Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"As a mother with a son who has KD, I appreciate those of you who are so dedicated to informing the public of this rare and difficult disease."

Archives - 2015 and Older Transcripts

Topic:  Open Forum

Guest:  None

Host:  Ed Meyertholen

 

Gary_KC Good morning. This is Gary.
UTE This is UTE, how have you been?
Gary_KC It is only 30 degrees this morning in Kansas City. I am fine thank you.
UTE SLC finally got above freezing a few days ago
edm good morning everyone
Gary_KC Hi edm
UTE How's the weather?
edm In northern Va, it is cold (for us) - around 25
edm Just a few days ago, we were at 70 degrees
edm Are y'alll getting ready for the super bowl?
UTE We're happy if we get above freezing
Gary_KC Hi Stewart
Stewart Goodmorning for SOCAL
edm Hi Stewart
edm Well, we pay for the mild winters with hot and humid summers
Stewart Hi Hope I can stay on, my computer is running very slow this morning.
UTE Everybody staying upright these days?
Gary_KC Hi Bruce
edm I am doing well, few complaints - my primary issue is swallowing
Bruce Morning
edm Hi Bruce
UTE Great to connect again Bruce
Bruce Ed, do you do swallowing exercises?
edm I have not, but I do eat a lot and talk a lot!!
Bruce I do swallowing exercises every morning (perhaps 5 minutes) and they have made a world of difference to me.
UTE My tongue swelled up so bad the first week in January that I was unintelligable
Bruce What happened to make it swell?
UTE At ER they said it was an allergic reaction to something...but I think saliva infected my tongue thru an atrophy crack???
edm What makes you think it was saliva?
UTE It was one of the rare causes I found on the internet...what got me down even more was the steroid prednisone I took after leaving the hospital
Bruce I cannot take prednisone. It reacts with my KD and causes problems.
UTE Wish I had talked to u first
Bruce I am a wealth of knowledge even though Ed is much smarter than me. :-)
edm Only when it comes to college hockey!!
Bruce :-)
UTE Do u know what kind of probs...I'm still weaker and it seemed to also make my neuropathy in my feet and calves worse
Bruce Morning r_mrugs_ny
r_mrugs_ny good morning
edm Hey there
Bruce It took several days to go through my system (get cleaned out).
Stewart Because of my high cholesterol I had a scan last week to check for blockages so far so good the Doctor put me on Welchol hopefully it will help.
UTE Im on Welchol for cholesterol as statins take me down
Stewart He wants to keep me off statins because of my KD
Stewart Unfortunately I have a family history of high cholesterol and heart problems
edm So Bruce, how did you enjoy your first month of freedom!
Bruce I have enjoyed it a lot ... thank you very much Ed.
edm I hope you realize that you are always welcome to return!!
Bruce I'll think about (i.e., the check is in the mail)
UTE After taking statins a few years ago back then I couldnt getr out of the tub as a result. But after prednisone I cant get out of the tub or even lift/push myself against a couch or chair to get up
Bruce When did you stop taking prednisone?
Bruce Ed, the deer antler velvet and IGF-1 sold over the internet concerns me.
UTE Out of ER back on Sat Jan 7th? Then they said take med for 4 days...I gave up taking it after 2 days
Bruce It should be cleaned out of your system by now.
edm I generally feel that way whenever I see those infomercials on how to cure everything - I thought that your response in the forum and on your blog was great
UTE Speaking of the internet...the Bounder powerchair states it can get you off the floor???
Bruce I had the flu the first part of this year and it lasted for three weeks. Yes, I had the shot. The last two weeks I was so weak I could not drink a glass of water using my right hand or stand on my left leg. I blamed it on the flu, but found out it was a reaction to the Warfarin I was taking for a blood clot in the calf. 24 hours after stop taking the drug, I felt better. 48 hours later and I was back ... total return of my strength. I looked it up on the internet and 5% of the people taking this drug experience muscle weakness.
Gary_KC Bruce, I read the deer antler velvet in your blog yesterday. Thank you for the info.
Bruce Ute, I haven't heard about that chair. How can it get you off the floor?
