Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

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Kennedy's Disease Chat Transcript  04-04-2009

Topic:  Open Forum

Host: Murray Williams


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
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