Kennedy's Disease Association

"Our Focus Remains on Research, Education and Support"

Kennedy's Disease Chat Transcript  04-16-2005

Topic:  Mobility, Safety

Host: Bruce Gaughran

Chat Participants:

Bruce
LouLou
kelly
denny
Terryw
murf
MICH
MikeG
Gary-KS

BEGIN CHAT

Bruce: I was thinking about topics and one that came to mind is: Mobility Safety - How do you safely get around these days? I know it is kind of lame, but what do you think?

murf: Sure sounds good

Bruce: Yes, I am using a cane inside the house these days. I can't afford another fall like this last one.

LouLou: Mobility safety is always on the minds of all of us with KD. We tend to be more careful when trying to do our chores.

murf: Bruce - I was getting new chair batteries yesterday and my supplier told me that SAM's club has walkers for under $100

murf: I'm thinking about getting one for the cruise

Bruce: I was talking to my 70 year old brother who also has KD. We were comparing falls. We laughed about how we learn from our mistakes ... most of the time anyway.

LouLou: What type of walkers?

murf: I haven't seen them yet but I'm going to look later today

murf: I think they have 4 wheels and a seat

LouLou: Our Lions club has walkers to loan at no cost to the individual.

Bruce: I have a walker. I bought it when the doc said I could start exercising again. He wanted to make certain I had good balance so I didn't do anay more harm. I used it for about five weeks. I'll still use it when I need it. My brother has the kind that you can sit down on when you become tired. He loves it.

murf: You'll have to get one for the cruise Ron

LouLou: Good idea.

murf: I can't take my chair but I'll never get around the ship with a cane either

LouLou: How many have signed up for the cruise? Any more needing info?

Bruce: Mine doesn't have the seat. It has two wheels and two slide pads. It doesn supply a nice bit of support, however.

murf: My chair is just to big

murf: I'll need one with a seat or I'll be sitting on the floor LOL

Bruce: I went to a four-pronged cane for around the house. It is a little awkward at times, but it is nice because it stands upright next to my chair when I sit down. I don't have to worry about leaning it up against anything.

murf: I drop my cane constantly

Bruce: Boy, no one is on today. I wonder what happened to the regulars?

LouLou: Are we going to have enough BOD members for a quarum?

Bruce: Yes

murf: all we need is one more

Bruce: I hope we can sign up an guest for the chatroom soon. We need to stimulate the involvement before summer.

LouLou: John did a good thing by settling the dispute of the tissue situation.

Bruce: He did great. I know NIH is pleased they can start using the tissue.

murf: Ya, we need to generate interest again

murf: That's great Bruce

murf: I guess time was needed here

LouLou: TOPICS--We need to come up with topics of interest and get answers to questions asked by anyone on the chat.

murf: We need topics and people to chat

Bruce: We did that once before - about three years ago. I was moderator and if we couldn't answer the questions we asked doctors and reported back. That is something to think about again.

denny entered the room.

Bruce: Good Morning, Denny

murf: Morning Denny

denny: Good morning.

murf: Hows your weather?

Bruce: We are talking about chat room topics and mobility safety - how to safely move around.

LouLou: Sometimes I feel neww folks don't ask questions or enterr into the conversations like I would hope they would. New questions make us all think about answers to the challenges. Hi Denny.

denny: Quite nice.

denny: Hello

Bruce: We are going to be 78 today. Yesterday it was 80. Very low humidity, but plenty of pollen.

murf: 68 in Houston on the way yo 80

Bruce: It might not hurt to go back to chats we had 3-4 years ago and recycle some topics that went over well. Thoughts?

murf: Pollen will be high here today as well

LouLou: PA in the hi 60's and low 70's.

Bruce: I washed my car the other day and the golf cart. By the next morning they were covered in pollen (inside the garage).

Bruce: Denny, would topics would you like to see discussed in the chat rooms?

denny: 70 in Dayton today.

murf: That might be an idea Bruce, did we save any of those chats? Has it been that long?

LouLou: Bruce--are you a golfer or a rider?

murf: Good one Ron LOL

Bruce: Terry might have or maybe the MDA stores them in an archive format. It something to think about anyway.

denny: Moe info on research

Bruce: I ride now. My balance wouldn't be any good for golfing any more.

Bruce: Thanks, Denny

LouLou: I think we all wish there was more information on research just to keep our hopes alive about the nearness of a cure.