Stewart I looked at IGF-1 online decided I don’t have enough information so I am staying away I figure I have enough problems for now,
Bruce Well, Ed is the real advocate of being cautious and always checking with your doctor. I have taken up the cause because of Ed.
Bruce Snake oil elixer
Bruce Kurt Fischbeck at NIH looked at the website and said something like stay away from this stuff.
UTE I'm not sure...but the website: christopherreeve.org does a great video comparison of the leading powerchairs including that one
edm There are a lot of very unscrupulous individuals out there who take advantage of people who are desperately looking to cure (put in your disease here).
Bruce Thanks, I'll check it out.
Stewart Any word on the outcome of the NIH exercise study.
edm I do not think there will be any news until they finish collecting data
edm ... and they are still bring in patients.
edm that is "bringing in"
Bruce It will be interesting to see the results of the exerises that appear to help.
UTE Anyone have foot neuropathy and swelling...
Bruce Neuropathy is something I have experienced for several years. Massaging the area seems to help.
edm No swelling - my feet are numb and always cold - I wear socks all the time all year round.
UTE I'm working on getting a new powerchair...w/foot elevation...but have to have something soft or not touching calves
Bruce Swelling is often the result of a high salt diet, little or no exercise, diabeties, etc.
r_mrugs_ny my husband had the genetic test done on the 17th, still waiting on results.
Bruce I found that even though me feet feel cold, they are often warm to the touch.
Bruce r_mrugs, do others in his family have KD?
r_mrugs_ny his brother got his results last month CAG 591?
edm I do not think that they are actually cold, they just feel cold ;-)
Bruce CAG 591? That is so far out of range, it must be some other number betweenn 40 and 60 (approx.)
r_mrugs_ny no other family members that we know of
r_mrugs_ny im not sure then
edm Is 591 a typo? In KD, the CAG repeats run from low 40's and 50's. The highest that I can remember is around 60
edm I am a slow typer!
Bruce His brother should have gotten a copy of the report. 591 could be his CK (perhaps).
r_mrugs_ny yes i think thats it.
Bruce The DNA test for KD shows the CAG repeats. A high CK alone could mean several other things.
r_mrugs_ny CAG was 51
Bruce Yes, that makes sense.
edm For diagnosis purposes, only the CAG repeat is needed.
r_mrugs_ny the neurologist is assuming my husbands wil be lower?
r_mrugs_ny will
Bruce r_mrugs, if either you or your husband have any questions, please don't hesitate to ask us.
r_mrugs_ny will do, thanks for having so much info on the site.
Bruce It just started snowing here and the ground is already white. It is not supposed to snow in Georgia.
edm global warming!!
r_mrugs_ny 14 degrees here wind chill of 3
Bruce 22 this morning ... very cold for Georgia.
r_mrugs_ny it was 66 just a few days ago
UTE We get alot of snow here...but black ice for the 1st time in 30 yrs caused alot of wrecks this week
UTE r mrugs are u in upstate ny
Gary_KC Bruce, it was some tornados in South, isn't it?
edm Well, the groundhog did not see his shadow, so an early spring is coming
Bruce I hate black ice. Of course any ice to my legs is dangerous. My recovery time isn't quite what it used to be.
r_mrugs_ny wny just south of Buffalo
UTE I went to h s in Syracuse...lake effect there too
Bruce Yes, about fifteen minutes south of us a 24 mile long path of a 130MPH did a lot of damage (100 cars and a couple hundred homes and buildings destroyed).
Gary_KC UTE, what is black ice?
r_mrugs_ny have a good day everyone, i will check in next month.
Bruce Ice you can't see until you are on it. It is thin and doesn't look milky in color.
Bruce Please do
Bruce Well, thanks to everyone for joining us today. Please stay active and upright.
Stewart Well it’s time for me to have breakfast, and take my vitamins, thanks, until next time.
Gary_KC Bruce, thank you. It looks like freezing rain.
edm Off to bed!!
UTE well here because of the inversion between mts...the warm air gets trapped below the cold and moisture doent have time to turn to snow but freezes as it hits ground
edm So long
Gary_KC
Good morning. This is Gary.
