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Kennedy's Disease Chat Transcript   08-04-12

Topic:  NIH Clinical Trial on Exercise

Guest:  Angela Kokkinis, RN, National Institute of Health

Host:  Ed Meyertholen

David
Good Morning TedA
TedA
Good morning from Richmond, VA     Having technical challenges this morning
David
Good Morning dorsey
dorsey
good morning hope everyone is well
David
I am doing well.  However we got a message from Paula yesterday that Mike Goynes broke his hip and therefore will not be joining us this morning.
TedA
Yes, doing well thank you
dorsey
Ouch hope he is doing ok.
David
Good Morning edm
edm
good morning everyone
edm
I have heard from Mike and he is doing fine (for someone who has a broken leg).
dorsey
Ok that is good to hear.
David
Thanks that is good news
TedA
Was it hip or leg Mike broke?
David
Good Morning Gary
David
Paula's message said hip but they were still waiting for surgery
edm
This morning Angela Kokkinis is schedcule to come and give an update on the exercise trial at NIH
David
Good morning rmof
rmof
Good morning David
edm
He broke part of the femur (leg bone) near the part that meets the hip.
David
Good morning Jon
Jon  Lickey
Goooooood mornin'
Jon  Lickey
Am very interested how the trial is going with the participants ?
edm
Is anyone here a participant in the study?
rmof
I am not
Jon  Lickey
I am not
dorsey
I tried but was not a good participant for the study
David
I participated in the study but would like to wait for Angela to join us before making comments.
Gary_KC
Good morning. This is Gary joining in from Kansas City. It is hot and dry summer in this year.
edm
Hi Gary
Gary_KC
Hi edm
Jon  Lickey
mornin' Gary
Gary_KC
Hi Jon
rmof
Gary, it has been extremely hot and dry in Illinois. I hate to say it but I look forward to winter
jack
Good morning to all
edm
Hi Jack
jack
Sorry i am late
jack
Coud not get on
jack
Has anyone heard from paula about mike
edm
He broke his femur and they are hoping to put in some screws to 'fix it'
edm
He seems to be in good spirits.
jack
that stinks he has been working so hard on the convention.
jack
Angla has not showed up as opf yet. I was hoping to get some input opn the test
cdh17901
Good Morning, this is Carla, Stan's wife.
jack
Gary I saw our entry on winter, I agree with you. I like the winter better then the hot days of summer
jack
morning carla
jack
How is stan doing
David
Good moning Carla
Gary_KC
Jack, I like summer because my foot is always cold.
cdh17901
Good morning Jack and David!  He's having a bit of a rough spot these last few days so I'm filling in for him today.
TedA
My fingers do not work in cold weather
Jon  Lickey
I'v had trouble with cold feet this year............KD problem?
cdh17901
He is sitting next to me so I can keep him updated as we go.  :-)
edm
I have had cold feet for about 7 years now (no pun intended) - I always have to wear socks.
Jon  Lickey
same!
edm
The soles of my feet are also completely numb, almolst no feeling at all.
TedA
Doctor are always checking my cold red feet.    Circulation is always good.
jack
At least when your cold you can put something on. When your hot you can only take so much off then you get in trouble
jack
edm I seem to get theat more and more with the numbness in my feet
rmof
From what I learned cold feet is common in KD. I have it constantly even when it is 90 degrees out. I still would rather have the winter then feel like I do this summer. The feeling  that I am in an oven
akrn
Hey Guys sorry I am late got confused with the time and then also had to figure out how to sign in.
edm
Yes, I can sense that the numbness if slowly creeping up my foot.
David
Hi Angela
akrn
How are you all doing?
TedA
Hi Angela
edm
I do much, much better in cold weather than in hear
akrn
Has anyone heard how Mike is doing?
jack
Good morning Angela
edm
Hi Angela
cdh17901
Good Morning Angela!
