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Kennedy's Disease Chat Transcript   02-19-2011

Topic:  Open Forum

Host:  Ed Meyertholen

Stan
Well, Good Morning from a rainy and 32 degree Michigan. Snow is melting, roads icy and flooding possible. Wonderful day for a chat. So, where is everybody?
Stan
Hi TedA
TedA
Good Morning Stan
TedA
about 51 in Richmond, VA with the high about 63 today
Bruce
Morning Guys
Stan
Hi Bruce, Terry
TerryW
Hello
TedA
Hi Bruce
TedA
Hi Terry
TerryW
Got my perscription for  Avodart yesterday
TedA
YEA
TerryW
will see how it goes
Bruce
Terry, I am keeping a journal.  It will be interesting to see what happens.
TedA
I have been on it for about 1 1/2 years
TerryW
:)
Bruce
John said that he really did not know of any difference until when he went off.  Ted, I believe you mentioned something similar.
TerryW
Is there a non name brand version?
Stan
I'm leary about taking any more meds than I am already on due to possible interactions.
TedA
Also was on it for the trial
Bruce
My doctor and my pharmocist said no.
TerryW
ok
Bruce
I have noticed some thins happening, but they might be pschosymatic.
TedA
Yes, after the trial I started falling more often and that was before I found out that I had been on it durint the CT
Bruce
I find it interesting that my fasiculations are reduced substantially ... especially after my morning exercise program.
TerryW
I had a bad fall this week could have been really bad,  I tried to move a 12 foot aluminum step ladder about 20 feet.  I amde it about 10 before I lost balance and fell down our driveway face first and the ladder landed on my back and head with my right arm still thru the rung
TerryW
Nothing broke think god
TerryW
thank
Bruce
I also have a feeling of muscle-tightness that I have not felt in years.  The tightness is like the days when you were exercising and used muscles you had not used in some time.  It is not sore or painful; just tight.
TerryW
I made a promise to myself that day to not try these things again
Bruce
Terry, you were lucky.
Bruce
Morning Ed
TerryW
My doc perscribed a walker for me yesterday
Ed M
Good morning all!
Stan
Hi Ed
TerryW
Bruce,  yes
TedA
I move into my new place in just over 2 weeks and then I will have a hot tub again!   It is great for the muscles.
Gary_KC
Good morning. This is Gary joining in from Kansas City. It is 23 degrees with sunshine this morning.
Bruce
I remember the last time I used a ladder.  I was about ten feet up and it fell backwards.  I rode it out and landed on my back.  I was also very lucky ... and more than slightly embarrassed.
Stan
I've had a walker since my hospital stay a year-and-a-half ago. Haven't had to use it though. I do try to stay off ladders now.
TerryW
heloo everyone that I missed greeting
Bruce
Morning Gary
Stan
Hi Gary
TedA
Terry, is it a walker with big wheels and brakes?
Gary_KC
Hi Stan and Bruce.
TerryW
will do ted
TerryW
I am still looking ted
Bruce
Ed, have you heard anything about IGF-1 recently?
TerryW
also a seat
Stan
I had a similar ladder experience a number of years ago, Bruce. The wife caught me as I fell. Nobody hurt, just our pride.
Ed M
THere has not, to my knowledge, been anything reported recently.  No new news.
TedA
Terry I know you are a veteran.   Do you use the VA at all for medical?
Bruce
Morning Tomk
TerryW
Ted,  I am still under my wifes work insurance
TerryW
hello TomK
Stan
Hi TomK
Bruce
Ted, my brother uses the VA quite a bit.  When I applied, they said I made too much money.
Tomk
Good Morning
TedA
You can have both I think.     You might want to check on it.
TerryW
Our recently installed Solar is really starting to kick in as we move towards summer
Stan
My wife is still on my insurance from work. As a retiree, I now am on Medicare.
TedA
VA is the only medical I have until I can get on Medicare which is 2 years after going on SSDI
Bruce
Morning Yakima
TerryW
When first installed in Dec it would generate in a day about 19kwh  yesterday it did 38kwh
Bruce
TedA, for some reason I did not have to wait to go on Medicare.  When I received SS-D, I also received Medicare.
Stan
At that rate, Terry, you'll be able to power up the whole town.
TerryW
By mid summer It will probably be about 60kwh in a day
Yakima Kid
Morning everybody
Bruce
How many kwh do you use in a day normally?
Stan
Hello Yakima Kid
TerryW
28-32
TedA
Have have check with 2 sources and both told the 2 years.     I think I read it some where also.
Ed M
Hello Yakima
TerryW
but that is being conservative, and not running the AC much in the summer
TerryW
or space heaters in winter
Bruce
TedA, I had heard that also, but for some reason they enrolled me immediately and I did not even ask.
Stan
I had to wait 2 years after going on SSD to get Medicare. Got SSD first time through.
