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  06-18-2005

Topic:  Mobility

Host: Ron Wiker


Chat Participants:



Terryw: Hi John,, You made it

Terryw: I will be right back

Terryw: back

johnweeb: i'm looking for thoughts and suggestions on small scooters, lifts, and the SUVs or vans that will accommodate them. Are any SUVs large enough o hold scooters (e.g., the Volvo SUV)? My Volvo Station Wagon lease is up 7/31 and we're shopping. Morning Terry!

johnweeb: My virgin chat experience!

Terryw: John you may want to ask that question again in a bit when more people arrive.

Terryw: We looked at the Volvo SUV

Terryw: The headroom in the back is what matters

Terryw: Vans work great

johnweeb: Was it large enough?

Terryw: not for my big chair

Terryw: a mini electric maybe

Terryw: you can always use an external lift to take the chair

Terryw: on the volvo

LouLou entered the room.

Terryw: hi ron

johnweeb: Did you buy chair first then van to fit it?

Terryw: Murray will be here shortly he knows most on scooters & vans

LouLou: Good morning Terry and John. How are you?

Terryw: No John I had my 4runner first

Terryw: then the chair

Terryw: had to use an external mounted lift

Terryw: still use it

johnweeb: what brand is your chair?

LouLou: Terry--can you load your chair yourself...Is it hard to do?

Terryw: Pride Model Jazzy 1180

Terryw: its a breeze on the external lift. just drive onto it and it locks itself in place, no straps

johnweeb: How much does it weigh? Did you consider a scooter?

Terryw: ROn john is new to chat but not to the KDA

LouLou: No disassembly at all--sounds great.

Terryw: my chair is heavy, Difficult to travel with

FL-DON entered the room.

Terryw: for travel I take the old manual chair

Terryw: hi Don

LouLou: John--where are you from and when were you diagnosed with KD. Hi Don.


johnweeb: Topanga, CA

FL-DON: got a w/c from the mda loan closit last week. it is like new

murf entered the room.

Terryw: John was going to come to one of our past conferences but had to stay back at last minute because of the fires in Malibu in Calif

johnweeb: About 10 years ago at USC

murf: good morning all

Terryw: threatened his home

FL-DON: also got a power chair given to me by a guy whos wife passed a few months ago

LouLou: Don--How long can you use the chair? Hi Murf.

kelly entered the room.

FL-DON: can use the chair forever

doughboy entered the room.

Terryw: his wife Susan did the questionairre answers for us

doughboy: Good Morning Everyone!

Terryw: Susanne is converting the book to PDF format each section at a time right now

FL-DON: were the rtesults of the questionairre ever published?

LouLou: Hi TJ--Hi Kelly.

Terryw: for the web

murf: Morning TJ - did you get my e-mail this morning?

kelly: hi everyone how's it goin today??

Terryw: Don we have them but its very big and had to find a way to get them on the web for people with dial-up to be able to download

murf: Morning Kelly - hows the weather up there?

doughboy: Nah, I haven't looked yet, what did you say, did you get my call this morning? I left you a voice mail!

Terryw: we resolved that

doughboy: Hi LouLou

kelly: lots of rain flooding in alberta canada

doughboy: Looking like rain here in Hockley, Texas also this morning

johnweeb: I'm looking for thoughts on the best small chair or scooter and SUV or van to hold it. Need latter by 8/1.

Terryw: Murray is your man

murf: TJ the phone never rang...AT&T.... I should get it some time today.

LouLou: I hope everyone is keeping Bruce in their prayers. He had a very nasty break. Wish him well.

Terryw: Yep

doughboy: Well Murf maybe your gettin old and hard of hearing!//2

kelly: what happened to bruce??? did he FALL?

johnweeb: Who is Bruce?

Terryw: Murf, john need advice on scooters & vans/suv's

murf: That goes without saying!

Terryw: Bruce is a KDA Board member & friend. He is always in chat

LouLou: Yes he fell and has to keep his leg elevated above his heart 23/7.

doughboy: Hello Johnweeb, my name is TJ, from close to Houston, Texas, I'm Doughboy on the chat!