UTE
This is UTE, how have you been?
Gary_KC
It is only 30 degrees this morning in Kansas City. I am fine thank you.
UTE
SLC finally got above freezing a few days ago
edm
good morning everyone
Gary_KC
Hi edm
UTE
How's the weather?
edm
In northern Va, it is cold (for us) - around 25
edm
Just a few days ago, we were at 70 degrees
edm
Are y'alll getting ready for the super bowl?
UTE
We're happy if we get above freezing
Gary_KC
Hi Stewart
Stewart
Goodmorning for SOCAL
edm
Hi Stewart
edm
Well, we pay for the mild winters with hot and humid summers
Stewart
Hi Hope I can stay on, my computer is running very slow this morning.
UTE
Everybody staying upright these days?
Gary_KC
Hi Bruce
edm
I am doing well, few complaints - my primary issue is swallowing
Bruce
Morning
edm
Hi Bruce
UTE
Great to connect again Bruce
Bruce
Ed, do you do swallowing exercises?
edm
I have not, but I do eat a lot and talk a lot!!
Bruce
I do swallowing exercises every morning (perhaps 5 minutes) and they have made a world of difference to me.
UTE
My tongue swelled up so bad the first week in January that I was unintelligable
Bruce
What happened to make it swell?
UTE
At ER they said it was an allergic reaction to something...but I think saliva infected my tongue thru an atrophy crack???
edm
What makes you think it was saliva?
UTE
It was one of the rare causes I found on the internet...what got me down even more was the steroid prednisone I took after leaving the hospital
Bruce
I cannot take prednisone. It reacts with my KD and causes problems.
UTE
Wish I had talked to u first
Bruce
I am a wealth of knowledge even though Ed is much smarter than me. :-)
edm
Only when it comes to college hockey!!
Bruce
:-)
UTE
Do u know what kind of probs...I'm still weaker and it seemed to also make my neuropathy in my feet and calves worse
Bruce
Morning r_mrugs_ny
r_mrugs_ny
good morning
edm
Hey there
Bruce
It took several days to go through my system (get cleaned out).
Stewart
Because of my high cholesterol I had a scan last week to check for blockages so far so good the Doctor put me on Welchol hopefully it will help.
UTE
Im on Welchol for cholesterol as statins take me down
Stewart
He wants to keep me off statins because of my KD
Stewart
Unfortunately I have a family history of high cholesterol and heart problems
edm
So Bruce, how did you enjoy your first month of freedom!
Bruce
I have enjoyed it a lot ... thank you very much Ed.
edm
I hope you realize that you are always welcome to return!!
Bruce
I'll think about (i.e., the check is in the mail)
UTE
After taking statins a few years ago back then I couldnt getr out of the tub as a result. But after prednisone I cant get out of the tub or even lift/push myself against a couch or chair to get up
Bruce
When did you stop taking prednisone?
Bruce
Ed, the deer antler velvet and IGF-1 sold over the internet concerns me.
UTE
Out of ER back on Sat Jan 7th? Then they said take med for 4 days...I gave up taking it after 2 days
Bruce
It should be cleaned out of your system by now.
edm
I generally feel that way whenever I see those infomercials on how to cure everything - I thought that your response in the forum and on your blog was great
UTE
Speaking of the internet...the Bounder powerchair states it can get you off the floor???
Bruce
I had the flu the first part of this year and it lasted for three weeks. Yes, I had the shot. The last two weeks I was so weak I could not drink a glass of water using my right hand or stand on my left leg. I blamed it on the flu, but found out it was a reaction to the Warfarin I was taking for a blood clot in the calf. 24 hours after stop taking the drug, I felt better. 48 hours later and I was back ... total return of my strength. I looked it up on the internet and 5% of the people taking this drug experience muscle weakness.
Gary_KC
Bruce, I read the deer antler velvet in your blog yesterday. Thank you for the info.
Bruce
Ute, I haven't heard about that chair. How can it get you off the floor?
Stewart
I looked at IGF-1 online decided I don’t have enough information so I am staying away I figure I have enough problems for now,
Bruce
Well, Ed is the real advocate of being cautious and always checking with your doctor. I have taken up the cause because of Ed.