Jon  Lickey
mornin/
jack
Still breathing
Jon  Lickey
mornin' Angela !!
akrn
The exercise trial is coming along quite nicely thanks you all.  We are still recruiting.  Trying my best to get to people who have contacted me for recruitment.
edm
Mike is doing well, broken femur, probably will need some screws.
akrn
OK glad to hear he is doing well.  Do we know how he fell?
edm
I have not heard.
cdh17901
Stan said he was going to participate but to far to travel and too much with his other health issues.  His Dr. did not think it was a good idea for him to participate.
akrn
Well once the trial is over and the information has been analyzed we will defintely let you all know the findings.  If one group does better than the other we can share the exercises.  We can't really do anything until then.  Then the people that could not particpate will still be able to benefit.  Don't want to put stuff out there that could hurt you all.
akrn
We also are still plugging away in the lab on the IGF-1 and ASCJ-9 studies.  Hopefully we can do a drug trial again in about 1-2 years.
cdh17901
Thank you for that Angela.
rmof
Angela, when will the trial be over?
akrn
It should be over in Feb. 2012.
cdh17901
Do you mean 2013?
akrn
Then it will take us a few months to analyze everything.
TedA
Any feed back from guys still on Avadart?
akrn
Yes sorry 2013 sorry!
akrn
No have not heard too much feedback on Avadart.
TedA
I would like to do the 2 minute walk again and compare to 2008.
akrn
Ted A. what do you think about it?  Have you tried it yet?
dorsey
Angela how does one get an appointment to be seen and maybe tracked and studied. I was not able to participate in the study because I was not a good candidate. I am still pretty strong and being seen on the street no one would be the wiser that something is wrong with me, but i am losing muscle seems to be most notable in my  back shoulder area also my left arm and hand.
rmof
Ted, what is the 2 minute walk?
TedA
Been on it since shortly after I found out that was on the real thing in CT.
akrn
Dorsey, we would love to see you at NIH but we would have to bring you into the general clinic and that clinic is really for diagnosing people but I can look into it for you.  Are you doing any type of exercises?
TedA
2 minute walk was part of the Avadart CT, 2006-2008
rmof
Is it how far you walk in 2 minutes?
akrn
Ted, the 2 min. walk was what we did in the Dutasteride trial.  Do you when we would walk in the back hallway and I would time you.  You did the 50 feet three times?
rmof
Got it - thanks
akrn
The 2 min. walk is how fast you can walk 50 ft. in 2 min.  We do it three times and take your best number.
akrn
With the two min. walk we did it that you could use a walker or a cane if needed.
carofer
and they put you on a leash
akrn
Carofer you are too funny, yes I guess we do!
TedA
Dutasteride = Avadart.    My scipts now are for Avadart.
akrn
So how many of you are coming to the conference in October?
akrn
Dutasteride is the generic name for Avadart.  Should be the same though TedA.  How are you feeling?
David
I will be there
TedA
AKA Murray belt
Jon  Lickey
YES,  we'll be there....wife and I.
jack
Mary Ann and I can not make it this year. Bummer
rmof
I am not going to be able to make it
edm
I am coming as well.
cdh17901
Stan and I cannot make it either :-(
carofer
wife is out of country then, so i will miss it.i wanted her to see NO.darn
akrn
We will be there from NIH, Dr. Grunseich, Carlo Rinaldi, our KD lab expert, Alice Schindler, our genetic counselor, Dr. Fischbeck and myself.  Looking forward to it.  Will miss you all that can't make it this year.
TedA
WONDERFUL!     Did over 5 hours of kayaking last weekend and only a little tired since then.
akrn
WOW Ted that is awesome!! I did kayaking at that is tough.  I will let the docs know.  Great!!
akrn
I was wondering is there anyone to talk about the sexual issues of KD at the conferenct this year?  Do you all know?  That is something that is coming up again during the exercise trial.
dorsey
akrn, no i kind of quit I just golf now. Every now and then i will do a pull up or 20 push ups but nothing like i did a year ago prior to finding out. Back then i lifted free weights to failure and could do 7-10 pull ups and 50 or so push ups at one time.