FL-DON: john, i have a chrysler t&c with a pride victory scooter, and a harmar crain type lift model a-200. worked great for me for 5 years now

johnweeb: thanks, don

murf: John - I have a spead sheet I put together on all this info with websites and toll free numbers including car company rebates

doughboy: Is it better to get a scooter or wheelchair for stores,etc!

FL-DON: w/c's work well in home, scooter best for me outside

Terryw: Scooters in stores suck. way to slow

doughboy: I hear that, thanks

johnweeb: murf, what's the toll free no?

Terryw: take your own to stores

doughboy: How about motorcycle, Terry!//0

murf: A chair turns in a smaller radius and is more stable that a 3 wheeled scooter


LouLou: I think livining within our limitations should be a topic we must discuss. We have had so many guys flling and breaking bones. We mustwork at it.

Terryw: good idea Don

murf: John I have many companies listed all with toll free numbers

Terryw: I fell twice yesterday

Terryw: lucily I did not get hurt

Terryw: luckily

doughboy: No, just kidding but Terry is correct the scooters in the stores that are furnished by them are too slow, you know when a 90 year old with cane passes you, it's slow!

Terryw: spelling Ahhhhhhhhhh!

FL-DON: i fall without warning. cant think of anything to do but use a scooter or w/c

FL-DON: i take my scooter everywhere. usually no problem

murf: Don - get one, it doesn't matter at this point. Just don't fall anymore

FL-DON: did bruce fall and break foot?

Terryw: yes don

Terryw: bad break

FL-DON: got both murf

doughboy: I just quit working and I am now in the process of getting MD and my insurance to buy me a scooter

johnweeb: what brand of scooter, don?

FL-DON: i fell and sprained foot in oct. still swells

FL-DON: pride victory

murf: John - I have a power point presentation and a excel spread sheet on the 2003 conference page on our website. You should find everything you need there.

FL-DON: but would recommend a slightly smaller scooter to ease entry into van.

doughboy: Murray, my message to you this morning was to invite you to a Bar B Que tomorrow at Louise and Caharleys house starting at 1.00pm if you don't have anything planned.

murf: Food did someone say food? I'll be there!

doughboy: Good, bring your appetite, maybe we will get in a poker game

johnweeb: what van or SUV does everyone like? going to be tuff to give up my Volvo CC wagon

Terryw: John I will forward you Murrays Mobility spreadsheet right after chat

kelly: //23 //23

doughboy: I like Toyota previa

doughboy: Kelly, if your around

LouLou: It seems that most fall are uncontrollable. How can we lessen the severity? Will exercise help?

FL-DON: i luv my chrysler t&c, but most domestic vans are the same size

kelly: around??

murf: Lots of us have the Toyota Sienna

doughboy: Kelly, if your around Houston you can come too

kelly: lol yeah ok I"LL jump on my private jet lol

FL-DON: i have absolutely no control when i feel a fall coming. go down on foot usually hard

doughboy: Too our Bar B Que, you can ride with Murf

FL-DON: toyota nice but pricy

murf: TJ - Kelly lives in Canada

kelly: sask my fellow kkd 'ers

Terryw: John you can still get the Volvo SUV but you will have to use an external lift and platform to get the chair around. I have a cover for mine for rainy days

doughboy: I know, it's a joke, I saw his coffee cups, Toyota will give you a discount and here in Texas the disabled do not pay sales tax on their cart

murf: Don - I got a symphony model with electric doors for 22 K 6000 off sticker price

FL-DON: the platform on back of car/suv is a pain in the rear. always taking on/off. can leave scooter/wc in van

murf: Tax & Title - free. $1000 rebate from Toyota and then the dealer rebate too

LouLou: Don--I hear what you say. Falling down is hard to control. Just hope for the best.

FL-DON: what is symphony??? murf

Terryw: I have no problems with mine Don drive on drive off, locks in place no straps

FL-DON: loulou, thats why i am now using chair/scooter

johnweeb: Terry, you have the

doughboy: To all the Fathers out there, Have a Happy Fathers day! I have to go early today, have to shop for my 80 year old Pop. Goodbye, See ya tomorrow Murf!!!!!!!

murf: Don - thats a fancy model of the van

FL-DON: cya db

doughboy has left the room.

