Kennedy's Disease Association

"KDA is One SUPER, Non-Profit Organization."

• Paulag
• Mikeg
• Teda
• Gryphon
• kdfl
• jake

Susannew -- {welcome Susannew}

Paulag -- {welcome Paulag}

Susannew -- Hello Paul.

Susannew -- I don't recognize your user id... have you been in a chat before?

Paulag -- Hi, Susanne. This is Paula Goynes

Susannew -- Hi there Paula! Thanks for joining the chat.

Susannew -- How's the weather in Georgia is it?

Paulag -- Mike is logging on now. He really enjoys these chats, so I decided to see what it's all about, too. You guys are doing a great job!

Susannew -- Thanks Paula. We're certainly trying. We've got a big job ahead of us to raise funds for research.

Mikeg -- {welcome Mikeg}

Mikeg -- Greetings from HOTLanta!

Mikeg -- Good early-morning to you Susanne.

Susannew -- Good morning Mike.

Susannew -- Yes, its early here. And I made the mistake of staying out late last night.

Teda -- {welcome Teda}

Susannew -- Good morning Teda.

Teda -- Good mprning Susanne.

Susannew -- Teda: I now you've been in chat's before, but I can't remember what your real name is-

Teda -- Ted from Redwood City, CA

Susannew -- Hi Ted. Its always easier when I know who the users are.

Susannew -- Are any of you going to the Families of SMA conference?

Susannew -- That will involve some travel, which is our topic today: Vacations and travel.

Mikeg -- Absolutely!

Gryphon -- {welcome Gryphon}

Susannew -- Last time we went to the FSMA was our first (and last) time to

take the electric wheelchair with us on a plane.

Susannew -- Hi Patrick.

Gryphon -- Hello everyone. My screen name is Gryphon, but my actual name

is Patrick Griffin.You can call me Patrick, or you can call me Pat,

whichever you prefer.

Susannew -- The airline seemed fine as we were getting on. Terry was there

to explain how everything works (His Jazzy wheel chair is very fast and a

bit squirly at fast speeds.) So them getting it on the plane was fine. It

was the getting off.

Susannew -- We could see them through the airline terminal glass yanking

the wheelchair down the unloading ramp from the cargo bin because they

didn't know how to turn it on. Then, four guys picked it up, its heavy by

an area that should not have been used to do that and not delicately put

it on the ground. Then they finally figured out how to turn it on and

instead of someone getting in (the weight would have helped here) they

pushed the joystick forward and proceeded to run it into a van. Meanwhile,

I was going ballistic in the airline terminal because the gate check-in

people would not stop them or call down to them to let them know what to do.

Mikeg -- Susanne: Was it worth it to have the electric or would a manual

have been ok? We have a friend that takes her manual on vacations because

of the hassle of the electric.

Susannew -- I could not believe what I was seeing. Mike: It was not really

necessary to have the electric chair at the show. Ever since then, we've

taken the manual chair.

Susannew -- We learned at the FSMA show how to tag the electric wheelchair

with sticky notes on what to do, what not to do, it looked like a pinata

by the time we were done with it!

Susannew -- The airline did a much better job bringing the electric chair

back. Except they cut the wire to Terry's horn. He was not a happy camper

needless to say.

Gryphon -- My major problem with travel had to do the last few years I was

still in the Army Reserve. I had to do quite a bit of connection

travelling on those little bitty airplanes. I had a big challenge getting

up those steps. Any ideas on that?

Susannew -- Gryphon: What does an airline do to help you with steps when

they are not giving the standard catwalk to get on?

Gryphon -- Not too dam -er - durn much. They mostly watch, wring their

hands, and hope I don't fall.

Susannew -- Gryphon: Noone offers to help or even carry you up? What if

you were completely unable to walk?

Gryphon -- I could walk, and can get up stairs using the handrail and my

walking stick, but usually on those small planes they just have cab;es as

handrails and they are not supportive.

