| MikeG |
|
Hi Chris! |
| Moseremous |
|
Hi mike |
| MikeG |
|
and a good Sunday morning to ya |
| Moseremous |
|
thought i was too early |
| MikeG |
|
yep I got on early to see if the past buffer is going to work in IE |
| MikeG |
|
we've got about 20 mins |
| Moseremous |
|
oh okay |
| MikeG |
|
and, like Firefox, Safari, and Chrome - it doesn't work... :( |
| Moseremous |
|
thought it started midnight my time |
| MikeG |
|
so how's the weather over there now? |
| Moseremous |
|
finally some rain after four weeks of cold weather |
| Moseremous |
|
cold here means 15 degrees celius |
| Moseremous |
|
celcius |
| MikeG |
|
how far are you from Melbourne? |
| Moseremous |
|
are you in melbourne? |
| MikeG |
|
no, but I will be in early December |
| Moseremous |
|
oh yes, |
| MikeG |
|
remember? |
| MikeG |
|
then Perth... |
| Moseremous |
|
i am about three hours north of melbourne by plane |
| MikeG |
|
and we're still debating Brisbane I Sydney |
| MikeG |
|
may be too hot in December |
| Moseremous |
|
if you don't have four weeks to spare i would probably only do melb, perth and maybe a quick stopover in sydney |
| MikeG |
|
yeah, that's what we're thinking |
| Moseremous |
|
we'd lovce to see you in brisbane, but with perth in the equation it sort of discounts brisbane |
| MikeG |
|
wow - 15 degrees is no fun on the hands |
| Moseremous |
|
red wine keeps them warm |
| Moseremous |
|
haha |
| MikeG |
|
lol |
| MikeG |
|
do you know Mike White? |
| Moseremous |
|
i have emailed him a few times back and forth since the last chat |
| Moseremous |
|
seems a great guy |
| MikeG |
|
yes, he is! Maybe you and Cliff and Mike could get the KD - Down Under going... |
| MikeG |
|
do you know how to do a web page? |
| Moseremous |
|
trouble is distance, although with computers thats not really an excuse |
| Moseremous |
|
my brother runs a web hosting business, netports |
| Moseremous |
|
he could set something up |
| MikeG |
|
yeah, no one here actually eyeballs anyone unless they live in the same city like Don & I |
| MikeG |
|
that would be great! |
| Moseremous |
|
mike white said he went to the last conference abd had a great time |
| MikeG |
|
we do everything in Joomla and we can add the AU to ours and give you a complete site that you could modify as you pleased. FREE! |
| Moseremous |
|
but it would be just a copy of your site, we realy have nothing here to add, no research etc. although i guess just contact details would be good |
| MikeG |
|
sure - you coulod like to ours for the research, chat room, etc... |
| MikeG |
|
link |
| Moseremous |
|
you wouldn't beleive how the kda site has helped me over the past 15 years |
| MikeG |
|
I know - me too! |
| Moseremous |
|
the doctors here have no idea, and i take transcrips of research info etc to my gp |
| Moseremous |
|
general practicitioner |
| MikeG |
|
funny thing, in 1995 the only resource was the MDA in Austraila! |
| MikeG |
|
I posted on their site and Terry found my post and got in touch - I was the only one at the time that he knew of that had KD... |
| Moseremous |
|
in 1993 when i was disagnosed they said all female offspirngs should be terminated. thank god i had just had my second daughter |
| Moseremous |
|
they rea;y had no idea |
| MikeG |
|
then he found Pat Griffith and the web site was born |
| Moseremous |
|
amazing how it has grown |
| MikeG |
|
Terry and Susanne have done so much good by starting it - there is no telling how many people they have helped!!! |
| billeric |
|
good morning guys |
| MikeG |
|
were you diagnosed with the genetic blood test Chris? |
| TedA |
|
Hello from Richmond, VA |
| MikeG |
|
Ted, have you done any sailing up there yet? |
| Moseremous |
|
yes mike |
| MikeG |
|
GREAT! |
| Moseremous |
|
in 1993 they had to send samples to us |
| Moseremous |
|
an i waited three months for results |
| MikeG |
|
ok, in 1990 I had to send samples to Duke... |
| Gary_KC |
|
Good morning. This is Gary joining in from Kansas City. It is already over 80 degrees this morning. It is hot! My PC broke down. So I could not join the chats for a while. |
| MikeG |
|
same here |
| Stan |
|
Good morning all from Michigan |
| Moseremous |
|
hi garry send some warth down under |
| Moseremous |
|
warmth |
| MikeG |
|
