Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

Archives - 2015 and Older Transcripts

Topic:  Open Forum - Exercise

Guest:  None

Host:  Bruce Gaughran

Bruce
Good Morning
carofer
good morning bruce and hugo
Hugo Rodriguez
Good Mornig
Bruce
It is a beautiful day in Georgia.  Spring is here and everything is in bloom.
Hugo Rodriguez
In Mexico too
carofer
Sun is out now in California
Bruce
We had a nice Easter with 20 of our family at our house.  My wife did a great job, but worked too hard as always.
Hugo Rodriguez
This is my f
Gary_KC
Kennedy's Disease Chat
Hugo Rodriguez
irst time in the chat
Gary_KC
This is Gary. It is about 60 degrees this morning in Kansa City.
Hugo Rodriguez
Is someone going to participate in the clinical trial named Effect of Functional Exercise in Patients with Spinal and Bulbar Muscular Atrophy? Number: 11-N-0171 of the NIH in Bethesda, MD.
Gary_KC
Good morning.
Bruce
The KDA received an interesting inquirery this week.   A person experiencing swallowing problems saw his doctor and the doctor was considering using Botox to help with the issue.
Bruce
Welcome HUGO.  Thanks for joining us today.
Hugo Rodriguez
your welcome
Bruce
The trial you mentioned Hugo has been going on for almost two years.  The results will be published in the next six-twelve months.  I believe they are still accepting applicants, however.
Bruce
Gary, welcome.  How are you doing?
Gary_KC
Bruce, I am fine thank you. :-)
Bruce
The Botox question I could not answer so I went to a member of our SRB.  He felt Botox might cause more harm than good and to check on other possible treatments.
Bruce
Welcome Ron M
Ron M
Hello Bruce
Bruce
I believe even Chicago is going to have spring-like temps today.  Correct?
Hugo Rodriguez
I beleived that the trial was going to start, I offered myself as a volunteer, but later I have not received any communication
carofer
My doctor gave me Nitroglycerine for the "dry drowning" problem, but I never tried it
Ron M
Yes, nice day, my son has baseball practice. It is always better when it is nice
Bruce
Carofer, I have never heard of nitroclycerine being used for that.  I would be a little hesitant myself.
Bruce
My brother is a HS baseball coach in MN.  He said they started practice a few weeks ago when there was still snow on the ground.
Bruce
Ref. the swallowing, I recommended that the person discuss his issues with a physical therapist and see if he could get some swallowing exercises.  I do them several times a day and they have helped me.
Ron M
Now that is serious. My son has worked out indoors. This is the 2nd practice outside. The weather just hasn't warmed up until today
Ron M
Bruce, did your brother play baseball in college?
Bruce
I guess they could do like they do in Canada for early golfers and paint the ball black.
Bruce
He played football and baseball.  He is also an assistant coach on the football team.
Ron M
Nice, what college?
Bruce
Gary_KC, are you still taking dutasteride?
Hugo Rodriguez
I have been very lazy to practice any sport
Gary_KC
Bruce, yes, I am still taking it.
Bruce
Welcome FL-Don
Bruce
How is it going?
FL-DON
As usual, trouble getting in to chart
FL-DON
HI ALL
Ron M
Hugo, I am with you.
Bruce
Some people have had problems because of JAVA and the changes made to the software to make it safer.  AOL users continue to have problems.
Ron M
Hi FL Don
Bruce
Gary, I continue to recommend dutasteride as a potential treatment with the understanding that it only works for some people (approx. 50%).  I have been on it for over two years now.
Hugo Rodriguez
I am having taking dutasteride during something more than 6 months for treatment of the prostate, not for KD
carofer
hugo, send an email to This email address is being protected from spambots. You need JavaScript enabled to view it. -- she is always looking for volunteers for the trials
Bruce
Fortunately, the sudden excitement for antler velvet has died down.
Bruce
Hugo, it has been shown to slow the progression of KD in about 50% of the people taking it.
Gary_KC
Bruce, I beleive it is helping me. It helps my muscle weakness, fatigue and stamina.
Hugo Rodriguez
I really don't know about the pain in us with KD, the main sympton is weakness,
carofer
bruce, why "fortunately"? has igf-1 via antler velvet been shown to be bad?
Bruce
Gary, stamina and reduced fatigue are too important traits I have seen with the drug.
Gary_KC
Bruce, fortunatelly, I don't have any side effect.
Hugo Rodriguez
I suffered colics at the beginning of the year, but was conseguence of colitis
Bruce
carofer, the IGF-1 in the antler velvet does not work for those of us with KD.
Hugo Rodriguez
recently I was with pain at the low back but I don't know if the cause is KD or the herniated discs I also suffer
Bruce
Those with KD have been cautioned to stay away from it.
carofer
bruce, how do you know that? I thought it was an open issue.
Ron M
Anyone hear any word on the exercise study?
carofer
I heard the doctor say that it has "not been proven" to have positive effects. Was there a warning against it, too?
Bruce
