Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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Kennedy's Disease Chat Transcript  04-04-2009

Topic:  Open Forum

Host: Murray Williams


BEGIN CHAT

shamar1228: h
MikeG: morning Stan
Stan: Morning Mike
MikeG: looks like everyone forgot about the chat this morning
MikeG: morning Shamar
Stan: Not everyone. Maybe their clocks are off
shamar1228: morning
MikeG: I can't stay too long today, my brother is in town and I'm going to meet him for lunch before they go on their cruise.
shamar1228: how is everyonew
Ron: Good morning from windy Penna.
MikeG: morning Ron
Stan: Hey from Michigan
MikeG: nice in FL
MikeG: mid 70s now - mid 80s later... :)
Ron: I think I would rather be in Fla.
MikeG: sometimes I feel guilty looking at the weather across the nation...
shamar1228: cold here 25
MikeG: burrr
shamar1228: u said it
MikeG: I got a walker last month - REALLY has made a difference in my gait
Ron: Boy--the northwest having all that rain and snow. WOW!
MikeG: much better than a cane
shamar1228: yea in we in the flood
MikeG: we could really use the rain down here - dry as a bone!
gary_kc: Good morning. This is Gary joined from KC. Do we have a chat tody?
MikeG: morning Gary - yes we do
Ron: Mike--did you get a walker with hand brakes and a seat?
gary_kc: Hi Mike.
MikeG: yep!
MikeG: really help to have a seat when your legs decide to give out
shamar1228: so does everyones legs get bad?
MikeG: oh yeah!
shamar1228: about what age
Ron: I was lucky for quite awhile, but I have been having alot of leg weakness lately.
MikeG: sometimes mine just buckle at the knees and if I'm not really alert - I go down.
Stan: Eventually. yes. I'm still walking and refuse to give up and use a walker or scooter...
Ron: The age varies.
MikeG: I went down so hard one time that I broke my fibula!
gary_kc: My legs are very weak. I can't walk at all.
MikeG: do you use a cane Stan?
shamar1228: my legs feel like they drunk alot
Stan: I never broke any bones yet. I do use a cane from time to time.
MikeG: how old are you Stan?
murf: Hey all
MikeG: morning Murf
murf: morning
Stan: 56. been fighting this for 20 years now
murf: sorry I completely forgot
MikeG: np
Ron: I used a cane when walking outside but, now i use it inside the house too.
MikeG: senior moment... :)
murf: My passport expires on Tuesday
MikeG: me2
murf: was on my way to get photos
MikeG: now I use the walker inside - really helps!
Ron: Hi Murf--how are you doing?
shamar1228: stan when your legs get bad
murf: ya but I'm still Canadian to INS
murf: Hey Ron
MikeG: what were the photos of?
murf: Tierd man All the time
murf: passport photos
MikeG: oh
murf: nothing like leaving things to the last minute
shamar1228: my heels hurt so bad is that norm
murf: Gary how are u doing
MikeG: my passport expired years ago... don't want to go anywhere now anyway
Ron: Do you still go outside the US for your work Murf?
gary_kc: MikeG, I am fine. Thank you.
murf: no but I need a passport just to be here
MikeG: shamar1228 - do you think you might have heel spurs?
murf: until I get a US passport
murf: shamar1228 have u tried foot massage?
shamar1228: dont really know
MikeG: oh, I thought you became a citizen Murf... A
murf: I'm trying Mike
murf: 've done everything they asked
MikeG: it's probably really hard now... A?
shamar1228: tried and that hurts to bad side of foot cant touch like needles
murf: I think I'm too white (iecback)
murf: iceback
MikeG: that sounds like neuropathy.
murf: A?
murf: LOL
MikeG: are you taking Neurontin?
murf: thats eh?
MikeG: :)
murf: get it right Mike
murf: LOL
shamar1228: no!does it help
murf: I left Canada over 12 yrs ago
murf: shamar1228 for me ... yes
MikeG: I know someone who had a problem like you have with his hands rather than his feet and he said Neurontin helped.
shamar1228: i got dr on tue i tell him that
MikeG: ok
murf: I just bought a foot massage wi9th heat that was only 30 bucks and works pretty good
Ron: I tried neurontin but it didn't help. Then I tried naproxen--seemed to help.
