Kennedy's Disease Association

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Kennedy's Disease Chat Transcript   07-07-12

Topic:  Open Forum

Host:  Bruce Gaughran


Bruce
Morning Ted.  How are you doing?
Bruce
Did the storms cause you to lose power?
TedA
Great Bruce. How about you?
Bruce
Hanging right in there, guy.  No complaints because no one listens anyway.
TedA
Have not lost power.   Were in Lock Down 2 x due to tornados while at Verterns Wheelchair Games events
Bruce
Morning Dorsey.  How are you today?
Bruce
Morning Mattsenac.
mattsenac
Hey Bruce
Bruce
We had bad storms two nights ago with 50 mph sustained winds and gusts a lot higher.  We lost power, had some tree damage, and the property looks like a tornado hit, but we survived.
Dorsey
Good morning I am well
Bruce
Mattsenac, did you have any of the flooding from the tropical storm?
Bruce
TedA, are you getting kicked out or is it something else?
mattsenac
Just a few streets, but not on our street.
TedA
Operator error
TedA
Error
Bruce
This has been some year for weather.  We have been over a 100 for most days this last week.  Too hot!  Today it is supposed to be over 100 again.
TedA
105 is forecasted high here in Richmond, VA today
Bruce
On days like this we get everything done early and then hybernate.
Dorsey
Yep it is hot here in SC also 100's plus daily
Bruce
TedA, the Veterans Wheelchair Games sound interesting.
Bruce
Morning Gary, how are things going?
Gary_KC
This is Gary. It is very hot over 100 degrees in Kansas this week.
Bruce
We are all complaining about the heat.
mattsenac
Not me I love it
MikeG
Morning everyone!
Bruce
For those of you expecting Ed to be the host today, you will have to put up with me.  He let me know Thursday he was going to be out of town this weekend.  Sorry, I always enjoy Ed's involvement in the chat room.
TedA
They were the 1st time I partisapated.     This was the 32nd time they had the Games and 2nd time in Richmond where they started.
Dorsey
Yea i have been golfing in it the cramps get kind of bad after all the sweating
Bruce
Matt, some people just don't know when to come in from the heat!lol
Bruce
Dorsey, staying hydrated is difficult when it gets this hot.
MikeG
I'm like you Matt - I'd rather have 95 than 35 anytime!
Bruce
Mike, I didn't see you sign in.  Sorry
TedA
Warm is good but NOT HOT!   Cold is not good either!
MikeG
stealth mode... :)
Bruce
Yup, Ted, we are never satisfied.  Too hot, too cold, too dry, too wet ...
Bruce
Morning rmof
mattsenac
Is anyone taking any westernIs anyone taking any western medicine that actually is helping muscle strength with Kennedy's Disease
rmof
Good Morning All
MikeG
not that I know of Matt
Bruce
Matt, some of us are taking dutasteride and finding it helpful.  Others have taken it and didn't experience any benefit.  I have been on it for almost 18 months and I swear by it.
Dorsey
western medicine? Just taking vitamin D and E.
TedA
Still on the Avadart / Dutasteride
mattsenac
Thank you I will look that up
rmof
I just take vitamins and fish oil
mattsenac
I have tried that with no positive effect
Bruce
Dr. Fischbeck turned me on to it and I discussed it with my doctor.  I have been keeping a journal of my experiences and it has been very positive.  My wife thinks I am at least as strong and possibly slightly stronger since I began taking it.
TedA
I was on it in the 2006-2008 Clinical traial then off for about 12 months and been on it ever since.
Bruce
Some people took the generic form of Avodart and found it didn't help.
mattsenac
Very helpful information THX Bruce
Dorsey
Bruce Avodart? is what you are taking?
Bruce
Yup!
Dorsey
K I go for my 6 month check up i will ask about it
TedA
Bruce,   I feel the same way, just as strong and in some ways stronger.
