Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

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Kennedy's Disease Chat Transcript  07-15-2006

Topic:  Traveling to NIH

Host: Murray Williams


Chat Participants:

Murf
fl-don
OORON
butch
KellyC
JoeK
Gary_KS
goody
Michael17810
Dean
teda

BEGIN CHAT

 

Murf: Morning Don

teda entered the room.

Murf: Morning teda

teda: good morning from Redwood City, CA

Murf: Hows the weather this morning?

teda: nice, about 60 now, high to be 83 and sunny

Murf: 80  here in Houston and sunny. Do you have KD?

teda: You are Murry correct?   I am Ted Abbott

Murf: Hi Ted. Good to hear from you again. Yup its me.

teda: I understand you met my Cousin Scott at NIH.  I was ther the next week, #11

Murf: Yes thats right and we were going to get together Tuesday night but I had a fall and had to spend the night in the hospital

fl-don: gm all

Murf: Hi Don

fl-don: hate the falls

fl-don: how was motel at nih?

Murf: Ya, its the sudden stop at the bottom that usually hurts

fl-don: i go 2 nih in sept

teda: I heard about that fall from the Dr. not using your name.   Scott had dinner with my sister Tuesday and I and wife Sue had dinner with my sister on our Tuesday and your name came up.

Murf: Its the Double Tree about 10 minutes away and very nice (3-4 star)

Murf: oh no....

Murf: //1

fl-don: what airport did u use?

Murf: Thats why I think this chat could be useful to travelers

teda: We stayed at the Bethesda Court when we were finally able to get there.     Our trip door to door was 22 HOURS

Murf: I flew from Houston IAH to BWI Baltimore

fl-don: omg, i cant stay on plane that long without filling up bag

teda: We landed at Reagan National

Murf: Don - your flight will only be a few hours

fl-don: does metro go top double tree?

fl-don: go to

Gary_KS entered the room.

Murf: I don't know I took a taxi and the shuttle to NIH

Murf: Morning Gary

fl-don: 90 here 2day

Gary_KS: Good morning! Gary Uchiyama joined from Kansas City. It is nice sunny day here.

Murf: Its very close

ORRON entered the room.

teda: June 25th was the middle of the STORMS, trip included 5 hours on the ground in Richmond VA on the plane, sleeping IN the airport and 2 1/2 hours from airport to the hotel by METRO

Butch entered the room.

Murf: Morning Orron & Ron

kellyC_ entered the room.

JoeK entered the room.

Murf: I hate trips like that

Butch: Good morning guys. Hope you all are staying cool.

Murf: Morning Kelly & Joe

teda: METRO station is 1/2 mile from Double Tree

kellyC_: gentleman!... good morning all

goody entered the room.

Murf: That is about 1/2 mile further than I can walk.//1

Butch: Great to see so many on the chat today. Murf--talking about our NIH stay is a good idea.

Murf: Morning Goody

goody: Good moring ---my first time here

Murf: I figure if it helps one then it was worth it

fl-don: welcome goody

Murf: Goody - do you have KD?

goody: Hello to all

goody: last time I checked

kellyC_: LOL...//2

Murf: Great! your in the right place

Murf: //0

kellyC_: murf lol ur kinda silly sometimes lol

goody: I'm the oldest of the last group meeting- think was in Calif

Murf: I see you not far from Houston (one state over) are you going to the NIH study?

Barb entered the room.

Murf: Were you at the last conference in San Diego?

Murf: Morning Barb

goody: yes

Butch: Did you all find that Bethesda is not a very handicap friendly town. Most of the restaurants don't have a parking lot. Most have alot of steps to enter the restaurant. I drove there and had a hard time finding places with easy access.

Murf: I probably met you then ....Hi again

Murf: //2

kellyC_: Really!!!!,,,,,,, butch thats not good !!!!

ORRON: ORRON: Good Morning---actually it's Orron's wife here. He's gone fishing this morning.

Murf: Ron - I didn't really go out that much

goody: Murf---are you Murry?

Barb: Does anyone know if there is a Kennedy's disease support group somewhere.

Michael17860 entered the room.

Butch: Of course the restaurant at the hotel is good and NIH has a very good food service also.

fl-don: this is it

Murf: Your in the NIH from 08:00 to 5 pm both days

ORRON: oops! I don't know how to run this thing!

fl-don: barb, this is the support group

teda: How do the guys that have been to NIH rate their hotels.   WE stayed at the Brethesada Court.   My ascooter would NOT fit in the elevator so we had a 1st floor room that had been flooded.   Great breakfast included in morning

Barb: Oh,    I see.

