Kennedy's Disease Association

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Kennedy's Disease Chat Transcript 07-13-02

Topics: Dealing with Frustrations

Host: Terry Waite


Chat Participants:




terryw -- {welcome terryw}
johnm -- {welcome johnm}
johnm -- Good Morning Terry.
terryw -- Hello
johnm -- Well, now there are at least two of us!!!!
terryw -- Had a server problem this morning, its being corrected as we speak.
terryw -- should be only a minute
johnm -- I'll have it easy if this is all that we get.
terryw -- the site just came back up!
johnm -- Your getting pretty high tech with a server and all.
johnm -- You're that is.
bruce -- {welcome bruce}
speedy -- {welcome speedy}
johnm -- Hi Bruce.
johnm -- Hi Speedy.
bruce -- Good Morning. I had trouble getting in to the web site this morning for some reason.
terryw -- It's is hosted by a network friend of mine but his router equipment has been having problems lately. It may be time to look for a pay service.
terryw -- he has been hosting it for the KDA for free
johnm -- Aren't computers fun. What would we do for AGGRAVATION without them?
terryw -- Hi Bruce
speedy -- hope every one is fine?
susannew -- {welcome susannew}
terryw -- Yes John,, they always seem to have propblems when you have something really important to do
rudy -- {welcome rudy}
terryw -- hi speedy
terryw -- hi Rudy
rudy -- hito all
susannew -- Good morning!
johnm -- Hi Susanne & Rudy. Terry finally you on too, did he.
rudy -- hallo good morning
terryw -- Hi Susanne, Long time no see
susannew -- Ha, ha...
terryw -- john, did I?
johnm -- Do you mean that Susanne isn't sitting right next to you? LOL
terryw -- she is upstairs
susannew -- You know, we need a volunteer to go back through old chat sessions and extract the information regarding medications that individuals are taking, put in one place what kind, dosage, what for, and if helpful to share with others in one place - perhaps in the forum. What do you think?
susannew -- I'm upstairs in my office (now that I work from home (business development officer out in the field based out of the house), I have an office dedicated to my day-job.)
terryw -- 2 offices in the house. we are out of room
daveg -- {welcome daveg}
johnm -- Susanne, being upstairs means you don't have to worry about being bothered by Terry, do you?
susannew -- One for the KDA, One for my employer... Lots of work going on here!
speedy -- terry we talked about the police, I have always been afraid if I GOT OUT OF THE van and fell an officer would think I was drunk and try to give me trouble had it happen once but he helpeed me up and back to the van with no problem.
susannew -- To be honest, Terry isn't a bother... much! We just need an intercom system or walkie talkies now!
terryw -- speedy, did they think you were intoxicated?
susannew -- Speedy, you might want to carry the KD medical identification card we developed that is on the KDA Web site. It states you have KD and leaves room for you to put other information regarding other medical conditions or medications taken. Good to have in the event of an accident and you need to be taken to the hospital. Doctors need to understand you have KD (especially if considering surgery or other critical treatment). Good to show a police officer in that event also if they don't believe you!
johnm -- Terry & Susanne, looks like you don't have enough time to bother each other.
terryw -- Hi Dave
speedy -- no he was teal nice when I told him what the problem was
bruce -- Speedy, I had the same concern a while back. Especially if he asked me to walk a straight line heal to toe.
terryw -- What frustrations do you all jave other than spouses?
terryw -- Just kidding
terryw -- LOL
susannew -- I get concerned about handicapped parking, when we get out and Terry can walk - people give us wierd looks. I'm always thinking our car will get keyed. We've had notes left on our car "You're not handicapped..."
bruce -- I guess we have nothing to talk about today then.
daveg -- Goodmorning all- is there a special topic for today?
speedy -- thanks susanne radio shack has intercoms that plug in to your electrical system wwith out having any wireing done.
susannew -- Bruce: LOL
patrick -- {welcome patrick}
patrick -- Hello everyone!
bruce -- Movies - most are not handicap accessible unless you plan to sit in the front rows. Almost all of our good theatures have mny steps.
johnm -- Susanne, The info card is a real good idea for a lot of reasons.
terryw -- I get really frustrated when I try to work with my hands on small objects and my fingers stop working. I want to smack a wall. But I just set it down & wait a bit and come back.