glad to see you back Gary |
| Bruce |
|
Gary, and here I thought you just didn't like us any more.:) |
| Moseremous |
|
hi bruce |
| TedA |
|
No I had to go to CA a couple of times to sail. In late August I will be in Canada for 5 days of racing |
| Bruce |
|
TedA, where will you be racing in Canada? |
| MikeG |
|
that's good Ted, have you done any on the lakes up in VA? |
| TedA |
|
Hamilton Ontario |
| Bruce |
|
Morning Chris, thanks for joining us this morning |
| chrisgrun |
|
Good morning everyone. Excited to discuss with everyone. |
| MikeG |
|
Morning Dr Chris |
| chrisgrun |
|
Chris is fine. |
| MikeG |
|
yes, we are all anxious to hear about the trial |
| chrisgrun |
|
We are excited to have new participants. |
| chrisgrun |
|
The study is looking at the effect of exercise on strength in kennedy's disease. |
| memo |
|
|
| MikeG |
|
how many are n the pot so far? |
| chrisgrun |
|
one so far. but we have many lined up. |
| chrisgrun |
|
we hope to recruit a total of 50. |
| MikeG |
|
I called and signed up but never heard back from anyone. |
| chrisgrun |
|
Angela has all of your information Mike, she will contact you shortly and schedule you. |
| stewart |
|
Good morning |
| MikeG |
|
I called and signed up but never heard back from anyone... |
| MikeG |
|
ok, |
| chrisgrun |
|
Right now we have about 10 new patients scheduled |
| MikeG |
|
IE is messing with me - I should have stuck to Firefox |
| chrisgrun |
|
Once participants come to the NIH they will be randomized to one of two arms of the study-- two different forms of exercise |
| MikeG |
|
So the trial will be a placebo exercise and the real thing but we won't know which one we have - right? |
| chrisgrun |
|
that's right , but it is not a real placebo because there is the possibility that the control arm will have more benefit than the intervention arm. |
| chrisgrun |
|
you will probably be able to figure out which arm of the study you were assigned to. |
| chrisgrun |
|
that 's why it is not a double blinded study, but a single blinded study (only the evaluators are blinded) |
| Moseremous |
|
chris, prior to the study is ther a current thinking about the benefits or otherwise of exercise |
| MikeG |
|
interesting |
| chrisgrun |
|
Yes, there is concern that aerobic exercise can lead to bad effects in terms of weakness as was shown by the study in Denmark several years ago. |
| chrisgrun |
|
We will study a different form of exercise- designed by our rehab dept. who has experience seeing many guys with KD. |
| Moseremous |
|
so you are examining this with your study? |
| Moseremous |
|
oh okay |
| MikeG |
|
good, I'm safe... I couldn't do aerobic exercise if I had to! |
| Moseremous |
|
haha |
| chrisgrun |
|
we will be looking at many different types of outcome measures- some related to balance performance, stress, depression.. |
| chrisgrun |
|
exercise can have many different effects on the body, but exactly how it will effect muscle strength in KD is not well defined yet. |
| chrisgrun |
|
There is growing evidence that the muscle itself may be playing a role in the disease- that's why it is important that we look into this. |
| chrisgrun |
|
we will also be using accelerometer devices that the subjects will wear on their hips for the initial and final 10 days of the trial to record the rough "total" of physical activity. |
| chrisgrun |
|
We are very excited about the trial- and hoping that you will be able to participate. |
| MikeG |
|
Chris, what are the pre-requisites for the trial? |
| chrisgrun |
|
The NIH will provide for your lodging and transportation from any location in the US. |
| chrisgrun |
|
There are several- be able to walk a distance of 50 feet with or without a walker, able to stand for 10 minutes without the use of an assistive device, access to a computer with internet connection, age greater than 18, no other medical condition that would prevent exercise such as heart disease, lung disease, not beginning a separate exercise program within the two months prior to starting our trial. |
| chrisgrun |
|
We also be test your AMAT (adult myositis assessment tool test), and if you are too strong or too weak, we may ask you not to participate. |
| Stan |
|
So, even though I can walk further and do more than what is required, I'm out because I have a pacemaker and COPD? |
