Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Surfing the internet I found the KDA and for me it was like an island for a castaway."

Archives - 2015 and Older Transcripts

Topic:  Open Forum

Host:  Jameson Parker


CTJameson
Hey there, good morning
jerryf
Good morning
CTJameson
Good morning Gary
CTJameson
two from KC.
CTJameson
do you know each other?
jerryf
no Im new
Gary_KC
Good morning. This is Gary joining in from Kansas City. It is a nice weather with 72 degrees this morning.
Gary_KC
Hi CTJameson.
David
Godd morning all
CTJameson
welcome to the chat jerryf!
CTJameson
hello David
MikeG
morning everyone
CTJameson
morning mike
David
Hi Mike
CTJameson
Ron, good morning.
Ron M
Good mornig all
David
Hi Ron
CTJameson
we've got a good croud collected
CTJameson
*crowd
MikeG
anyone here know how to use Joomla!?
CTJameson
jerryf, were you recently diagnosed with KD?
Ron M
Any one know what happened to the kd website. Need to go through the site map to find the chat room?
David
Not me assume it is some type of software
CTJameson
never heard of Joomla
Ron M
I don't Mike. What do you use oit for?
MikeG
Bruce decided that the bottom stuff was redundant and took it off.  Would you rather have that included?
jerryf
yes about a month ago
MikeG
it's what we do the website in.
MikeG
Since Bruce has gone away I need some HELP!
jerryf
I am also from kansas
Ron M
Mike, only my opinion but reduntant is good. Easy is the best. If you have a person that doesn't know what site map is. They would never find the chat.
CTJameson
jerryf, so this is very new.  Have you been experiencing symptoms for long?
David
jerryf I hope you find the KDA website and these chats as useful as I have over the last 4+ years
jerryf
muscle weakness for about a year
MikeG
yeah, the provide support link may be overlooked...
jerryf
my brother also was diagnosed with it about 6 months ago
wildeman44
Hello all! I'm new to this also...
Ron M
Mike, that is what I thought. If you need help with the website. I can learn the program. I enjoy working with computers. I work in the tech field currently.
CTJameson
I dito David.  KDA has been a fantastic resource for me.  I felt alone and doomed when I was first diagnosed.  Then I got to know others with KD and saw that one could still live a full life.
MikeG
GREAT!  Thanks!!!
CTJameson
welcome wildeman
wildeman44
Thank you
CTJameson
were you too recently diagnosed?
Ron M
Hello wilderman44
wildeman44
Yes
wildeman44
My oldest brother died from KA at the age of 55
Ron M
Mike, my info is on the KD site. Let me know how I can help
CTJameson
I'm sorry to hear that wildman.
David
For those new to KD, you might want to contact Angela K at the NIH to see if they still need a few more men to participate in the clinical exercise trial for KD'er This email address is being protected from spambots. You need JavaScript enabled to view it. I found them very helpful and particpating in the trail a good experience
CTJameson
Living with KD does make life challenging.
wildeman44
Is it true that we can not rebuild any muscle?
CTJameson
I am currently doing the exercise trial
CTJameson
The previous president of the KDA, Bruce has a blog where he seems to have improved strength and mobility through exercise.
CTJameson
http://kennedysdisease.blogspot.com/
CTJameson
but we have to be very carefull.  Pushing our muscles can do damage.  And certainly, we can't build muscle the way a KD free person can.
David
I do not know about rebuilding muscles however I have found that following some of the exercise guide on the KDA website adn working with my physical therapist I have gain some stability and stamina.  The key seems to be making an effort to stimulate but not exhaust muscles and motorneurons
jerryf
Where are trials held?
CTJameson
I agree David.
CTJameson
For the trial, you travel to Bethesda MD for 3 days (expences are paid)
David
The trial is at the NIH in Bethesda Maryland and they do provide some assistance with travel costs
CTJameson
then 12 weeks you exercise at home
MikeG
I started noticing I could not hold my head up if I leaned forward... I started doing the Smart Exercises that Bruce put up on the website and I'm slowly getting my extensor muscles in the back of the neck strengthened.
