Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The site is essential for a source for the general public, whenever one encounters the diagnosis of Kennedy's Disease and has no idea what that might be. There is simply no other source as easily available to the public."

Archives - 2015 and Older Transcripts

Topic:  Open Forum

Guest:  None

Host:  Mike Goynes

 

Gary_KC
Good moring, MikeG
MikeG
Hi Gary, sorry - I had my sound off and didn't hear you enter...
carofer
good morning from a wet california
MikeG
Good morning NY
Gary_KC
It is 57 degrees with overcast this morning in Kansas City.
MikeG
I wish you'd send some our way - we're dry as a bone here!
MikeG
but beautiful cloudless skies and 68 here
r_mrugs_ny
Good morning 32 her but supposed to be near 60 by monday
r_mrugs_ny
*here
carofer
nice, mikeg
MikeG
di you get any damage from Sandy?
r_mrugs_ny
no none at all
MikeG
that's good
MikeG
I tried to geta few doctors and researchers that attended the conference to be our guest today but everyone I asked was busy...  :(
MikeG
maybe next time
MikeG
everyone was really interested in what Gene Hung from ISIS had to say.
carofer
what was the biggest takeaway from the conference?
r_mrugs_ny
I'm looking for information on diet/supplements
MikeG
that IGF-1 is probably going to be the next candidate for a clinical trial.
Gary_KC
Thank you very for publishing 2012 winter KDA newsletter.
Gary_KC
I could not attend the KDA conference but I could see lots of new information that was presented in the KDA conference.
MikeG
r_mrugs_ny are you wanting to lose weight or just maintain?
MikeG
yes, I have all the videos that my brother-in-law took during the conference but most of the doctors were reluctant to sing the release so we could post their videos on the website.
r_mrugs_ny
my brother in law was just diagnosed last week and my husband has to go for the dna test still   just trying to be proactive   neither one really needs to lose weight
MikeG
that's a good idea - I think we have some info on the website about nutrition.
r_mrugs_ny
i have seen that   there is just no
r_mrugs_ny
not alot of info out there about this disease
MikeG
I'm 64 and still walking (with a cane or walker) and I eat pretty much normal.
Gary_KC
I am struggling to lose weight. It is not easy to maintain the weight after lost.
MikeG
good morning stewart
Stewart
Good morning from SOCAL
MikeG
are you in the chair most of the time no0w, Gary?
carofer
The less weight on your legs, the better to walk.
MikeG
absolutely!
MikeG
I'd like to lose another 5 pounds but it's tough!
MikeG
I have a juicer and like all sorts of vegtables juiced.
Stewart
My Doctor tells me I should lose 10-15 pounds
carofer
yes, i agree mike. the hard part is keeping up with enough physical activity
Gary_KC
MikeG, yes, I am no chair most of day.
MikeG
I have almost cut sodium out of my diet completely now... except for the processed foods that I have to eat sometimes.
MikeG
yes, it's really tough to lose weight if you're in the chair most of the time.
carofer
did ur leg heal now mikeg?
MikeG
yep - I'm walking around like normal now.
carofer
great to hear!
MikeG
I still have some unstability so I use a walker most of the time now.
carofer
i got a prescription for a walker this week
MikeG
I'm still concerned because some of the exercises I do cause a pain in the right leg where the fracture was.
MikeG
I really like mine - I walk up and down the sidewalk and when I get tired, I just sit down on it for a few minutes and then I'm good to go again.
Gary_KC
I have osteoporosis. I guess that I need exrecise and take supplement.
Stewart
I keep quite active but I get very tired, I need 8 plus hours sleep every night.
carofer
what brand is a good one for walkers? I want to be able to put it in the trunk of my car.
MikeG
I'm not sure which one is best but I ordered a Medline online and it's billed as being the lightest 4-wheeler out there with a seat.  Weighs as much as a gallon of milk and a loaf of bread...
carofer
