Kennedy's Disease Association

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Kennedy's Disease Chat Transcript   05-05-12

Topic:  Exercise and Kennedy's Disease

Host:  Bruce Gaughran

 

Bruce
Morning Kent
916kent
Good morning Bruce
Bruce
How are things in California this morning?
916kent
All is well. How about you?
Bruce
Just fine, thanks.  We need rain and a little cooler temps and things would be even better.
Bruce
Morning Dorsey
Bruce
How are you today, Dorsey?
Dorsey
Morning guy's i always wanted to make the chat and finally able to
Bruce
Morning Gary
Gary_KC
Good morning! This is Gary joining in from Kansas City. It is high humidity this weekend.
Dorsey
Good thnak you
Bruce
Well, welcome again Dorsey.  We are glad you could join us this morning.
Dorsey
Thank you
Gary_KC
Hi Bruce.
Bruce
Gary, our humidity is high, but we are not getting any rain (already 3 inches behind).
MikeG
morning all
Bruce
Morning Mike
MikeG
hi Bruce
Bruce
Mike, Dorsey is a first timer
Gary_KC
Bruce, we don't have much rain either so far this spring.
MikeG
great - welcome, Dorsey
Bruce
Morning Paul
Bruce
Morning rmof
rmof
Morning Bruce
Dorsey
Thank you Mike
916kent
It is a fine Spring day here in California.  Warming up this week to 85 degrees.
Bruce
Let's see ... CA, TX, NM, IL, FL, GA  ... well we need some northwest or northeast folks to have a quarum.
Bruce
Well, is there anything specific someone would like to discuss this morning?
Dorsey
Yea the weather in Las Cruces has been really nice, been visiting my brother. I go back home to SC tomorrow
Paul Sramek
Good Morning from Dallas
MikeG
where in SC, Dorsey?
Bruce
Dorsey are you a Tiger or Gamecock fan ... or niether?
Dorsey
Columbia
MikeG
we used to live in Taylors, outside of Greenville.
MikeG
very nice place!
Dorsey
Neither grew up military Texas/Cowboys fan my dad is originally from Texas
MikeG
... in FL now - even better!!! :)
Dorsey
My parents retired in the Panhandle area Crestview Fl
MikeG
I'm originally from Houston
Bruce
I am thinking about writing an article about acceptance ... another in the series on this subject.  It seems to come up quite often in emails sent to the KDA or my blog.
MikeG
nice - we going through that area in a couple of weeks on our way to San Antonio for my Air Force reunion
Bruce
San Antonio is a nice city.  I like both Austin and San Antonio.
rmof
Acceptance is everything but it can be hard to come by. It is an interesting topic to write about
MikeG
yep - that would be good Bruce.  We all go through a period of denial...
Dorsey
My dad and brother retired Air Force  I went another route Navy enlisted to Army as an officer
916kent
Was wondering if there is any of you that have broken a hip and had a hard time recovering?
rmof
I have not broken a hip yet
Bruce
Yes, this article will be focused on accepting, but not giving in.  Fighting to retain capabilities, but not fighting the fact that you have the DNA defect.
MikeG
yep - I know a lot of Navy people.  I was in ECM - Countermeasures.  Nave taught electronics a little different from the rest of the worls...
Bruce
Not a hip, Kent, but I broke my tibia and fibula a few years ago and that was difficult for me.
Dorsey
I still get around well climb stairs able to run and so on but I feel out of breath very quick is that common?
MikeG
that's about as bad (or worse) than a hip!
Bruce
Was it a fall, Kent, that caused the fracture?  How long has it been since the break?
Bruce
I will say that my fall was a wake-up call for me.
Dorsey
I saw Ed able to run marathons and so on but if i climb 3-4 flights of stairs I feel like i ran a mile plus, I use to be very active it is hard to cope with not being so active
Bruce
Dorsey, that is great.  It has been quite a while since I could climb stairs.
916kent
Yes.  I slipped on my hard wood floors in 2008.
