| TerryW |
|
[b]Hello |
| carofer |
|
hi it's me allan from california |
| TerryW |
|
[b]Hi Allan, How are you? |
| carofer |
|
i am good.hoe're you guys? |
| carofer |
|
how |
| TerryW |
|
[b]LOL, you created a new word |
| TerryW |
|
[b]I am doing not as good as I should be |
| carofer |
|
my cat is bugging me |
| carofer |
|
what' s going on? |
| TerryW |
|
[b]Saw doctor yesterday for bad depression, I have never taken mood meds before. He put me on Cymbalta |
| TerryW |
|
[b]I start today |
| carofer |
|
i take welbutrin |
| TerryW |
|
[b]It has become too musch for me to handle myself |
| TerryW |
|
[b]I tried |
| TerryW |
|
[b]How is Welbutrin, that was the other one that he was going to try |
| carofer |
|
it took weeks for anything to take effect, then i changed meds three times before i found what worked |
| TerryW |
|
[b]I hope it stops these bad thoughts I have |
| carofer |
|
your wife helping? |
| TerryW |
|
[b]She listens and does her best |
| TerryW |
|
[b]Hi Tom |
| TerryW |
|
[b]Hi UTE |
| UTE |
|
Good Morning All |
| TerryW |
|
[b]I never had Depression like this before, I could always handle it |
| carofer |
|
welbutrin is goood for me. it has no bad side effects, and it keeps my mood elevated. my son wants me to stop because he thinks it makes me politically conservative |
| MikeG |
|
Good morning everyone |
| TerryW |
|
[b]It was time for me to turn to a professional |
| TerryW |
|
[b]Hi Mike |
| MikeG |
|
so did you get help, Terry? |
| TerryW |
|
[b]LOL Allan |
| carofer |
|
everyone has different results with these things |
| TerryW |
|
[b]I saw the doc last night |
| MikeG |
|
GREAT! |
| MikeG |
|
we all need to get our bodies chemicals in balance sometimes... |
| TerryW |
|
[b]Been having emotional breakdowns no matter where I am, in town, at stores ect. |
| Tomk |
|
Good morning I hope the wellbutrin makes you a Compassionate Conserative? |
| TerryW |
|
[b]I want them to stop, don't know where they came from, Out of nowhere |
| carofer |
|
haha. no i have no compassion for the far left |
| TerryW |
|
[b]I think they are mostly anxiety based, I think about all the things that need to be done |
| MikeG |
|
what happened to the chat room - it looks different... |
| TerryW |
|
[b]They updated their application |
| TerryW |
|
[b]Hi Ed |
| EdM |
|
Good morning all |
| MikeG |
|
it looks like you can paste into it now - that's good. |
| TerryW |
|
[b]I think that was one of their fixes |
| UTE |
|
New Java must be helping the "environment"? |
| Moseremous |
|
Good evening all! |
| MikeG |
|
hi Chris |
| MikeG |
|
up late... |
| Moseremous |
|
my daughters 18th |
| TerryW |
|
[b]Hi Chris |
| Moseremous |
|
hi terry how are you doing? |
| TerryW |
|
[b]Time will tell |
| MikeG |
|
yep - I noticed you had to approve the paste buffer before it would work... |
| TerryW |
|
[b]Saw doc last night, Has me starting on meds today |
| Moseremous |
|
what for terry? |
| TerryW |
|
[b]Depression |
| Moseremous |
|
tell me about it |
| TerryW |
|
[b]Just bad depression and bad thoughts |
| Moseremous |
|
i have periods when i'm okay and then months when i'm very bad |
| TerryW |
|
[b]COmes on in a flash, especially right when I wake up |
| Moseremous |
|
good you saw dr |
| MikeG |
|
so Ed, what's the news from the Gordon Conference? |
| TerryW |
|
[b]I held off as long as I could thinking I could handle it myself |
| TerryW |
|
[b]But no go |
| Moseremous |
|
hopefully the meds will help |
| TerryW |
|
[b]:) |
| Moseremous |
|
we all need help sometime terry |
| EdM |
|
The conference was fine, it was not, however, very good for any new and exciting news. |
| Gary_KC |
|
Good morning! This is Gary joining in from Kansas. |
| Bruce |
|
Morning Guys |
| EdM |
|
Hello Gary |
| TerryW |
|
[b]Hi GAry |
| Gary_KC |
|
Hi EdM. |
| TerryW |
|
[b]Hi Bruce |
| EdM |
|
LEt me give a breif intro on what a Gordon Conference is |
| TerryW |
|
[b]I had always thought I could outthink depression & beat it, But it won |
| TerryW |
|
[b]GO ahead Ed |
| TerryW |
|
[b]Sorry |
| Moseremous |
|
it didn't win terry, you got help |
| Moseremous |
|
you are out smarting it |
| MikeG |
|
RIGHT! |
| TerryW |
|
[b]hope so |
| EdM |
|