CTJameson
at the end of 12 weeks you go back to MD and they see what, if any, changes you have in strength, mobility and stamina
CTJameson
thats great Mike.
CTJameson
I think the worst thing we can do is NOTHING
MikeG
I believe in exercise - in moderation.
MikeG
yep - that's why I'm avoiding going to the chair 100%
David
A number of men have reported positive results from exercise and it will good to have the results of that clinical trial to use in determine what may be possible regarding maintaining or improving our abilities
CTJameson
Yes, if I push myself I am sore and weaker for several days
Ron M
I agree moderation is the key. You don't want to over do it and break the muscle down so much the tissue can't repair it self.
CTJameson
I can't walk long distances, but I still want to power myself so I am getting a manual wheelchair
CTJameson
sfurman, are you new to the chat?
Ron M
Thats smart Mike. Hold off as long as you are safe
MikeG
yes, even if it means breaking a bone now and then... :)
wildeman44
Whats the average age group here??
David
I too have had to learn the hard way what effort is too much and then have a couple days of pain/regret.  At least I am not pushing as much and so the relearning episode are more infrequent
jerryf
50
CTJameson
40
David
I am 60
MikeG
65
CTJameson
I was diagnosed at age 33
wildeman44
Thanks!  54
Ron M
Ro M 51
MikeG
wildeman44 - what's the 44, your CAG repeat count?
Gary_KC
57
wildeman44
Anybody going to the conf in San Diego?
CTJameson
wildeman and jerryf, I would highly recommend the KDA conference in November
jerryf
I am still working a fairly physical job, HVAC
MikeG
I am.
wildeman44
Just a lucky number...
MikeG
:)
David
Yes I will be at the conference in November
wildeman44
It will be nice to meet you guys
jerryf
Probably not this year
CTJameson
I want to go.  I have attended 3 and they all have been great experiences.  Very informative and I have made good friends (like MikeG!)
wildeman44
Mike!  What is a CAG count?
Ron M
Not this year. I waitng for the conference to come to the midwest. I don't travel well.
CTJameson
The CAG repeat on our DNA is why we have KD.
CTJameson
Anything over 30 is what causes it.  Mine is 52
wildeman44
I knew I had it but it took the doctors over a year to finally tell me I had KA
MikeG
That's the tripket repeat cout that defines the KD level.  You can fiind out your number when you get the KD blood test.
MikeG
triplet
MikeG
most people agree that the higher the number the earlier the onset - some thing it defines the severity of the disease...
David
What we have learned is for some reason a CAG repeat level over a certain number somehow disrupts the normal cell process which interferes with how the motorneuron cells "talk" to the muscle cells.
MikeG
mine is 47
CTJameson
wildeman, the KDA website has some good info about this... though I am now realizing that there is no layman info on the CAG count, just medical journal articles.
CTJameson
http://www.kennedysdisease.org/about-kennedys-disease/what-is-kennedys-disease
wildeman44
My doctor has not given me any information... Thanks
MikeG
have you had the genetic blood test?
wildeman44
Yes
Gary_KC
MikeG, I agee with you that the higher the number the earlier the onset. I have 33 but my onset was about 36.
MikeG
if you go to the MDA they will have that test done for you - free.  Then they will put you under their care.
Ron M
Gary, is your repeat 33?
wildeman44
Where is the MDA?
Gary_KC
Ron, Yes, I need to check the result report again.
MikeG
they have offices all over - what big city are you close to?
David
I think the level of normal activity for a man also has an impact on when a problem become too much to ignore.  I worked in an office my entire career and I think that contributed to why my diagnosis was not until my mid-fifties.  After reading about KD I was able to see earlier signs, some issues I had experienced decades earlier and just chalked it up to being out of shape etc.
wildeman44
LA, California
MikeG
same here, David
MikeG
okay, just look up Muscular Dystrophy Association in LA and give them a call.
wildeman44
Thanks
MikeG
YW
CTJameson
Luckily, I primarily work with my mind for a living.