MikeG
same here - I have a hard time with curbs now...
Bruce
WOW 2008!  That is a long time.  What problems are you having with the hip today?
rmof
Dorsey, not sure as a whole but I have felt out of breath most of my life. Never been able to get into cardio shape even though I have a lean build.
Bruce
I miss not being able to hike in the mountains and woods.
rmof
I have just crossed that path. Had to give up my weekly walks. It was hard
MikeG
I use a walker now - it really hels to prevent falls
Dorsey
Thanks rmof that is how I feel now just get winded somewhat easily or feel that way
Dorsey
rmof just curious how old?
Bruce
As I mentioned, the last breaks for me were a wakeup call.  I needed to be more careful and use a mobility device to insure it didn't happen again.  My orthopedic surgeon gave me a lecture about what would happen if it happened again.
rmof
50 and you?
916kent
I went through extensive therapy.  Today I am wheelchair bound.  Can only walk a few steps.  The injury has really sped up the affects (effects?) of thedisorder.
Dorsey
43
MikeG
I'm 64 with a CAG repeat of 47 - still walking... somewhat.
Bruce
Kent, I would recommend that you discuss this issue again with your doctors.  It is important to exercise your muscles regularly and not feeling comfortable with your hip strength has to weigh on you.
Dorsey
I am still able to golf 1-2 times a week so I feel like I am still somewhat normal besides the feeling of breathlessness sometimes it feels worst after eating and activity
MikeG
I used to run 10Ks like Ed, but that was when I was in my 30s.
Bruce
Part of any good exercise program for those of us with KD has to include breathing.  It is important to breathe deep several times a day and to cough hard several times a day.
Dorsey
44 CAG. I tried to get in the exercise trial they declined me said I was to strong for it was hoping to help
Bruce
My CAG count is 53.
916kent
My Doctor said that the muscle atrophy has pushed up t
MikeG
I used to come in somewhere in the middle of the pack until about 39 when the KD started to kick in.
rmof
The problem I have had recently with the KD is that I can't walk or run long distances so it is hard to get into a better cardio state where I wouldn't feel the breathlessness
Dorsey
9916kent where are you seeing the atrophy?
916kent
Ooops. the atrophy is hard to recover from for SBMA patients.   I went through extensive therapy for two years. I
Bruce
Anyone who knows me is aware that I am an exercise nut.  I exercise every day alternating between a long program (90-95 minutes) and a short program (15-20 minutes).  It keeps me feeling good and maintains a certain level of strength.
Dorsey
916kent I see it in my left hand and forearm it scares me, I worry about ALS vs Kennedy's
rmof
Bruce, are you able to do anything for cardio or is it all strength related.
Bruce
Kent, ask your doctor about a PT that has worked with patients with a progressive disorder.  They know what can help and what might be more harmful.  My right hip use to pop in and out of place quite often.  Since I began my daily exercise routine, that has not happened (almost three years now).
Dorsey
but I am still strong able to do 2-3 pull ups but was advised by doc not to got to failure on the pull ups to do 1 rest and come back and do one. I miss the gym
916kent
With in the last year I have noticed a loss of arm and hand strength.  I can only raise my arms to about my eye level.  Never thought reaching for a glass in the cupboard would become a struggle.
MikeG
when I was first diagnosed the doctor saw it in my left hand - the area in between my thumb and index finger.
Bruce
rmof, it is both.  The idea behind the program I use is to not try to build muscles, but to maintain them and keep the motorneurons firing.  So, I do more reps with breathing exercises to keep the heart and lungs functioning at a higher level.
rmof
I should probably be doing more of that
Bruce
rmof, I use light weight or just gravity for my weight program.
Dorsey
MikeG any in the forearm area? I was originally told I might have ALS so I have quite a fear of that still
Bruce
I was still climbing mountains in the late 40s and falling down them quite often also. :-)
MikeG
not anything noticeable
MikeG
:)
916kent
I have been using therabands which are long rubberbands for exercise.
