Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA is an excellent group of caring and dedicated members that are always there if more support and hope is needed."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript   09-01-12

Topic:  Open Forum

Guest:  None

Host:  Bruce Gaughran


Bruce
Morning Gary, how are you?
Gary_KC
Good morning, Bruce. This is Gary. It is rain all day since yesterday. It is too late. We should have had much rain last month.
Gary_KC
I am fine thank you.
Bruce
I was hoping you guys would get some rain.
Bruce
We didn't get a drop of rain even though it was forecast every day.
Bruce
Morrning Mike
MikeG
Morning Bruce & Gary
Gary_KC
Good morning Mike.
MikeG
hi David
Bruce
My daughter is in Nebraska for a wedding and it is over 100 degrees
Bruce
Morning David
david
Good Morning all
MikeG
83 in FL now
Bruce
We are 77 and very humid.
MikeG
I don't think we made it to 100 this year
Gary_KC
72 degrees in Kansas now.
MikeG
but then we hardly ever makie it to 32 either :)
Bruce
I have watched a lot of college football already and am looking forward to this afternoon and evening.
Bruce
David, where are you located?  I am in northern Georgia.
Bruce
Morning Carofer
david
Wea re in the Cincinnati area it is very humid and approaching 80 already this morning and the promised rain has not arrived
carofer
good morning all
carofer
from california..
Bruce
Our August until this week has been wonderful (mild), but this week it has been very humid every day.
MikeG
David, are you the David on the Conference committee?
Bruce
BTW, Terry had to bow out as host today because they are buying a house and had to go to the closing.
Bruce
Morning Ron
ron m
Good morning all
david
Of course as much as we need rain at this point I hope it holds off thill Monday, we have plans to a hot air balloon ride tomorrow afternoon
Bruce
Ron, when is Isaac supposed to visit you?
Bruce
David, my wife and I did that when we lived in PA.  It was interesting and fun.
MikeG
nice - I did a hot air baloon ride for my 40th birthday - it was GREAT!
david
I am looking forward to taking lots of photos
Bruce
I liked the fact that it moved so slow you had a chance to see everything.  We watched deer run through the forest below and that was fascinating.
ron m
Bruce, not sure who Isaac is. I used to participate with the name rmof and just changed it to ron m so it reflects my name better.
Bruce
Ron, no I meant the hurricane.  It is supposed to hit Illinois this weekend I believe.
MikeG
it probably won't have much left by then
Bruce
Mike, tell what what kind of exercises the PT has you doing?  You mentioned they are helping.
MikeG
sure tore up LA though
MikeG
yep - the usual leg exercises for a broken femur but they are also helping me with my weak deltoids and triceps
ron m
Oh, sorry early in the day for me. I am in the business. Insurance that is so this isn't helping our companies profits. I haven't heard anything definite yet. I know were in for some bad weather from it. Heavy rains. Hopefully the wind will stay down. Been fortunate so far
MikeG
the therapists thing they can make me stronger... I'm willing to give it a try.  I believe in exercise.
MikeG
the currnt NIH trial will prove it - I hope.
Bruce
Ron, I cannot even imagine what the residents in LA are going through.  And, if someone is handicapped, wow, what do you do (except evacuate early).
Bruce
Do we still have an update from NIH on the exercise trial at the conference?
david
Mike, I started over three years ago with some of the exercises from the KD website and gradually added more challenging steps and my stability and stamina are much improved
Bruce
Good to hear, David
ron m
Bruce, I can't either and all that I can say is that is why I live in the midwest and will be buried in the midwest. These Huricanes have no mercy.
ron m
Good morning Ted
MikeG
they won't be able to give any results since the trial is still in progress but we hope to have a status from Dr. Fischbeck and Angela.
Bruce
Tornados don't either... speaking from a person who now lives in tornado alley.
TedA
Good morning
MikeG
I think Florida got our 10 year quota for hurricanes in 2004 and 2005 - we've been dodging them ever since...
ron m
Tornados are tough too. I am in an area that hasn't seen a tornado in awhile. The weather patterns have changed and they appear to be more aggresive.
Bruce
I say it continually, but exercise has been the best daily habit I have ever had.
MikeG
that's right - at least with a hurricane you get a good deal of time with warnings.
ron m
Mike, all I can say is good luck to you guys because Florida seams to attract huricanes
MikeG
that right Bruce!  Stop exercising and go downhill fast!
Bruce
I liked the MDA articles on emergency preparedness.  It makes even more sense for those of us with special needs.
Bruce
When I was younger, my belief was to wait out the storms.  Now I am more proactive.
MikeG
we're in the Tampa Bay area and, unless they form in the gulf or make a right hand turn after coming into the gulf we're pretty safe.