Gryphon -- I am just glad I'm retired now, and if I fly, I go from big

airport to big airport and skip the little connecting flights. :-)

Susannew -- Has anyone got any good ideas for vacation ideas? Places

easily accessible for someone with SBMA, not necessarily for those in

wheel chairs, but easy, level walking for the great outdoors, or other

places?

Teda -- We are trying a cruise ship for the first time in a couple of

weeks. This seems like a good way to go different places on one vacation.

Susannew -- Ted: You'll have to let us know how the cruise goes... we've

thought about this as a potential vacation also. Also maybe getting anyone

who'd like from the Kennedy's Disease Association together to go for a

cruise and get a chance to meet others with Kennedy's... maybe sometime

next year?

kdfl -- Most of our traveling now is done using my van so I can have all

the assistive devices that I use around home.

kdfl -- I would have a lot of trouble getting out of an airline seat due

to the close quarters. My Seat Assist would be a necessity.

Teda -- kdfl - what is a seat assist?

kdfl -- Teda, a seat assist is a pneumatic cylinder cushion that lifts me

up when I take a little weight off. You can see it at WWW.up-lift.com

Susannew -- John: I've heard of others using this kind of device also. Its

a great help to you? (I couldn't get along without the two that I have)

Susannew -- Thanks for the web site reference.

Susannew -- John: It seems like traveling by your own means is probably

the easiest. Although, the trains over in Germany were very easy to access

and use with the wheelchair and the seating is not crammed.

Susannew -- We take our 4-Runner that has a wheelchair lift on the back of

it and life is much easier. The bummer is we loved to hike and its not

easy finding trails that are wheelchair accessible. We need to do some

more research to find smooth or paved trails. The national parks usually

have a couple of these. The beach is out for long walks, but boardwalks

like Venice Beach, California or Atlantic City are doable.

Gryphon -- This is a long post, but I think it is full of good hints. It

will broken into several posts. I got it via an ALS news letter, and as

there are more of them than us and use power chairs a lot, I hope this

provides some help. 1. Call the airline ahead of time and notify them that

you will be traveling with a power chair. Tell them that you will need to

bring the chair right up to the door of the plane. (This is their usual

procedure with power chairs.)

Gryphon -- 2. Be aware that federal law (the Hazardous Materials

Transportation Act) requires that power chair batteries be removed for

flight transport and remind the airline that this needs to happen. Tell

them that you will need two battery boxes, the correct paperwork and the

services of a mechanic when you arrive at the gate. The airlines are well

aware of this regulation. A Catch-22: my husband's chair must be brought

to its full height for the batteries to be removed; then it's too tall for

the cargo hold! (The feds never thought of that.) So we simply disconnect

the batteries and let them stay in the chair for flight, and no one

objects. Only once did the airline bother with the paperwork. 3. When you

arrive at least 2 hours early, check your bags and tell the baggage person

that you are traveling with a power chair. They will give you a special

tag for the chair. Go right to the gate and get your husband boarded.

Airline personnel are trained to board paralyzed persons and will be most

agreeable if you let them do it their way. Get the kids and the nurse on

board too. 4. Tell everyone that you want to stay with the chair and

supervise until it is loaded into the cargo hold. They will be delighted.

The last thing they want is full responsibility for this expensive-

looking contraption. Show them how to make the chair move after the

batteries are disconnected. Show them how to make the chair as compact as

possible. (Figure out how to do this before BEFORE your trip, not the way

I did, in the belly of the cargo hold with the whole plane waiting for me

to do it.) The more you hold their hand, the happier they will be. Get the

chair key and tell them you are going to keep it on your person and will

give it to anyone who needs it. 5. Check the chair all the way through to

your destination. Arrange for your husband's manual transport to any

connection flight. Ask for reassurance that your chair has made the

connection. Tell them it will be OK if you deplane last when you arrive at

your destination. They will be pleased. If a problem arises and you need

help getting the chair back to operational mode, ask for a mechanic who

has worked with a power chair. Alot of people fly them, so experienced

mechanics abound. Hope this is helpful! Good luck. Sylvia 2. Arrive at the

airport at least 2 hours before your flight. If you arrive before any

other scheduled passengers, you will get the full attention of the airline

people, and they will be helpful instead of harried.