MikeG
yes, I've used those also
Bruce
I was also diagnosed with ALS originally.  How many others were misdiagnosed?
Bruce
Me too, Kent
rmof
Wondering. I battle fatigue a lot. Anyone else have this. If so how do you manage it?
MikeG
mostly for therapy after an injury
Dorsey
yea no one really notices it but I see it. And the realization of it all kicks in and I think to myself this is really happening
MikeG
rmof - you just have to know your limits and when you're about there - rest
Dorsey
rmof not really fatigue but I feel winded with some light to moderate exertion
Bruce
Fatigue can be an issue.  Since I started exercising daily, that has become less of an issue probably because I am stimulating the muscles more.  When I was younger, fatigue was a major issue after I 'over-did' (hiked too long, climbed too many stairs, walked to far, etc.)'
916kent
timing is everything.  Overdoing it just astrobates the problems.
Bruce
For me, I had to learn the hard way to only practice "smart-exercises'.
Paul Sramek
I battle fatigue also @76 Yes the Dootors thought I had ALS. My count 44.
rmof
I try and take it easy but with work it can be hard. I get home and can't do much. There is an exausted feeling. I will try and exercise more see if that helps.
Bruce
Fatigue is also more noticeable when you are not breathing properly.  Muscles need oxygen to function well and to recover faster.
Paul Sramek
I am able to work most of the with out a rest.
Dorsey
Paul Sramek wow 76 thats great gives me hope I have been thinking that making it to the mid 50's might be great for me
Bruce
I have a brother with KD that is 76 and he still has an exercise program that he uses (modified for his age and capabilities).
Gary_KC
Bruce, why we have fatigue qucikly? Lost muscle and nuerve???
Dorsey
Paul Sramek do you still get around somewhat unassisted?
Bruce
Less muscles to perform the same routine is one reason.  2nd, if we over-do, the damage to our muscles is greater and that means it takes longer to clean up the residue.  The ARs are not functioning well ... doing their day job ... and that means the neurons on dying.
Paul Sramek
Yes, wth a walker 3 wheels, and  I a TravelScoot
Bruce
Gary, we have to use muscle groups ro perform the same tasks that we use to do without even thinking about it.
Gary_KC
Bruce, thanks lots.
MikeG
does your 3-wheel walker have a seat Pul?
rmof
Bruce, forgot about that aspect. With KD it is hard to get the cardio to have the oxogen exchange in the body
Dorsey
thanks Paul Sramek
MikeG
hi stewart
Bruce
Cardio today for me is far different than the days I use to run, play sports, etc.  Cardio today is not exercising to a point where I am fatigued.  It means exercising to a point where I have stimulated the muscles and neurons and feel stronger.
Gary_KC
Dorsey, you looks like the early stage. Are you interesting in taking dutasteride? It may be slow down the progress???
Bruce
Morning Stewart ... welcome
stewart
goodmorning I'm behind the curve his morning
Dorsey
Saw the table of averages so is 55 about average for being unable to climb stairs?
MikeG
sounds about right
MikeG
depending on the CAG count
916kent
I haven't climbed stairs for five years and I am 47 yrs old.
Dorsey
I thought about it but my doctor has not mentioned anything about it
Bruce
Dorsey, there is no average.  Once onset starts, the progression is fairly similar for everyone.  The higher the CAG repeats, the earlier the onset ... meaning the quicker you reach stages that do not allow you to perform certain tasks.  I hope this makes sense.
Bruce
I started seeing signs at 30.  I know others that didn't see signs until the 50s or 60s.
MikeG
I was still climbing stairs - barely - at 55.  But I also needed a rail.
Bruce
A few years ago we had a 64 year old bricklayer who just recently started seeing signs and he was worried that he couldn't be working for the next five or six years.
Dorsey
Yea Bruce it does. I keep hoping to hear everyone doing well with KD, my coping with this has not been the best
rmof
Mike G, at what age did you first feel muscle weakness in your legs
stewart
I started to see signs in my late 40s and didn't know it.
