| 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 |