Murf: Ron - good food if you stay over night too

Butch: Barb--we are that support group--how can we help you?

kellyC_: LOL..

Barb: I just wondered if there was a group in Dallas

Murf: I stayed at the Double Tree and it was very good

Michael17860: Hello to all.

goody: Hewllo

Barb: Our Dr said that he only had one other patient with KD.   So, there is probably not a group here.

JoeK has left the room.

Butch: Murf--I stayed at the double tree also.

Murf: Barb - We tried to get a group together there last year. There are a few of us in Texas

Barb: Where in Texas ...Dallas?

JoeK entered the room.

kellyC_: Barb  there is really no su[pport group anywhere other then rite here in our chat roon kd ass...

Murf: Im in Houston (Katy) and the TJ is in Waller

Butch: Muirf--where did you have your fall at NIH and how did it happen? Were you hurt?

goody: Are there any with KD in Indiana?

Murf: I was doing the walking test (how far can you go) and made it about 1 foot away from the chair when ... down I went

fl-don: we have 6 kd'ers here in tampa

fl-don: were u using cane murf?

Murf: smacked my head so they wanted to keep me for observation

Barb: Before we moved to TX my husband was diagnosed with ALS in Tulsa.and    we joined an ALS support group there.   But, diagnosed was changed when we moved to TX

teda: Dr used a belt around my waist and walked with me.   I was the next patient after you!!

fl-don: most of us were diag with als barb

Murf: Don - yup I don't do more that a few feet with out something to hold on to

Butch: Barb--that is great--Kennedys versus ALS--the lesser of two evils.

Barb: Not sure about that

Murf: Barb - a lot of us were but I was luck and they got it right the first time

kellyC_: We should all be grateful that we have kennedys and not ALS...

Murf: Ted - glad I could help LOL

goody: 10/4

ORRON: My husband uses a walking stick which he says keeps him upright.

fl-don: be sure barb.  als usually means 3 yrs left max

Butch: Barb--ALS gives you about 5 yearsa. Kennedys says you will die with it not from it.

Murf: Me too that and my chair

Barb: I read an article in the Okla Med. Research Magazine that they are considering thalidomide as a treatment for ALS.  Anyone know any more about that and if it would help KD>

Murf: I have one of John's new canes and I think they are great!

teda: A walker is a good thing to use also.   I have one plus an electric scooter

Murf: Barb - our best chance is with this study so far

Barb: Butch:  What do you mean "with it and not from it".

kellyC_: maybe  Bard they'll find a cure for all of us ?

Murf: Walkers are great and I have one in the house when I need it.

ORRON has left the room.

goody: I find a walker -after 10 steps- my arms strat to give out----My invacare chair comes next Tues.

Murf: We usually die of resperatory failure

Murf: I also have an Invicare Xterra GT

Butch: I meam that we could live to be 100 and still have Kennedys. We will not necessarily die because of Kennedys. It will still cause complications in our lives, but we can deal with that.

Michael17860: Has anyone seen Primetime on Thursday night sith Adam the Healer?

kellyC_: whats that murf a corvette//2

goody: I find it is easier for me to use two canes when I have to go a short distance

Murf: nop only does 8 mph LOL

kellyC_: to fast for u murf...//2

ORRON entered the room.

Murf: Everyone knows to tell Orion Travel to book you a bulkhead seat I hope!! Its important

teda: good advice if any surgery is required for anything AVOID general anisthea(sp) and have a local when ever possible

Murf: My boss wants to put a speed limit in the office LOL

Butch: Because of weakness in our arms and legs--sometimes using one crutch can make walking alot easier.

fl-don has left the room.

Murf: Thats right Ted

kellyC_: lol

teda: At Costco I have been told to obey the speed limit inside the store. LOL

Murf: The bulkhead gives you extra room to stand up straight (and lock your knees) in front of your seat. Some airline economy sections are very tight. Delta economy on an MD88 just wore me out. I fell before getting off the plane.

Murf: If you don’t think you can make it off stay put. You can ask the stewardess / steward for a carry off. It’s a very narrow wheelchair that they can bring onboard and wheel you out to the waiting wheelchair.

kellyC_: gosh murf you should learn to sit down from here on if u keep falling? you'll really hurt urself

Murf: I book a window seat so I don’t have to get up every time someone wants to go to the bathroom

Butch: Murf--the airfare pd by NIH-is it for economy class only? Can you upgrade to first class?