We discussed it with the SRB because we were getting so many questions on it.  The IGF-1 that is still being tested is a specific compound focused on muscles and the delivery method has been an issue being tested.
Bruce
Ron, the study results will be published within the next 6-12 months is that last I heard.
Bruce
If I remember correctly, IGF-1 for muscles that NIH is testing is for pre-or-early onset.
Hugo Rodriguez
Before my diagnosis, I practiced some exercise at the gym and my wife told me that was going benneficial
Hugo Rodriguez
Later I, I suspended it for economic reasons
Ron M
Thanks Bruce. Medical studies sure move slow. I was hoping for quicker results
Bruce
Hugo, a 'smart' exercise program is beneficial in my opinion.  I have been exercising for years.  We are awaiting the actual results of the study to see what they have found to be beneficial.
Hugo Rodriguez
Now that I beleive that I should start again not ignoring the guide published at the KDA pages
Hugo Rodriguez
Thank for your oppinion Bruce
Bruce
Hugo, the idea is to exercise (stimulate) the muscles and motor neurons without over-stressing them.  If you do too much it can cause further damage.
Bruce
The exercises I perform daily are all done at home without any special equipment.
David
66.161.235.235
David
Kennedy's Disease Chat
Bruce
Morning David
David
Morning all sorry to be late
Bruce
David, you are never late ... starting starting a little later. :-)
Bruce
I have added a few more exercises recently that focus on the upper arms, shoulder and neck.  I already did some for this area, but these really seem to help.
Bruce
Ron, carofer, and perhaps others, are you being dropped by the chat room program?
Ron M
Yes, don't know if it is my router or something else
David
This year I too added a couple of new items focused on shoulders and hips.  I have continued the program I learned at the NIH exercise trial because that also seems to help me
Gary_KC
Bruce, I am uisng a padal machine. It helps my blood carclulation in my legs.
carofer
chat blew me away on firefox. it is working in ie now.
Bruce
I need to update my exercise guide now that I have been performing these for several months.
carofer
David, i too am continuing the exercises from the trial.
Bruce
carofer, I use FF and haven't every been dropped.  Interesting...
Hugo Rodriguez
David, could you give us a brief idea of the NIH exercise program?
Bruce
To say the least, I was pleased to hear about the exercise trial.  I am hoping that when the results are published it will encourage more people to exercise.
David
On occasion I am still using the school of hard-knocks and do too much resulting is a couple of days of extra pain.  So far though taking it a little easy but continuing most of what are now my normal routine allows me to recover.
Ron M
This is the second time. Last chat wee were all droped. I am on IE and before last month. Never had a problem. Struggling today though to stay connected
Bruce
Yes, David, earlier in life I believed that the more the disease progressed, the harder I should exercise.  WRONG!  Boy, did I suffer.
Bruce
I still laugh thinking about me stumbling or having a knee buckle on the tredmill and being shot out the back end.  I started using the kill switch string and that helped.
David
Hugo -- I recently traded message with Angela the research nurse and she mentioned that they would still like a few more participants and would encourage you to consider taking park if possible.  They have you come in for a fews days to learn an exercse program (I think there are two but no sure) then you dothose for 12 weeks and return for more testing.
Bruce
Angela is great!  She is so supportive of all of us living with KD.
carofer
There are two groups: control group and test group. Each one has a different set of exercises.
Hugo Rodriguez
I am still waiting communication from her
Ron M
I need to get my son to baseball. So I wish everyone a good weekend.
David
Take care Ron M until next time
carofer
NIH will only pay for transportation within the US. So you have to get across the border to get compensated for transportation.
Bruce
Gary, getting back to the padal (pedal) maching, I believe you can set the tension?  How long and how often do you exercise?
Bruce
Morning Dorsey
dorsey
Morning guys sorry I am late first Saturday off in awhile, wanted to be here
Hugo Rodriguez
Yes I understood that from her
Bruce
Thanks for joining us
Gary_KC
[u]Bruce, I do 15-30 minutes everyday.
Bruce
Good for you.
Bruce
Is it a recumbant (sp) machine?
Gary_KC
Bruce, it is a powered assisted padal machine. So I don't feel much tension.
dorsey
I just was recently prescribed Albuterol oral pills by my doc at the MDA/ALS clinic. He said there were positive results from Japan with it.
Bruce
Would you send me information on it please?
David
Has anyone heard of using a magneseum (sp?) suppliment to help with muscles, tendons and ligaments?
carofer
Dorsey, was that for choking symptom?
Bruce
Dorsey, what is the actual drug?  What is it supposed to help with?
Bruce
David, I take magnesium suppliment daily.  I am not certain whether it helps or not.