Paulag -- {welcome Paulag}

kdfl -- {welcome kdfl}

Susannew -- There is also a law that states they have to honor you if you

request your folding manual wheelchair be stowed in the cabin area.

Susannew -- Even though this law exists, they argued with Terry and I on

Lufthansa. He has bought special wheels for the trip that would explode

under pressure and he did not want them it in the luggage bin. If they let

the air out, then on the other side, we would have flat tires!

Gryphon -- I'll do some research on the Federal laws re: traveling on

common carriers with assistive devices. We'll post it on the KDA Web site.

I use a walking stick, and I've had to learn how to get it past the

securty guards and airline boarding people who wanted to take it away from

me. They though it could be a weapon and maybe I wanted to hijack the

plane to Tierra del Fuego or somewhere... ;-)

Susannew -- Patrick: When will you be sending that travel information for

the site. Now that we've moved it to www.kennedysdisease.org its a bit

more challenging to post. But not a problem.

Teda -- And maybe Washington will get our 49er Jerry Rice!?

Gryphon -- I've talked to Terry. I guess I'll just email it to him, and

have him edit it and post it in the appropriate spot.

Susannew -- Patrick: We'll wait for it. Thanks.

Susannew -- Terry's been working very hard on the new web site. He had to

move each individual page and link over to the new address that he was

able to locate and purchase. www.kennedysdisease.com was already taken...

bummer.

kdfl -- Terry has done a terrific job on the web site and I for one really

appreciate ALL of his hard work.

Susannew -- Thanks John. I'm sure he'll appreciate hearing that.

Susannew -- Welcome KDFL. Would you share your real name?

kdfl -- Real name is John Mengel from beautiful SUNNY Florida

Susannew -- Hi John. Rainy Southern Calishington! I swear we're getting

all of Seattle's weather these day's and they're getting our sun and

earthquakes!

Mikeg -- {welcome Mikeg}

Susannew -- Disneyland allows anyone with a chair to go to the front of

the line immediately on approximately 95% of their rides! Being a Southern

California girl, I grew up going to DL at least once every couple of

years. Waiting in hour long lines... After Terry got his chair, we did all

of Disneyland in 4 hours. It was great. Disneyland express.

kdfl -- Susanne, we have friends that love to go to amusement parks with

me as they also get to go to the head of the line with me.

Susannew -- Yes, were quite popular for that reason also!

kdfl -- My biggest problem is not being able to get off the rides once

they are over. You do need leg strength for that.

Susannew -- I almost feel guilty going ahead of everyone on the rides. I

feel like someone in a wheelchair probably has it easier waiting in lines

than others standing. But those who have muscular disease tire easier and

quicker, so it makes sense. Also, many of their lines are not built to

allow a wheelchair room to get through, but the exits are always wide

enough to get in.

Susannew -- Yes, some of the rides are hard to get out of. They are so

low. But the attendants seem pretty helpful and of course Terry had me.

I've nicknamed myself the "mule" cause I'm always helping him in some

way... getting up, or taking things up the stairs, etc.

jake -- {welcome jake}

Susannew -- Does anyone have anyplace they would not recommend for someone

with KD to travel to?

Susannew -- Good Morning Jake. Have you been on this chat before? I don't

recognize the user id!

jake -- Hi jake here from Grenada

Susannew -- Welcome! What time is it there?

jake -- No my first time howver I am a Kennedy loptto winner.

jake -- 11:04 a.m.

Susannew -- Does anyone have a vacation experience they'd like to share

that would help others with KD?

Susannew -- We went to Germany Austria and Switzerland last September.

They were mostly accessible, except for the very old parts of town which

were built centuries ago. I'm sure then they weren't concentrating on

disabled accessibility!