terryw -- Dave the topic is frustrations
daveg -- Thanks
susannew -- Bruce, I know, isn't that frustrating! I help Terry up and down the steps. Either you are sitting where you have to almost break your neck, or in the stadium theatre near us, you can take the elevator up and you sit in the very back row!
terryw -- Same here in the theatres bruce. I remember hearing about someone filing a lawsuiit on that with the theatres.
susannew -- John: Are you carrying it in your wallet now? I filled out Terry's and put it in his wallet. Just in case.
bruce -- Terry, I have a very light pair of gloves that I use to warm my hands in the winter. It really helps keep the fingers flexible.
bruce -- Susanne - I am carrying mine. You never know.
johnm -- My biggest frustration is like Terry, knowing what I want to do and not being able to do it. I was able to do ALL the work around the house before but now can't do it any more. I feel guilty that my wife has to do all the housework now that we are retired.
susannew -- Bruce: That's good to hear!
terryw -- bruce, its not just the cold,, its the muscles go dead.
susannew -- I'm frustrated that Terry and I can't do things together that we used to be able to do... play softball, hike, jet ski... I feel guilty if I go do it without him. But am trying to do better. I have to realize I have to do these things or else I resent it.
daveg -- Talking of theatres, the most frustating is going to a new theatre and thinking you have booked easily accessible seats, with the advise of the booking agent, only to find a sneaky mountain of stairs between you and your seat.
bruce -- John I am right there with you. Guilt, uselessness, etc. All of those emotions. Another frustraton is those high curbs. Who ever designed those never thought about people that have health issues.
johnm -- Susanne, I have filled my ID out yet as I didn't realize how much it may help.
susannew -- Its easy to find on the home page:
bruce -- I also miss the great outdoors - Cindy and I did a lot of hiking in the mountains. It was great. The places we went, a scooter won't go.
johnm -- We're just not big on theaters so I haven't had to put up with them.
susannew -- Terry and I have found movies one of the things we can do together.
speedy -- terry when I fall and not having the strength to push my self backup and lots of other mechanical problems tha to me is realy frustrating.
susannew -- Something else we are doing together now is photography. He could never understand me and my obsession with my camera until just the last year. Now he's got his camera and we plan days to go take shots together!
terryw -- I find it really frustrating and embarrasing to climb stairs or get up off the floor when others are around that do not know of my health problems.
daveg -- My wife Liz and I do a lot of movies and theatre (ballet) going, once inside and seated you're the same as everyone else!
johnm -- Our thing together is shopping, eating out, and casinos.
rudy -- {goodbye rudy}
johnm -- Susanne, what kind of "SHOTS" do you mean?
susannew -- LOL! Shots... alcohol? Wise cracks? Oh... I mean landscape, florals, etc. The proper term is exposures...
john-c. -- {welcome john-c.}
johnm -- I'm with all of you on FALLING and trying to get up. That's why I'm using my scooter and wheelchair more now.
terryw -- Hi John
john-c. -- Hi folks: I'll catch up with you in a few minutes
bruce -- Falling is the curse of the drinking (or KD) class. We have all been there - in public - when it happens.
terryw -- The only time I really fall in public is at the Beach.
bruce -- I think I am with Susanne, my greatest frustration is that it changed the life that Cindy and I enjoyed so much - nature, hiking, beaches, etc.
patrick -- Falling once in a while can be acceptable. I just went through a two month period of falling several times a day. Then it really starts to drag you down mentally.
terryw -- I know bruce. It really gets me mad also.
bruce -- They named a wall after me at work. One day I did a header and made a large dent into the sheetrock.
john-c. -- For me the falling is natural, but I really can't get back up. Wednesday it took me 20 minutes in the back yard.
john-c. -- Best grass stains in the world on the knees
speedy -- it realy gives me out when I fall then getting up, like runing around tthe block.
johnm -- Bruce, we really have to keep our sense of humor and take our shortcomings in stride.
bruce -- I don't know about the rest of you, but I also find I get frustrated and impatient more easily these days.
john-c. -- Me too, Bruce
terryw -- Walking on the beach in sand has to be about the hardest thing in the world for me now.
daveg -- The last big fall I had I needed six stitches in my eyebrow. I'm a whole lot more careful now and never go anywhere without my stick. I also think that at a certain stage of KD you more prone to falling as your body can't sense what is happening as you are about to fall. Later you seem to regain this sense.
john-c. -- All those things that the mind says "do" but the bod won't let you.
