Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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Kennedy's Disease Chat Transcript   05-21-2011

Topic:  Open Forum

Host: Terry Waite

TerryW
[b]Hello Dan
danmoore44055
good morning
TerryW
[b]how long have you been waiting in chat?
danmoore44055
litte while
TerryW
[b]we are early, more should be joining us later
danmoore44055
ok I am going to make some coffee
TerryW
[b]Where are you from?
TerryW
[b]ok
danmoore44055
cleve
TerryW
[b]ok
TerryW
[b]California here,  Near Yosemite Natl Park
danmoore44055
we have spoken by chat before I was away for a few years now I am retired
TerryW
[b]I am glad that you are back
danmoore44055
My sister is Sue Ball
TerryW
[b]How are you doing KD wise?
TerryW
[b]Hi Stan
danmoore44055
on and off
Stan
Hi Terry.
TerryW
[b]Yes, it seems with KD we have good days & bad (weaker) days
danmoore44055
lots of falls
Stan
Every day I wake up is a good day.
TerryW
[b]Are you doing too much
danmoore44055
yep
TerryW
[b]I have to look down and really watch my feet and the ground to prevent falls
danmoore44055
me to rocks are bad
TerryW
[b]If I look ahead and not watch thats when I fall
TerryW
[b]yes rocks or a slight rise in the walk path
danmoore44055
I also have neuropothy in both legs
TerryW
[b]what is that?
danmoore44055
Numbness loss of feeling
TerryW
[b]oh, ok,  that must make it worse
Stan
Loss of feeling. People with b-12 deficiency get that too.
danmoore44055
some days it no problem other days it feels like I am standing barefoot in snow
danmoore44055
like when foots asleep
Stan
I get that too. Real unsteady on my feet then.
danmoore44055
thats when I stay home and its movie day
danmoore44055
hard to do today its 75 degrees
TerryW
[b]The only time I have ever noticed that with me is when I am down on the ground with my legs in a nealing position for a bit and get up on my feet.  feels like legs went to sleep
TedA
Good morning all
TerryW
[b]Hi Ted
Stan
Morning, TedA
danmoore44055
good morning
Stan
Hi Gary
Gary_KC
Good morning. This is Gary joining in from Kansas City. It is 64 degrees with cloudy this morning.
Gary_KC
Hi Stan.
TerryW
[b]RIght now I am having a battle with something really painful.  I have a case of Shingles inside my head on the inner ear on the cranial nerve.  Hurts terrible.
TerryW
[b]this is the 3rd time in 6 months
danmoore44055
Ihad a friend with that
TerryW
[b]no external visible signs
Stan
Never heard of it occurring there, Terry
danmoore44055
thats adult chicken pox coming back right
TerryW
[b]Feels like I have a rat inside my head tring to eat its way out
TerryW
[b]Yes Dan
TerryW
[b]hard to think or do tings sometimes the pain is do intense
TerryW
[b]things
TerryW
[b]but It is starting to subside a bit now
danmoore44055
how long will it last
TedA
Terry, What is the treatment for it?
TerryW
[b]the shingles can last a couple of weeks but the pain can remain for a month up to a year
danmoore44055
thats bad
TerryW
[b]WHen it is in the head it can cause permanant deafness, loss of taste in the tounge,  peralisis of the facial muscles
TerryW
[b]Paralisis
TerryW
[b]Ahhhh spelling
TerryW
[b]Hi Stewart
TerryW
[b]Ted, they gave me Valtrex
Stan
Hi Stewart
danmoore44055
I saw video of gentleman in Strongsville Ohio he lives right by me
TedA
You know what the say - geniuses can't spell.
TerryW
[b]LOL
stewart
Hi, Good morning all
TerryW
[b]Hi Stewart
TerryW
[b]Well today is supposed to be Rapture day
TerryW
[b]nothing happening yet
danmoore44055
i heard
TerryW
[b]If it happens I am ready
danmoore44055
me too
TedA
I heard 6 pm but not sure which time zone.
TerryW
[b]I know where I am going
danmoore44055
when I was young did not give it much thought but age has a way of changing that
TerryW
[b]We got some good rain this past week which washed away a lot of the pollen.
Stan
We've had a lot of rain here too. Sunshine today. More rain tomorrow.
TerryW
[b]Stewart I was from Simi Valley until I moived up here by Yosemite
danmoore44055
going to rain here all week but not today
TerryW
[b]So much flooding back east, and all the tornado damage.  So sad
stewart
Today in Torrance we have an arm forces day parade, fly bye etc, I hope the cloud lifts
danmoore44055
thats all its been doing here rain and flood
TedA
I got a letter form DMV the other day.    Some incident was reported to them and now they want to take away my driveres license unless the doctors fill out a form.     I think someone saw me fall in the parking lot and my friend helped me up and I drove off.     True I can't walk very well but I can drive.
TerryW
[b]Tomorrow a Highschool girl we know is holding a BBQ fundraiser for the KDA as a class project
TerryW
[b]that is terrible ted
TedA
Anyone else had a similar situation?
danmoore44055
no but sounds like dmv is being unfair
TerryW
[b]Ted they give you a letter like that but I bet the person that reported you talks on the phone while driving
TerryW
[b]or texts
danmoore44055
both
TedA
True because a para can not walk and many of them drive!
TerryW
[b]I never heard of that ted
Stan
I've had slip and fall, but no issue with my license. I think each state is different in that respect. Many that can't walk have hand controls so they can drive. So, I don't see the issue.
TedA
In VA EVERYONE talks on their cell phone - it is legal - do NOT need a hands free device!
danmoore44055
I cant go 10 miles without seeing 20 people on the phone or texting
TedA
And Virginia is the 13th WORSE in US for auto accidents according to the list I saw on AARP website.
stewart
