Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"... almost all of the nurses and doctors did not know about Kennedy's Disease. I referred them here. I want to thank the creators of this website."

Archives - 2015 and Older Transcripts

Topic:  Open Forum

Guest:  None

Host:  Terry Waite

 

kirkaldy
hello everyone
TerryW
[b]Hello
TerryW
[b]we are earlybirds
kirkaldy
hi Terry
kirkaldy
yep  its my first sessiin
TerryW
[b]It's been a few months since I have hosted a chat
TerryW
[b]where are you from?
kirkaldy
From Michigan, metro detroit area.  How about you?
TerryW
[b]California,  Near Yosemite Natl Park
kirkaldy
Thats cool.   Always wanted to go to California
TerryW
[b]I am glad you joined the chat today.
TerryW
[b]more should join the chat room soon.
TerryW
[b]Do you have Kennedy's?  if so how long ago were you diagnosed
TerryW
[b]You don't need to answer that if you want to keep it private
kirkaldy
No problem.  I was diagnosed last April.  I'm 32 years old.
TerryW
[b]that was about when my symptoms started showing up.  I am 51
kirkaldy
I've had systoms for a few years before that and finally went to the doctor to see what was going on.  My original diagnosis was ALS, but this is better.
TerryW
[b]yes,  Many of our members were first told they have ALS, then re-diagnosed
TerryW
[b]Helo Carofer
kirkaldy
Hello
carofer
good morning
TerryW
[b]Great weather here in most of Calif this weekend
carofer
yup i am in california too
carofer
welcome to our newest member
TerryW
[b]Yep, at the coast
kirkaldy
Thanks.
TerryW
[b]Kirk,  do you have any questions for us>
TerryW
[b]Hi Gary
carofer
i worked in farmington hills for several years
Gary_KC
Good morning. This is Gary. We have over 1 feet snow in mid west.
TerryW
[b]not sure where that is?
kirkaldy
Not right now.  Thanks.
TerryW
[b]Gary we had that a couple of weeks ago.
carofer
that is right near detroit, a few miles north
kirkaldy
Farmington Hills Michigan?  We're in Macomb
TerryW
[b]oh, ok
kirkaldy
It's about 40 minutes away from where we live.
carofer
yes, michigan. macomb sounds familiar, but  i don't know it
TerryW
[b]Gary how are you doing?  still getting around ok?
Gary_KC
Terry, I fine thank you.
kirkaldy
Hi Ron.
TerryW
[b]Hello Ron
Ron M
Hello Terry
TerryW
[b]Kind of quite today in hee
Ron M
Hello Kirk
TerryW
[b]quiet
carofer
any news on the medical front?
TerryW
[b]Have not heard much new,  I have been out of the loop for a while.  Personal issues.
carofer
me too. i am selling my house because it has too many stairs.
TerryW
[b]I hear that
Gary_KC
I have not heard any news either.
carofer
i want to get a flat one-story and a smaller house
kirkaldy
Having been diagnosed last year, for the most part I try to stay postive and do the best I can to be positive, and once in a while for it bothers me thinking about the future.  But one day at a time.
TerryW
[b]Yes Kirk,  are you showing many symptoms?
kirkaldy
We bought a house last year, before my diagnosis, and wish we had gotten a ranch, but our bedroom is on the first floor.
carofer
kirkaldy, i am 64 and still walking with some assistance (a cane or sometimes a walker).
Ron M
That is how I take. One day at a time
kirkaldy
Thanks
kirkaldy
Looks like there was a problem with the chat system.
Ron M
I never experienced that. Appears the server crashed
kirkaldy
You can blame it on me (the new guy to the chat) lol
Ron M
Ok, but I don't thingk you had your hand in it.
Ron M
If I may ask, how old are you
kirkaldy
Im 32.  I was diagnosed last April
kirkaldy
How about yourself>
kirkaldy
?
Ron M
I assume you are starting to show symptoms
Gary_KC
I am back.
kirkaldy
I have a for a few years.  Shakey hands, twiches, some cramps (not awful though).  Can't raise from a squatting position, and sometimes a little sruggle on the stairs
Ron M
Welcome back. Kind of odd
Ron M
Sounds like KD symptoms. I aslo was diagnosed about a year ago.
Ron M
Kirk I find that the cold weather makes KD symptoms worse. Not sure if your experiencing that in Michigan.
Stewart
Good morning from Socal had to down load java again to get on
TerryW
Sorry I got knocked out
kirkaldy
Not too bad.  It may make me a little more tired sometimes.
Ron M
That is good. After this winter in chicago, i understand why there are a lot of KD men in Florida and warmer states. I can't wait for summer to come
TerryW
my hands don't work when I come back n the house when it's cold
Stewart
Although I live in California my goal is to move to Florida at lease part time
Ron M
Where are you living Terry
TerryW
stay away from those sinkholes
TerryW
that poor guy
Stewart
for sure
TerryW
Ron,  In Calif, near Yosimite Natl Park
TerryW