patrick -- I seem to have two general kinds of falls: controlled and surprise. In a controlled fall, I can feel my legs getting 'goosey', and I can do a cotrolled flop. That;s more mebarrassing than anything. Surprise falls catch me unawares, and I go down suddenly, and I usually end up with part of me bleeding or sprained.
bruce -- Or, Dave, we become more aware.... Either way it is a blessing.
johnm -- Any slight trip or stop with feet and we can't catch up so the only way to go is DOWN.
john-c. -- I have come up with a way to walk safely and with confidence on the sand.
bruce -- Patrick - oh the stories we could all tell......
bruce -- Tell us more John.
speedy -- I fell 3 weeks ago in the kitchen got my toes caught under the stove and broke them cleaN at the foot
john-c. -- Bruce, do you use a cane?
daveg -- I also battle in the sand Terry but I think it is a good excercise for us (in moderation). I always feel better a day or tow after walking on the beach but my beach walks are pretty short these days. I think the sea air helps too.
terryw -- Bruce, We need to talk, I have some idease that we should incorporate.
patrick -- {welcome patrick}
bruce -- Yes, I use a cane when I am out and about. I don't use one around the house.
john-c. -- Me too....great ones that work and are marketable & patentable
johnm -- I broke my foot a couple years ago and was in a wheelchair for three months. Now I have two AFOs (Ankle Foot Orthotic) that I have on whenever I walk. If I haven't got them on I'm in the wheelchair.
john-c. -- Bruce, I'll send you an email.
bruce -- Thanks, John
terryw -- I am frustrated that I do not have all the energy I need to get done what I want.
bruce -- I never broke a bone until about five years ago. Since then I have mutilple fractures of the toes, foot, fibia and skull. that doesn't take into account the bruises, contusions, etc. All part of the challenge of remaining active and alive....
susannew -- We've heard of so many falling... and so many getting hurt this way! Please be careful and don't be too proud to use aids. I hear it time and time again from emails we get that those with KD don't want to use that wheelchair or cane.
john-c. -- Bruce: it's sent.
johnm -- Terry, do you have any trouble with cane getting stuck in the sand when you walk there?
daveg -- John-c, what is your walking on the sand technique?
patrick -- What technique do you advise be used by a volunteer helper when you fall? I tell them to grab my belt and pull me up until I can get my knees locked. Any other suggestions?
terryw -- Do not use a cane at the beach,, I use people
john-c. -- USE THE CANE> It helps make me look extinguished!
bruce -- I am with Patrick on the two types of falls. one is controlled. It is embarassing, but normall fairly safe for a fall. The other - when I turn to fast for example - are the danagerous ones that usually cause some type of damage (other than pride).
terryw -- But John-c has an Idea and I do also on this topic and we may talk of incorporating the ideas.
susannew -- I put one hand on terrys hand the stronger one under the elbow and help pull him up. He leans on me at the same time as I pull upwards. Getting up the stairs, I sometimes get behind Terry and push up on well... his derrier! (We're married, so ok for me to do!)
terryw -- Patrick, if its a girl, ask for a full frontal hug to lift you up. LOL
susannew -- YOu know.. thinking about this further, I really put one hand under his elbow and the stronger one on the very upper arm - almost under the arm pit...
johnm -- I usually need two people to help me up. One on each side or one with arms around my chest from the back. It helps if I can get to a chair also.
susannew -- Terry! Is that what you do when I'm not around, hmmmm.....
bruce -- Patrick the belt is an excellent leverage point and is easy for most people to grab.
susannew -- I'll have to try the belt strategy...
bruce -- When i am in a restaurant and need help getting up (tight quarters or general weakness), Cindy grabs the belt and lifts (it aonly takes about 2-3 inches and I am on the way up).
terryw -- Susanne told me that a rope around my neck to pick me up by would be easier, But I don't beleive her LOL
johnm -- I'd have trouble with the BELT idea. Most of my pants now have elastic wastebands.
terryw -- Joke
susannew -- Terry: MOTF
bruce -- that brings up a question. After I eat, I am generally weaker for an hour or so. I have assumed that my energy is busy digesting. Anyone else have this experience?
terryw -- bruce, you eat a lot of turkey?
johnm -- Bruce, I use an Up-Lift Seat Assist to get me up. I can't get up from a chair by myself any more.
bruce -- Yes
terryw -- I do not have that problem.