MikeG: it's worth a try - that drug is not very expensive. At least if you get the generic Gabapentin.
MikeG: what does Naproxen do for you Ron?
murf: Most of us have problems with our feet
MikeG: yep
murf: and legs
shamar1228: i'm on naproxen and darvcet
Ron: Helps with tingling and pain.
MikeG: oh, ok. The only pain I have is in my lopwer back.
murf: Back pain and leg pain here
MikeG: Well guys, I need to go meet my brother for lunch before he and his family go on a cruise out of Tampa. Until next time - be careful!
murf: ok thanks Mike
shamar1228: had bad day yesterday head tremors and sever spams had to go er plus got a disc disease
murf: take care
Stan: I must not have much pain, or I tolerate it well. I don't take anything. Never was one for any type of meds
murf: Disk disease?
Ron: See ya Mike--stay healthy.
Stan: Bye Mike
murf: Stan I was like that for yrs until I mentioned it on a chat on day
murf: LOL
murf: one yr later I was on pain meds
shamar1228: deterating disk disease and pinched syact nerve
murf: shamar1228 dam
murf: are you seeing a neurologist?
Stan: I didn't even take the pain pills prescribed after my pacer, 7 years ago. My Dr. is a neurologist.
murf: ok
shamar1228: i see one too
murf: As long as they know
shamar1228: worked to hard yesterday had to do 3 peoples jobs so i piad 4 it
murf: My Dr said that the reason I'm on the meds I'm on now is because I would not take pain medication for so long
shamar1228: murf what you on
Ron: Hi Terry.
murf: that always kills me to do to much work
murf: Hey Terry
Terryw: Hello, I forgot all about chat this week
Terryw: Sorry
Stan: My Dr. says there is no reason for me to be on meds yet.
murf: Gabapenton and Ultram ER
Terryw: I forgot to send out a reminder
Ron: Alot of people forgot about the chat.
murf: I noticed Terry
murf: lol
murf: thanmk s to Mike
Terryw: I have been so busy and I am worn out
murf: I bet
murf: nice looking place
Terryw: the landscaping is done now
Terryw: thank you
Stan: There's a chat today? I better get out of here and go sign in.lol
murf: finished?
Terryw: I had to babysit the landscapers all day fopr 2 weeks
murf: lol
Terryw: to make sure they did it right
murf: I know the feeling
Terryw: It avout killed me
Terryw: about
murf: yup
shamar1228: they won't give me that cuz inter with oter meds i on
Terryw: I can hardly move now
murf: I still do
Ron: Terry--thanks for the certificate. I know that I got alot more than I gave from being on the board.
murf: Hey Ron nothing has changed ... your still here
Terryw: You you are most welcome, Your being on the KDA board was great and you will be missed
Terryw: exactly murf
murf: see you at the next conference Ron
Terryw: I am having real problems swallowing any food now , it started about 3 weeks ago, I wonder what is happening.
Terryw: even well chewed food
murf: U got KD I bet
Terryw: I do not like this
Ron: I have been choaking alot also. I seem to hang mym
shamar1228: me also it sucks hard to take meds
Terryw: Yes it gets hung up by the adams apple
murf: I've had problems swallowing for a while too
Ron: hang my head down toward my chest which makes swallowing hard to do.
murf: I have to drink water
Terryw: me also
Stan: I feel my biggest problem is swallowing food. I have a whole list of food no-no's. Pills are #1
murf: I have travel cups with water all over the house
Terryw: A few times I have had to bend over to cought it loose
murf: I need to take much smaller bites
Ron: Me too Terry.
Stan: That is a regular ritual for me when I eat, Terry.
Terryw: I am not used to this, I guess It is just the next stage
shamar1228: i got to have water to get food dne 3 times to get it down
murf: yup heard that
Stan: Plain water makes me choke. I have to add flavoring.
murf: really?
Terryw: gary , stan and Ron are you on facebook?
murf: nice cold ice water .... mmmmmm
murf: lol
Stan: No. no use for it
Ron: I have been having trouble holding my neck up. I'm doing exercises to stregnthen my neck but, ite doesn't seem to be workoing.
murf: I'm spending a lot of time on facebook
shamar1228: my flem is a big problm
Ron: No.
murf: chating with lots of people
Terryw: ron do you read a lot or do things where yoiu hold your head in a dowards position
Terryw: downwards
Stan: Don't feel bad Ron. None of the exercises work for me.
murf: shamar1228 me too and a lot from deep in my lungs
gary_kc: I sometimes have swallowing problem, but it is not so bad so far.
