Kennedy's Disease Association

"Surfing the internet I found the KDA and for me it was like an island for a castaway."

Kennedy's Disease Chat Transcript  10-08-2005

Topic:  Maintaining a Good Attitude

Host: Murray Williams

Chat Participants:

BEGIN CHAT

Murf entered the room.

murf: Hi TJ

doughboy: What's up

murf: I'm thinking about going to the air show tomorrow. Wana go?

doughboy: Where is it at

murf: That airport by NASA

doughboy: Heck Murf, that's too far from here, it would cost a bundle in gas

doughboy: Rember, I'm a poor ex state employee

murf: If we had a van big enough for both chairs Id buy the gas

doughboy: Yeah you alway's are being nice, that's a great quality you posess

murf: It's not that bad cuase its all on the beltway

mobiusloop entered the room.

doughboy: Hey did you see where they evacuated the Washington Monument yesterday because of a bomb threat?

murf: Good morning Mobiusloop

mobiusloop: Good Morning

murf: I saw that this morning

doughboy: Was it a hoax

murf: Bill - do you have Kennedy's?

doughboy: Hello Mobi, where are you from!

mobiusloop: How is everybody this morning?

mobiusloop: Yakima, WA

doughboy: Murf, I was talking to brother Bill today and he said he was extremely tired this morning & wondering if it was the cool weather

mobiusloop: Still a bit early I guess

murf: Do you hasve KD?

murf: have

doughboy: Yes sir I do, LOL

mobiusloop: Yes, still goung at 78

doughboy: Are you chair bound?

murf: Thats great Bill, I'm 49 but slowing down

doughboy: Murf, I think your 59

murf: Not yet you young buck

mobiusloop: I still can walk with a cane but not very far!

mobiusloop: standing is tougher

doughboy: Hey on 60 minutes the other nite, they were talking about Lou Gehrigs and saying that if you lose weight it really helps you feel better and the same thing applies for KD

murf: Me too, I use my chair most of the time for work. When I go shopping I use the carts supplied by the stores or my chair

mobiusloop: Yeah, gotta do thaT

doughboy: Murf you ought to get MDA to help you buy a scooter

murf: TJ - I always feel better when I lost 10 lbs.

doughboy: Well I need to lose 50

murf: They helped pay for my chair. A scooter will do me no good

mobiusloop: That's in my future too

doughboy: But if I do I'll lose most of my brain!

murf: LOL

johnweeb entered the room.

murf: Morning John

doughboy: How come a scooter want help you, You can use your own in the stores instead of their slow ones

mobiusloop: I'd like to ask,,, is your weakness the same in both legs?

johnweeb: morning all!

murf: I use my chair in some store if I'm in a rush

doughboy: Mine is, Hello John

murf: Yes but my left knee is the weakest only because I had a bad fall last year

doughboy: Both of my arms, also, Mobi

mobiusloop: my left foot has lost all strength-right foot is still pretty strong so I can still drive

doughboy: My doctor put me on Neurontin for pain and it's really helped me

murf: I'm thinking about getting hand controls but I am still driving

doughboy: Hell Murf, use your lips, LOL

murf: My van hauls my chair around

mobiusloop: But I also have degenerative disc's so that my be a factor. The Dr's arent sure

johnweeb: weakness profound in both legs this year but  have not bought scooter yet. what do you guys  like?

doughboy: Murf, I got my scooter and chair in but had to send the scooter back, doesn't match my new Envoy!

murf: John - this depends are what you are going to use it for

mobiusloop: Yea, which is better the four or three wheel?

johnweeb: errands, around town, et

kelly entered the room.

murf: The four wheeler has more stability

doughboy: Hey Mobi, Murf and I just went to NIH and I was told a had the same disc damage also, I did'nt know it.

murf: Morning Kelly - hows the weather up there?