Terryw: Star Lift, with swing away function so I can still open the back with the lift on

FL-DON: toyota murf???

LouLou: So long TJ. Happy Fathers day.

murf: see ya TJ

FL-DON: my next van will have a ramp

kelly: by tj

Terryw: John I will send you the link to the lift I have

murf: Yes Toyota sienna

FL-DON: so its a toyota/sienna/symphony then. so confusing

johnweeb: terry, thx.didn't know you had a volvo suv

murf: I put a Bruno curbsider lift in it. The spread sheet has a link to both Toyota and Bruno

johnweeb: does your chair fit inside the volvo?

FL-DON: what is a good model of w/c? tried a permobile but they are too big for home

murf: Right Don symphony is the model so I don't see them as expensive

FL-DON: gotcha. got 3 years left on bumper/bumper warranty so gonna put off ramp van till then

murf: Invicare is the one I have but I have lots of links to lots of different kinds on that sheet.

Terryw: I dont have a volvo SUV we looked at them

FL-DON: ive been to all the w/c sites but hard to figure out which 1 is best

FL-DON: lots of patients here have pride jazzy's

johnweeb: is Symphony a chair brand? Gotcha, TW

murf: Don there are also lots of companies that will build you something special or modify something you have.

Terryw: Never had a problem with my Pride Jazzy, only when the Airport dropped on the tarmack

FL-DON: doc wants me to get recline/tilt, elevating legs, gel seat and back & power. most everything but elevating seat

Terryw: good idea don

FL-DON: i'm leaning toward jazzy

Terryw: I wish I had those options

kelly: wow, very informative!!.. the wheel chair's etc

murf: Symphony is a model of Sienna van. The chair I have is an Invicare X-terra GT

FL-DON: what do u have terry? i remember them dropping your chair in baltimore as i remember

Terryw: Jazzy 1180

johnweeb: thanks, murph

kelly: pretty expensive terry???

murf: Don - also concider service when buying

Terryw: yeS I think so, Insurance paid for it

FL-DON: mda gave me a jet 2 hd, but seat dont move. otherwise, nice around home

kelly: ok cool

FL-DON: not give, but loan. same same

murf: Invicare have the seat tilt option and I'm sure Jazzy does too

FL-DON: they do murf

murf: MDA paid $2000 of my chair and give me $500 per year fro repairs and batteries.

Terryw: yes murf, but you cant have the tilt option if you have the seat lift option at the same time

kelly: murf? how long is the batteries last???

FL-DON: i get the 500 also. great for batteries and repairs when i run into something

Terryw: I have had same batteries for 7 years

kelly: really wow?

FL-DON: i get new batteries every year or so

murf: They tell me 1 year but I had no problems with my first set which I had for two.

Terryw: keep it charged corretly

kelly: yeah i suppose so hey?

FL-DON: hope u guys have a great cruise

murf: I do too Terry but now have a spare set in the garage

Terryw: cool

murf: You should come with us!

Terryw: We don't have to travel in Calf, we let the earthquakes move us around

kelly: lol hahahahahaha

FL-DON: already went on 2 cruises this year and another 1 booked for early next year

murf: How did you fair on the last one?

kelly: soon ur state will sink terry lol

murf: Ocean front property in Texas!!

Terryw: Where I live earthquakes don't bother us now. We live on a solid Granite base

FL-DON: i own oceanfront property in death valley

kelly: lucky,,,,, yup

LouLou: Don--How was it on the cruises you were on as far as getting around in you chair or scooter?

FL-DON: hurricanes in fl, earthquakes in ca, tornados in mi. always something

kelly: yup no doubt, fl-don

Terryw: It's only time til the US has a Tsunami

kelly: yupper i agree

FL-DON: i was on cruise with scooter, but many w/c's also on cruise. if newer ship should be accessible

Terryw: So John, what do you think of the chat's? Pretty informative huh?

murf: We just passed a law that even forgin cruiselines must have handicap access if operating in US waters

FL-DON: why terry, we've never has a tsunami be4

FL-DON: good new law murf, but does it apply to old ships or newer 1's?