The purpose of the conferences (and there are many of them each year) is to promote discussions and the exchange of ideas between researchers in a common field. |
| EdM |
|
What that means is the each conference is about a particular area of science, very specific. |
| EdM |
|
They then invite scientists in the field to come and live together, usually in an isolated area, for a week to 'talk; about the topic |
| EdM |
|
They all live, eat and talk together for the week and usually, there is no other place to go |
| EdM |
|
The one major rule of the conference is that nothing can be quoted, all discussions are essentially "off the record" |
| EdM |
|
Every other year there is a conference on CAG repeat diseases, of which KD is one of several |
| carofer |
|
does kda sponsor anyone to attend? |
| EdM |
|
Since we have one of the least severe diseases and since it is very rare, even in a good year, there is not a lot of KD work |
| EdM |
|
We sponsor students and post docs to attend, usually 2 or 3 |
| EdM |
|
It is a great opportunity for them to meet and interact with the big wigs in the field. |
| EdM |
|
The conferences are limited to about `150-200 conferees and therefore it is a very intimate setting, |
| EdM |
|
This year, the only talk on KD was by Diane and it was the same as what was presented by her lab at the KD conference, nothing very new. |
| EdM |
|
This year, the organizers invited several speakers who worked with other neuro diseases (not CAG repeat) - and much did not, in my opinion, have many applications to KD |
| EdM |
|
I think that they did this to enlarge the discussion to other possible paths of research that have not been utilized much by CAG disease researchers, I was not fan of this |
| EdM |
|
Are you all asleep already? |
| MikeG |
|
:) |
| Moseremous |
|
no very interesting |
| MikeG |
|
so no arguments on if the aggregate is the cause or symptom of KD... |
| carofer |
|
i am waiting for the juicy parts |
| EdM |
|
To be honest, this year, I expect the KDA conference would have more new info for us |
| MikeG |
|
that's good news |
| Moseremous |
|
Any news is good news |
| EdM |
|
Mike, no. The closest they got was a post talk roundtable run by Dr. Sobue (he is an important researcher in KD in Japan, he has headed up the clinical trials there) |
| EdM |
|
However, it was started late and they stopped him early (toi go to lunch!!) |
| MikeG |
|
any news on AndroScience's progress with J9? |
| EdM |
|
There are no juicy parts! |
| EdM |
|
There was no mention and I do not have any info. |
| Moseremous |
|
Does Dr. Sobue collaberate with our researches? |
| carofer |
|
Did they focus on treatments or pure research? |
| EdM |
|
Yes, they exchange info and various models. |
| Moseremous |
|
it's all got to help in the long run |
| EdM |
|
They tended, iirc, on disease mechanisms at the molecular level, but concentrated on paths not researched for KD |
| EdM |
|
They did have a session on the search for biomarkers, these are easy to measure parameters that can be used to determine the progression of a disease and thus if a treatment works |
| Bruce |
|
Ed, since the research community is so competative, I cannot imagine them sharing anything that has not already been written up (published). Or, are they fairly free in explaining their current research? |
| EdM |
|
This sounds simple but it is not. They are trying to find some measuement that indicates that one has the disease and that changes with before major symptoms occur. |
| EdM |
|
take out that with |
| EdM |
|
Bruce, generally they are very forthcoming at the GRC - otherwose why come? |
| Bruce |
|
These biomarkers would be beneficial in determining (pre-symptom) if someone has the disease? |
| carofer |
|
in businessm, they say if you can't measure it, it does not exist. do biomarkers exists for KD? |
| EdM |
|
The goal is to find some measurement that one, for example, could measure when we were 15 (before KD sympotoms occur) and that change as the desease progresses. |
| EdM |
|
It it possible that there is a treatment that cannot help us with major nerve/muscle loss but may prevent the onset of the degeneration. |
| EdM |
|
