Kennedy's Disease Association

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"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript


Topics: Disability Aid Devices

Chat Participants:

  • terryw
  • gryphon
  • rol
  • bobohio
  • bob
  • chuck
  • toddrallen
  • jean-s
  • llb
  • kdfl

Begin Chat

terryw -- {welcome terryw}

gryphon -- {welcome gryphon}

terryw -- Hi Patrick

gryphon -- Hi Terry. I just sent you an email with the details about that color-blindness article we discussed.

terryw -- got it

gryphon -- I'm going to go fill my coffee cup. Be back in a couple of minutes...

gryphon -- I'm back. There's no Starbucks in rural Kansas, so I take a cup of regular coffee and stir in a couple of teaspoons of cocoa mix, and pretend it is a mocha latte...

rol -- {welcome rol}

rol -- did it work today?

terryw -- hi rolf

terryw -- yes

kdfl -- {welcome kdfl}

terryw -- glad to see it works

terryw -- hi Kdfl

rol -- fine, hello terry.

terryw -- so how has everyone been ?

kdfl -- Hi all, I'm John from sunny, smoky Florida

terryw -- Smokey?

kdfl -- Yes, we have some bad fires burning in Polk county near Interstate 4

jean-s -- {welcome jean-s}

terryw -- Rain here in California :(

gryphon -- I saw in the news about the fires in Florida. Here, we've had so much snow, and then it started thawing, and now it's been raining all night. I wish I could give you some of our precipitation.

kdfl -- Boy, could we ever use some of that rain.

gryphon -- Hi Jean. Bon jour.

terryw -- Its been cold winter California wise.

rol -- Only a little snow in the middle of Germany

jean-s -- the weather is also snowy in France but in Paris it is more rare than in Kansas

kdfl -- Florida has been colder than usual up to this point too.

jean-s -- Hi everybody, it is jean from France

terryw -- Hello jean-S

gryphon -- Rolf, where in Germany do you live?

rol -- In the north of Bavaria, near Wuerzburg

gryphon -- I lived in Germany 1977-1980, when I was a brand new Lieutenant out of the university. I lived in Mainz, then in Bad Kreuznach. I've been to Wuerzburg.

terryw -- So the topic today is Disability aid devices. Does anybody have anything they would like to start with ?

kdfl -- I think I have just about all of them that can be helpful.

jean-s -- I use a cane since many years, but about the wheelchair, I am sure that is necessary to avoid too much pain. But it is very difficult for me and also for my family to see me in this mark of my handicap.

rol -- jean-s: take a electric wheelchair and enjoy the new freedom.

chuck -- {welcome chuck}

bobohio -- {welcome bobohio}

terryw -- hi chuck

terryw -- welcome bobohio

kdfl -- I used a cane for short distances before I broke my foot and had to stay off it for 4 months.

bobohio -- Hello everyone. This is my first chat.

toddrallen -- {welcome toddrallen}

toddrallen -- hi folks

terryw -- I love my electric wheelchair, I use it to zip all around places where I know there will be a lot of walking or standing.

gryphon -- I use a cane (really a walking stick, because I find the extra length is much better) when I walk. When I shop, I go to stores that have a wheelchair or electric cart for disabled shoppers' use. I have a wheelchair of my own, that I use if I'm going somewhere where I'm unsure of the accommodations.

kdfl -- I used a three wheel walker around the house before but now I walk behind my wheelchair around the house. It makes my wife more comfortable

terryw -- It was hard to take that step at first to get into it, not knowing what others would think, but once in it made no difference to anyone. if fact people in public treated me better :)

toddrallen -- My grandfather had an electric wheelchair/scooter with 3 small wheels that he loved dearly.

toddrallen -- The problem with my grandfathers scooter (in my eyes) is it only went 5 mph and had no suspension.

kdfl -- I also have a three wheel scooter that I use when there is a lot of walking to be done. I'm using it more now also.

bobohio -- Do people use their scooters much in their homes or more for outside the home?

rol -- I use it more outside

kdfl -- I use my scooter outside the home.

chuck -- I use my scooter outside home and after my bad fall a month ago, I now use a cane in house.

