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Kennedy's Disease Chat Transcript   05-07-2011

Topic:  What Works for You?

Host:  Bruce Gaughran

Bruce
Good Morning, Stan
Bruce
It was getting a little lonely here this morning
Stan
Morning Bruce. How is everything in GA?
Bruce
We survived and we still are a little shocked that this could happen
Bruce
Are you warming up?
Stan
We've had a few close calls here over the years. Yes, I'm getting there. It's been getting up into the upper 60's during the day.
Bruce
190 MPH winds are a little intimidating.  The tornadoes we had in MN were nothing like this.
Stan
Hi Gary
Bruce
Morning Luis
Stan
Hi Luis
loshimo11
Good morning everyone. This is loshimo11 logging in from an overcast and rather chilly San Francisco.
Gary_KC
Good moring. This is Gary joining in from Kansas City. It is a nice weather with 62 degrees this morming.
Bruce
Morning Ted
Gary_KC
Hi Bruce and Stan.
TedA
Good morning from Richmond, VA
Stan
Hello Ted
loshimo11
Good morning, Bruce, Gary Stan and Ted.
Bruce
Thanks for joining me this morning.  Otherwise I would be forced to be outside in the beautiful weather.
Stan
It's a sunny 60 degrees her this morning in MI.
Bruce
Morning Stewart
loshimo11
I'm really glad the wheather has changed over there Bruce.
Stan
I'll be going out to do more yard work after this.
Bruce
I thought about the following for a topic:  What works for you and what doesn't?  What is helping improve the quality of your life and what would be nice to have?
stewart
Good morning all from Socal it's been awhile I hope all it well.
Bruce
Examples might include the bottle/jar opener with a handle.
Bruce
The Tallette and the shower stool with adjustable leg height
Bruce
Bed pedestals to raise the height of your bed for easy exiting in the morning
TedA
I use a bottle opener to pry under the top to release the vaccum then it opens a lot easier
Stan
Well, my wife works. I'd like to have a new body. Seriously, I use strap wrenches to open bottles and jars. I have a adjustable height shower seat.
Bruce
And, if you don't like the topic, I am open to almost anything ...
Bruce
Recently I added the VMI equipped van to the list and I love it!
TedA
I have an adjustable height shower chair and have used it for about 5 years.    Could not take shower without it
Bruce
TedA, I agree.  Without the shower chair showers would be out of the question ... and I love my showers.
Stan
It's funny, your one article on building a ramp, Bruce. I'm in the process of deciding what to build and where.
Stan
I'm putting up more grab bars in needed locations
Bruce
Stan, it was the best move I made.  The second best move was to build an accessible party deck.
loshimo11
Same here TedA... In the bathroom I also have a couple of those mobile stick-on holders to keep my balance.
TedA
I  moved into my new place on 3/23/11 and still getting settled 1 box at a time
loshimo11
I meant mobile grab bars...
Bruce
Luis, yup ... that is how I enter and exit the shower.  They work well.
Bruce
Moving is tough ...
loshimo11
I also love my commode placed over the toiled... but I don't know if we want to go there...
Bruce
I carry a tallette for the commode in my car at all times ... just in case.  It has been a lifesaver a few times.
loshimo11
Dang... Can't seem to be able to type today... I meant toilet, not toiled!!!
stewart
I see Susanne Waite is in second place in the Energizer hall of fame contest, I just sent off an Email to everybody I know, telling them to vote and vote often.
Bruce
Last year I bought the ToiletAide (commode seat that rasies up).  I no longer have to grunt after I am through going to the bathroom.:-)
TedA
Luis, If you can not get grab bars try getting industrial strength suction cup handles which are safer then the basic holders
Stan
Taking the garbage container to the road got to be a chore on trash day. Now I use a bungy cord hooked to the container and my lawn tractor to move it to and from the road. I can also hook it to my Explorer if I want to.
Bruce
Morning UTE - we are discussing what makes you life easier today and what is still frustrating
loshimo11
TedA... Sounds like a good idea... I'll keep that in mind.
Stan
Hi UTE.
Bruce
UTE - are you in Rochester, MN?
TedA
My new place has a roll in shower, only problem is they did not listen to me and the hose is directly in front of the control and sticks out 8" from the wall!!   All they had to do was use a 90 degree fitting
Bruce
My trash can has wheels and I grab the handle and take it down the long - very long driveway.
loshimo11
Stewart... I'll be voting and spamming friends and relatives right after the chat.
Bruce
In my golfcart I meant to add.
Bruce
Stewart and everyone, yes Susanne can't quite seem to pick up ground on #1, but there is still time.
UTE
My frustration was foot neuropathy keeping me up last nite...I may try neurotin...a powerchair and walker are what keeps me rollen.