patrick -- I stopped by a Walmart on the way to a Dr. ssappointment Thursday. I sue their electric carts so everything was OK. Than I had to use the john, and theyose carts do fit it there. So I parked and walked in an did my business. Walking out, I was feeling goosey, and almost made it back to the cart when I fell. I was really a spectacle for the shoppers. Then the manager got on the radio, and soon comes two stock boys, Hulk and Bulk. They picked me up like a pllet of kitty litter and dropped me into the cart. I guess I need a couple of those type guys to follow me around... :-)
terryw -- turkey makes you tired
bruce -- The Up-Lift is great. I use it in my LazyBoy - otherwise I couldn't get out of it any more.
daveg -- I crawl along the floor (on all fours) until I find something I can ramp up, or pull myself up on. I did this in a parking arcade the other day. Goodness know what the security cameras picked up!
susannew -- How does the uplift work? What does it cost? Where did you get it?
patrick -- Turkey has a natural chemical in it that affects serotonin reuptake or something. It is a natural sleeling remedy.
susannew -- We are working with a gentleman who has KD who has designed a small, lightweight scooter that is collapsable and can fit in the trunk of the car. We will be shortly announcing how to purchase one and part of the proceeds will go to the KDA.
terryw -- Dave I do the same. I look like a baby just learning to stand.
speedy -- what is the up lift?
john-c. -- Sorry, I got blown off again. Back to the Beach as well as everywhere: use a cane! It makes you look extinguished.
bruce -- John turned me onto the UpLift Assist. The are covered by your insurance normally. cost - about $140-200. Shop around on the web and the price is all over the place. Go for the EZFoam option - it is better. My brother also uses one 9at my recommendation) and he likes it.
terryw -- extinguished?
speedy -- be sure to let me know susanne
johnm -- Susanne, You can go to and find out about it and where you can get one. I think they are about $150. They have a cylinder that is compressed when you sit down and give a boost when pressure is taken off. I have three of them.
john-c. -- OK, distinguished.
susannew -- Speedy; about the scooter? YOu are on our mailing list aren't you?
patrick -- Dave, I've done that a lot lately. However, I had some falls that took most of the skin of my knees. I have little blood trails around my house. If I get murdered, it will drive the crime scene investigator crazy!
terryw -- I need an uplift for my stairs
terryw -- LOL Patrick
bruce -- The nice thing about the assist is that it is portable. I take it with me often.
speedy -- yes
susannew -- Has anyone installed a lift like a mini-elevator in their home? Our stairs are free-standing in the middle of the room, so we cannot out fit with a lift. But I'd like to put a "mini-elevator" (like amusement parks sometimes have) - that look like a closet, you get in and it lifts you straight up...) Looking for cost and complication information!
terryw -- John-c,, can I call you tomorrow morning sometime
speedy -- yes susanne I have a stair glide
susannew -- How does the stair glide work? How much did it cost?
johnm -- Looks like most of us still have a sense of humor.
susannew -- Its really getting to be time that Terry and I install something or look to move to a one-story. I worry when I travel for work that he might fall while on the stairs.
john-c. -- OK: Ill be here 'til 11:30 my time, then Church & Hospital.
terryw -- ok
speedy -- I boutht it used onkly gave $250.00 sit in a seat mash a button go from top to bottom
john-c. -- Susanne: I put one of them in for my Mom about 12 yrs ago. An east install. I'll tell Terry about it tomorrow.
terryw -- I am feeling much better now I have been sick for the past week with a bad chest virus. Lost my entire voice for 3-4 days
john-c. -- EASY installation
bruce -- Susanne, I think the rope around the neck might be less expensive than the elevator. Give that a try first.
susannew -- JohnC: Could you briefly share information about it here so others can learn also... this transcript is read by others who are not here right now.
john-c. -- LOL
susannew -- Bruce: : ) :) :) :) :) :) :) :)
patrick -- Bruse, I was thinking about stacking six or eight Up-Lifts, and Terry could shoot himself upstairs.
bruce -- I won't mention that option to Cindy. She might take me up on it.
terryw -- How about one of those barn hay hoists from the loft. I can sit in the basket and she can hoist me up?
john-c. -- Sure: It is 4' x 5' and I put it in a "pocket" I cut into a side porch.
susannew -- He could always just "click his heels"!
johnm -- We got away from the stairs by retiring, moving to a warmer climate, and a smaller home without stairs.
susannew -- Johnc: That's what i'm thinking of doing. WE have a window in the family room that we could knock out and it could be built onto the side of the house take him up to the master bath - would just pull out the tub... we never use it anyways! (Ok, for you jokers, yes we take SHOWERS!)