jean-s -- rol : I think so that the electric wheelchair is the better solution.

terryw -- My wheelchair is very fast, in fact last year I had a drag race against some of the kids at the SMA conference and I beat them :)

gryphon -- If you are considering getting a wheelchair, you may want to get more information. I found a soft cover book very informative. It is titled "Choosing a Wheelchair: A Guide for Optimal Independence", by Gary Karp, published by O'Reilly & Associates, Inc., 1998, ISBN: 1-56592-411-8.  Its list price is $9.95 US, although I bought at a discount via Amazon. I recommend it highly. It covers a lot from choosing a chair, manual or electric, through maintenance and games.

toddrallen -- Thanks pat, I just cut & pasted your reference.

toddrallen -- Does anybody know of a scooter that is faster / more capable, but still able to be ridden inside stores & on sidewalks, etc.

terryw -- yes Todd, Another KD individual named Paul has found a good one that works for him. Its about $700, he is getting me the name and contact information. e-mail me for the info.

kdfl -- I guess the definition of fast is relative, my wife can't keep up with me when we are shopping.

bobohio -- I'm in the process of getting a scooter and a

bobohio -- I'm also trying to get a hoist put into my mini-van. What a hassle with insurances!

kdfl -- I have had no problem with getting the hoist into my minivan.

terryw -- Bob, I fought with Insurance over that and lost, had to buy it myself.

bobohio -- terryw - I think I've found that the Ohio bureau of vocational rehab will help pay for it. It's hard finding what organizations can help with funding.

kdfl -- I had to pay part of my initial hoist installation but Ford has a Mobility Program that gave me $750.

terryw -- That's great, my lift for the back of my Toyota 4Runner cost me $1500

kdfl -- I just found out recently that the MDA helps with a lot of these Aids.

bobohio -- The MDA has told me that "oequfficially" they can only help with things like scooters but ... if the vendor sends them an invoice marked just as "equipment" they can help with other things. I hate to play those kind of games.

gryphon -- That book I mentioned has a chapter on paying for a chair. It discusses not only regular means, but how to win if an insurer or HMO doesn't want to pay for what you want and/or need.

terryw -- Here is a link to a lift manufacturer for wheelchairs 7 scooters to attach to the back of cars & trucks,, that's what I have.

terryw -- & scooters I mean

terryw -- If you are registered with the MDA they ill pay up to $300 in wheelchair maintenance per year.

jean-s -- Does someone use an electric bike to make travel in the country ?

bob -- {welcome bob}

toddrallen -- jean-s, yes, there are many electric bike manufacturers. There is an internet e-mail newsgroup for power assisted bicycles that I follow. I can look up the address for you if you want.

jean-s -- thank you Todd, have you yourself use electric bike ?

gryphon -- Jean, I've seen advertised some very small motors that one can mount on a regular bike.

toddrallen -- is a site with info for electric bikes.

kdfl -- I would need a three wheel electric bike since I don't trust my legs too far these days.

toddrallen -- jean-s, I have a stand up electric scooter, but am currently trying to find an electric power add-on pack for my recumbent bicycle. There are several, but I haven't chosen yet. New designs keep coming out too.

jean-s -- OK Todd, electric bike is maybe a complementary solution with the electric wheelchair (in shopping area). The bike is more convenient to ride with my wife I think !

gryphon -- I want to get one of those four-wheel mini-ATVs and modify it into a go-anywhere wheelchair. Has anyone seen anything like that?

gryphon -- Jean, I used to ride both racing and dirt bikes, before my legs got weak. My problem was when I stopped, putting out my leg to hold the bike up didn't work and my leg buckled. Also, swinging my leg over the bike became impossible.

gryphon -- However, there are three wheeled bicycles that would help that problem. However, I'm not up to speed on those. I'll have to do a little research.

bob -- over here in the UK I have an electric trike I purchased it from this company also sells add on motor kits for standard bikes as well as wheelchairs.

toddrallen -- I'm planning on build a crane/winch to plug into the receiver hitch on the back of my station wagon for lifting heavy objects inside or onto the roof. Does anybody know of a commercial product like this.