kelly: it getting cooler about 5 degree's

mobiusloop: Nice here in Yakima

doughboy: Hey Kelly how's it going!  John I think it depends on you.  Do like I did, go to a mobility store and try them out

murf: When looking for a chair or a scooter remember to look 5 years out and what your needs might be at that time.

johnweeb: i did just buy  a volvo SUV,added hitch & lift. love vehicle.

kelly: real good doughboy. thanks

mobiusloop: Hey! Yakima was recently voted the forth safest place in the nation

doughboy: Yeah that's a nice one

doughboy: Safe from what!  More poloticians LOL

murf: John - you should have no problem getting a lift or ramp for your SUV

mobiusloop: That too!

mobiusloop: Of course Mt St Hellens is still there!

murf: We have an excel spread sheet on the webpage with lots of websites for mobility aids

johnweeb: got a lift already. now i;ll need a scooter sometime

murf: You can find websites for chairs and scooters on the spread sheet too.

doughboy: Well, Houstons not that safe I can tell you.  We have an ex Canadian terroist running around trying to get a gun permit, however I won't name names! LOL

denny entered the room.

murf: I just bought another ramp for thew back door using it

mobiusloop: I'm glad that the big box stores have scooters to use

doughboy: Morning Denny

denny: Hi all.

mobiusloop: Hi denny

murf: Morning Denny

murf: What is the big box?

mobiusloop: Costco, Safeway etc

murf: Is that like Sams club or costco

murf: ok

mobiusloop: Yes

murf: I use my chair in those stores

murf: I love my Sams club store

doughboy: Gotta run enjoy ya'lls day

doughboy has left the room.

mobiusloop: Sometimes they are taken by really fatpeople

mobiusloop: The chairs

johnweeb: what meds do you guys take and do they help?

murf: and sometimes they just are not charged up

mobiusloop: Neurtonin helps with the tingling in my feet

murf: All I take is extra B-12 and folic acid as well as a multivitamine

mobiusloop: but I think that is caused by damaged nerves in my back

murf: Fish oil too 2000mg per day

mobiusloop: Yes, I'm going to take B-12 too

kelly: clonazipam helps me a litte

mobiusloop: Good info about meds, thanks

kelly: here in sask I have tryed every kind of anto convulsant meds

kelly: anti i mean lol

johnweeb: i take neurontin, topamax, rilutek...but unsure if they help.  plus tons of vites and supplements. what is chlonazipm?

mobiusloop: I have to find a good Dr. who specialises in geratrics

murf: Me too

kelly: dilantin, neurontin, clonazipma is a muscle relaxant

murf: I'll fall asleep if I take those

mobiusloop: Is a muscle relaxent good?

denny has left the room.

denny entered the room.

denny has left the room.

kelly: DOM-CLONAZEPAM   0.5 MG  3 TIMES DAY TO HELPS MY MUSCLE SPASMS

denny entered the room.

kelly: yeah i guess

mobiusloop: Interesting

murf: for some reason I don't have many spasms anymore

denny has left the room.

murf: They kind of come and go

kelly: yeah murf???? as iam only 43 maybe when i turn 50 my spasms will go away

mobiusloop: I just have weakness. No pain to speak of

murf: I hope so Kelly LOL

kelly: lol

johnweeb: kelly,  what are your spasms like?

mobiusloop: Except in my back due to disc degeration

kelly: severe and painful sometimes i fall off the bed @ nite almost crying and dancing my muscle tightened up really bad

kelly: then they progress to other parts of my body

murf: Kelly I have had that too

kelly: i feel like dying the pain is so bad

murf: Mostly in the back of my neck

kelly: thank god it only last a few minutes at a time

kelly: yup me to my neck also

mobiusloop: KD sure affects people differently

murf: TJ has the same pain (I think) in his chest and the dors say it could be the muscle atrophying

kelly: I think Iam  going to suffer into old age with kd !!!!!!! hopefully not lol

denny entered the room.

mobiusloop: My brother and I just have the weakness

johnweeb: wow.  i have weakness but no pain...severe slumping. i just turned 66...face & hair  look 50,  walking looks 80!