terryw -- Its been real hot here and my legs feel great
bruce -- That is our plans - move south and into a ranch. If we change our minds about the move - we need some type of stair climber.
susannew -- Speedy: Thanks for sharing. Good to know!
patrick -- Does anyone know of an architect who specializes in Mobius construction? That where everything leads down.
john-c. -- Lift is a 5' one, and an Elac motor drives a "scissors jack" Heel clikking only works in Kansas (Patrick's venue).
john-c. -- That's electric motor.
johnm -- Terry, the barn hay hoist requires a tractor out in the yard to pull it up. The tongs would probably hurt a little also.
susannew -- Johnc: What was the cost of something like that?
terryw -- Lets all pool our money and buy a big ranch where it is warm, we can call it The KD Dude ranch
john-c. -- Installation today with carpentry/Elec/concrete, etc would be in the $4-6000 range.
susannew -- I can start saving now! Thanks John. THat's not so bad really when you consider the cost of electric wheelchairs.
patrick -- Terry, good idea. Somewhere it never snows or ices, is flat, and stairs are illegal...
john-c. -- Best thing about it was that Mom didn't want the world to see a 30' zig-zag ramp, and since this was an existing porch, it was covered & out of the snow/rain.
johnm -- Terry, we couldn't do that as then there wouldn't be anyone to help us up when we fell.
terryw -- the dudettes
susannew -- Sure there would! I'd be there!
john-c. -- I'll send the sand info to anyone who sends me an email: This email address is being protected from spambots. You need JavaScript enabled to view it.
susannew -- We keep talking of purchasing a few acres and getting out of the rat race (Los Angeles area.) Just haven't been able to convince myself just yet.
terryw -- they could drag us around on carts behind horses, or we all get golf carts
john-c. -- You guys could just move into the Coakley Dude Ranch, here at the log cabin.
terryw -- john, how many acres you have?
bruce -- We have could wheel chair and scooter races. Maybe hire Tim the Tool Man to "soup" them up.
patrick -- How about a harness we put on that has a medium-large helium balloon attached. The balloon would be sized to just counteract our weight.
susannew -- Trouble is, no where else has our weather, no mosquitoes, no humidity, no snow, hardly any rain, no hurricanes, no tornadoes...
speedy -- got to go every body have a great (fall) imean a great day. See You
terryw -- QUAKES
speedy -- {goodbye speedy}
susannew -- Take care Speedy. Thanks for joining us!
terryw -- bye
bruce -- Bye Speedy
patrick -- Bye, Speedy
susannew -- Earth quakes - those little things... they are like free amusement-park rides!
john-c. -- 2 3/4: more than enough to take care of. I just bought another "work saving device" that I'll be writing about soon.
johnm -- Looks like we are going to have three of us here in Sun City Center, Florida.
susannew -- Yes, John, time for another edition of "Laughter..."!
terryw -- Wow john,, thats great
john-c. -- I've put on some weight, now there are east coast quakes when I fall!
bruce -- I am also out of here. I enjoyed the chat. Everyone seems to be in good spirits. Take care and stay healthy.....
bruce -- {goodbye bruce}
susannew -- Its nice when you are close enough to get together with others who have KD. We met with quite a few here in the Southland and when I travel I usually meet up with someone... We've planned and met KD'rs in Las Vegas also.
terryw -- 3 months until the meeting. Its getting close now
johnm -- Mike is joining us for lunch tomorrow.
john-c. -- It'll be good to see you all there.
susannew -- Yes, please get your registrations in by August 15, 2002 to get the early bird rate!
john-c. -- Bye folks.
daveg -- Midnight is approaching for us so we're off to bed, thanks for the chat everyone, don't let those frustrations get you down or get on top of you!
susannew -- We now have about 15 KD'rs and their family/significant others registered already.
terryw -- bye john
terryw -- bye dave
john-c. -- {goodbye john-c.}
susannew -- Have another 25-30 who have emailed that they want to come, but we have not received their official registrations just yet.
susannew -- I'm going to head out also. Take care everyone!
susannew -- {goodbye susannew}
terryw -- {welcome terryw}
patrick -- Tchuss
patrick -- {goodbye patrick}
daveg -- {goodbye daveg}
terryw -- {goodbye terryw}
johnm -- Bye all.
johnm -- {goodbye johnm}



End Chat