terryw -- todd, check

gryphon -- I installed a Class II hitch on my car, and the VA (my "HMO") bought me a manual wheelchair carrier that plugs into the hitch. I wanted a Class III hitch, as it is more versatile, but the VA would pay for one as a Class II is all I needed...

gryphon -- When I use an electric cart in a store, it becomes important that it is very maneuverable. Otherwise, I can't get through some aisles, or turn at the end.

terryw -- If I can't get through an Isle I just knock it over LOL

terryw -- They don't give us enough space.

jean-s -- Patrick : I know that, do you think that is very easy to use it ?

kdfl -- I also have AFO's for both of my legs. They give me a little more confidence when walking.

toddrallen -- If you can try a recumbent (reclined bicycle with a lawn chair type seat). It got to painful to ride a standard bike, but now I can go for hours.

jean-s -- Todd, what is a recumbent cycle ?

terryw -- Todd is that reclining bike?

jean-s -- oops ! I don't read enough quickly !

terryw -- me either LOL

toddrallen -- A recumbent bike has a reclined seating position with your

feet in front and a large comfortable seat with back support.

terryw -- Are your legs strong enough still to pedal it ?

jean-s -- good question terry ! with a regular bike I cannot pedal more than few minutes

gryphon -- A recumbent bile allows the rider to lean back, distributing his/her weight over a greater area than a derriere.

jean-s -- OK Todd but we haven't this kind of bike in France

toddrallen -- Yes, it takes very little strength to pedal at about 10mph.

I can go for hours on flat ground. Hills though are a problem for me.

That's where a small electric motor could be very handy.

terryw -- If I was to pedal on a bike and then try to stand up my legs would go to rubber and give out under me.

toddrallen -- There are dozens of recumbent bike styles. It is more important to find a good body fit than on a standard bike.

gryphon -- Terry, before I was diagnosed, I had that happen to me a lot. I thought I was just getting soft and needed to bike even more...didn't work! :-)

toddrallen -- I have had that problem. Once after a long ride I tried to get off the bike and collapsed. I felt fine on the bike, but I couldn't walk. It took a few minutes to get enough strength to be able to walk again. But I had just ridden 100 miles..

jean-s -- Terry, that is exactly the same for me !

kdfl -- I also enjoyed biking but going more miles didn't strengthen my leg either.

kdfl -- I didn't want anything hanging out the back of my car in bad weather so I got a minivan.

terryw -- I use a patio chair cover to cover my wheelchair when its on the

back of my 4Runner, it works great in bad weather. I did not want to have to buy a van.

gryphon -- The VA stiffed me on a wheelchair cover - their rules don't allow it - therefore I had to make a makeshift cover too.

jean-s -- Patrick, what is VA ?

gryphon -- Jean, the VA is the Veterans' Administration. In the US, if you got hurt while on duty in the military, they will provide care for you. I hurt my back while flying helicopters 20 years ago, and have since had three operations.

jean-s -- OK, thank you Patrick

gryphon -- Now, I have a lot of arthritis, pain, etc. in my back. Before my third operation, they discovered I had KD. It is impossible to separate the KD from the back trauma, so the VA medical system provides my care since my first problems happened when I was in the Army.

gryphon -- In many ways I am fortunate, and I thank God - the VA gives me free medical care and medicine, but they have so many rules, it's hard to get things done, just like a cheap HMO.

gryphon -- kdfl- What's your first name? Mine is Patrick

kdfl -- kdfl's first name is John, Patrick

bobohio -- Has anyone installed a power lift in their vehicles instead of a hoist? The lifts are more expensive but I wonder if I'm going to be able to handle the hoist as I get weaker. I'm 48 now.

terryw -- Yes Bob, check these lifts out they are great.

terryw -- BobOhio, My power lift cost $1500

terryw -- I got the deluxe model with the swing away arm so I can still get in the back of the vehicle.

toddrallen -- terryw, do you drive with the lift attached to the car. What if you get rear ended? Would the lift be easily damaged?

terryw -- Yes I drive with it permanently attached, its too heavy for me to take on & off by myself. And yes if you get rear ended its going to be messed up.

bobohio -- Terry - sorry if I'm dense but swing away arm sounds like a hoist rather than a lift. I think of a lift as a platform that gets raised up and down. I think of a hoist as something with a hook. Which do you have? I'm told a hoist installed is about $2400.

terryw -- BobOhio, the lift goes in the receiver port on the back, it lifts a platform straight up. but if you need to get in the back of the vehicle for something the requires the tailgate to open, the whole mechanism swings to the side for access.

terryw -- take a look at that site it has pictures of it

jean-s -- In France, Insurance pays for electric chair but not for lift system car !

toddrallen -- I've seen small 12v electric winches for $100-$200 dollars.