| MikeG |
|
for the "able to stand for 10 minutes" - can we just touch a wall with our finger? I need the feedback to be able to do that. |
| chrisgrun |
|
Hi Stan, not necessarily-- why don't you speak with Angela over the phone and we can find out exactly what you can and can not do. |
| chrisgrun |
|
Hi Mike- this should be fine. you can use your finger.. but we would prefer not using a cane for instance. |
| MikeG |
|
I can do that! |
| MikeG |
|
how many participants will be in the trial? |
| chrisgrun |
|
Good, I think that it would be best to discuss your health with Angela so that she can ask specific questions that would be helpful in knowing. |
| stewart |
|
What about medications, would Avodart for example exclude you? |
| chrisgrun |
|
There will probably be about 80 subjects who are screened- and we anticipate that 20% will not meet the inclusion criteria,, then an additional 20% might drop out of the study. So we would have a final number of 50 in the trial. |
| chrisgrun |
|
No, you can take Avodart. That is fine. We wouldn't want the participants to take a medication that might make them tired while they are performing the exercises..Like sedatives. |
| Moseremous |
|
chris, when i was diagosed in 1993 and still playing competition tennis, my first reaction was to hit the gym and biuld up like arnorld swazenegger, but i was told that the less i use the mussles the longer they would last. 18 years later i am still walking okay but now have heart problems due to lack of exercise. This study appears to be the the perfect answer. do we exercise or not |
| chrisgrun |
|
yes, it is a good question that needs to be answered. We will also be collecting history information from all of the subjects to get information on everyone's prior experience with exercise so that we know what may have worked for some subjects and not others. It is helpful to have everyone's experiences organized into one database. |
| stewart |
|
What time frame are you looking at, when is the planned start date etc. |
| chrisgrun |
|
we will also be collecting information on prior work habits and how that may have influenced your outcomes with weakness. |
| chrisgrun |
|
We started the trial last week, and we will be recruiting about one new subject per week. The subjects will be in the study for a total of 16 weeks- 12 weeks of exercise and then a 4 week followup period. You would come to the NIH at the beginning and then 12 weeks later. |
| chrisgrun |
|
If you are interested in coming in, please contact Angela Kokkinis at 301-451-8146 or e-mail
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
|
| chrisgrun |
|
The study will likely take a year and a half to finish if everything goes well. |
| chrisgrun |
|
There will also be significant followup during the 12 weeks of exercise with telephone contacts and video taping to make sure that there are no problems with the exercises. |
| MikeG |
|
how soon after it's complete do you think you will have the results? |
| chrisgrun |
|
It won't take too long-- our statisticians will have to crunch the numbers. It should take just one to two months to know whether or not it was beneficial. |
| chrisgrun |
|
There are some lab studies that we are also doing looking at how the hormones will change with the exercise- testosterone and IGF-1 (insulin like growth factor 1)... |
| Moseremous |
|
sounds like a great study, i hope all you guys in the u.s. get into it |
| chrisgrun |
|
We would like to know if the exercise has any effect on these hormones,, or if the hormone levels will predict someone's response to the exercise. |
| Stan |
|
Will we have to give up any of our normal activities while on the study? I have a few trees that i have to cut up from the storms, etc. |
| chrisgrun |
|
We would also be delighted to have individuals from outside the US participate. If you can get to the US, then the NIH can pay for your transportation here and your lodging in Bethesda, MD for the study evaluations. |
| Moseremous |
|
hey chris if you will pay airfare from australia i would love to. haha |
| chrisgrun |
|
