Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript


Topics: SBMA and Career (Current & Options)

Chat Participants:

  • terryw
  • gryphon
  • rol
  • bob
  • llb
  • kdfl

Begin Chat

terryw -- {welcome terryw}

rol -- {welcome rol}

gryphon -- {welcome gryphon}

terryw -- hi ROL

kdfl -- {welcome kdfl}

gryphon -- Hello, my name is Patrick Griffin. You can call me Patrick, or you can call me Pat, whichever you prefer.

terryw -- We are the 1st two here,, I was getting kind of lonely

kdfl -- Hi Pat, I'm John Mengel

terryw -- Hi Patrick

terryw -- Hello John, glad you could make it

gryphon -- We're still a bit early. Rol, may I ask your first name?

gryphon -- Hi John and Terry.

terryw -- Rolf, is that you ???

kdfl -- Last chat about family problems was very interesting to me. I was glad to see others having the same problems we are.

terryw -- Glad you liked it.

terryw -- I am at the keyboard today, Susanne is away on business so bear with my fingers LOL

terryw -- She types like 100 words per minute LOL

gryphon -- I think we all experience that feeling: first we are all alone, with no one to relate to, and then we meet others with KD, and we find out we have similar challenges and issues.

terryw -- I know that sound bad but its nice having others with this that really understand what it feel like and what we are going through. It helps a lot

kdfl -- Typing is much easier than trying to write though. I have a little program called TurboNote that lets me type my sticky notes.

gryphon -- Check that - my handwriting was never much good, now after the first lines, it almost indecipherable.

rol -- {goodbye rol}

terryw -- My writing is terrible, I have not figured out how to get around that problem. like when I have to go to doctors and fill out forms it is almost impossible

llb -- {welcome llb}

rol -- {welcome rol}

kdfl -- I usually take my wife along to do the form filling. If I print, it is pretty legible.

gryphon -- I find it helps to 1) have a good writing surface that is supported (not try to fill out a form on a clipboard in my lap; 2) to print in all capitals; and 3) to rest and massage my hand often.

terryw -- I would like to ask a ? to anyone who may know the law. Most of us still walk some. Lets say you go on a job interview and walk in. you get the job, then show up in a wheelchair. The job does not require physical abilities. can they change their mind on hiring you?

gryphon -- According to my knowledge of the ADA, they cannot use physical limitations as a reason NOT to hire you unless the job description specifically requires one to lift, stand, walk, etc.

kdfl -- That is a good one. I guess since I don't plan on going back to work, I never thought about it.

gryphon -- The big problem is that the employer could just cite some other bogus reason not to hire you. Then, if you wanted to challenge it, you'd have to get a lawyer - $$$

kdfl -- I really think it is something that should be discussed during the interview. Companies don't like surprises.

gryphon -- It is easier to keep a job. The law says that an employer must make reasonable accommodations for your disability.

terryw -- I always wondered that. Because even though we are protected by law.  You know as well as I that if it came down to a disabled applicant against an healthy applicant with the same skill level they would choose the healthy. So if you walk in they would not know because they are not allowed to ask if you have a disability by law.

gryphon -- I think it depends on the employer. Some are honest and some are not. If your skills are such that mobility or strength are unimportant (e.g. a telemarketer), then you'd probably stand a pretty good chance.

rol -- {welcome rol}

terryw -- hi rol, it looks like rol may be having the same problem as you did Patrick in the past not being able to type. Is that correct ROL?

kdfl -- rol - Looks like you are having a little problem staying on line.

terryw -- Patrick what did you do to fix that problem

terryw -- stand by ROL Patrick may be able to help

gryphon -- I first started going on line with Internet Explorer, which I use all the time. I could get on line and input text, but it would not appear in the chat pane.

terryw -- what fixed it

gryphon -- I 'fixed' it by using Netscape Navigator. For whatever reason, it works fine. BTW, I have a Mac, plenty of RAM, the latest software versions, and a stable Internet connection.

terryw -- Sorry if you cannot chat ROL, E-mail me if this is the case and let me know what you are running on and I will report it to MDA chat Mgmt.

gryphon -- I know the AOL browser or AOL itself can pose problems for some people with some connections. With others it seems to work OK. For any Internet use with a telephone modem, make sure call waiting is turned off!