It's illegal in CA but people still do it
Gary_KC
TedA, I gave up my driver license when I can't stand up. As long as you can stand up, I think you are fine.
danmoore44055
I have a friend that just moved there I had to tell him
TerryW
[b]I have people on their phones pull right out in front of me and almost hit me and they don't even realize it happened because they are on the phone.
TerryW
[b]Can anyone here still drive a car with a clutch?
TedA
I use a bluetooth all the time so I do not have to hold the phone to my ear.    Phone is TOO heavy!    Also use head set for land line phones
danmoore44055
there is a application called DriveSafe.ly that read all text and emails out loud and responds that your driving and cant talk
TerryW
[b]I have one of those trash cans in the kitchen and I can hardly step on the foot pedal and make it lift the lid
TedA
No, automatic and even then I use cruse control as often as possible
Stan
I can as long as the pedal isn't too stiff. I can drive an Escort no problem. When I tried the Ford GT clutch, it was too stiff for me.
danmoore44055
I gave the clutch up last year
TerryW
[b]I drive with 2 feet,  one on gas the other hovers over the brake pedal
Stan
Leg gets real  tired using clutch in traffic, so I avoid cars with standard trans.
TedA
Gave up low vehicles about 8 years ago.     Van or SUV only.     The mechanic loaned me a truck for the day when he was doing work on my van as he knew I was not able to get out of low cars.
stewart
I can still drive a clutch, But I don't, In LA traffic I know after awhile it would be too much.
Stan
My daughter's Contour can be an issue sometimes. Sold my MG years ago.
TerryW
[b]I could imagine stewart
stewart
I quite often have one foot ready to push the gas pedal and the other on the brake while waiting at a stop light.
TerryW
[b]Anyone have big plans for the upcoming weekend
danmoore44055
communion party
Stan
My grand-daughter's birthday, daughter's birthday
TedA
Going to a memorial service for those  that gave all!
TerryW
[b]Does anyone have difficulty swallowing Pills,  I get pills stuck in my throat by my Larynx
danmoore44055
yep
Gary_KC
No, I don't have the plan. :-(
TerryW
[b]I now have to take the pill and get a spoonful of jellow and push the pill inside it and then swallow fast
TerryW
[b]Jello
TerryW
[b]slides right past
TedA
I use great caution when taking pills, eating, etc as I do choke sometimes
Stan
I have had trouble swallowing for a few years. Have PEG tube
danmoore44055
I sleep half sitting up to because of choking
TerryW
[b]peg tube
TerryW
[b]?
TerryW
[b]dan are you using a Bi-pap?
Stan
Feeding tube. That's how I take my meds and most food. It's coming.
TedA
Dan, do you have sleep apena or have you been tested for it?
danmoore44055
no
danmoore44055
I live alone too
TerryW
[b]stan does that tube go dow your throat?
TerryW
[b]down
Stan
In my stomach.
TerryW
[b]oh, ok
TerryW
[b]:(
danmoore44055
wow
danmoore44055
not fun
TerryW
[b]sorry dan,
TerryW
[b]dan, how old are you?
danmoore44055
little scary but i get by
TerryW
[b]49 here
danmoore44055
my ex left because she said KD was a fake illness
TerryW
[b]????what
stewart
I was going to start bitching about my aches and pains never mind, I'm 52.
TerryW
[b]People like that have Karma come back around
danmoore44055
she was tired of dealing with it she said oh well better off
danmoore44055
lol
TerryW
[b]So sorry dan,  it is better off not to have a person like that around you anyhow
TedA
Dan, Do you a way to get help if you fall or something else happens?
Stan
I'll be 59. Dan, that sounds like a lame excuse to me.
danmoore44055
yes I do
danmoore44055
I just told her goodbye
TerryW
[b]Dan,  we are here if you ever need to talk to someone.  This email address is being protected from spambots. You need JavaScript enabled to view it.
TerryW
[b]that understands
TedA
I think my KD was part of the reason my Ex left me.   But then she had lots of issues, even with HER Neice we had guardianship of!     Better without her negative
danmoore44055
thanks my brother also has KD
danmoore44055
my sister ran an add for cruise on website
TerryW
[b]on our website
danmoore44055
yes
danmoore44055
sue ball
TerryW
[b]Oh ok, I remember
Stan
I can be a real PITA. My wife has never even mentioned the thought of leaving. We all have problems. We both believe in "for better or for worse..."
danmoore44055
she watches over me
TerryW
[b]good :)
TerryW
[b]My sister told me to die and rot in my wheelchair
TerryW
[b]nice eh?
danmoore44055
wow
TerryW
[b]she is evil
Stan
I guess it takes all kinds. I've never had anyone say anything negative to me Terry.
danmoore44055
I stay away from bad people iot makes me feel better
TerryW
[b]A short time after she said that she has now been diagnosed with another type of Neuromuscular disease and was told she will be in a wheelchair within a year
TerryW
[b]Karma
danmoore44055
very true my ex is sick too
danmoore44055
and yet still smokes two packs a day
TerryW
[b]I believe in Karma,  you get what you give
danmoore44055
thats right
TerryW
[b]Well folks,  I have a busy day in front of me so I am going to have to leave you and start getting ready
danmoore44055
I am in the process of getting some type of wheelchair
Stan
I question it sometimes. I know some very good people that have been stricken with illnesses nobody should get.
danmoore44055
me to talk later have a great day
Stan
That was kind of abrupt. I have stuff to do, but I'll sit here all day if someone needs to chat.
Gary_KC
I got go too. Talk to you later, Stan. Bye.
Stan
Ok, Gary. Until next time.