kelly: stairs are getting to be a problem for me to just lately

murf: Kelly - I'll be suffering withyou unless we find a cure.

denny has left the room.

kelly: yeah i know murf

kelly: i feel like quitting the meds nothin seems to help anyways?

murf: I know what you mean John...I'm 50, look 30 but walk like 90

kelly: i look like 27 and iam 43 lol so my kids tell me lol

kelly: check out my story on the kd web page if you dont belive me lol

murf: I don't like some of the side affects Kelly, you might want to consider if they are worh it but talk to your Doctor before you do anything!!

johnweeb: is anyone w orking on a cure? in philly? minneapolis? or ?? any miracle workers?

kelly: my step- daughter wants to do a story on kennedys disease for her school project she is in grade 9

mobiusloop: Good! encourage her!

kelly: yeah thanks mobi..... i will help her out

murf: John - We have researchers who are working now and the NIH are planning a clinical trial that may start very soon.

mobiusloop: I help out teaching first graders about 3 or 4 hours a week

mobiusloop: ood to hear about that

mobiusloop: good

murf: All of that infor can be found on our website. Terry has done a great job of that.

kelly: yes he sure has murf yup

kelly: terry is awsome fellow

mobiusloop: They better hurry though

johnweeb: murf, not MAY, but MUST.....there HAS to be a cure...we HAVE to have action

murf: Kelly - She has lots on stuff on the site to go through

kelly: yes for sure yup

mobiusloop: They could experiment on us oldsters What have we got to lose?

murf: Thats what we're all praying for John

murf: Bill are you regisatered with NIH?

Dutch entered the room.

mobiusloop: Hi Dutch

murf: Morning Dutch

mobiusloop: How do you register with NIH?

kelly: hi dutch never seen u here before plz to meet u

murf: &*!@ are you registered with NIH (sorry I've been calling you Bill)

murf: &*!@

murf: mobi

Dutch has left the room.

murf: I think I found a bug in this program

kelly: what kind of bug murf????

johnweeb: what's the name of the doctor in philly who was a guest here a fe months ago & does ayone have his website or e-mail?

mobiusloop: Dr. Fishbeck?

mobiusloop: Terry would have that

murf: Mobiusloop - I was trying to spell your real name but this program thinks I am swearing

kelly: john just do a search on him tro neurology on kennedys disease on the internet you;ll find him

mobiusloop: Thats what a mobiusloop does ;)

johnweeb: fishbeck is it...i'll aks terry. where is he today?

murf: e-mail me and I will give you all the contact info. This e-mail address is being protected from spambots. You need JavaScript enabled to view it

johnweeb: will do murf, thx.

mobiusloop: Iv'e got have my Dr. hook up with one of those guys

murf: Yes Dr Fiscbecks group but we contact Alison

mobiusloop: His assistant?

murf: No I'll look

murf: Alison La Pean  NIH/NINDS/NGB  10 Center Drive  Building 10, Room 5C-438  Bethesda, MD 20892-1426  (301) 496-8969 (Office)   (301) 480-0056 (Fax)  This e-mail address is being protected from spambots. You need JavaScript enabled to view it (Email)

murf: She said I could pass this on to any one of us to contact her.

mobiusloop: Thanks I'll take that down

kelly: who is alison anyways???? whats her speaclity?

murf: She will get you all sorted

johnweeb: murf, who is alison? s she connected with  dr fishbeck?

kelly: well got to go all.............. bye and see ya next chat session

murf: She is a Genetic Counselor and works with Dr. Cheunju Chen, Dr. Fischbeck and Dr. Nicholas DiProspero

kelly has left the room.

murf: sorry I had to look that up

mobiusloop: Yes, me too. Thanks for the conversation guys.

mobiusloop has left the room.

murf: Bye all Have a good weekend and stay safe

johnweeb: you too. i'll be in touch be  e-mail murf

murf: any time John have a good weekend