rol -- {goodbye rol}

gryphon -- Also, if you have wireless phones at home, hang them all up. One that is off the hook still maintains a signal with a base. That can cause problems with some modems.

kdfl -- Does everyone do a lot of things with their computer? I live in a community with over 2000 members in our club and do some teaching and monitoring of an open lab session a couple afternoons a week. This keeps me occupied.

terryw -- Kdfl : Ii use the PC a lot at home. with the website stuff & all the e-mails.

llb -- Has anybody been put on full disability because of the KD? My husband was put on full disability the minute the diagnosis came due to his being a farmer and truck driver it posed to great of a danger to him to do that type of work.

terryw -- I am on FULL disability now

terryw -- Ok, back to the subject of employment. Does anyone know if you are collecting SS income can you work at all up to a limited amount but not over ?

bob -- {welcome bob}

terryw -- Hi Bob

llb -- I think it is possible to work some but there is a real fine line as to what and how much. The government is real touchy on that subject.

gryphon -- I get SS disability, and the way it was explained to me that there is a $700 limit on income. However, the rules also include provisions that if I work at all, it must be different from, or greatly limited from, what my 'usual' occupation is.

terryw -- Like a greeter at wallmart LOL... i could do that

bob -- Hallo everyone

kdfl -- I have been on FULL disability of 9 years now. I couldn't get around the plant any more.

terryw -- llb, I was in a network engineer job that really presented no danger to my health. its just that I could not make it through the day any longer. got to weak & tired.

gryphon -- In addition, if I do get a job that allows me to work (such as a part time computer operator with flexible scheduling so I work only on my 'good' days) and I go over the $700 limit, my SSI will stop. But if I progress to the point where I can no longer work, I can go back on SSI.

terryw -- Patrick that's a good point. If you go back to work you can always fall back on SSI if needed easily

terryw -- We all have to do what we feel we are up to.

kdfl -- I really don't get weak and tired during the day. When I work in the lab and make house calls on computer problems I don't get to take my afternoon nap.

gryphon -- I've seen old geezer greeters at Wallmart's who are half again as old as I (I'm 51) who are in much better shape physically than me. I need THEIR help! :-)

llb -- My husband sometimes does a few things around the house to help out, but sometimes he really feels it the next day, it is like he does not know his limits yet or tries to push it a little too much since he is still able to be up and around.

terryw -- I have found that my body gets to the point of physical exhaustion very easily even though my mind is still going full blast

gryphon -- Roger that. My brain still thinks it's 25. Unfortunately, most days my body feels like 65, and then there are days it feels like 105...

kdfl -- I guess I'm pretty lucky then that I can keep going without getting overtired.

terryw -- We like to feel we are of use and worth something around the house so we tend to push it to our limits. I do it all the time and suffer the next day or so also.

terryw -- We don't want to fell like we are a burden.

gryphon -- Right. We had a big snowstorm here, and I shoveled my walk. I use a chair, shovel a little sitting down, then move the chair etc. I was dog tired last night, and this morning my back feels like I was run over by a big truck.

terryw -- Patrick,, rig up some kind of plow to an electric wheelchair, you will make a fortune LOL

gryphon -- That's not a bad idea. Thy have those little 4WD Hondas, etc. It could be cool to mount a snow blade, lawn mower, garden digger, etc. on one. Then we cold get out in the sun and get some fresh air and feel like we're contribution...

gryphon -- I meant contributing..

kdfl -- My wife sometimes keeps me from doing some of the things that I think I could be doing. She just doesn't want me doing anything that may cause me to get hurt.

kdfl -- I broke my foot and was totally kept off my feet for four months. That has really been a drag and I don't want that to happen again.

gryphon -- When one is not working a set schedule, he can always just sack out when the KD tire rols over you. If you're at the job, sleeping isn't too good of an idea. (Unless you're working as a mattress tester! ;-)

rol -- {welcome rol}

terryw -- kdfl, that good she is just trying to help and she know our pride can sometimes get us hurt.

kdfl -- I sometimes feel she trys too hard to tell me what I can and can't do.

bob -- kdfl, mf wife is the same as yours she knows that if I have a fall with KD it may take a long time to heal and I may not get back to my fitness now.

gryphon -- Well, I've been married twice. My first wife died in a car accident, and my second wanted a career instead of a family. It's been my experience that women try to tell their HEALTHY husbands what to do and not to do.