Bruce
Kurt Fischbeck commented that about 50% of the people saw a slight improvement or no decrease in strength while the other 50% did not see any benefit.
mattsenac
Its worth a shot
Bruce
Dr. Fischbeck's comment was, "Bruce, it wouldn't hurt to discuss it with your doctor."
Dorsey
anyone taking creatin?
mattsenac
Side effects?
rmof
I am not
Bruce
Now, Mike, had a different experience.  I believe you said, Mike, that it was good for about six months and then you reverted back and saw no benefit.  Is that correct?
Dorsey
creatine i mean
Bruce
Dorsey, there have been several that took creatine, but there seemed to be no benefit and the doctors had some concern with those taking mega dosages.
mattsenac
Any side effects from Avadart / Dutasteride?
Bruce
Matt, I have not had any negative side effects.
Bruce
Of course, there are some effects that might impact a younger man with a healthy sex life.
Bruce
That I cannot comment on, however.
Dorsey
eww i dont like the sound of that
mattsenac
Great Bruce well yes lots of drugs have those negative effects
Bruce
I figure at my age anything is worth a try especially if Dr. Fischbeck believes it is worth it.
mattsenac
MOre strength I will take that had many good years of sex
MikeG
Sorry... just spent the last 15 mins trying to help Don get on the chat.  No luck...
Bruce
Ted, I believe you noticed a difference when you discontinued it and that is why you went back on it.  Is that correct?
mattsenac
Where is Dr. Fischbeck?
MikeG
has anyone else had problems getting on the chat with AOL?
Bruce
Mike, see my question to you above on your experience with Avodart.
rmof
Bruce, is Fischbeck your Neurologist?
Bruce
NIH
Bruce
No, he is on our Scientific Review Board.  I did see him when he was still at the U. of PA.  He was the one that led the dutaseride study.
TedA
Yes,  I had several falls after the CT and then aI found out that I had been on it so I got back on ASAP.    Would not do without it ever again!!
Bruce
Mike, how is Don?
Bruce
It is weird how it helps some and not others.  I wish they could explain that.
mattsenac
Thank you Bruce for Dr info
Dorsey
I have been trying to be seen at NIH the nuurse said she would get me an appt but that was like 6 months ago. I wanted to go on the exercise trial but I am not a good candidate
Bruce
On the kda website and my blog are info on the actual study.  You could print it and take it to your doctor if you want.
TedA
Take the real dutasteride not the generic.
mattsenac
sounds good thx
rmof
Thanks
Bruce
Ted, yup, that is important.
MikeG
can't scroll back to it... I had a lot of strength at first but after a couple of years I felt it was not helping anymore.
mattsenac
OK what about eastern medicine? Anyone finding any help there?
Bruce
I saw my doctor in January and he felt I should stay on it based upon his observations and my experiences.  That was good enough for me.
Bruce
Matt, nothing recordable.  There are a lot of promises being offered on web sites and some associates have even tried things, but please be careful and always check with your doctor first.
Bruce
I do believe that Qigong was/is very helpful.
TedA
My kayaking partmer commented recently how I am paddling more and stronger then last summer.
mattsenac
Yes I know thx I have tried some things but most are just gimmics and idiots trying to steal money from desperate people
Bruce
My exercise program today is great and it has made a world of difference for me anyway.
Dorsey
mattsenac I am new here just curious how old are you?
mattsenac
Bruce do you have your regiment on paper anywhere? I am 48
Bruce
Someone recently wanted to try stem cell transplants that were being offered in Germany and Indonesia.  No Way!
Dorsey
k 44 here you still getting around ok?
mattsenac
Excercise regiment sorry
mattsenac
No been in a power chair since 2001
MikeG
I've got too many thing going on right now - I'll chat with everyone later...
Bruce
Yes, my exercise program is on the KDA website (http://www.kennedysdisease.org/share-information/info-guides).  It was developed by a physical therapist for my situation, but it would be a good starting place to discuss with your doctor and PT.