MikeG
probably 40
MikeG
when I couldn't keep up my 10K running
rmof
Thanks, I am at that point now. A lot of muscle weakness and tightness in my legs but I can still get up stairs. Trying to figure out when this will change
916kent
I noticed it while skiing at the age of 33.  My CAG count is 46.
MikeG
stewart - do you know your CAG repeat count?
Paul Sramek
I find that working helps me. I work with long term care & rest homes.
stewart
Not off hand
Bruce
Paul, that sounds like interesting work and beneficial ... helping others who need help.
Dorsey
rmof I may have missed it how old?
rmof
50
rmof
and don't feel a day over 80
Bruce
So, only two of us on today are at retirement age or older.  You young whippersnappers ....   :-)
Dorsey
I still work no problems there thankfully my job is not physical only have to climb 4 flights of stairs to the tower periocically
916kent
Gotta go. Take care.
Bruce
Four flights!  Oh yah, only in my dreams.
Bruce
Thanks for joining us Kent
Paul Sramek
Gotta Go. Take care.
MikeG
are any of you planning on going to the KDA conference in October?  Harrah's - New Orleans...
Dorsey
I feel like i have ran a half mile after it seems
Paul Sramek
Connection reset by peer
Bruce
This is just me talking and not a professional, but I feel it is important to continue to exercise and walk as long as it is safe.
Dorsey
MikeG I am
MikeG
great - it should be another good one!  I LOVE New Orleans!!!  :)
Bruce
Once walking is an issue, move to a cane and then a walker ... but continue walking (it is great for the quads, ankles, feet, cardio, etc.)
Dorsey
My knees are horrible though I am unable to crouch down like a catcher without real pain
rmof
Not sure. Depends on my finances. Curently trying to figure it out
stewart
I'm 53 still working, exercise is very very important,
Bruce
For those who have never been to a conference, it is something else.  An experience you will never forget and friends you will make for life.
Bruce
Great Stewart!
MikeG
we have a great committee - putting on a super conference this year!
Bruce
Mike, thanks again for taking the task on.  It is appreciated.
Dorsey
MikeG looking forward to it
MikeG
Dorsey - are you driving?
stewart
I'll working as long as I can, they dodn't know about my Kennedy's
Bruce
I love cajun food.  It is difficult to find places that make it right in northern GA however.
Dorsey
more than likely, i may fly not sure yet
MikeG
did you respond to the survey
Dorsey
stewart just curious what do you do, I had to disclose mine because of the nature of my work and I see a flight surgeon annually
Gary_KC
MikeG< not yet but I will do today. Thanks
Dorsey
MikeG same
stewart
Aircraft Techn
Bruce
It sounds like interesting work, Stewart.
MikeG
we originally thought 30 rooms would be enough... we may have to increase it depending on the survey results
Dorsey
Air traffic control but as long as I do not take meds that they deem no problem I am good
MikeG
so far we have about 40 people coming
rmof
I have to go. Wish everyone a good week and Be well. Ron
stewart
At some point they'll catch on, with a teen age son I have to push on
Bruce
take care rmof
Dorsey
rmof take care
MikeG
Dorsey, do you have to do the 'hop on one foot' thing for a physical?
Bruce
This was a good discussion today.  I appreciate everyone's involvement.
stewart
Have a great week, thanks
Gary_KC
Thank you very much for nice chat this moring. I got a go. Bye!
Bruce
Take care Gary
MikeG
I remember doing that at about 30 thinking - why?  No I couldn't do it if my life depended on it.
Dorsey
no but icould still do if needed i can still stand on tip toes and so forth that is how the Doc at the Mayo clinic knew in 30 minutes she said i do not have ALS
MikeG
ye, that it impossible for me now.
Bruce
Well, I need to sign off.  Thanks again guys and stay upright.
MikeG
I'd better get ready for my trip to Texas - got a new laptop and need to load programs on it...
Dorsey
I guess everyone is gone thnks for all the info Mike
Dorsey
Take care
MikeG
take care Dorsey.