Bruce: Ron and Murray, did you read Paul Taylor's report for this month? He was quite enthusiastic. Denny, we do receive some information that we cannot share until it is ready for publishing.

murf: I think going to clinical trials on drugs will be exciting for me.

LouLou: Bruce--I guess we all became the one wood--(that is the driver).

Bruce: Paul's information just shows that researchers are steadily moving forward, but that there is nothing right around the corner yet.

Bruce: Are those the one's in DC, Murray?

murf: John will be talking to Dr. Fischbeck this week so it'll be good to hear whats going on there

Bruce: Denny, if I may ask, how old are you and when were you first diagnosed with KD?

murf: Yes

kelly entered the room.

Bruce: Morning, Kelly

kelly: good morning all

murf: Mornin Kelly

kelly: am i late ?? when did the chat start?

Bruce: How are things in the north country, Ke;;y?

Bruce: 10:30 EDT

LouLou: I printed out most of the first three years of chats. I called NIH to set up an interview with Dr. Sharu Chen. Haven't received date yet.

kelly: windy and cool here

denny: 54, diagnosed at age 40, confined to a powerchair at 42.

murf: Is it warming up in Sask yet?

kelly: yes finally

LouLou: Hi Kelly

kelly: hi lou lou

Bruce: Thanks, Denny, I am 58. I have two brothers with KD and unfortunately, one has passed away.

kelly: my eyes are givin me problems

Gary_KS entered the room.

Bruce: Explain, Kelly

Bruce: Morning Gary

LouLou: What is your eye problem?

kelly: iam 42 and still mobile but suffer with alot of muscle spasms

kelly: ocular allergy always sore and dry

Gary_KS: Good morning. Sorry to late.

murf: Me too (the eyes) but I blame it on the computer, I'm in front of one 12 hrs a day

murf: Morning Gary

kelly: yeah i guess i often wonder if its kd related???

LouLou: Hi Gary

kelly: hi gary

Gary_KS: Hi all.

LouLou: Do they recommend drops for your eyes?

murf: I'm lucky, I use my chair at the office so I'm in it every day too

Bruce: When I was stressed at work, my left eye would twitch (not the skin or muscles under the skin). The actual eye.

kelly: yes all kinds now the speacilaist wants to induce steriods into my eyes next app in may

kelly: yup me to bruce same thing

Terryw entered the room.

Bruce: Morning Terry

murf: Was that the sexitary Bruce?

Terryw: Hello everybody

LouLou: Interesting--steroids for the eyes but not for the muscles.

Bruce: My eye doctor said it was related to the disease based upon his understanding of it.

murf: Morning Terry

kelly: yup weid hey?? dont like the looks of steriods in my eyes could cause blindness

LouLou: Hi Terry

kelly: terry THANKS FOR THE KD BROCHURES

Bruce: When I relaxed and the stress went away, the eye muscle itself would eventually relax and the twitching (I called them spasms) would disappear.

Terryw: you are welcome

kelly: mmmm really i agrre with u bruce

murf: Is that when your sexitary left the room Bruce?

murf: I crack me up

kelly: //1

LouLou: Terry--I still have some of the old brochures with the old address. Can you send me as many as you can of the new brochure. I use them alot.

Bruce: One of the interesting things I have learned is that often things are not related to KD, but because we have KD, it ends up being a reason for the symptom.

Terryw: Sure, send me a note to remind me, thansk

murf: It's easy to blame this Bruce

kelly: well thanks now that i have the kd brochures i;ll give them to the gp;s and neurologist;s here in sask

Terryw: The local newspaper here did a full page on Me and Susanne and KD. I could not believe a full page!

LouLou: Now that there are more in the chat--What is a good topic for our chats?

Bruce: My new GP (when I moved to Georgia) took my blood pressure after I had just got up from a low chair and walked about half a block to his office. It was high and he immediately said we should run some tests. I told him to give it five minutes. It was then 126 over 72.

kelly: wow really terry what kind of story on kd???? etc??

Bruce: Can we get a link or a copy Terry?

murf: Terry - you need to put that up on the webpage

Terryw: how the KDA was started and Me and SUsannes personal story about moving up here

kelly: yes good idea murf

Terryw: I need to get Duane's article up on the web also.

Bruce: That was a good article

LouLou: Terry--please share the story.

