Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Kennedy's Disease can be a lonely existence in many ways, but the KDA makes me feel I'm not alone, thank you."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript  06-18-2005

Topic:  Mobility

Host: Ron Wiker

 

Chat Participants:

Terryw
johnweeb
doughboy
LouLou
kelly
murf
FL-DON

BEGIN CHAT

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.

FL-DON: HI ALL

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

FL-DON: johnweeb, check with MDA TO SEE IF THEY CAN GIVE YOU A WHEELCHAIR/SCOOTER AND VEHICLE LIFT FROM LOAN CLOSIT.

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 waters...so 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

END CHAT