TedA
I donated skin cells and they were suppose to grow them and do research on them.
Dorsey
what is your CAG repeat mattsenac
mattsenac
Yes I am in Florida and just started at Mayo Clinic
mattsenac
CAG repeat sorry I dont know the abbreviation means
Bruce
Matt. I primarily use a wheelchair also.  I have not missed one day of exercise in over 3½ years.  I exercise 90-100 minutes on Mondays-Wed-Fri and 20 minutes on Tue-Thur-Sat-Sun.  I swear by it, but perhaps I am just a freak of nature.
Bruce
I am 65, by the way.
Dorsey
mattsenac I saw doctor Kathleen Kenelly she is awesome she told me right away that i did not have ALS
Bruce
My CAG repeats are 53
mattsenac
Sounds like your a real trooper Bruce as we all are with the garbage in our system
Dorsey
mattsenac Dr Kenelly is a Neuro at Mayo clinic in Jacksonville FL
Bruce
Matt, CAG triplet repeats are part of you DNA.  It reflects whether you have KD or not.  It is part of the androgen receptor gene and shows a mutation when the repeats are over 40.
Bruce
Matt, I just find that exerise and stretching has helped with my strength and pain.  If it didn't, I wouldn't do it.
mattsenac
I am going to be seeing Dr. Kennelly is a few weeks I just was told I have Kennedys but since 1995 I was told ALS- LYME- SMA I will find out what my CAG repeats are with a follow up visit
Bruce
Matt, your doctor should have conducted a DNA blood test to confirm KD.  He should have the information on your CAG Repeats in your file.
Gary_KC
I found a new SBMA research report.
Gary_KC
One new SBMA research report was published in Nature Medicine in June 3 by Nagoya University in Japan.
mattsenac
Yes they called me and confirmed KD I just wasnt told yet I have follow up app 1st of Sept
Bruce
Gary, you have been relatively quiet today.
Bruce
Gary, send me the link please.
Gary_KC
The title is “Viral delivery of miR-196a ameliorates the SBMA phenotype via the silencing of CELF2”.
Gary_KC
http://www.nature.com/nm/journal/vaop/ncurrent/full/nm.2791.html
Bruce
I love these research reports.  I never understand them.  I always ask Ed, our resident biology professor, to translate them into something I can understand.
Bruce
Thanks, Gary.
Gary_KC
Bruce, you are welcome.
mattsenac
I agree totally
Bruce
Gary, that link didn't work for me.  Please send it via email to the This email address is being protected from spambots. You need JavaScript enabled to view it..  Thanks
mattsenac
I am going to the Coke Zero 400 in Daytona for tonights race so I am out of here but will be back and thank you all for the great information I will see you next month Keep smiling!!
Gary_KC
Bruce, OK. I will send you it after the chat.
Dorsey
Most of you guys going to the conference in Oct
Dorsey
Have fun Matt
Bruce
The number of recent research updates on KD has declined recently.  There has been some reports, but they are just republishing the original reports.
rmof
I don't think I am going to make it.
TedA
I am not going.
Bruce
Dorsey, I have difficulty traveling any distance these days, so I cannot attend.  My earlier experiences at the KDA conferences were wonderful.  Just spending time with other associates and being able to rub shoulders with the researchers is great.
Dorsey
Is there just very little horse power research wise for KD?
rmof
Wondering, are the conferences ever held in the midwest or are they always along the coasts?
Dorsey
Yea I am going to go
Bruce
Dorsey, since KD is a rare disorder, less research is focused on it because the big drug companies can't get rich on anything that only effects 1 in 40,000.  Fortunately, there is a good base of researchers still working to find the treatment.
TedA
Traveling has become more challenging for me also.  Need several things to assit me with shower, toilet, etc.