dorsey
No it has been shown to increase muscle and enhance in sports banned by iocc and things like that
dorsey
It is more for helping breathe maybe asthma but there have been sports enhancement found with the drug
Bruce
I just looked up the drug.  What is albuterol inhalation? Albuterol is a bronchodilator that relaxes muscles in the airways and increases air flow to the lungs. Albuterol inhalation is used to treat or prevent bronchospasm in people with reversible obstructive airway disease. Albuterol is also used to prevent exercise-induced bronchospasm. Albuterol inhalation may also be used for purposes not listed in this medication guide.
carofer
And, "Inhaled albuterol is also sometimes used to treat or improve muscle paralysis (inability to move parts of the body) in patients with a condition that causes attacks of paralysis."
dorsey
Yes but prescribed the pill form I guess the inhaler does not provide the same benefit
Hugo Rodriguez
Do someone use yoga to improve breathing?
Bruce
I hadn't heard or read about a trial using Albuterol.  I'll check with Ed and the SRB on this.  Thanks for the info dorsey.
dorsey
Thanks Bruce.
Bruce
dorsey, have you experienced any side effects?
dorsey
Have not taken yet been battling the flu.
David
Early in my KDA adventure I had a few appointments with a speech therapist and she gave me a number of exercises, some of which I had already seen in the exercise material Bruce has on the KDA site.  I had been using a 10-15 minute speech and breathing routine at least 5 days a week now for more than 3 years and I feel the effect if I skip more than a few days
Bruce
Sorry to hear that dorsey.  The flu knocked me on the butt this January.  It lasted three weeks.
dorsey
yea its been a week and just now feeling well.
carofer
Has the KD done any work with the "bionic" walking devices like Indego, ReWalk, or Ekso?
Bruce
David, would you mind sending me the exercises?  I can post the ones you feel are working on the website.
David
I have been part of a choir for most of my life and those exercises have really helped me to stay active singing
Bruce
carofer, I follow these devices closely, but do not know of anyone with KD using them.  They are expensive, but they do show promise.
David
Yes Bruce I will send them to you.
Hugo Rodriguez
Flu is terrible for us, is it not?
Bruce
Yes - even if you have the flu shot, it still can hit you.
Bruce
Hugo, have you had the pneumonia immunization?
Hugo Rodriguez
No Bruce, only the influenza vaccine
Bruce
Hugo, I would discuss it with your doctor.  It is highly recommended for those of us with KD.
dorsey
Hugo Rodriguez its not good I got it fought it off then got a viral infection is what my doc is saying been coughing up some form of blood from my lungs for a few days now but its clearing up lungs feel much better
David
Bruce I asked my doctor a couple of years ago about the pneumonia vaccine and he wanted me to get the shingles vaccine first.  I need to ask about getting it again, thanks for the reminder.
Hugo Rodriguez
Probably the one you ask, is the pneumococo vaccine that was asked to get, but I lost the chance by b
Bruce
This year's flu strain has been nasty.  I know so many people that have had it.
Bruce
I have been considering the shingles vaccine myself.
carofer
I had a cough that lasted more than three weeks. I think it's finally gone now. Had a flu shot, pneumonia, shingles, etc
Hugo Rodriguez
thanks for your comment Dorsey
Bruce
I laughed when I read that more than 1/3 of the people who had the flu shot still get the flu.  It again shows how tough this strain was.
David
You are right about the flu Bruce; I have been avoiding my wife for the last week since she has just finished the flu medicine and feels much better now but far from 100%
Bruce
Whenever a family member or friend has the flu, I refuse to get near them.  It just isn't worth it.
David
Margy was also one of those "lucky" 1/3
carofer
I missed seeing my newest grandson because I was coughing. Boo.
Bruce
I would probably have been fine, but it was when I was taking a blood thinner for the clot in my leg and and had to go to the doctor's office every week to have my blood checked.
Gary_KC
Yes, it is the best way to keep away from people who has flu. :-)
Bruce
I make the sign of the cross with my two index fingers and just say ... "Stay away".
Bruce
Well, I have sure enjoyed chatting with all of you today.  I seem to always learn something.
Bruce
BTW, if you haven't read the KDA's 2012 annual report, I would recommend it.  We had another good year.
carofer
I enjoyed it too, but I think we should try to get some guest doctors or researchers in the chat again...
David
It was a good discussion this morning thanks all, until next time.  Looking forward to spring
Hugo Rodriguez
Thank you very much guys. It was very illustrating to know about KD from people that has it. I hope to hear from you, next may.
Bruce
I will close with "Stay upright".
Gary_KC
It was a nice chat today. Enjoy a wonderful spring weather. Thanks lots.
carofer
see you next time..