How could one know if the onset is delayed by a treatment, there must be something to measure - and no, there is no known biomarker |
| Bruce |
|
So the mutated CAG (count) would not be considered a biomarker. What would possibly be considered a biomarker in a person with KD? |
| EdM |
|
No, because it does not change |
| Bruce |
|
Sorry, I wrote my question before seeing your answer. |
| carofer |
|
high creatinine levels? |
| EdM |
|
How about this, my bother in law used to work in the air force, he would chemically analyze oil sample from jets |
| Moseremous |
|
sorry, i thought the cag repeats were directly related to age of onset??? |
| Moseremous |
|
and severity |
| EdM |
|
As the jet ages, certain chemicals for the engines would occur in the oil, if you could measure these chemicals, you could predict that a part is about to fail -- before it fails. |
| MikeG |
|
but we were born with the same CAG repeat count that we have now. |
| carofer |
|
"onset" of symptoms is very slow in KD, so it may be tough |
| EdM |
|
The onset of KD is quite variable - despite the talk of the relationship with the repeat length |
| Moseremous |
|
oh okay |
| Bruce |
|
Ed, as usual, I like you analogy. That helps a lot. Thanks. |
| EdM |
|
One cannot, for example, predict from the repeat lenght when symptoms will occur |
| Moseremous |
|
Sorry Ed, just remebering an old study that said there was a direct correlation |
| TerryW |
|
Hello Stewart |
| Moseremous |
|
probably 20 years old by now |
| carofer |
|
so there is something that happens with aging that causes/tracks symptom onset |
| EdM |
|
Back to the analogy, so if a certain ball bearing is made of magnesium and titanium and one finds high levels of these in the oid, that suggests that these ball bearings are wearing down and need to be replaced, this would be like a biomarker. |
| stewart |
|
Good morning all! |
| EdM |
|
Researcher always say that, but it is really just a trend, especially iwth KD |
| EdM |
|
Carofer, great question, no answer! |
| UTE |
|
As carofer mentioned...what about measuring creatinine levels |
| EdM |
|
Creatine is released after the muscles degenerate, too late to be a biomarker |
| Bruce |
|
Ed, do you have an example of a biomarker in a disease? |
| EdM |
|
Bruce, no - I do not know of one offhand (I may have to think about it) |
| EdM |
|
I think of them as the holy grail, not sure there is one. |
| carofer |
|
immunity cells (T-cells) may be one? |
| Bruce |
|
So, using cancer, for example, if researchers could identify a biomarker they could potentially treat pre-cancer symptoms? |
| EdM |
|
The difference here is that cancer is not always present, but we have always had KD. |
| UTE |
|
One of my doctors tried to measure my muscle reaction to bad cholestoral or statin meds...the result was creatinine levels were so freaky in the 1st place...that no measure for bad meds for KD |
| Bruce |
|
Can I assume the difficulty in finding biomarkers have to do with knowing what to look for in a pre - versus - post onset of a disease? |
| Moseremous |
|
yes, you would imagine it would be alot easier to identify a biomarker in us |
| EdM |
|
Creatine levels can fluctuate wildly depending on what you hvae done. |
| carofer |
|
motor neuron loss must have some measurable effects, no? |
| EdM |
|
Bruce, yes - the idea is that at the cell lever, they may be some changes that occur before their activity is affected. Like they are sick but still work. We want to be able to find something that indicates that they are sick so we can cure them |
| EdM |
|
Carofer, yes - that is the symptoms of KD (muscle weakess, tremors, cramps, etc). The hope is to cure them before the loss of motor neurons - but the problem is how do you know you have cured a sick one? |
| Bruce |
|
So, when scientists have human tissue to study of a person with KD, they can compare that to a healthy human tissue and look for potential markers? |
| EdM |
|
They can - that is also the use of animal models. |
| EdM |
|
However, if the tissue is post mortem, then it would not be that usedful for biomakers - too late |
| EdM |
|
The hope is to find something easy to measure and non invasive |
| EdM |
|
It is a very difficult problem - and this understates it! |
| Bruce |
|