Jon  Lickey
Ted.......you have trouble getting out and up from the kayak ??
akrn
I am pushing for some of the younger/newer guys in the trial to come to the conference.  I think it would be great for them to see they are not alone and also get all the information you all provide.
cdh17901
Angela, one of the people on the conference planning committee has arranged for someone to address those issues.  I believe it is Kathy.
edm
Angela,
TedA
I do need assistance getting in and out of the kayak
edm
Angela, there will be a psychologist from Tulane at the meeting and I believe that she will talk about sexual issues.
carofer
i think the conferencs are great, too. they are a real morale-booster.
akrn
Dorsey, you may want to slowly work on those areas.  Don't go all out, start with light free weights.  Even 3 to 5 lbs.  Work your way don't over do it
cdh17901
edm, you are correct
akrn
Ok glad to hear that someone will be there to talk about sexual issues.  Also I was glad to hear that Heather Montie will be doing a carrier talk.  That is really important.
cdh17901
Stan wants to know what he could do to get back up to par...he's had some real issues lately.
akrn
I think the conferences are great too.  I really enjoy going to them.
cdh17901
Stan says he needs to get his weight back up as well as his strength.
akrn
cdh17901 what are Stan's issues lately?
akrn
OK for weight gain the best thing is Ensure or something along those lines.  One trick we always did was mix it with ice cream and make it like a shake.
akrn
Why is he losing weight though?  Swallowing issues, lack of apetite?
cdh17901
Angela, Stan's issues are many...KD, COPD, Pacemaker, Feeding tube
carofer
there is a new ensure with HMB. does that help?
akrn
Carofer what is HMB?
TedA
I eat 4-5 small meals a day and sometimes that is Ensure.
cdh17901
The nutritionist said new Ensure Clinical Strength is good.
dorsey
akrn ok when i do work out and get sore it is a different sore it feels like it is deep in my joints not just a muscle soreness. It may be all in my head maybe and I am turning normal pain into something it is not
carofer
HMB is a hormone that is supposed to "build muscle"
akrn
cdh17901 has he just started losing weight and strength or has it been going on for awhile?
akrn
Thanks carofer I learn so much from you all.  I would have to look up HMB and see how it works
carofer
i don't know much more about it but it looked interesting with or without ensure
dorsey
akrn my prolem is I thinking I am adding weight since I am not exercising like I did I know my muscle tone has definitely changed they just kind of look smooth with little tone.
cdh17901
is has been going on for a while, over a year.  He is not able to swallow much due to the KD so he is on Jevity 1.5, I make shakes and add the GNC Muscle Milk, and Nestle has a product called BeneCalorie that can be added to foods also.
akrn
dorsey usually if it is KD related it is more muscle pain.  Joint pain could be related to something else like arthritis.
akrn
dorsey have you tried swimming, that is a great exercise and it does not put strain on muscles or joints and can really help your shoulder/back muscles.
Margy
from Wikipedia  β-Hydroxy β-methylbutyric acid (HMB), or β-hydroxy β-methylbutyrate, is a metabolite of the essential amino acid leucine and is synthesized in the human body. It plays a part in protein synthesis and was discovered by Dr. Steven L. Nissen at Iowa State University. It has been used in scientific studies to purportedly increase muscle mass and decrease muscle breakdown. Nissen held the original patent on the metabolite as a nutritional supplement. It was discovered in pigs, and small quantities can also be found in grapefruit, alfalfa, and catfish. As a supplement it is usually sold as a calcium salt.[2][3]   Research published in the Journal of Applied Physiology has shown that HMB may have an effect on increasing muscle weight and strength.[4] A review in Nutrition & Metabolism provides an in depth and objective analysis of HMB research. [5] The same study lists as HMBs proposed mechanisms of action the following:
cdh17901
I have found the Oley Foundation Website to be helpful for us as well.  They have lots of information for people on feeding tubes.
akrn
cdh17901 that sounds like a good plan.  You are being followed by a nutrionist so that is great.  Has he had any swallow studies lately?