MikeG
yes, same here.
MikeG
hi Connie!
CTJameson
jerryf, you are in a pretty demanding career.  How do you find yourself gettting along?
wildeman44
Fire Service for 32 years, still working...
CTJameson
good morning connie
MikeG
did you get any of those storms yesterday in Bradenton
CTJameson
WOW wildeman
wildeman44
Morning Connie
Ron M
I have read quite a few of the studies and I think that the higher the CAG repeat, the earlier the onset. That is almost fact. What I am not clear on is the CAG repeat to severity. It appears that we are all similiar at some point in our lives. But I keep trying to find studies to learn more.
MikeG
impressive
CTJameson
I would imagine that is physically demanding.
Ron M
G morning connie
jerryf
I notice that i get tired, but I can still get around fairly well
wildeman44
Working as a Battalion Chief, no more physically demanding work....
MikeG
Ron, that's why we want to do another survey and let the doctors and researchers tell us what they would like to see in it.
David
My 2nd cousin was a firefighter and recently switch to office work when that became too dangerous
CTJameson
I couldn't imagine doing firework or hvac.  I have trouble getting the lid off the jar :-)
wildeman44
Awesome
Ron M
Jerry, I was told by my neuro that tiredness is part of the disease. I have bouts of extreme fatigue
MikeG
me2, Jameson
Ron M
Mike, that is great. There are just not a lot of studies out there.
connie
Good Morning... sorry I was having trouble connecting.
MikeG
Connie, when is Stu coming over again?
CTJameson
fatigue was my first sympton of onset
CTJameson
luckily it is a very slow progression.
jerryf
the heat the last coupld of weeks has made me more tired, i am up and down stairs alot and up and down alot working on air conditions, I have a lot ot twitches and some cramps
wildeman44
How do you guys fight the depression???
connie
He is very busy with house reno right now. I thought this morning was wives chat.... sorry to interrupt.
CTJameson
wildeman, good question
CTJameson
I can't focus on what i have lost
CTJameson
I think on what I can still do and what I have
MikeG
I look on the bright side... KD is NOT life threatening.  And I could have something worse - like ALS!
CTJameson
My life is great.  I am a school teacher and I love my job.  I have an amazing wife and an active 6 yeaar old boy.
David
At last year's conference we had a psychologist and that discussion seemed to help, I think some of those sessions can be found at the KDA website -- right Mike?
wildeman44
It's hard, I had such an active life and now I am so limited...  And yes your right, there are a lot of worse things out there...
MikeG
no worrys, we're glad to have you join us - this is for any and everyone anyway.
Ron M
Jerry, I don''t know how you do it. I don't have that kind of strength anymore. It might be a good time for you to see if you can find a less physical career. I image each year it is going to get harder for you to do the physical part of your job
CTJameson
We have to adjust our lives because of the disease.   No doubt.
connie
Have any of you gone under a general anesthetic since you have known about your disease?
CTJameson
But as the wise John Coakley said to me, life is not over when you are in a wheelchair.
jerryf
i hope to keep working as long as possible to stay busy,
MikeG
yes, David, the link is: http://www.kennedysdisease.org/share-information/kda-conference-events/402-kdaconference
CTJameson
wildman, I can relate.  I used to love mountain climbing in New Hampshire.  Now my stairs feel like a mountain.
wildeman44
Yes!!!
CTJameson
I have taken on new challenges.  For instance, I play chess now.
Ron M
Connie , I have. I had cateract surgery for both eyes. The key was I knew I had to have plenty of blankets to keep warm. They had so many blankets on me it was hard for them to buckle me down but the blankets helped me with the cold.
wildeman44
Is it true that we can not rebuild any muscle??
connie
Ron, did you have to have a general anesthetic for that?
David
At this time I can still able to walk up a flight of steps, but that is one thing I learned to not just do it because I can.  Avoiding them has in part allowed me to do other activities more.  Using the stair just took too much effort and stamina.