Terryw: I will

Bruce: Terry, the two topics we are kicking around today are: New Topics for the Chat Room and Mobility Safety - How to safely move around

Terryw: good topics

Bruce: Terry, do you have access to some of the old chats under MDA days?

Terryw: Yes they are on the transcrpts page

Bruce: Or, does the MDA archive these so we could research them?

murf: How far back do they go?

Terryw: to the beginning I think. Hold on let me check

Bruce: Great! We can talk more about this at the BOD meeting. What we were thinking is relifing some of the topics that had a good turn-out and response.

Terryw: GO back to Oct 2000

LouLou: We need to learn how to walk safely and to learn how to fall with the least amount of damage to the body. If you are going to fall--drop to the ground as quickly as you can.

murf: cool

Bruce: Denny, you mentioned you have to use a wheelchair all the time. Do you ever use a walker or cane?

Bruce: Ron, when I fall. I hit the ground as quickly as gravity carries me.

Terryw: Arms don't catch a KD fall

Terryw: they collapse

LouLou: LOL--Bruce

murf: Lately gravity is taking me down faster

kelly: is there such a thing as getting a muscle biospy to determine the wastage of the lower extremities [legs] etc....

Bruce: My frustration in the last few years is that when I go down, I drop straight down over the knees and ankles. I use to fall forwards or backwards. Now I just drop.

murf: Me too Bruce the knee just goes

Terryw: A Muscle Biopsy will just show muscle wastage. Not sure if it shows how bad

Terryw: Not wort it for me

Terryw: I had one

denny: No, I am unable to stand.

LouLou: At least dropping straight down keeps you from falling into something. What we fall into is worse than the fall.

kelly: oh ok because i was wondering if gp;s can determine as to how long i can walk before i start to FALL??

Bruce: Murray, that is more frightening then anything I have experienced in the past. When I stubbed my toe or something, I could control the fall. When the knee buckles, there is no control and no forethought. Just BAM!!!

murf: Unless you keep braking your foot like me

Terryw: I have fallen about 4 times where I hit my head

murf: I hear you Bruce

Terryw: I try to do a roll

LouLou: Cinammon or jelly?

Terryw: Most of the time I fall in horse manuer

Terryw: LOL

kelly: lol

MikeG entered the room.

Bruce: Now, my brother, Kerm, falls forwards normally and occassionally backwards. I don't remember him mentioning going straight down, however.

murf: Thats a soft fall

Bruce: Morning Mike

LouLou: Sounds like you are softening the fall--Terry. LOL

murf: Morning Mike

MikeG: morning

Bruce: How is the weather in Tampa today?

Terryw: Hi mike

MikeG: I'm sorry I'm late - been talking to my brother Tom in Texas

MikeG: beautiful!!!

Bruce: I always kid around that if I would hit my head dirst, at least I wouldn't get hurt as bad.

MICH entered the room.

Bruce: Morning Utah! How are you today?

murf: Mike - where is your brother

denny: This will get you to the article on Terry & Susanne. http://www.sierrastar.com/040805lovewill.html

Terryw: I fall less when I take my pain meds. I stillthink that there is something going on there

MICH: Over slept this morning, hello all.

Terryw: Thanks denny how did you find that

MikeG: San Marcos

Bruce: Eric and Mike, we are talking about Mobility Safety - How to safely move around and ... Chat Room Topics - What should we plan for future topics?

denny: Google search.

murf: There are a few of us Near Katy just west of Houston

Terryw: I think my pain meds block the pain and allow my brain to concentrate more on the muscle control instead of the pain. This inturn lets the muscles have full concentration.

MikeG: I grew up in Park Place

Terryw: I mostly always fall when at the end of the day the pain meds wear off.

MikeG: We used to hunt birds in Katie...

murf: Mike - West Houston?

kelly: what meds u on now terry? if u dont mind me askin

MikeG: South - down near Hobby

murf: Small world

MikeG: yep

MikeG: My parents lived in that house up until 3 years ago.

Terryw: Just Ultram for the pain but I think that there is something in there that helps. I have told Dr. Fischbeck about it.

Bruce: Thanks for the link, Denny, I read about these two organizers after the BOD meeting today.

murf: We're planning a cruise this Nov. if your interested

MikeG: Murray, thanks for all of your efforts in getting the cruise set up - we're going to have a ball!!!

kelly: ok ty

Terryw: When I don't take the meds I feel so weak and tired and in pain that I don't feel like doing anything

murf: I think so Mike

Terryw: The meds also work like speed for me. they wire me up. Maybe that is why

kelly: mmmm ok

Terryw: Gary are you ok?