Murf: Got to keep them on their toes Kelly LOL

kellyC_: //2

teda: Try wearing a helmet to protect your head when you fall..

kellyC_: yah no &*!@ murf lol

Murf: The study will not allow that Ron sorry

Barb: My husband decided not to participate in the study because of the difficulty travelling.  Sounds like that was a pretty good decision  because he does have difficulty getting around.  Has broken 2 hips, a shoulder and a wrist.

kellyC_: so the NIH? how mant men in there anyone know?

kellyC_: for the study?

Murf: I had a CAT scan when I hit my hear and they said that they found something between my ears

Butch: Fifty.

teda: Upgrade If you have miles with American Airlines.   That is the airlines that the Govt is using I was told

goody: I never heard back from them

kellyC_: ic ic

Murf: I was worried it wasn't there any more LOL

kellyC_: yah murf its really quite amazing ur still in one peice after all the fall's you had?

Murf: We have more than 50 Kelly but some people are backing out so still hope for everyone

kellyC_: yah i heard that alot of men wont pass becasue of low muscle emzimes etc

Murf: You can Up-grade if you use your miles

kellyC_: esp the older men

Michael17860: Barb, your husband may have osteoporosis. I fractured 4 vertebrea, broke my ankle. the DR. gave me a bone density test, I tested positive for osteoporosis. And I am only 51.

JoeK: I did not go as I could not do the walking test

kellyC_: how long is the walking test joe?

Murf: Ted - twice on that trip (once in first class on the plan) and once after I got back. I'm ok now...now /...now

Dean entered the room.

Butch: Murf--I had tendonitis when I went to NIH--The electric conduction test which you must keep your arm in one position was very painful for me. My tendons in tht arm just got tighter as the test went on.

JoeK: 100 feet with out assistance

kellyC_: ic ic ok ty

ORRON: low enzymes? oh, oh....my husband is 69 today, so he may not pass you say?

teda: Requirement is that you are able to walk 100 feet without help or aid

Barb: Wow...I know my husband could not pass that test.

Barb: He wears a gait belt every day and uses a cane and walker.

Murf: Joe they just record how far you can go. If that is 1 foot then they record that no problem here for you

teda: The walking test is a timed event!!

kellyC_: thats what the gp's  says orron

Murf: Ron that was the EMG and I'm glad they don't use pins

Barb: gotta go now.   bye

Butch: Barb--I am 66 and I was able to do most of the tests.

Barb has left the room.

Murf: Joe that is my limit too (100 ft and I'm done)

goody: your fortunate

Murf: Barb - its not a pass or fail its how far can you go

JoeK: They told me when I got the application that you need to be able to wall 100 Feet. So I did not complete the papers.

Butch: Murf--be sure to let all know that you can use a cane during the walking test.

Murf: Ted no thank GOD or I'd still be there LOL

TerryW entered the room.

Murf: Goody - if you can only do one foot then do 1 foot. Its not a problem

TerryW: Hello all

teda: Good morning Terry

kellyC_: the slots wont actually be filled till november so there is still lotsa room for kd studys etc.. alot of men wont make the study

goody: morning

Murf: Morning Terrry

ORRON: Haven't flown in 9 years. The airport provides wheelchairs I hope.

teda: My walking test was 2 minutes and measure the distance travled

kellyC_: hey terry? hows goes the battle?

Murf: Do not try to walk in the airports, it’s usually further than you think and you do not want to be worn out before the tests start

Murf: When checking in tell them again you need a wheelchair. Tipping the wheelchair pusher is not required but always appreciated. Your traveling partner may not be allowed to push an airline chair due to liabilities

TerryW: Kelly, It goes.  Very busy

Murf: Make sure they know you need assistance at the gate and pre-board when called

kellyC_: oooo ok terry

Murf: Tell the stewardess / steward ½ hr before landing that you will need a wheelchair when you arrive. This usually guarantees you a chair when you arrive

Butch: Good info Murf.

Murf: The wheelchair service will take you to collect your bags and out to your taxi

Butch: Hi Terry. How are you?

Murf: Omega travel will arrange your flights. Ph: 301-496-6676, Fax: 301-402-9033, Toll free: 1-866-227-9339, e-mail This email address is being protected from spambots. You need JavaScript enabled to view it.

TerryW: I am ok,  how about you?

Butch: OK--tryoing to stay cool.