TerryW
Hello all
TedA
Hi Terry
Bruce
rmof, we always have the conference where the neurologists hold their annual conferance.  It was in Chicago a few years ago, for example.
Bruce
Morning Terry
rmof
Good to know. Thanks
Bruce
Terry, how are the horses, dogs and cats doing?
TedA
And Susanne
Bruce
One of the best things about the conference are the friends you make.  They become lifelong friends normally.
TerryW
They are doing ok,  quite a handful to take care of.
Dorsey
Is Dr Fishbeck usually at these conferences?
Bruce
Yes, along with several other researchers.  There is a private session after the conference for the doctors to meet and discuss their current research.
Dorsey
ok
TerryW
Can't seem to stay in chat,   hmmmm
Bruce
We are blessed to have a great Scientific Review Board.  They are a great resource and an even better support group.
rmof
Bruce, I believe that. I have always had a hard time traveling. I will hope they hold one closer to Chicago so I can attend.
Bruce
rmof, watch for the review of the conference chat usually held by Ed.  He will discuss current findings, etc.
rmof
I will do that that. I assume there will be a link on the KD website
Bruce
Yes and a reminder email will also go out to everyone.  It will take place in November or early December.
rmof
Thanks
Dorsey
guys I am out going to get moving on the day. God Bless
Bruce
Ted, you mentioned canoeing.  Where do you normally go?
Bruce
We owned a 17' whitewater canoe for years and along with sailing it was our water fun.
TedA
Kayak on the James River.   Mostly flat water but there is the flow of the river to content with.
Bruce
The James is a nice river.  We did some kayaking in Monterey once.  It was great fun especially with the sea otters all around.
TedA
Check out the web site for my almost approved nonprofit Sailing 4 All   www.gosailing4all.org
Bruce
Almost approved ... glad to hear it is getting very close to approval.
TedA
Filled IRS Form in Dec 2011 and they are reviewing Oct 2011 currently
Bruce
I miss sailing the San Juan islands.  We chartered (a 41' C&C exquipt for racing) several years.  We also did some sailing in J boats.  Great fun!
TedA
Also on Facebook page   Sailing 4 All
Bruce
To me, giving up hiking in the mountains and sailing was the most difficult.  We were always so active.
rmof
Bruce, how old were you when you gave up the hiking
Bruce
Now we live surrounded by forest and I cannot really explore it like I would like.  rmof, it was in the early 50s.
Bruce
I found myself falling down the mountains more that I was hiking down them.:(
TedA
Sailing 4 All is to get people in wheelchairs and other disabilities out on the water.   Sailing in Richmond is not good.   Have to go to the Bay
Bruce
Yes, the Bay is a great place to sail.  I admire your effort and patience, Ted.
rmof
That is a loss at a still young age.
Bruce
Yup, but it made me appreciate what I still have and can do even more.
TedA
Looking for more board members and volunteers to help with some of the Admin items.   Our 1st cruise in July 12th hosted bt the Director of the local PVA chapter who lives in a Community that rents pontoon boats to residents.
Bruce
I found it fun to out hike others ten years younger than me.  Especially at the 8-10,000 foot elevation.
rmof
I am going through that now. Getting harder to walk long distances. Losing my balance frequently. What can you do. I have to find some other hobbies
TedA
Other Peoples Boats (OPB) till we can get our own.
Bruce
This has been a fun chat today.  I appreciate everyone's participation.  We'll have to do it again soon.
Bruce
Yes, rmof, keep busy and stay challenged with new hobbies and activities you can still enjoy.  The secret to life is to ENJOY IT!
TedA
Thanks for being a great Host Bruce.
Bruce
My pleasure.  You guys make it easy.
rmof
Sounds good. Have a good week everyone. Thanks for Hosting Bruce.
Bruce
As we always say, STAY UPRIGHT!
Gary_KC
Stay cool. Bye all.
rmof
yes
TedA
You Too!
Bruce
Thanks again.  It is now time for lunch.