I would think a crane arm for using it off a receiver hitch should be able to be made or perhaps bought for only a couple hundred more.

bobohio -- Thanks. I'll do that. I have a lot of questions about this because I just bought my mini-van that I was leasing and am ready to get a scooter and am trying to figure out the best/cheapest way to transport the scooter.

terryw -- BobOhio, Those lifts are high quality. I highly recommend them

gryphon -- If someone decides to buy a van and lift system, often they can be purchased used from someone who no longer needs them. It's sad, but I'm referring to ALS/MND (Lou Gehrig's Disease) patients. When the loved one dies, the family advertises to sell chairs, lifts, vans, etc. in the local and national ALS newsletters and email bulletin boards.

gryphon -- Does anyone travel by commercial carrier with their manual or electric chair? I received permission to share an article about traveling with a power wheelchair, especially problems at airports. It is chock full of practical and useful tips. Email me at This email address is being protected from spambots. You need JavaScript enabled to view it. if you want me to send you a copy. We'll also add it to the KDA Web site.

terryw -- I have traveled bit both manual & electric.. its a royal pain.

kdfl -- Does anyone else use any type of ankle or leg braces to stabilize their ankles?

toddrallen -- I use ankle braces and they are absolutely fantastic. I wouldn't be walking today without them.

bobohio -- I'd love to find something to give support to my ankles.

jean-s -- John : doctors prescribe ankle stabilization system but I don't use it because I find that is very uncomfortable

bobohio -- Are these ankle braces made out of metal (Forrest Gump stuff) or plastic?

toddrallen -- The braces I wear are lace ups made of canvas with pockets on each side for flat plastic stiffeners. I can wear it inside my sneakers (not dress shoes) and it is quite comfortable. I can even jog a bit while wearing them.

kdfl -- I am using what are called AFOs (Ankle, Foot, Orthotic) They are not uncomfortable for me and give me more confidence.

gryphon -- John, when I was more mobile, a few years ago, I didn't need a cane to walk. However, I found myself twisting or spraining my ankles, a lot, especially my right ankle. I never used to have problems like that when I was younger. A doctor prescribed an ankle brace, and the prosthetics shop made it for me. However, it was uncomfortable to use and

so I tended not to wear it.

bob -- toddrallen - could you explain what the ankle braces are please

jean-s -- bob : I think they are in plastic

toddrallen -- My problem was that I would sprain my ankles daily by stepping down with my foot twisted. My foot would roll to the inside,  injuring the outside of my ankle.

kdfl -- My AFOs are plastic and have a Velcro strap that goes around my leg.

bob -- thanks

gryphon -- Mine was a long plastic brace, molded to my heel, ankle and calf. It fit behind my leg, and under my foot, and was held on with elastic and Velcro straps.

jean-s -- ankle brace are support to avoid your foot go down and is the cause of your falling

bobohio -- kdfl - they sound like air casts that are used when you break a leg or ankle. Or are they something else?

kdfl -- Bob, I don't quite know what you mean by air casts but mine were by prescription.

toddrallen -- I tried the drugstore neoprene/elastic braces but they didn't give enough support and I found they impeded my already poor circulation to my feet.

gryphon -- My brace was very supportive, since I had pretty much destroyed the ligaments in my right ankle from repeated sprains. Now, since I walk very carefully and on my heels (since my legs are so weak0, and use a stick, I don't have a problem with my ankles anymore.

bobohio -- gryphon - Did you get yours through a doctor's prescription or just over the counter?