terryw -- that's a different subject for a different chat forum Patrick :) the Man chat forum on Yahoo LOL

gryphon -- However, with KD, the erosion of our physical skills can undermine our self image. The only way to prop it up is to try things, and learn your limits. Try to exceed them, but ensure you don't over-do. Learn new things, too. It's all a self-driven experience, and a spouse needs to understand that.

gryphon -- There is a big difference between encouragement (to give one courage to try, to fail, to succeed) and telling someone what to do.

terryw -- the problem I have is I take my pain medication and it acts the opposite of most people, It wires me up all day where i cant sleep so my body get to the point where it want to sleep but my mind races and wont let me. A catch 22 situation. Its very frustrating

terryw -- I am in bed by about 7-8 PM every night that's when the pain medication wears off and I can the pass out from exhaustion.

kdfl -- I am very lucky in that I have no pain at all associated with KD.

bob -- terryw, I am 6-8 pm man I'm afraid

kdfl -- I can usually make it to at least 9:30.

terryw -- I have found that a lot of the pain I have was related to the cold feet. I now wear these things called Australian Sheepskin boots that come up to just below the knee. It does wonders for the cold & pain. I am so glad I bought them.

kdfl -- I took care of the cold feet by moving to FLORIDA.

terryw -- I should move to Death Valley then. LOL

gryphon -- I've had three back operations related to an injury I got while

flying helicopters 20 years ago. Between that and the KD, my back really hurts at times.

gryphon -- I never had cold feet until my KD started kicking in. Now I wear these insulated booty things made by Hush Puppy - they work great.

gryphon -- My 2nd cousin - 20 years older and more advanced than I - has a problem with cold weather aggravating his KD BUT he never has had a problem with cold feet. Go figure...

kdfl -- I think the cold feet problem is probably why my doctor kept me off of them for so long.

terryw -- Back on the subject again, how were your employers when you all were working? did they make attempts to work with your situation?

llb -- My husband was a farmer to pretty much self employed. Our oldest son, Daniel, quit his job as a construction foreman at the age of 20 to come home and take over the farming for his dad. It was hard for my husband to give that up as that is what he really loves and has always wanted to do.

gryphon -- I was in the Army Reserve and my bosses totally supported me even bent the rules. However, I worked my butt off and made myself indispensable to them,

kdfl -- My employer was very understanding with my problem and was very helpful in getting me on disability when I could no longer get around to do my job.

rol -- {goodbye rol}

llb -- {goodbye llb}

terryw -- My employers were great to me, they made lots of changes to the building and put in power doors all over the building every time they moved my desk, and these doors cost about $15,000 each

terryw -- they also modified my desk for my electric wheelchair and made my desk cubicle about 12' long. It was 3 times the size of a normal employees.

terryw -- Does anyone swim for exercise?

gryphon -- My docs say swimming is the best exercise, but I live in a rural area with no inside pools for 70 or a 100 miles.

llb -- {welcome llb}

terryw -- I am planning on going to the ocean this summer a lot to swim for exercise. I will have to be careful though. I used to be a top notch swimmer able to handle any situation on the beach but I think that has changed. I will take it little by little when I go back out

terryw -- Sorry I went off topic myself LOL

kdfl -- My doc also says swimming is good but I always find other thing more interesting and haven't gotten on a regular regimen yet.

gryphon -- I swam competitively in high school and college. I SCUBA dove, too, which I absolutely love. I'd like to move near the ocean to swim and dive. Kansas don't get it...

kdfl -- We have an indoor pool with a lift for getting in and out.

gryphon -- OT: Has anyone visited the following Web site: ? It's entitiled dizABLED. It has great cartoons drawn by a paraplegic, who also invented all kinds of extreme sports for mobility challenged people. He is very funny and motivating. I recommend it highly.

terryw -- I will have to check that one out

terryw -- OT: = Off topic ?

terryw -- I don't know all these code words LOL

gryphon -- Speaking of chairs, has anyone ever looked at an Aeron chair or a BodyBilt chair? They are not wheelchairs, but are highly rated ergonomic task chairs. Also very expensive - $700 up. However, they are supposed to be the best things if you work at a desk or computer for a long time -  very supportive.

gryphon -- OT-Off topic- you're correct

terryw -- No I have never heard of them.

terryw -- I will look them up on-line

llb -- OT: When can we expect a schedule of the SBMA meeting in Chicago?