gary_kc, i take reclast infusion once per year for osteopenia -- check the forums and nof.org for info on natural alternative treatments. reclast has side effects.
carofer
thx mikeg
MikeG
my wife has osteoporosis and she takes Actonel - you need soething to keep the bones strong.
Gary_KC
carofer, thank you for your information. I took it last year. I got sever sideeffect like flu.
MikeG
Actonel is a one a month med.
carofer
yes i got sick for 3 days too after infusion
Gary_KC
MikeG, thanks the info.
MikeG
YW
carofer
osteoporosis is a double whammy for kders. we don't put enough weight bearing on our bones to keep them strong and we fall and break the bones
MikeG
I'm having the twitching that I used to have years ago... ever since I started the exercise trial.  Has anyone else experienced that?
Stewart
I twitch both (before and after the trial)
carofer
i don't notice any difference. i have had fasciculations for decades
Gary_KC
I am using a Power Assist Pedaler Stationery Exercise Bike Machine.
MikeG
me too but they subsided about age 55
Stewart
I take that muscle milk, mixed with milk every morning just for general health, I don’t know if it does any good but it can’t hurt. any ideas
MikeG
sounds good Gary.  I'm using something like that at the gym and it has handles that work the arms too.
MikeG
is that the protein drink, Stewart?
Stewart
Yes
Stewart
I buy it in powder form from Costco
carofer
how about igf-1 supplements?
MikeG
I've used that before but not for long... my nephews are using it and I think it's really a good idea - I may try it again.
MikeG
good question, carofer - that may be the ticket.
MikeG
it sure wouldn't hut to try anyway...
carofer
i have heard good things about muscle milk powder - helps muscles grow and decreases muscle deterioration
MikeG
does the muscle milk powder have IGF-1 in it?
Stewart
that's good i'll keep using it
MikeG
what brand is it, Stewart?
Stewart
Muscle Milk brand
Gary_KC
IGF-1 is injection for skin? Can we get it from food?
MikeG
I don't remember which brand I used but I'll see if I can find that one.  Tnx
carofer
There are igf-1 supplements that you apply sublingually (under the tongue)
MikeG
from what Ed was saying at the conference it is an injection.  That's why I was wondering if it was available in the muscle milk powder...
Gary_KC
carofer, thank you.
MikeG
carofer, where do you get it?
carofer
There is an injection called increlex only from doctors
carofer
you can find igf-1 in health food stores or online. it is made from deer antler velvet.
carofer
i don't think muscle milk has igf-1
MikeG
ok, I should ask Dr Maria Punnuto about that - she has done extensive studies on IGF-1...
Stewart
Well guys I have to go, I have to venture out in the wet weather. Take care have a great week.
carofer
i asked dr grunseich but he was a bit skeptical about the supplements
MikeG
yes, they don't suggest anything that has not been through an FDA cycle...  :)
carofer
please let us know dr punnuto's response in the forum if u do, mikeg
MikeG
I will, carofer
MikeG
I just looked at deer antler velvet IGF-1.  It ranges from about $25 to $100 for a one ounce bottle...!
MikeG
ouch!
carofer
those little deer must be tough to catch!
Gary_KC
It looks expensive, does not it?
MikeG
that's the question.  If it works that is not too much to have to pay!
carofer
u only put a few drops under your tongue, so it lasts for weeks
MikeG
ok
MikeG
have you tried it, carofer?
Gary_KC
MikeG, you are right. :-)
carofer
yes i took it for about 6 weeks. i did not notice any improvement but it did not hurt. i used a low-concentration form. i want to try the more potent stuff
MikeG
sounds like it would be worth a ty anyway...
carofer
higher potency = higher cost
Gary_KC
carofer, thanks for sharing.
MikeG
ok, I need to go and correct the web page - we have lost the "Who's in the Chat Room Now" html... :)
MikeG
chat with you all later.  Stay safe!
Gary_KC
Bye mikeG
carofer
thanks mikeg for hosting this today
Gary_KC
I got go too. Stay warm, bye now.
carofer
see you all. stay happy