MikeG
looks like that link may not work now... just search the KDA website for 2012 KDA Conference.
Gary_KC
Connie, Yes, I took a neck surgery for Lymphoma.
Ron M
Not sure if it was considered general. I was out though. They say twilight but I was out.
CTJameson
We have 5 cords of wood to stack.  I hate watching my wife do all the work (though she says she likes the work).  But I can't go out there and bend over 200 times.  So, I set up a chair and that allowed me to contribute to the effort :-)
CTJameson
wildeman, we'll never be competitive body builders... but I think if we are wise in our approach, we can do things to slow the progression.
David
That's the spirit Jameson, by not doing certain things and accepting that my wife has to carry the heavy loads now allows me to do some light housework.  It does not seem like a fair trade, but it is reality now.
connie
Gary and Ron, thanks for your answers... we have been worried for Stewart to have general anesthetic for a routine exam because we thought we had to be very careful about doing it. But, we are not sure what the precautions have to be. Unfortunately, as you know that most docs don't understand this disease and just think they will just do a normal procedure as with any normal patient. Do you know of the risks related to general anesthetic and where we can find out?
MikeG
Connie, here is the link for Surgery Concerms:  http://www.kennedysdisease.org/share-information/medical-info/76-surgery-concerns
wildeman44
I understand that approach, but we cannot build muscle, right
CTJameson
David, yes.  We do have to live in that reality.  One thing I have learned is that many people really want to help me (eg open a door, carry something for me, etc).  I used to not let them because I wanted to show I am capable.
wildeman44
CT, I'm there with you...
CTJameson
Now, I realize that if I let people help me it is an act of kindness on my part
connie
Thank you for the link... that will be very helpful.
CTJameson
because they feel good doing it
CTJameson
Plus, I actually am helped by them.
CTJameson
But it requires humility on my part.
Gary_KC
Cibbuem I think the KDA site has some information about the anesthetic. Please check the site.
David
Wildeman I think the short answer to your question is yes, when it comes to the typical thoughts on building muscle by tearing it down by working it to exhaustion.  For KD men that tear down is just too costly because it takes too long for the muscle to recover.  But I feel stronger and have more stamina than I did 4 years ago, so something has changed.
Gary_KC
sorry, I should have typed connie instead of cibbuem.
CTJameson
David, thats great.
connie
no problem... i was wondering if that was a treatment?
wildeman44
David, I do go to the gym at least 4 to 5 times a week and it seems to help.  I do get sore and it takes awhile to recover
CTJameson
My decline over any four year period has been significant, so I can't imaging that.  But I also have a high CAG count compared to most KDers
MikeG
well folks, I've got some Honey-Do items pending and need to go.  I hope everyone stays safe!  Until we chat again - take care!!!
CTJameson
bye Mike.
Ron M
I need to start my day also. Everyone be well and stay upright.
CTJameson
The chat is scheduled to end at 11:30.  But ya'll are welcome to stay and chat as long as you want.
jerryf
thanks for the info..talk again next month
David
Wildeman, I try to follow one of things I learned about smart exercise on the KDA website, basically determine was is 100% of what is possible and then never do more than 75% of that.  For example at times I will work too hard at a Physical Therapy session and then the next week I discuss it wsith the therapist so that we do not make the same mistake again.
CTJameson
wildeman and jerryf, it was great getting to know you.
connie
Good bye everyone and thanks for the good info. Blessings.
CTJameson
bye connie
David
Until next time, stay vertical everyone.
Gary_KC
It was a good chat this morning. Take care! Bye.
CTJameson
Yes, thanks everyone.
CTJameson
Any questions in the last few minutes wildman?
CTJameson
Or you sfurman?
wildeman44
Than you all for input!  I will learn a lot from you guys...  Thanks David!  I will follow the 75% rule.  I gotta go also.  Until next time...
CTJameson
take care
wildeman44
I'm good for now, I'll have plenty more later.
CTJameson
Alright.  Thanks for participating.