Well, I don't know. Maybe it's the come around from disaster attitude.
Bruce: My wife asked why Haiti has never been a tourest stop like som many other islands down there. I tried to explain, but there is a long history following that country.
MikeG: remember the mud slides?
MikeG: they just can't get a break
MikeG: and then their military... :(
billeric: Got to go guys. Nice chatting with you. Stay upright.
Bruce: I still remember when I was living in L.A. I was heading north on I-5 going to San Francisco. We were all stopped outside of Bakersfield because of a mud slide. The entire side of a mountain slid acorss the interestate ... grass, rock and all. It was amazing to see.
MikeG: yep - I need to go to the PO before 12. Playing shipping clerk today.
Bruce: Take care Mike
MikeG: ok, ttyl
Rich Smith: Take care Mike!
Bruce: Well, Rich Smith, thanks for joining us today. And it is always good talking with you Gary and Ute.
UTE: Great meeting and meeting Rich
Bruce: Rich, I am pulling for the Vikings on Sunday. Bret, the 40 year old superman, is something to watch.
gary_kc: Bruce, thank you very much for setting up chat every time.
Rich Smith: Same here. Take care all. Keep the clean side up
Bruce: My pleasure. We'll see if we can make it more interesting this year. Take care everyone and stay upright.
Rich Smith: Sighning off now.
UTE: So long Rich and Gary
gary_kc: Bruce, I will send you an email if I find any good or interesting topic in chat.
gary_kc: Bye UTE.
gary_kc: I got go too. Bye