Need to start making plans.

terryw -- If you have not made reservations you had better fast the rooms are almost sold out I think

terryw -- Audrey is still working on the firm schedule. We will send out a e-mail when we hear from her.

llb -- I've gotten rooms, just need to know the schedule of events so we know when we need to be in Chicago, in the morning, afternoon, etc.

terryw -- We have heard that Dr. Fischbeck intends to be there to meet with us. we have contacted a few other researchers that want to come and are looking into their schedules.

terryw -- We will let you know as soon as we can, sorry for the delay

terryw -- llb: I will try to get more info from Audrey later this week for you.

llb -- Thanks Terry

terryw -- Pin her down :)

gryphon -- Everyone should also look at the Families of SMA Home Page at . They maintain the conference schedule and information there.

terryw -- If things go well this year maybe we can have our own little mini meeting someplace next year where just KD patients can meet.

llb -- That would be great Terry.

terryw -- or a KD cruise

terryw -- that would be fun

llb -- That would even be better since we have never been on one. This is a our very first SBMA conference.

terryw -- I have never been on a cruse either

gryphon -- I second a KD cruise. Just make sure the buffet is set at wheelchair height!!!

terryw -- Might be able to get more doctors & researchers to come to the cruise also. they can write off their vacation then.

kdfl -- We have not been on a cruise either but don't have any interest in one. We like Biloxi, Mississippi for gambling.

terryw -- So if there are no more questions or comments on employment lets open this up to an open forum for any questions.

kdfl -- {welcome kdfl}

gryphon -- Getting sort of back on topic, who has found the best keyboard/mouse? U use an Adesso ergonomic keyboard that really keeps my hands from tiring. I also use oa Kensington trackball instead of a mouse to reduce the hand cramps.

kdfl -- I still use a regular keyboard and mouse with no problems, although a lot of what I do is pointing and clicking.

terryw -- Has anyone tried any voice software ever?

terryw -- like Dragon ?

kdfl -- We've had several people in the club try voice software and have received mixed reviews. Some say it works fine and others can't get it to do what they want.

bob -- I have IBM via voice but I have not customized it to my voice yet and as such cannot comment on its use

gryphon -- Voice software is still an infant technology.

gryphon -- Some can understand computer commands, and some can do some text input, but they all have you either speak slowly and distinctly, and they need to 'learn' your voice.

gryphon -- They biggest advances and successes have been in medical transcription. The researchers are trying to develope systems to allow doctors to dictate their notes directly into a text document.

llb -- I am a medical transcriptionist, so I hope that are not to quick with that technology or I will be out of a job.

terryw -- How do you read those doctors writing? its worse that mine. gryphon -- That technology is still way out there. Can you imagine a computer being able to decipher a doctor's voice - worse than handwriting.

bob -- {goodbye bob}

llb -- I do my work at home, it comes over a modem, so I just have to be able to understand what they are saying, which sometimes is the most difficult. It allows me to be at home with my husband to take him to doctors and such and also be there for the kids. Very convenient.

terryw -- Our voices are not to hot either with KD

gryphon -- And how do you train a computer to recognize all those words. Let's see - "This patient has an advanced case of pneuomonoultramicroscopicconiosis."

terryw -- LOL

gryphon -- I'd would be great to be a transcriptionist in an alternative medicine clinic. "Patient has energy imbalance."

terryw -- See patrick on the comedy channel weeknights at 7PM, check your cable guide for listing LOL

terryw -- well this chat session is going to wrap up soon. Any closing statements or questions?

terryw -- Any future chat topic suggestions?

gryphon -- Rec. subject: What stretching exercises to we do? What has been prescribed? By doctor, PT, OT, etc? Are any effective? What are your personal practices?

llb -- See ya next time.

terryw -- bye llb

llb -- {goodbye llb}

terryw -- Ok we will call this chat closed until next time

terryw -- bye everyone..

kdfl -- Really like the work you are doing for KD sufferers. I get the web site out every chance I get.

terryw -- Thank you

gryphon -- Hasta luigi.

kdfl -- See ya'll in two weeks.

terryw -- {goodbye terryw}

gryphon -- Domo arigato gozaimasu.

kdfl -- {goodbye kdfl}

gryphon -- See you in a couple weeks. Good bye all. Nice chatting with y'all.

gryphon -- {goodbye gryphon}