Mikeg -- I like to go to the beach for vacations. I like to body surf and

just be out in the water. Now I'm afraid to go out because I have such a

hard time getting back in. The waves beat me around so much comming back

in to shallow water that I'm exhausted by the time I get back on the beach.

Susannew -- Terry loved to body surf also. He still wants to do this, but

I'm worried about him out there. What if his legs give out on him? They've

done that to him in the past just walking.

Susannew -- Mike: Do you find the sand difficult for you to walk on?

Mikeg -- Yes, it's a challange.

Gryphon -- If you think sand is a challenge, try wading through snow

drifts. After a couple of steps, it's fall down, and crawl to the nearest

warm place! :-)

kdfl -- No more SNOWDRIFTS for me!!!!

Mikeg -- Yes, I've done some crawling before...

Gryphon -- I get a couple of magazines and there are ads for travel

agencies that cater to the disabled community. They know places that are

accessible. I'll get that info to the KDA site.

Susannew -- Now they were accessible because Terry can still get up and

walk over a threshold or up a couple steps here and there. But someone who

could not walk would find it difficult to get in to some places. Like

McDonald's in Interlaken. You had to walk up about 7 steps before you

could get in and there was not ramp.

Susannew -- Rotenberg Germany was absolutely beautiful, but murder on

Terry in the wheelchair. The entire town is cobblestones. He had to get up

and down the most while we visited that town. But we knew it would be

difficult as it was built in mideviel times.

jake -- Prague is very accessible. Some streets have cobblestones but they

are all ramped.

Susannew -- The Neuschwanstein Castle did not have an accessible tour the

day we were there. They only did these kinds of tours on Wednesdays... It

pays to check ahead. Luckily enough, Terry had already been there years

ago when he was stationed there in the Air Force. So he let me go on the

tour myself (my first time to Europe). There were SOoOOOOOO many stairs!

Susannew -- Octoberfest in Munich was no problem. In fact, we got let into

a beer tent before 50 other people, simply because Terry was in the chair.

Although, once inside the Lowenbrau tent, it was almost impossible to

move. It was wall to wall people. It would have been difficult for anyone,

chair or not. But the people were extremely polite and helpful as we made

our way around... They would move for us to get through as I probably

mispronounced, "enshuldigung bitte!"

Susannew -- Munich, Hannover, Lake Konigsee, Garmisch-Partenkirchner,

fussen, and Hofen Am See in Germany were very easy to get around in the

chair. Innsbruck in Austria was easy. Interlaken, Bad Ragaz, Grindelwald,

Bern, Zurich, and St. Gallen Switzerland were easy. Whereever Terry could

not go, I went, like to the top of a cathedral in Bern, 300 steps up, and

photographed and videotaped for him. Blausee, a beautiful lake that's

really a trout farm, was paved to get there, but difficult to push Terry

up and hold him down the hills to get there.

Gryphon -- Susanne, did you go to Neuschwanstein Castle (the one they

modeled the castle in Disneyland after)?

Susannew -- Yes. That's the one where they only had one day for disability

accessible tours. We did go to Linderhof also, another of Ludwig's

castles. Linderhof had a flight of stairs, but the tour guides carried

Terry's chair up the stairs and I helped "push" Terry up them. I get

behind Terry, cup my hands facing upwards and push on his rump and walk up

behind him. He says it feels like he can walk easily again when I do this

on the stairs.

Gryphon -- Gosh, I remember all those stairs!! I have to admit, though, it

seems that Europe is far ahead of the US on many accessibility issues.

kdfl -- We haven't done too many different things for vacation. Mostly a

little gambling and visiting family and friends. The casinos are VERY

accessable.

Susannew -- KDFL: LOL! Yes, Las Vegas is no problem!

kdfl -- Las Vegas is too crowded. We like Biloxi and Wisconsin casinos.