No, you will not have to give up any other activities,, as long as you don't start a new exercise program that involves at least two weekly sessions of 20 minutes of exercise in each session. You should be able to do the yard work with no problem. |
| Moseremous |
|
no excuse to leave the trees hehe |
| chrisgrun |
|
Well, Maybe I can convince Kurt Fischbeck to fly me to Australia and then we can bring the exercise study to you.. |
| MikeG |
|
:) |
| Moseremous |
|
yeah, i will meet you on the great barrier reef |
| MikeG |
|
I'll help you Chris... |
| Stan |
|
Ok. I ask because the yard work is exercise and taxes the muscles. It can be quite strenuous. |
| chrisgrun |
|
Sure, I'm up for that. |
| MikeG |
|
we're going in December - will that work for you? |
| Moseremous |
|
stan, get someone into do it and you supervise |
| chrisgrun |
|
The yard work should be OK. I think that the supervision also sounds like a good idea. |
| chrisgrun |
|
Yes, we will be having new subjects come in during december. If you haven't heard from Angela recently, you will soon and she'll let you know about a date. We will accomodate you. |
| Stan |
|
Nobody around to help usually. Couldn't do it if the wife was around to supervise. : ) |
| Moseremous |
|
haha |
| chrisgrun |
|
good to be safe with this, especially if you're on a ladder.. |
| MikeG |
|
hi Terry |
| TerryW |
|
Hello |
| chrisgrun |
|
Good morning |
| Stan |
|
Ladders and table saws are on my list of no-no's. |
| MikeG |
|
I don't do ladders... |
| stewart |
|
Great, I'm ready. I'll contact Angela next week. How long would I need to stay in Bethesda if selected. Thanks |
| Moseremous |
|
i don't do stairs |
| chrisgrun |
|
THat's good, your stability is something that can be affected in KD, we will be measuring stability also during the study. |
| TerryW |
|
I have a question for you all, Does anyone here suffer from "Severe morning depression" |
| MikeG |
|
me either... I'm lucky to be walking at 63! |
| chrisgrun |
|
You would stay at the NIH overnight the first night, then for two days (total of three days here)> |
| MikeG |
|
no Terry - not me. |
| Stan |
|
Not here, Terry. |
| Bruce |
|
Nope, Terry |
| Moseremous |
|
no terry, if i wake up, its a good day. Maybe your mediation |
| Moseremous |
|
medicqation |
| Moseremous |
|
medication |
| Gary_KC |
|
not for me, terry |
| Moseremous |
|
i'll get it right |
| MikeG |
|
three days at the end of the trial too? |
| TerryW |
|
"severe moening depression happens when you first wake up you have feelings that you wish you have died in your sleep, feelings of suicide, overwhelming emotions. |
| chrisgrun |
|
Depression is something that Angela is interested in looking at with this study-- potentially if there is an interaction with exercise. And also how many individuals with KD have this problem.. |
| TerryW |
|
I have had this for the past few months where I wake up in tears and uncontrolled emotions |
| TerryW |
|
as the day goes on it goes away |
| billeric |
|
No Terry |
| chrisgrun |
|
THis is somthing that you should speak to your internist about. they should be able to help you. |
| TerryW |
|
I read about it and they say it is emotions that you build up overnight in your consious and when you wake they release. |
| Stan |
|
Sorry, Terry. Haven't experienced that. I hope it's not something to look forward to. |
| MikeG |
|
yep - sounds like you need to look into what meds you're taking... or should take. |
| TerryW |
|
sub consious |
| TerryW |
|
I take no meds |
| chrisgrun |
|
it is a serious problem.. but one that can be helped for sure. |
| Moseremous |
|
hey terry when you wake up, think of me, a guy you have never met but someone who you have helped more than you can ever imagine |
| TerryW |
|
:) |
| Moseremous |
|
you and angela have kept me going for years |
| chrisgrun |
|
Sometimes that quality of your sleep can also effect your mood the next day.. You might not be sleeping effectively, and might need a sleep study to better evaluate this. |
| chrisgrun |
|
Good thing to discuss with your neurologist |
| TerryW |
|
I need to go I think, |
| chrisgrun |
|
Yes, Mike-- same three days at the end of the study also. |
| Tomk |
|
will the a Partial report on the study be discussed at the November KDA meeting?? |
| MikeG |
|
good. And our nights are free except for the first? |
| chrisgrun |
|