Murf: I wrote this stuff last night

Murf: I used to travel world wide for years but not in the last 3 years (only to NIH)

Murf: All you have to do is swollow your pride and let the wheelchair do the work

TerryW: Ijust logged in to see what was happening,  I have to take off and help get some things done around here

Murf: You get to the front of all the lines too (at the metal detector)

TerryW: talk to you all on a later date

kellyC_: ok terry take it easy

Murf: So it has great benefits that you wouldn't normally think of.

TerryW has left the room.

Murf: Take care Terry

goody: I find that most of the time they will let your wife go with you --through the fast lane and not have to wait in the lines with them pushing a wheel chair

teda: If you are in a chair or scooter on public tranportion they have to make room for you.

kellyC_: so @NIH..? how many hrs do the test take in a day?

ORRON: My husband even refuses those scooters at WalMart or Safeway....and it isn't long before he has to go back and wait for me. So using the airport wheelchair might be a good beginning at least.

Murf: They will let your care give go with you but usually will not let them push the chair due to liability

goody: true

Murf: Thats right Ted - or we run them over //4

Butch: Did anyone else drive tpo NIH?

Murf: Orron - I did to for the longest time but finally common sense took over

kellyC_: mean to say u have common sence murf lol....//2

Murf: Barwood is the taxi company that NIH uses (these are blue). If you ask for a taxi to meet you at the airport (recommended) make sure you get in the taxi sent for you. This will elevate a lot of headaches when getting reimbursed. You do not pay for this unless you would like to tip which is always appreciated.

Murf: Kelly - I think so but I forgot where I put it//2

teda: In MD when the 2 METRo stations were closed due to flooding we had to do a "bus bridge" .  The locol commuters were not happy when the driver made them make room for me and my scooter at 6AM

kellyC_: lol yah after all that falling it makes me wonder about you//2

Butch: You all will finfd that common sense is not very common___LOL

Michael17860 has left the room.

Murf: The NIH will look after you. If you use their transportation you don't have to go through the security everyone else does.

goody: Got to go ---see you in Atlanta   bud

ORRON: The gal at NIH said someone would meet us at the baggage area. Is this true?

Murf: Me too Kelly but its my story and I'm stickin to it. //4

Murf: I'll be there Goody

kellyC_: lol yah u do that murf lol...//2

goody has left the room.

Gary_KS has left the room.

Murf: Alison will probably meet you at NIH or they may have someone there

kellyC_: welll got to go see ya ll next time

kellyC_ has left the room.

teda: I got in at 1:30 AM so there was no one there to meet me.   And loooong lines for tranportation.

Murf: Tasha is going back to school so will no longer be there,

Murf: Ted at the airport or the hotel?

JoeK has left the room.

teda: At the airport - got to the hotel at 7:30am, called NIH, took a shower and the the shuttle.   Ours was not the normal due the BIG storm in late June that flooded the NE

Murf: The Blue Barwood cab should have been there for you at the airport, you may have to look for them

ORRON: Not looking forward to a long day of travel...from Portland,OR to Chicago, then to Wash.D.C.

Murf: As usual after everyone has gone the first time we will have all of theis worked out LOL

Butch: It is a long day of tests at NIH. Take advantage of all ways to save your energy. Ride if you can and walk if you must.

Murf: Orron I know exactly how you feel but all I can say is its worth it and make sure you use the wheelchairs and all assistance offered by the airlines

Murf: The airlines are all good about it if they know what you need. You need to tell them

Butch: Ifg you don't aswk you don't get.

Murf: Thats right Ron

ORRON: Orron's back from the pond, so gotta' run. Thank you so much...you've been a big help.

Murf: Any time

Murf: Take care

Butch: If you don't ask you don't get.

ORRON has left the room.

Butch: Sorry for the bad typing.

teda: Remember the results of this test will help our family, relatives, friends and other members that we do not even know of our KD family!!

Murf: I know what you mean //2

Dean has left the room.

Murf: Ted - thats right I'm doing this for my brothers kids

Murf: WOW - I haven't had to type that fast EVER!!

Butch: I am so glad to be a part of this test. Who knows just what our contribution might do to help find a cure.....

Murf: Me too Ron

Dean entered the room.

teda: I'm doing for my Cousin (KD), Brother (KD)and nephews( future KD'ers)

Murf: There was never any question about me doing this

Murf: Even if they had to carry me all the way

Murf: Hi Dean - again LOL

teda: I signed early and got to be #11.

Butch: Way to go Murf--anything to get a ride. LOL

Murf: Beat ya I'm # 10

Murf: yup

teda: And so my Cousin must be #9

Murf: Thats great

Murf: I think the first 25 were very quick

Murf: I'm going to save now

END CHAT