Susannew -- I've never had a chance to get to Wisconsin. Is that Biloxi

Mississippi?

kdfl -- Susanne, yes it is Biloxi, Mississippi

jake -- You may have covered this but cruises are great especially the

newer ships.

kdfl -- Jake, could I use my three wheel scooter on the cruise ship to get

around?

jake -- AS far as the 3 wheel scotters they are just fine on ships. I used

one before I moved to an electric chair.

Gryphon -- Also, to give you a chuckle to improve you endorphins, and for

some good hints, visit this site: dizABLED at http://www.dizabled.com/ .

It's great!

Teda -- AARP should have info, now that I am a member and most of you are

not I'll try to get some info to share

Susannew -- Thanks Gryphon and Teda. We'd appreciate the information to

share with others. We do have a travel tips page, but we'd like to add to

it. http://www.kennedysdisease.org/travel_tips.html

Susannew -- It has information on picking a travel agent, traveling with a

wheelchair, national parks, etc.

Gryphon -- Some people have asked me how I maintain a good attitude. It's

because I'm thankful for my life before KD. For example, I spent three

years in Germany when I was strong, and visited Rothenberg and all the

other beautiful places., that I cannot do now.

Gryphon -- I've watched some of the diabled sports. For example,

paraplegic wheelchair races and skiing. However, when we lose our upper

body strength, that is not an option for us...

Mikeg -- Same here, Pat. We are lucky not to have gotten something like

SMA type I at age 10.

Gryphon -- Roger that, Mike!

jake -- Sorry to change gears but do other Kennedy folks have lower

extremity circulation problems and skin that's turned a darker color?

Gryphon -- Jake, yes, especially my right foot. Part of the problem is the

calf muscles no longer act as pumps to move blood and lymph up against

gravity.

kdfl -- Jake, no darker skin and no noticeable circulation problems.

Susannew -- Jake: The only circulatory problem Terry has had in his lower

extremeties is cold feet.

jake -- As far as cold feet that's also somehing I have even in the

Caribbean.

Mikeg -- Jake: Cold feet here too. No darker skin either.

kdfl -- Cold doesn't affect my feet near as much as it affects my hands.

They don't have any strength at all when they get cold. That's why I'm in

Florida.

Susannew -- Terry's hands are unusable when its cold also.

Gryphon -- Besides KD, I ruptured a disk badly while flying helicopters in

the Army. I lost most feeling in my right leg, and after a year, it mostly

came back. My KD symptoms, though started in my right leg.

Gryphon -- Years later, I sufferd a gunshot to the right ankle. It trashed

an artery and nerve, which the doctors repaired. However, I'm sure my

artery is occluded and that also reduces circulation in my right foot.

Gryphon -- So on some days, my right foot is noticeabley colder, number,

and darker that my left foot. Other days, they're about the same. But they

both feel colder as my KD has worsened, and I never had cold feet before.

Susannew -- Sounds like you've been through the ringer with the armed

forces.

Gryphon -- I have a second cousin who has KD and is 20 years older than I

and 20 years more advanced. Actually, we were both diagnosed correctly

about the same time. He has always complained that cold causes him

problems such as weakness.

Susannew -- fgf

Susannew -- Something very weird just happened to the chat! I thought it

dropped me out, but didn't. Sorry for the incoherent post.

Gryphon -- Susanne- I thought that was keyboard slang for some curse

words!!! ;-0

jake -- From reading past chat sessions I think I may be an old timer with

KD I progressed from a cane to crutches to a wheelchair, skotter and now

finally an electric chair. I had KD for 24 years. I've also experienced

nearly all of the medical problems & symptoms I've read on chat so I'm a

bit knowledgeable if someone has a question.

kdfl -- Jake, I've also had KD for a good number of years. I'm 66 and use

all of the things you mentioned and am glad for all of them.

jake -- By all means if you have to be physically challenged this time in

history is pretty good since there's so much to offer.

Gryphon -- Hey Jake, how do I not feel foolish when I fall down in public

and have to have a Cub Scout and a little old lady help me to my feet? :-)

Mikeg -- Jake, how old were you when you moved to the chair?

jake -- Im in the chair for about 10 years now.