toddrallen -- A physician at an ALS clinic recommended my braces. She explained that the ankle twist is in large part a sensory problem. The braces needs to let you 'feel' the orientation of your ankle/foot so that you don't step down on it with your foot already twisted.

jean-s -- Todd : do you use one or two ankle braces ?

toddrallen -- I always wear the brace on my right ankle. I use my left ankle brace only when doing demanding activities like hang gliding.

kdfl -- I use two of the AFOs now but only used one for quite some time.

bobohio -- Are the doctors at the MDA clinics a good resource for ankle/leg braces?

kdfl -- MDA Clinic is a good place to get the prescription.

gryphon -- Todd, that's what a doctor told me. Our feet (and body) give the brain "proprioperceptive feedback" which tells it our body orientation. When neurons get damage, we lose that feedback, and hence sprains, loss of balance, etc.

gryphon -- I don't know about everyone, but I've had some spectacular falls, and incidents using wheel chairs. Afterwards, I see the humor in them. That's how I cope. Does anyone have any funny stories about getting around with canes or chairs?

kdfl -- How is everyone doing getting off the toilet after doing their job?

bobohio -- kdfl - I'm having a big problem with that.

gryphon -- John, I have a walker (four legged aluminum thing) next to the toilet, and a cabinet on the other side. I use them to pull myself to my feet.

terryw -- me also, I have to press one hand on the toilet seat YUK

kdfl -- I got one of those risers that fit on the pot and it has helped me greatly. Public restrooms are a real hassle also.

terryw -- I May need a rail on the wall soon

bobohio -- I mentioned the Ohio bureau of vocational rehab before. They are supposed to help disabled get a job or keep a job. They sent one out to my house and said they might be willing to pay for and install a raised seat and bars to pull myself up. I think every state has something like the Ohio bureau. Suggest people look into them.

gryphon -- I'm sure I can find plans on how to modify a bathroom to accommodate us. I'll find something and post it to the KDA site. You can also email me directly ( This email address is being protected from spambots. You need JavaScript enabled to view it. ) for the info.

bobohio -- I'm also having trouble not falling while taking showers. Raising my arms to wash my hair is getting tougher too. I'm exhausted by the time I'm done.

terryw -- BobOhio, They have those little benches for showers and you can install one of those bars for the shower head that moves up & down.

jean-s -- bob : I put a kind of chair in my showers to avoid sliding and bad falling

kdfl -- Most of those benches are not high enough and once we sit down we can't get back up.

kdfl -- Since breaking my foot, my wife has been helping me bathe which causes less worry for her.

toddrallen -- Instead of a bench, I'd like to just have a small padded arm to semi-sit/lean against while still on my feet in the shower.

gryphon -- I use a shower chair in my bathtub for showers. I also got a shower head device (I think it is made by Sunbeam) that has a flexible tube about 15 inches long so you can adjust the height, angle, etc. very easily. The shower head itself also adjust for different kinds of spray.  It is not designed for the disabled community, but I find that it works

just great.

toddrallen -- Does anybody use a knee brace? I've injured my knees and they have a tendency to over flex and bend backwards slightly. It can be very painful.

jean-s -- Todd : I think over flex of knee is necessary to stay without falling but it is very painful

bob -- must go now - bye everyone thanks for the very informative chat - it appears we are crossing the same bridges and coming to the same solutions

terryw -- bye bob

bob -- {goodbye bob}

gryphon -- For a lighter look at wheelchairs, visit "dizABLED" at It is a site authored by a paraplegic who refuses to let his inability to walk interfere with his life. He participates in extreme sports, and crashes a lot. He has a great sense of humor. And he draws a great cartoon strip that goes to the heart of all our challenges, and make

them seem funny. He always makes me smile.

terryw -- Does anyone have Hamstring or groin pain when overdoing it or hyper extending a leg?

jean-s -- terry : I have pain at the rear of my knees

gryphon -- A little off the subject, but I wanted to raise this question at the chat. Does anyone with KD experience odd emotions? For example, have you noticed a tendency to tear up or cry during emotional TV scenes (and you never used to do it before)? Some other KD contacts have mentioned it to me, and it is an issue in the ALS community.

