Archives - 2015 and Older Transcripts
Kennedy's Disease Chat Transcript 06-18-2005
Host: Ron Wiker
Terryw: Hi John,, You made it
Terryw: I will be right 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.
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
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
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
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
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
kelly: 4 by 4 lol
FL-DON: warp speed then
murf: not yet!
FL-DON: let the force b with u
murf: My boss said he's putting a speed limit in the office for me
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
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
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
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: monday for sure
Terryw: sounds like they are trying to pull something n ya
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 johnEND CHAT