Bruce
Since I added a power seat to my wheelchair, life is a lot simpler.
Stan
The trash container has wheels, that's what makes it easier. My drive is about 300 feet, that's why I use my riding mower.
Bruce
Stan, ours is about the same length ... downhill
TedA
Does anyone have a aide or assistant come in to help with anything?
Bruce
Not yet, TedA
UTE
Bruce..I've had two powerchairs both with elivating seats...couldn't make it without them.
Bruce
My wife is the aide and assistant.  She amazes me with all that she does.
Bruce
Besides everything she does, she also puts up with my crap.
loshimo11
We have a 2 person cleaning crew that comes in every other week. Not only do they clean, but they do most things that they know I can't do.
Stan
I don't have a wheelchair yet. I figure in a couple more years I may. No Ted, I don't have anyone come in to help. Like Bruce, my help is my wife; and the kids when they are in town. One big blessing is my neighbor that plows the snow off my drive in the winter.
loshimo11
And the most important assistant is my wife (bless her soul), who puts up with me and all my faults on a daily basis without uttering a word of complain!!!
TedA
I do have a housekeeper that come in every 2 weeks and cleans and changes sheets which i can not do.
Stan
My wife complains all the time Luis. That way I know she is ok.
Bruce
Stan, when you begin to look at a chair, I highly recommend you see a specialist.  Then, talk five years out ... what will I need in five years ... not just today.
loshimo11
Stan.... you're a funny guy!!!
Bruce
My original chair solved my immediate needs.  Since medicare or your insurance company will not want to replace the chair for at least five years, consider what you will be needing by then.
Stan
Bruce, I've read your articles about choosing a chair. Very helpful. Something I plab to keep in mind when the time comes. Also, with two other family members in chairs, I have them as a resource too.
Stan
plan
Bruce
FYI - it has been almost three months since I started taking dutasteride.  It has really helped me.  My exercise program now goes 100+ minutes every other day and 15-20 minutes on the inbetweeen days.  I am not fatigued during or afterwards.
Bruce
TedA, I belive you mentioned you were taking it also.  Is that correct?
TedA
In my new place my wheelchair has become everything.    It gets me around, lifts me so I can stand, foot rest lits boxes high enough for me to get it the rest of the way up, "bulldozer" to flatten boxes, etc
Bruce
TedA :}
Stan
How is it for chasing and running over moles?
loshimo11
Off the subject, but has anyone heard the latest status of poohsdaddy???
TedA
Yes I am on it.   Took me about 1.5 years to get back on it after the CT ended and I found out that I had been on it during the CT
Gary_KC
Bruce, thanks for your dutasteride update.
Bruce
Good question, Luis
TedA
I do not do yard work so someone else canget the moles....
Stan
Jeff's wife has been posting updates on him. He is getting better, but slowly. He is out of ICU. They removed the trach tube.
loshimo11
I think the latest I heard was that he was doing OK but was still incarcerated (hospital).
Bruce
Stan, can you send me the URL for the updates on Jeff please?
Stan
Yes, Jeff is still in the hospital.
Bruce
Jeff has had a tough couple of years
Stan
I can send you the text updates Bruce. Jeff's wife posts them on Facebook.
Bruce
TedA, have you noticed any adverse side effects with dutasteride?  I have not noticed any.
Bruce
Thanks, Stan, or give me their Facebook URL ... I am a novice on it.
TedA
No I have not.    I forgot have to send message to 1 person...
TedA
how
Stan
Ok
Bruce
TedA, right click on the name and click on Instant Message
TedA
fingers not working good today!
Bruce
Personally, I am thankful I started dutasteride.  The other day my wife could not open a can ... she always opens them for me.  But, I was able to open it and she was so impressed.  I did a wrestler's pose of pumping up my muscles.  It was shortlived however.
loshimo11
TedA... It must be contagious. Got the same probelm here...
loshimo11
Brucelol
TedA
Any plans for a conference this Nov?
Bruce
My wife has been doing volunteer work in our community ... at the shelter and in neighborhoods ... cleaning up  the debris, etc.  That is where she is today ... another neighbhood.  I wish I could help out also, but it is just not in the cards.
Bruce
Yes, TedA, the plan is for the BWI area.  The first hotel we began negotiations with was too expensive, however.  We have a board meeting on Tuesday and that will be a topic.
loshimo11
Wives are amazing!!! No only do they take care of us, but they try to do the same for rest of the world!!!
Bruce
I am hoping we can line up another tour of NIH while there.
Gary_KC
Bruce, what is BWI area? what city is it?
TedA
3 hour drive for me.
loshimo11
Bruce... what's the normal November wheather back East?
Bruce
Did you guys read the NIH article about beginning the testing of all kinds of approved drugs on rare disorders?