I could not imagine waking up being swallowed by a sinkhole
kirkaldy
Just curious if anyone has problems with coughing, or has problems occasionally clearing their throats after eating? Thanks
Ron M
Has to be nice there. I assume you still get the cold though
kirkaldy
What are the chances>
kirkaldy
?
carofer
I have problems clearing my throat only at night when i wake up at 3AM
TerryW
sometimes Kirk,  I have to drink something when I eat after each bite to help wash it down
carofer
I like to cough -- makes me feel better
Ron M
One in a million, that was just poor luck.
carofer
my physiatrist is getting a sleep test for me
TerryW
yep ron
TerryW
Carofer -  I had one of those
carofer
he says apnea can be a problem for kd people
TerryW
yes it can
carofer
did u learn anything terry?
kirkaldy
I have one too.  My wife love it
TerryW
I have sleep Apnea many episodes per night but I got the CPAP machine but could not sleep with it so I gave it back.  I do ok without it.
Stewart
My Vitamin D level is very low Doctor had me on 2000 units didn’t help now I’m on 5000 units, I will have to wait and see if that helps.
carofer
Is that D3 Stewart?
TerryW
Steward do you go out in the sun at all?
Stewart
Yes 5000 units D3
Ron M
I have had a lot of problems with my vitamin d level and always wondered if it is associated with KD
Gary_KC
Kirk, have you read SBMA Natural history? This will help you for the prognosis.
TerryW
hi Mrugs
carofer
it's really important to avoid osteoporosis or osteopenia to have sufficient D3 and calcium
Ron M
Welcome mruggs
Gary_KC
You can search Natural history of spinal and bulbar muscular atrophy (SBMA): a study of 223 Japanese patients by google.
kirkaldy
It sounds farmilliar. but I will definitly google it.  Thank You.'
Ron M
I have been using a vitamin d cream as well as the pills and i think the cream has helped with absorbtion
Gary_KC
Also, you can find personal story in KDA web site, too.
carofer
osteoporosis can be aggravated by NOT having weight forces applied to bones. So the less you walk, the more likely your bones will get weaker.
r_mrugs_ny
Good morning.
kirkaldy
Hi r_mrugs_ny
Ron M
Terry, any idea when the results of the study on exercise and kd will be reported
TerryW
Ron,  I would need to check.  Not sure.  sorry
Stewart
I’m outside quite often, I’ve heard very low vitamin D levels are quite common with Kennedy’s, Vitamin D cream that's new to me I'll look into it.
carofer
where do you apply the d cream?
Ron M
Not a problem. Just very interested in the results. I know bruce swears by exercise. I do my best but not sure if I am helping or making things worse.
kirkaldy
I agree Ron
r_mrugs_ny
i will also have to look into that for my husband, vitamin D. He works nights, sleeps during the day and does not see much daylight, he has recently started taking calcium as well.
Ron M
carofer, I just rub it on my forearm. It is vitamind3 1000 iu
carofer
Right, Ron.  We know that you can overdo exercise and destroy too many muscles, but I am a long way from that.  I find it difficult to exercise regularly like Bruce.
carofer
I like stretching exercises but they don't build muscle
Ron M
I have a hard time exercising myself, but I try and do alittle. If the report said it was beneficial. I t could help me get motivated
Stewart
I believe I have to keep as active as I can.  To much and it can take several days to recover
Ron M
Stretching has to help. This winter I have just been tight and can;t seam to get the muscles to relax. Hoping the summer will help
carofer
I saw that some great sports guy got busted for using IGF-1, we have talked about that before.
carofer
I am thinking it might be worth another try if it's an illegal athletic enhancer
Ron M
I saw that and it peaked my interest if that could be used for kd
carofer
The word from NIH is that it is unproven, and that the only one that is effective is the intravenous, not the sublingual stuff you buy in stores. IGF-1 has been proven to improve KD at the cellular level.
carofer
Intravenous IGF-1 is used for some juvenile growth problems. prescription only.
Ron M
Thanks - didn't know that.
Ron M
I need to make a move and head out. Wish everyone a good week. Be well
carofer
There was a presentation on IGF-1 research at one of the KD conferences; I think 3 years ago
Stewart
I believe there are people doing studies on IGF-1 , I looked at it online but not ready to go there.
r_mrugs_ny
you too Ron
Stewart
Have a great week, catch everyone later thanks
kirkaldy
Thanks everyone!  Hope everyone enjoys their weekend!!
Gary_KC
Stay warm and have a great week. Bye.
carofer
c ya later. stay healthy and keep warm