Bruce
Snake oil elixer
Bruce
Kurt Fischbeck at NIH looked at the website and said something like stay away from this stuff.
UTE
I'm not sure...but the website: christopherreeve.org does a great video comparison of the leading powerchairs including that one
edm
There are a lot of very unscrupulous individuals out there who take advantage of people who are desperately looking to cure (put in your disease here).
Bruce
Thanks, I'll check it out.
Stewart
Any word on the outcome of the NIH exercise study.
edm
I do not think there will be any news until they finish collecting data
edm
... and they are still bring in patients.
edm
that is "bringing in"
Bruce
It will be interesting to see the results of the exerises that appear to help.
UTE
Anyone have foot neuropathy and swelling...
Bruce
Neuropathy is something I have experienced for several years. Massaging the area seems to help.
edm
No swelling - my feet are numb and always cold - I wear socks all the time all year round.
UTE
I'm working on getting a new powerchair...w/foot elevation...but have to have something soft or not touching calves
Bruce
Swelling is often the result of a high salt diet, little or no exercise, diabeties, etc.
r_mrugs_ny
my husband had the genetic test done on the 17th, still waiting on results.
Bruce
I found that even though me feet feel cold, they are often warm to the touch.
Bruce
r_mrugs, do others in his family have KD?
r_mrugs_ny
his brother got his results last month CAG 591?
edm
I do not think that they are actually cold, they just feel cold ;-)
Bruce
CAG 591? That is so far out of range, it must be some other number betweenn 40 and 60 (approx.)
r_mrugs_ny
no other family members that we know of
r_mrugs_ny
im not sure then
edm
Is 591 a typo? In KD, the CAG repeats run from low 40's and 50's. The highest that I can remember is around 60
edm
I am a slow typer!
Bruce
His brother should have gotten a copy of the report. 591 could be his CK (perhaps).
r_mrugs_ny
yes i think thats it.
Bruce
The DNA test for KD shows the CAG repeats. A high CK alone could mean several other things.
r_mrugs_ny
CAG was 51
Bruce
Yes, that makes sense.
edm
For diagnosis purposes, only the CAG repeat is needed.
r_mrugs_ny
the neurologist is assuming my husbands wil be lower?
r_mrugs_ny
will
Bruce
r_mrugs, if either you or your husband have any questions, please don't hesitate to ask us.
r_mrugs_ny
will do, thanks for having so much info on the site.
Bruce
It just started snowing here and the ground is already white. It is not supposed to snow in Georgia.
edm
global warming!!
r_mrugs_ny
14 degrees here wind chill of 3
Bruce
22 this morning ... very cold for Georgia.
r_mrugs_ny
it was 66 just a few days ago
UTE
We get alot of snow here...but black ice for the 1st time in 30 yrs caused alot of wrecks this week
UTE
r mrugs are u in upstate ny
Gary_KC
Bruce, it was some tornados in South, isn't it?
edm
Well, the groundhog did not see his shadow, so an early spring is coming
Bruce
I hate black ice. Of course any ice to my legs is dangerous. My recovery time isn't quite what it used to be.
r_mrugs_ny
wny just south of Buffalo
UTE
I went to h s in Syracuse...lake effect there too
Bruce
Yes, about fifteen minutes south of us a 24 mile long path of a 130MPH did a lot of damage (100 cars and a couple hundred homes and buildings destroyed).
Gary_KC
UTE, what is black ice?
r_mrugs_ny
have a good day everyone, i will check in next month.
Bruce
Ice you can't see until you are on it. It is thin and doesn't look milky in color.
Bruce
Please do
Bruce
Well, thanks to everyone for joining us today. Please stay active and upright.
Stewart
Well it’s time for me to have breakfast, and take my vitamins, thanks, until next time.
Gary_KC
Bruce, thank you. It looks like freezing rain.
edm
Off to bed!!
UTE
well here because of the inversion between mts...the warm air gets trapped below the cold and moisture doent have time to turn to snow but freezes as it hits ground
edm
So long