Terryw: Just watching?

kelly: all the gp;s and nerologist;s here in sask ..... all they offer me is anticonvulsant;s meds???? they dont help at all

Gary_KS: Yes, thanks Terry.

LouLou: I thinlk stress has alot to do with the pain. When stressed I tend to be weaker and in more pain.

Terryw: true

Bruce: Without a doubt, Ron

MikeG: I had a bad dizzy spell yesterday morning when I got up - everythng was spinning around like I was drunk. Has anyone had that happen to them?

kelly: yes it has happend to me alot of times

kelly: mike

murf: I'd get that checked out Mike

kelly: vertigo

LouLou: Yes but only when I drink. LOL

Terryw: Bruce I now use my Silverado 2500 HD to go up and down our driveway. Still looking for a reasonable priced golf cart

murf: LOL Ron

Terryw: LOL

MikeG: I went to the doctor and the nurse got a 90/60 blood pressure reading...

Terryw: Yes mike

kelly: //25

murf: There might be something there

Bruce: I never realized how much of an impact stress had on me until I retired. A month or so ago, unfortunately, my stress level increased substantially because of a situation in another BOD I was serving on. I couldn't believe how weak I became, couldn't sleep, spasms, twitching, etc. I finally resigned.

Terryw: Mine is caused by benine essential vertigo (ear rocks) lasts for days to weeks with me

MikeG: By the time the doctor came in to see me I had 120/60 and everything was ok...

Terryw: everthing spins when I move my head in any direction

Terryw: have not had it for a while

kelly: yup true dat

murf: My be thats why I'm not sleeping

Bruce: Terry, the Silverado is not a reasonably priced golf cart. LOL

MICH: I heard Muscular Dystrophy and Kennedy Disease increases you odds of diabetes... does anyone have diabetes.?

Terryw: Especially with gas at $2.59 here

murf: But theres no stess in my life //14

Terryw: good ? MICH

kelly: yes mich i heard that to esp in kd patients lateron in life

LouLou: Yes Mich--I have type 2 diabetes. Take a poill but no insulin shots.

murf: Gas in Houston just went over $2

Terryw: kelly, ESP. The ability to read thoughts?

Terryw: LOL

kelly: almost a dollar here lol

kelly: lol

Bruce: Eric, I am not convinced they are related. Out of the three of us in the family that have it, only one had diabetes.

LouLou: poill--should be pill

murf: Thats over $4 / gal

MikeG: Florida has been over $2 for over a year now :-(

murf: WOW

Terryw: Bruce/murf who's saving the transcript?

Bruce: It would be interesting to see what percentage of KD'rs have diabetes compared to the national average.

murf: Let me know if you want me to

Bruce: I have that responsibility today.

Terryw: ok bruce

murf: Thanks Bruce

Bruce: Now, whether I remember or not is another question...

murf: LOL

MikeG: Is diabetes related to exercise?

Terryw: I will remind ya

MICH: Just learning about strips and lancets for diabetes with my spouse... forgot to change the code this week and meter read 350... but she was seeming to catch a bug at the time

Terryw: Pauls Bio is on the KDA board webpage

MikeG: if so - we're all going to get it...

Terryw: the last 2 chat transcrips have been posted

Bruce: Before we end today, I want to ask everyone to consider possible chat room topics and if they come up with any to send them to me at: This e-mail address is being protected from spambots. You need JavaScript enabled to view it . I'll collect them and review them with the BOD.

Terryw: thanks Bruce

MikeG: ok Bruce

LouLou: Thanks Bruce

murf: Thanks Bruce

kelly: should have topic;s on our kd sytom;s legs arms throat etccc

Gary_KS: Yes, I have read last two chat trascripts. Thx Terry.

MikeG: I got to run - Paula and I are taking Pauline Mengel out to lunch in a bit.

Terryw: does anyone paint or build things as hobbies

kelly: my bro does terry kelvin

MikeG: Everyone take care - chat later...

Terryw: ok bye mike

MikeG has left the room.

Bruce: Even though I am officially ending the chat transcript collection, you can continue chatting. I need to take my dog out for a walk before the BOD meeting. I am signing off and will send Terry the transcripts in a moment. Thanks guys for joining us today.