MikeG
We live in a Del Webb community and it has never been hit... yet.... :)
ron m
The article was well written. Better to be prepared than not.
ron m
Good to know Mike. I heard wonderful things about the Del Webb comunity. We have one close by here where I live
Bruce
I used to do a little sailing (ocean and bays) and preparedness was always important.  For some reason I didn't practice the same disciplanes at home.
MikeG
we're 50 feet above sea level and our house has 130 mph protection (after we put the shutters up) so everyone has told us to stay put.  It's safer than trying to take I-75 out of here!
ron m
Bruce, did you own a boat?
carofer
mike, can you talk about how you broke your femur and how we might avoid doing that?
Bruce
No, I was a member of a sailing club and also chartered several times to sail the San Juan islands.
TedA
True for me to.   Guess I feel safer at Home and more help close by.   Not always true though.
MikeG
yep - we live in the first one that Del Webb developed in the 60s.  Sun City Center.
MikeG
in fact we live on Del Webb Blvd!
ron m
Bruce, an expensive hobby. Unless you have deep pockets. Better to sail the way you did. I know slips are expensive
Bruce
Yup, we almost bought a boat at one time, but found renting them on vacations and being a member of a sailing club much better.  Cindy and I would go out after work and sail until close to 10PM in Seattle on the Sound.  It stayed light that late during the summers.
TedA
My Sailing 4 All received IRS 501(c)(3) status this past Thursday!    Yea!!
Bruce
Congratulations!
Bruce
Ted, I know you have worked hard to get this thing going.
Bruce
For those who don't know, TedA is the real sailor.
ron m
Mike, Didn't know Webb built in the concept in the 60"s. Are any of the homes handicapped accessible
ron m
Bruce, very nice. Sounds like good solid memories.
MikeG
I was wearing sandals that should have been thrown away 5 years ago... but they were my favorite pair... I stood up from my office chair and took a SIDE step towards my walker but the sandal had a velcro strap that was apparently loose and it caught the carpet and caused me to get off balance.  I went down sideways and hit full force on my right hip.  It fractured the femoral neck.  :(
TedA
We have done 2 cruises on the local reservoir with residents Hosting on the Community pontoon boats.
Bruce
Yes, Ron, I have sailed in GA, FL, CA, WA and Canada.  Many great memories.
Stewart
Kennedy's Disease Chat
MikeG
No Ron, my house was built with 24" doors which we had widened while I was in rehab for 2 weeks.
Bruce
Morning Stewart
ron m
Morning Stewart
Stewart
Good morning sorry I'm Late
ron m
Mike, what did you widen them to?
MikeG
I poured ramps into the front and back several years ago to accomodate the power chair that I used in and out of the house.  I was using a walker in the house most of the time and just walking around the other part of the time - without a cane.
Bruce
Poor Paula ... having to supervise all that work while might was getting sponge baths by 18 year old nurses. :-)
carofer
mike, thanks for this. I had a similar fall due to my foot hitting a cabinet, last month, but my face took the brunt of the fall. no permanent damage thank God but my nose still hurts.
MikeG
That probably won't be happening anymore.
MikeG
32"
Bruce
I meant MIKE instead of MIGHT
carofer
i think the key thing is hyper-consciousness of where your feet are at all times when moving. we have no margin for error when some little thing goes awry with our legs.
Bruce
Right on Carofer.  Being aware of everything and remaining focused.
Bruce
Multi-tasking when walking is ripe for accidents.
ron m
Mike, was 32 recomended to you. Is it a standard opening for wheel chair access?
MikeG
and we have handicap toilets but I couldn't even get up on those with only 25% weightbearing on my rt leg so we bought a portable toilet with handles to place over the toilets.
TedA
Where the feet are in reference to the upper body.    When upper body gets off center I go down.
MikeG
Yes, my powerchar fits in 32" very nicely.
MikeG
yes, Ted that is very true.  And when the knees buckle...
Bruce
I bought a lift toilet seat when I broke my tibia and fibula and couldn't put any weight on the leg for six weeks.
TedA
Same here for the Camode over the toilet.    Also got a shower chair that is 25 - 29" tall.  Low ones do not work anymore.
carofer
yes, teda, when i walk, my knees are locked, and that makes it almost impossible to walk on a downhill slope (because your knees want to bend going downhill).
Bruce
TedA, I agree,  My shower chair has been a lifesaver.  Two of my earlier falls were in the bathroom getting in or out of the shower.
MikeG
Check out my new hip hardware:  http://www.eastbaysolutions.net/guest/Temp/MyNewTitaniumHardware.jpg
carofer
me too, bruce, when i broke my fibula
carofer
so what do you do in public restrooms where there are no grab bars?
TedA
I was having trouble with knees buckling but that does not happen as often lately.
ron m
I am having balance issues. Been luck so far with no falls lately. Any recomendations on what to use for balance. Would a cane help?