Depression is a serious problem for which there can be many causes-- it's important to get a full medical evaluation to see what could be causing it, then to come up with an appropriate way in which it can be managed.. |
| Moseremous |
|
something to take seriously terry..talk with your doctoer |
| chrisgrun |
|
Yes, we'll discuss it at the November meeting.. |
| chrisgrun |
|
The entire stay at the NIH will be payed for. We'll pay for sunday night when you get here.. then for the duration of your stay in Bethesda for the study. |
| TerryW |
|
I will probably have to talk with him about this. I have been holding off because I have always been able to handle it, but I can't anymore |
| chrisgrun |
|
Excited to present more details at the november meeting- we should have some data by then. |
| MikeG |
|
do it Terry! |
| chrisgrun |
|
Yes, definitely.. They will be able to have a plan. It is a common problem that can happen to anyone, and it is important that it is handled the right way. |
| MikeG |
|
Great - we're looking forward to it! |
| billeric |
|
You have helped too many people not to help yourself Terry. |
| TerryW |
|
SOrry that I have not been as active in the past few months chats, |
| TerryW |
|
Thanks bill |
| Bruce |
|
Chris, this is exciting stuff. I have been an advocate of smart-exercises for many years. It will be great to see the results. |
| Stan |
|
Hey Terry, we all have lives. We can't make all the chats. |
| MikeG |
|
Chris thank you so much for sharing this information with us. I'm sure there will be a good number of participants to choose from. We all look forward to it! |
| TerryW |
|
|
| chrisgrun |
|
The NIH is excited to have the KDA involved in this study, and also in future studies.. There will likely be some drug studies coming up in the next few years.. We are waiting for some additional data with animal studies, but have some promising leads. |
| Bruce |
|
Does IGF-1 still show some promise? |
| chrisgrun |
|
We are also making stem cells from the KDA subjects that we saw at the NIH- and are currently making motor neurons and other cells from them to better understand the disease. |
| MikeG |
|
wow! |
| Bruce |
|
Thanks, Chris, for joining us today. We appreciate all that your team is doing. |
| chrisgrun |
|
The IGF-1 has shown good promise with the animal studies.. Carlo Rinaldi has done the animal work here in our lab to inject a form of IGF-1 into mice with KD-- the mice have a trend towards increase survival-- and there are dramatic improvements in the muscle-- decreased atrophy and degeneration. |
| TerryW |
|
Sorry, my PC shut down right in the middle of chat |
| Bruce |
|
That and ASC-J9 are too of my hopes. |
| Bruce |
|
two |
| MikeG |
|
me too! |
| chrisgrun |
|
We are also measuring the IGF-1 levels again in the KD subjects for the study.. Based on stored serum from KD subjects from the previous studies, the IGF-1 levels were found to be low. We would like to repeat that measurement now to see if it holds up.. |
| chrisgrun |
|
We hope to use the animal models and cell culture systems to help us screen through these drugs to find the ones which have the best potential to work. |
| TerryW |
|
|
| Bruce |
|
We probably need an update on the IGF-1 research since it has been about a year or more since Maria was on the chat to explain it. It still sounds likeit has promise. |
| Bruce |
|
Thanks again Chris. We appreciate you taking the time to be on our chat this morning. |
| chrisgrun |
|
Yes, it has promise.. Now that we know that an injectable form of the drug also works in animals. |
| Gary_KC |
|
Chris, thank you very much for your time sharing the information with us. |
| MikeG |
|
Thanks again for joining us today Chris. We all look forward to a successful trial! |
| Moseremous |
|
thank you very much chris |
| TedA |
|
Thanks Chris! |
| stewart |
|
Thankyou, You guys help me so much, I find having the disease to be such an emotional roller coaster before KDA I was alone with it. Thanks |
| billeric |
|
Thanks Chris |
| chrisgrun |
|
Thanks everyone. I will get going now. Have a great day, and look forward to seeing everyone in November. |
| Stan |
|
Thanks. Looking forward to any updates. |
| chrisgrun |
|
thanks again. Hope to see you in Bethesda for the trial. |
|
|
|