TedA
I do my exercises in the spa 3 times a week.    Can do things in water that I can not do out.
akrn
Margy, THANK YOU!!! I will run it by our docs but it seems relatively safe.  Does not contain any steriods so that would be our concern.
carofer
sex is a touchy subject, esp for KD. you want more testosterone for good performance but too much aggravates KD symptoms. it is a catch-22.
akrn
Yes TedA that is why water exercises are great.  You are using the water as resistence and your own body.  Water exercises are great for people with KD and other neuromusclar disorders.
cdh17901
Stan hasn't had a swallow study in about 3 years.
akrn
Yes carofer it is a touchy subject.  Anabolic steroids are defintely not good for KD.
dorsey
akrn no golfing has been my only real exercise I will start the weights again but light weights. Last year I was able to bench my weight which was 175, I know i can not do that weight anymore but would benching 95 lbs or so be over doing it?
akrn
cdh17901 ok it is time for a swallow study.  Even though he is on a feeding tube you have noticed some changes right?
cdh17901
Yes, he has noticed changes.  We will mention it when we go to the Dr.   He has an appt. on Monday.
Jon  Lickey
Angie...... Sister-in-law has Parkinsons sent her for voice lessons to strenghten swolling........do youthink this might help KD patients ?
akrn
dorsey yes take it SLOW!!!!  You really don't want to do harm to your muscles.  I would cut it at least in half, if not more.  Sart really slow.
akrn
cdh17901 then you should defintely mention it to his doctor on Monday.  See what is going on, there might be something else going on you never know.
dorsey
ok will do, is the golf two times a week too much?
David
I having been doing a number of speech therapy and throat exercises for the last several years and it has definitely help reduce swallowing problems for me
akrn
Jon it is worth a shot but Parkinson's is related to a lack of L-dopa in the brain, not the same as KD.  However, like I said worth a shot.
carofer
KD patients average about 2% muscle loss per year compared to normal which is 1% per year
akrn
Dorsey see how you feel, why did you give up golf in the first place?
dorsey
akrn I still golf i go twice a week   was wondering is that ok?
akrn
David I agree speech therapy and throat exercises can help.  You need to work those muscles.
akrn
carofer you are correct.  We found that out during the Dutasteride trial
akrn
If you are tolerating it OK and what I mean by that is if you are sore or fatigued for more than 2 hours after playing.
carofer
dorsey, do u use a cart?
edm
Andela, Thanks for coming, I am afraid that I have to go.  I will see you in New Orleans!!
akrn
Great see you then, again sorry I was late!
Jon  Lickey
Bye all !!!
cdh17901
Really wish we were able to attend this year but being on the planning committe helps!
dorsey
akrn should i try the avodart?
TedA
Thanks for being on the Chat Angela
akrn
cdh17901 if you want to call me to talk things over I am more than happy to talk with you.  My office number is (301) 451-8146.  I work Monday, Tuesday and Wed.  The best times to reach me in the office is Monday and Tuesday afternoons and Wed.  That goes for everyone, I really don't mind talking with anyone, whether you are in the trial or not.
akrn
Thanks TedA
dorsey
Thank you Angela for being here and answering so many questions
akrn
Dorsey that is something you will have to talk with your physician about.  We at the NIH can not recommend it since it was not signficantly proven to help with KD.
jack
Got to go thanks Angela.
cdh17901
Thank you Angela!  We do appreciate that offer!!!
akrn
Dorsey like I said I don't mind at all, I really like doing the chats.  Bye Jack
dorsey
Ok I will email you.
carofer
great having you here, Angela
cdh17901
Angela, is there an e-mail to reach you at ?
akrn
cdh17901 I really mean.  The guys in the study know I am hard to get a hold of, but I try my best.  It may take me awhile to get back to you or you may get a call from me at  8pm but I will get back in touch with you.
Gary_KC
Angela, thank you very much for joining us this morning.
akrn
My email is This email address is being protected from spambots. You need JavaScript enabled to view it.
akrn
You all are welcome thank you for having me!  Sorry I was late!
David
Thanks Angela, see you at the conference
dorsey
Take care guys. Thank you again Angela
Gary_KC
I have got to go. Bye all.
cdh17901
Thanks Again!  It was a pleasure!
akrn
Thank you all hope to talk with you soon!
cdh17901
Bye for now!
Gary_KC
Connection reset by peer
akrn
Bye everyone, thanks!
David
Goodbye all
carofer
bye now
rmof
Have a good weekend eeryone