Terryw: Don we have only been here less than 300 years

kelly: look at yellow stone national park? soon it will erupt

Terryw: we are due

johnweeb: re posture, does anyone else--or everyone else--have trouble standing up straight? feels as if a hinge has broken in my lower back this year and can't fix it.

FL-DON: lol terry, how long do u plan to live, rotfl

murf: Any ship operating in US they have to modify if they want to come here.

Terryw: we are a mere blink in the eye of time

Terryw: not me john

FL-DON: just weak back mustles johnweeb. i have same problem

FL-DON: muscles

Terryw: I have weak back muscles but they bother me mostly at night

kelly: i have sever pain in my lower back at times?? can hardly move and painful

murf: Not I

FL-DON: only problem i encountered on ship was getting up off pot

LouLou: Terry--I must go for now--will you save the chat?----- See you at BD meeting.--- Thanks!

kelly: cant even walk sometimes

murf: Just in my lower back some pain

Terryw: Yes Ron

murf: See ya Ron

kelly: by ron

FL-DON: bye ron

LouLou: Thanks!!! SAo long till next we chat. Stay healthy.

LouLou has left the room.

murf: I bought a walker for the cruise

Terryw: I wear a back brace sometimes. A real good one

murf: The chair will be a pain I think

Terryw: triple velcro

Terryw: about 11" wide

FL-DON: i recommend u take a chair/scooter murf

murf: Is that for lifting weights Terry?

Terryw: support of weak stomach muscles & lower back

kelly: mmm i should get one terry?? mite help me?

Terryw: it helps a lot

kelly: really good idea thanks

murf: My chair is 267 lbs and a little big for the house

kelly: holy crap! u a weight lifter murf lol

FL-DON: wow murf,

murf: I'm trying to get us in the center of the ship

johnweeb: 267! my gaawd!

murf: It does 7 1/2 mph and will do offraod

FL-DON: center is good murf

murf: offroad

kelly: 4 by 4 lol

FL-DON: warp speed then

murf: not yet!

FL-DON: let the force b with u

kelly: lol

murf: My boss said he's putting a speed limit in the office for me

kelly: lol

FL-DON: //2

murf: I do ok

murf: but I don't want to run over anyones foot

FL-DON: well, gotta go. nice 2 c all of u again. take care, bye

Terryw: see ya don

murf: Take Care Don

kelly: by don

FL-DON has left the room.

johnweeb: nice to chat with you all

murf: Its been a dry year in Houston so far

Terryw: glad you could make it John

murf: Take care John, check out the website

johnweeb: good start, tw

Terryw: Next chat July 2

murf: Call us any time

kelly: the company terminated me yeasterday now i have no benefits just my insurance hopefully lol

Terryw: sorry kelly

murf: Can they do that?

kelly: 2 yrs and 4 months on long term diss

Terryw: what did they term you for

kelly: well i still have my diiss insurance

Terryw: disability

Terryw: ?

kelly: they said they are frusterated with me about not returnii ng to work??

Terryw: does canada have laws against that

kelly: terry may i send u an email on the letter i got and u can give me some feedback

murf: There are laws for that up there, isn't there?

kelly: ??? i dunno

Terryw: Kelly I don't know the canadian laws

kelly: ok

Terryw: I would consult a disability lawyer

Terryw: free consult

kelly: yeah i will thanks

murf: Me either anymore but I would talk to a lawyer

kelly: yupper i will

kelly: thanks

Terryw: Sounds like unfair termination

murf: Must be a echo in this place

kelly: yeah they say i still have great west life diss but no more benefits

murf: I'd check into it

kelly: med eye etc

kelly: yup

kelly: monday for sure

Terryw: sounds like they are trying to pull something n ya

kelly: yup

murf: Let us know how you do on this

kelly: will do for sure

Terryw: 5 min left

kelly: well gtg take care all bye

murf: I got to run all of you take care. Terry talk to you in a few

murf has left the room.

kelly has left the room.

Terryw: see ya later john