Mikeg -- Jake, how many years did you use the cane before going to the chair?

Gryphon -- I use a walking stick to get around, sor short distances. I

have a manual chair I take to places I'm unsure of. I use the manual and

power chairs in stores to shop with. My question - is it better to do as

much as possible, or accept the inevitable and start using a chair more or

always?

Susannew -- Jake: Are there any symptoms you have that you have not read

others talk about yet?

Susannew -- 15 minutes left til chat closes.

jake -- I know others have spoken about it but my major proble is with my

lungs. I just got back from Miami where I spent 3 weeks in hospital for

Phemonia and another two months in a physical rehab center trying to

strengthen my muscles. I now use a nebulizer as well as other lung meds.

Susannew -- Jake: How old are you?

jake -- Susanne I'm 53 years old.

Susannew -- Pneumonia is someone with KD's worst enemy. As KD progresses,

it will more and more affect the respiratory system. Terry runs from

anyone with a sniffle or sneeze. When he gets sick, he cannot breath and

is up all night choking as his laryngal spasms act up.

Gryphon -- I've developed some allergies, so my nose drips crud into my

lungs, which I have to cough out. My doctor tells to drink pretty of water

to help keep everything loose. But that makes me have to pee, and that

means hoblbling to the toilet. What's a guy to do? It's like being between

a rock and a hard spot! :-)

kdfl -- I used a cane more before I broke my foot in a fall. Now I am more

causious and use a walker or my scooter.

Susannew -- Falling is quite dangerous. It is easy to seriously hurt

yourself.

Gryphon -- When it was snowy and icy here this winter, I really became a

recluse. Just yeaterday, I went to a local cafe for a sndwich, and they

all thought I'd been taken by aliens or something. ;-)

Gryphon -- I'd like to see Terry run. LOL

Mikeg -- John, are you still planning to come see us in May?

kdfl -- Mike, I don't recall anything about a visit in May. My memory

isn't what it used to be either.

Mikeg -- It may have been someone else - I'll just have to check the

previous chats.

Susannew -- I'd like to thank you all for coming to the chat. The next

chat is in two weeks and the topic is weight control and the exercise

dilemma.

jake -- Let me congratulate you Terry and Susanne. Although this is my

first on line chat I have been following this KD sight from the inception.

Great Job!!!

Susannew -- Please email me with more chat topics, I'm running out of

ideas! This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Teda -- we will miss the next chat as we will be on our cruise

Susannew -- Thank you Jake. Gryphon is also a board member. Patrick

Gryphon.

Susannew -- Bon Voyage Teda.

jake -- Congrats to him also.

Mikeg -- Goodbye till next time...

Mikeg -- {goodbye Mikeg}

Susannew -- Goodbye all. Take care.

kdfl -- Goodbye until next time.

jake -- If anyone is planning a cruise to Grenada West Indies make sure

you contact me & I'll make it a point to take you to lunch.

Susannew -- Thanks Jake. And anyone planning to come to the greater Los

Angeles area, let us know!

Susannew -- Where's the most beautiful place Jake in the West Indies?

Paulag -- {goodbye Paulag}

kdfl -- Same for anyone coming to Florida!!!

Gryphon -- Travelling notes: assistive devices, meds, plan ahead, travel

at site, what else do we need to put on the KDA travel page?

Teda -- Same for anyone comming to San Francisco CA area

jake -- bye bye until next time!

Gryphon -- I know no one wants to come to Kansas, but the same goes for

me, too...

Susannew -- Gryphon: LOL

Susannew -- Bye!

Susannew -- {goodbye Susannew}

kdfl -- {goodbye kdfl}

Teda -- {goodbye Teda}

Gryphon -- Ted- my brother lives in Mountain View. Email me contact info

so the next time I go out there (and I don't know wehn that will be), we

can do lunch or whatever.

Gryphon -- {goodbye Gryphon}

End Chat