Bruce
After that, I went to a shower chair (tall one) and it has made all the difference.  I remember when Murray bought one of those step in tubs where the door opens and you step in.  The problem was he couldn't get up from the seat and had to put in a lift to get him up.  Bummer!
Bruce
Ron, a good quality cane with a good grip will definitely help.
MikeG
yep - Murray had lifts all over his house!
carofer
ronm, i use a cane all the time, but my doctor told me to use a walker as of last month. i think a cane helps a lot.
Bruce
I used one for years especially when I traveled.
MikeG
I'm going to spotlight what Murray has done - it's what we may all need someday...
david
Yes I think a cane is very helpful, I often do not think I need it but just using it makes me more careful.  For me it is just one of those good habits to develop
MikeG
at the conference
ron m
Thanks all - I think I will get a cane in the immediate future.
TedA
A cane does not make me feel safe so I use a walker.
MikeG
same here Ted
Bruce
Ron, get one with an adjustable height.  The height is important and using a cane correctly is even more important.  For several years I used one wrong.
MikeG
I used to use a cane for short distances - less than 200'
carofer
teda, i use a cane only because of my pride and worrying what others might think of me. the walker is actually a lot more comfortable for me.
ron m
I know a walker would be safer but I don't know if I am there yet.
MikeG
I'm afraid I'll be using a walker exclusively from now on.
MikeG
at 64 - I'm there!
Bruce
If Paula has anything to say about it I am sure you will. :-)
ron m
Bruce, where did you learn to use the cane right?
MikeG
RIGHT!
Bruce
A physical therapist saw me walking and said you are doing that wrong ...
david
Ron check out the LEKI website.  Someone had one at the conference last year and I now have two a micro for traveling and a another one that can expand to trekking pole height.  Both of them were around $50
MikeG
same happened to me - with the walker also.
Bruce
I was putting all my weight on the cane and the cane height was too short.  You arm should be at a 45 degree angle when walking.
david
When I first got the canes I also worked with my physical therapist to get the height correct
ron m
I am going to the MDA clinic in a month. I will try and see one when I am there.
Bruce
LEKI was what I used when I used to do a lot of walking and hiking.  It didn't provide the support I needed eventually, however (hand grip).
Bruce
Good idea, Ron.  They normally have therapists there.
ron m
LEKI, is that the brand name or type of cane?
Bruce
The same applies with a walker (as Mike mentioned).  The correct height and how you walk through a walker is very important for safety and back problems.
david
Bruce they now have handle grips for two versions, I had used regular trekking poles earlier in life
Bruce
Brand name of a line of products.
MikeG
That's what my brother Tom gave me several years - nice for walking ... then.  Can't use them any more now.
ron m
Thanks, I will check into it
Bruce
A good grip that you can feel comfortable with (provides support) is important.
david
LEKI is a brand name www.leki.com/trekking-poles
Bruce
My cane was expandable (length) and I highly recommend that.
david
The one I have with me right now is called "Super Micro"
david
and they are expandable
Bruce
When I first used a cane I put all my weight on the cane when walking.  That is wrong.  It is to be used for balance (a third  leg) and not the main support.
ron m
Thanks for the link David. I saved it to my favorits. I will check it out later
MikeG
well, I've got to go - I hope to see many of you next month at the conference in NOLA.  We've got a good one planned for you!  Take care and stay upright.  NO FALLS allowed.
Bruce
Canes are especially nice when standing in lines.
Bruce
Take care Mike
ron m
Be well, Mike
david
Bye Mike
carofer
thanks mike. c ya
Bruce
It seems I tire easily when I stand still.
ron m
Bruce, Your legs or over all fatigue
TedA
Better to move around a little or lean againtest a wall (3 point stance)
david
I have also found out that having cane is helpful in another way, generally people give me more space when I am using it
Bruce
Legs ... trying to stand still is more difficult than walking because I don't have the same sensations I used to so I have to keep compensating.
Bruce
David ... it is not supposed to be used as a weapon. :-)
Bruce
Airport lines were killers.
david
OK I had not thought of it that way but whatever works. . .
carofer
they give self-defense courses on how to repel an attacker with a cane.
david
I agree with the comment on standing and having something to lean on just a little really does help
Bruce
I did a lot of traveling (50% at times) and I would get so tired walking through airports and standing in lines.
Bruce
Then sitting in an aircraft for 4-6 hours and then having to walk again.  A  killer!
carofer
i always get a wheelchair from the airline when going through the airport. no charge, but i always tip the pusher about $10 - $20.
TedA
Even getting up from the plane seat is a real challenge
Bruce
I did that later in life and yes it does help a lot.
david
I traveled a lot also before knowing what was wrong and it was no longer fun.  I was still trying to carry a laptop and luggage
Bruce
Well, guys, I appreciate your participation today.  Take care and stay upright.  It is almost time to watch some football!
david
Have fun watching the games Bruce,