UTE
Bruce, what's the science and effect of dutasteride...if I take meds or eat before I take a bath...even with the use of both arms and the side of the high tub won't get me up on my knees
Bruce
Sorry, Baltimore Washington, DC
Bruce
UTE, dustasteride was a two year clinical trial.  The drug focuses on the androgens I believe.
Bruce
About 50% of the people who took it found it to be somewhat helpful (0-2% improvement) while those on a placebo declined 2+% a year.
Stan
I take too many drugs for my liking now. I'll have to discuss taking any more with my dr. and the MDA dr. Pobably cost prohibitive for me.
Bruce
Because the findings were not significant, they could not outright recommend the taking of it.  Dr. Fischbeck felt that there appears to be no harm in taking it and it might help.  That is why I started taking it and I have reported back to him on occasion expressing how well it is working for me (right now anyway).
Bruce
My thoughts were this.  If on average we lose 2+% of our muscle mass each year and something can slow the progression by 0-to-2% a year, I am willing to give it a try as long as there are no negative side effects.
TedA
Bruce, I agree with that and I think it has slowed my progression
Bruce
My leg and shoulder strength has improved remarkably in the last few months.  I measure that with my exercise program ... number of reps and weights used.  I can do things today that I could not do a year ago.  It is not a cure!  It might not even work over the long haul!  But, it does seem to work for me and TedA right now ... as well as John C. and a couple of others I know.
TedA
Of course  age is the other factor that it can not slow down or reverse!
Bruce
Unfortunately, Yes!  And with age we also lose muscle mass.
Gary_KC
Bruce and TedA, I am taking the durasteride about 1 year. I feel the same.
UTE
Bruce, tks for the info... stan I hear you regarding too many pills... and statins seemed to pull me down as well as the generic for tricor...but really...was it the drugs or a bad week...really..no way to know for sure
stewart
That's good info, I might start looking into it for myself, maybe worth a shot.
Bruce
This was a decision I talked over with my wife and doctor.  Both felt it was worth a try.  I do not know what tomorrow will bring, but for now it is worth it.
Bruce
BTW, I am taking this from the KDA forum.  Do any of you have any problems taking prednisone?
Bruce
I found out the hard way several years ago that it was bad for me ... depleated my strength.  Mike Murphy posted a comment on it.  He was having similar problems.
TedA
I now 1 other person that was on it for the CT and still uses it and is still working doing a physical intense job.
UTE
what is prednisone?
Bruce
It is an antibiotic steriod drug
UTE
an even stupider question...what is CT?
TedA
Clinical Trial
Stan
I take prednislone. Similar drug. I saw the post. I can't say I've noticed any difference in strength. I discuss this each time I visit my dr. because of the potential side effects.
stewart
Prednisone, Not me, but I no on it now.
Bruce
Well, it could just be a fluke, but I wanted to make you aware of potential problems with a couple of KD'rs.
loshimo11
Well folks.... I'm starting to smell bacon (breakfast). Gotta run soon (LOL). Please stay healthy and upright until the next chat...
Bruce
Good chatting with you Luis
Stan
I check out all the drugs I take for potential issues and interactions on www.drugs.com  Good site
Stan
Take care Luis. I already had my breakfast.
Bruce
For the chatters, we are considering going to once a month chats versus the two per month.  There are several reasons for this.  What do you think about the change?
stewart
It's not good for any body to take high doses long term, and you can't just stop taking it. you have slowly lower the dose.
loshimo11

UTE
I think once a month is ok
Stan
I can see doing one a month during the summer. Everyone is busy with other stuff and want to be out and about.
Gary_KC
Bruce, it is good for me once a month.
stewart
Works for me to. Well guys got to go, Thanks for the info.
Stan
Bye Stewart
Bruce
Well, I appreciate your thoughts on this.  It is occasionally tough to get a board member to host the chat because of Saturday conflicts.
Bruce
Is there a preference ... the 1st or 3rd Saturday?
UTE
Bruce, you and the board members are the greatest...either Saturday is good
Stan
Eenie, meenie, miney, moe. Flip a coin and there you go.
Bruce
Thanks
Gary_KC
Bruce and TedA, thanks for good information in chat today. I got to go now. See you the next chat. Bye
TedA
Maybe nice weather months 1 and the others 2 per month.     6 months / 6 months.    Just an idea.
Bruce
Thanks TedA
Stan
Bye Gary
Bruce
Well, it is beautiful outside and I hear the call of the wild.
Bruce
Stay healthy, happy and upright guys
Stan
Ok, ok. I get the hint. Take care everyone.
Bruce
You are quick, Stan
TedA
Enjoy the outdoors today.   I will!   Bye and Thanks Bruce
UTE
thanks again bruce and have a great weekend