terryw -- yes in deed

terryw -- The emotions are due to higher levels of Estrogen found in KD patients

terryw -- We have KD PMS LOL

toddrallen -- gryphon, I definitely have that problem. I also have hay fever which makes it worse. I'm not sure how much is hay fever and how much is mental/emotional.

jean-s -- Patrick : I don't find this for myself (not more than later)

terryw -- I was always called a wimp by my brothers because I would cry when I was a kid, and my whole life I have been more emotional.

terryw -- We will be adding more general life tips to the website at the KDA site.

jean-s -- I follow a testosterone treatment, may be it can have a relation with this problem?

jean-s -- relation

gryphon -- I think we'll add that question to our KD questionnaire. It could be related to androgen insensitivity, or it might be another bulbar symptom.

terryw -- Does VERY hot water make you all feel better ??

terryw -- It does Me

toddrallen -- Terryw, yes, I very much like HOT showers and baths.

terryw -- Hot water does wonders !!

kdfl -- My wife is always telling me that I can stand hotter water than she can.

terryw -- KDFL same for me

terryw -- I keep my Spa at 103 degrees, I would like it hotter but it burns the wife.

gryphon -- Hot water feels good on my sore muscles, but I tend to prefer just a warm shower.

bobohio -- Terry - One thought for a future chat. All of this talk about falling and braces has been complicated for me because I'm carrying more weight around nowadays. Could we have a chat sometime about weight gain control?

terryw -- Yes sure Bobohio

jean-s -- bob : I think weight is very important, I survey continuously my weight to avoid increasing

gryphon -- I used to run 5 to 10 miles a day. When I couldn't run, I walked 4 - 5 miles a day. My capacity gradually lessened. Now I can't walk much at all. My waistline increased as my ability to exercise decreased.

chuck -- I have a weight loss problem due to loss of muscle. My brother is also the same.

terryw -- My legs are bone thin

chuck -- So are mine - arms also.

bobohio -- Terry - Not from me. Thanks. These are very helpful.

jean-s -- my legs too, terry

terryw -- Stomach is still big LOL. I look like an olive on a toothpick.

kdfl -- My legs haven't lost much bulk at all.

terryw -- you are lucky

terryw -- Gee maybe I should get Leg Lipo injections

toddrallen -- My lower calves look like chicken legs, but my upper calves look like schwarzennegers.

gryphon -- KD has a symptom called calf hypertrophy. Instead of getting smaller, they remain the same or get larger. According to my doctor, this is caused by fatty infiltration of the calf muscles.

terryw -- My Calves are rock hard

toddrallen -- It's a shame that there isn't a symptom that gives muscle infiltration of the fat..

terryw -- Well its almost time for the chat to end,, any last topics?

gryphon -- Check out the dizabled Web site. It will make you smile!!!

jean-s -- I have to go, thank you every body and read you next time, take care!

terryw -- bye

gryphon -- Au revoir, Jean!

terryw -- chat will auto end in 7 min

chuck -- Bye

rol -- bye

bobohio -- Good bye everyone. Thanks.

terryw -- I think this chat went pretty well, what do you all think?

kdfl -- It's helpful to see that most of us have a lot of the same problems and then some have problems worse than ours.

jean-s -- {goodbye jean-s}

toddrallen -- I enjoyed it. Thanks Terry.

gryphon -- Please let us know what chat topics you'd like in the future. Also, next time let's discuss having a special chat at another time so we can include those in other time zones.

terryw -- OK, Goodbye all

bobohio -- {goodbye bobohio}

kdfl -- I think the chat went very well and I'll try to get it in order as quick as possible.

gryphon -- Try to read "Choosing a Wheelchair". It's got a lot of good info.

toddrallen -- {goodbye toddrallen}

terryw -- thanks Kdfl

gryphon -- We never discussed jet packs... ;-)

rol -- {goodbye rol}

kdfl -- {goodbye kdfl}

terryw -- Bye all

terryw -- {goodbye terryw}

gryphon -- Adios from Oz

gryphon -- {goodbye gryphon}

jean-s -- {welcome jean-s}

jean-s -- terry, just one thing I forgot, tomorrow we have the first

meeting with french KD !