Ron: Just lazy I guess, Terry.
murf: Ron I need to hold my head up at work alot
Terryw: I am thinking that my allergy meds may be affecting me swallowing because the same time this started is the same time I started taking the allery meds
Terryw: I think it is drying out my throat
shamar1228: murf i feel like it in my thoart all the time cant get it down
Terryw: allergy
murf: weird
murf: I gulp water down
murf: but sometimes it hangs up
Ron: I took the swallowing test at NIH and we saw that I had to swallow twice sometimes to get the food down.
murf: me too
Terryw: next time you guys dont get a Chat reminder by Thurday evening please send me a reminder ok if you think of it, this way I can send it out
shamar1228: ron i got 3 times alot
murf: lol OK Terry
murf: can you remind me to remind you?
murf: lol
Terryw: lol
murf: is our minds going?
gary_kc: I took the swallowing test at ALS clinic once.
Ron: Shamar--it is frustrating to choke on very small pieces of food.
Stan: I'll set up an auto-reminder email in my Outlook for both of you.
murf: got to be carefull if you live alone
Ron: They already went>>>>LOL
murf: thans Ron lol
murf: k
Ron: You bet.
shamar1228: yes very and got to hack it back up
Terryw: thanks stan
murf: Terry is Susanne going to give you a few days off?
Terryw: she leaves for out of town tomorrow
murf: time off!!!!!!!!!!!!!!!
murf: lol
Terryw: I have one day to recover before she leaves
murf: zzzzzzzzzzzzzzzzzzzzzzzzzz
murf: I've been sleeping alot ... anyone else?
Terryw: lots of stuff to take care of everyday around here
shamar1228: i dont sleep to hard
Terryw: I am always in bed by 8:30
murf: I need one day a week for sleeping
Ron: Me too. I used to sleep about six hrs a nite--now about eight or nine.
Stan: Yes. Real tired for some reason. Take naps during the day. Don't sleep well at night.
murf: I can't take naps
gary_kc: I take 8 to 10 hours sleep. It feel better.
shamar1228: i also wore out just cant slp to many spams
Ron: Nock off the naps and you will sleep better at night.
murf: I try to get 8 hrs but most times 6
murf: morning pooh
poohsdaddy: Good Morning to all -- was at church giving out boxes of food for Easter to needy families.
murf: good job!
Stan: Knocked off the naps for a while. No change in sleeping habit.
Ron: Pooh--good to help others.
Stan: That is a Kiwanis thing going on toaday.
Terryw: Sorry I was late again. I have to go. chat with you all next time.
poohsdaddy: Our list was more than double of that from last year. Many more unemployed with children.
murf: cya Terry
Ron: Terry--tell Susanne to have a good trip. And just say HI from me.
murf: I bet
gary_kc: Bye Terry.
murf: and the lines are goig to get bigger
Ron: So long Terry--stay healthy.
poohsdaddy: I also take naps occasionally, but try to stay in bed at night.
shamar1228: it so bad everywhere
murf: but we still have each other!
shamar1228: yes we do
Ron: Right Murf.
murf: did anyone see Glenn Beck on Friday?
Ron: No.
shamar1228: no who is that
poohsdaddy: I'll have to read later to see what I missed. Didn't get a reminder this time, but plan to be back in two weeks.
Stan: No. I was watching Stargate this time.
murf: this is what he said on national TV after he poured his heart out
murf: Glenn Beck is a regular guy like you & me
murf: He's on FOX
shamar1228: k
murf: we need to come together in times like these
Ron: Thanks for a good chat--must go for now--stay healthy till nexzt we chat. Bye
shamar1228: yes we do wish everyone would
murf: we can point fingers or hug thy nieghbor
murf: lol
shamar1228: have good one ron
murf: cya Ron
shamar1228: rite
poohsdaddy: We also have a craft fair/raffle/silent auction today at the middle school. I'll have to go also. Thanks to all.
Stan: Bye Ron. I have to sign off too.
gary_kc: I got to go. See you at the next chat. Take care.
murf: ok cya and stay vertcya Gary
shamar1228: cya all be safe
murf: ok u too
murf: by all