Biomarkers could possibly lead to a cure, not just a treatment. Is that correct? |
| MikeG |
|
is that why the tissue samples were taken at the last KDA Conference in San Diego? |
| EdM |
|
There was a paper just published that deals with this http://www.ncbi.nlm.nih.gov/pubmed/21826683 |
| EdM |
|
Their method is electrophysiological - sounds awful but it is like a EKG recording |
| EdM |
|
THe tissue samples were, iirc, to develop stem cells to use a model cell type for research |
| Gary_KC |
|
My understanding was that androgenAndrogen level was highly increased in our body when we were age 16-18. The high level of androgen begun acceleration of toxic accumulation in nerve cells. It is just my understanding. So a biomarker may be the toxic accumulation??? I do not know how to measure it??? |
| EdM |
|
One of the problems with KD is that the primary action is to kill brain cells and we cannot and should not let resrachers study our brain cells |
| EdM |
|
so they need to find an alternative, cells, and animal models |
| EdM |
|
Gary, |
| EdM |
|
Gary, being males, we have high levels of androgens since puberty |
| EdM |
|
THe toxic fragment is in never cells and there is no non invasive way that I know of to measure it |
| carofer |
|
ed, are you equating upper motor neuron cells with brain cells? |
| EdM |
|
and it is not proven it exists nor when it starts to accumulate |
| EdM |
|
Carofer, in KD, lower motor neurons are primarily affected, they are in the spinal cord and brain stem |
| EdM |
|
So in KD, I am referring tp the spinal motor neurons as brain cells |
| carofer |
|
when i hear brain cells, ithink about thinking |
| carofer |
|
thx for clarifying |
| EdM |
|
Good point, but there are lots of brain cells that have nothing to do with thinking |
| Bruce |
|
My wife tells me that all the time! |
| UTE |
|
So if lower motor neurons are spinal cord and brain..is ALS upper neurons and in what cells? |
| EdM |
|
We are lucky in tht KD does not affect those thinking cells, despite what a wife or two says |
| EdM |
|
Upper motor neurons are the cells that activate the lower motor neurons |
| carofer |
|
i would have no problem contributing spinal fluid if that really helped. |
| Bruce |
|
Do upper motor neurons also control breathing (I am thinking of ALS patients when I ask this)? |
| EdM |
|
When you decide to move a muscle, the thinking area of the brain activates upper motor neurons (they understadn the big picture) and they acivate the correct lower neurons |
| EdM |
|
Lower motor neurons are the ones that send messages directly to the muscles, including breathing muscles |
| EdM |
|
It is like the chain of command in the army, the geneal says capture that city, the colonels and majors (upper motor neurons) make a plan, the captains and lieutenants (lower mn) carry it out |
| Moseremous |
|
but i'm just a private!! |
| Bruce |
|
Ed, I always appreciate your explanations. You have a gift for making things understandable. |
| EdM |
|
Thus if you lose upper motor neurons, you will affect the activity of the lower motor neurons |
| EdM |
|
Moseremous - those are the muscles! |
| MikeG |
|
nice analogy Ed... you always have the touch to get points across. |
| Moseremous |
|
haha |
| UTE |
|
Ed tks for the great explanation |
| Bruce |
|
Well, I need to run, Thank you Ed for hosting todays chat. I always learn something. Stay upright everyone. |
| Moseremous |
|
take care bruce |
| MikeG |
|
thanks, Ed - I always look forward to you CLASSES!!! :) |
| EdM |
|
My fingers hurt, I have not typed so much in a long time |
| MikeG |
|
lol |
| MikeG |
|
you did fantastic too! |
| Moseremous |
|
yes Ed, certainly explain thimgs so i can understand |
| MikeG |
|
gotta run... later |
| EdM |
|
The really hard thing to understand is how hard a disease this is to fix |
| Gary_KC |
|
EdM, thank you very much for hosting todays chat. It was intersting chat. I learnd lots! Bye now! |
| EdM |
|
So long everyone |
| carofer |
|
great info, ed, even if not much from gordon |
| Moseremous |
|
Good night all. If you are going to fall, fall into bed! |
| UTE |
|
Tks again..youall have a great week |
| stewart |
|
Thanks so much to learn |
| Tomk |
|
good lesson on KD |
|
|
|