TerryW
this way we save up credits to be able to run them and be more comfotable without worrying
Bruce
Ed, are you still running most days?
TedA
I think is was on the letter of approval to SSDI that said 2 years
Ed M
I try to, my schedule this semester makes it hard to run as often as I wish.
Ed M
I am not running as much as I used to run.
Bruce
I still think it is great you can run regularly.  I miss it.
Yakima Kid
Anyone know How did the Dustasteride and Leuporelin tests are going and are they available ?
Stan
I haven't been able to run in 30 years.
Ed M
Both studies were published.
Yakima Kid
Was that the end of it ?
TerryW
Here is a tip for those of you that are on SSD,  Have LTD income.  Periodically they will send forms that need to be filled out by your doctor to continue your coverage and prove your continuing disability. Before you give them to your doctor to fill out and they mail them in make a copy of the form for yourself and have them sign and date your copy proving that you gave it to them.  This way if SSD or LTD comes back saying that you did not get the completed form back to them in time you have proof that you did your part.
Ed M
The dutsteride paper is here -
TerryW
I see no link ed
Tomk
What is ltd?
Bruce
Yakima Kid, the links to both studies are on the KDA website under clinical trials.
TerryW
Long term disability  LTD
Ed M
www.ncbi.nlm.nih.gov/pubmed/21216197
Ed M
The dutasteride study is over
TerryW
the company that I worked for pays me 60% of what I made up to age 65  - any SSD that I get
Stan
Terry, I remember them saying i would get those forms, have not recieved one yet. Of course, with three qualifying conditions, I don't think there is any question about my disabilities, and none of them will get better.
TerryW
Hmmm stan, that is strange
Yakima Kid
Bruce, So no one has been able to try these yet ?
Bruce
I am not certain what you are asking, Yakima Kid.
Ed M
You can go to your doctor and ask for them, they are currently on the market.
Ed M
However, in both instances, the results were minor (at least over a time span of two years).
Bruce
TedA and Stan, I just read my SS-D notification letter.  On the first page under "Information about Medicare", it said I am entitled to Medicare the same month as my disability.  I wonder if the policy changed.  Mine was in 2003.
Stan
Mine was in 2008 Bruce. I took the early retirement buyout from my company in 2007.
Yakima Kid
Ed, Good to know that. Prev visits to my doctor have not suggested any treatment so haven't gone back
Tomk
So you guys are recommending that I don't do a normal Retirement but apply for DB?
Stan
So, Ed, I think you are saying that taking the drugs might not be worth the cost as far as any noticable improvement?
Bruce
TomK, there are a lot of decisions as to the best retirement option.  What is your age?
Tomk
Just turned 60..
Bruce
Are you still actively working and believe you can continue to work for five+ years?
Stan
For me, it was better to take the early retirement buyout - full pension - than to go on a medical. More money, Less paperwork
Tomk
Actively working a 32 hour work week.
Ed M
Yakima,  there is still no treatment. However, the dutasteride study showed small (not statistically significant) changes over 2 years.  So understand that one will not probably see big changes quickly if one takes it.  You can discuss it with your doctor.  Since dutasteride has few side effects,you and your doctor may decide it is worth a try.
Bruce
Is it your choice to work 32 hours because of your condition?
Yakima Kid
Thanks Ed.At 84 I'm ready to try anything.
TerryW
Sorry all,  I have to go and begin to get ready for our annual Rodeo Kickoff BBQ today.  Got lots of stuff to do before.  See you all next time :)
TedA
Tom,  Depending on your age.   Check your yearly staltement from SS.    It lists the different ages of retirement and disability seperate.    Also depends on the company ypu work for and what you get from the.
Tomk
I was working 40 hrs but I was getting very Fatiged.
Ed M
You may want to show your doctor the paper (or at least the reference to it).
Bruce
Does your company have a long-term disability program that you joined?
Yakima Kid
Yes, that might move things along
Tomk
I presently work a seasonal job at the IRS.  10 months a YEAR.
TedA
My SSDI approval letter does not mention Medicare
Bruce
If approved for SS-D, you receive the full social security compensation as if you retired at age 65 or 66.  If you do not have a long-term disability plan, then working longer might still be the financial option to take.
Yakima Kid
Medicare has been there for me.
Tomk
Bruce; I enjoy the work it get my mind off my Illness.
Bruce
If you do decide to apply for SS-D, download the SS-D guide on the KDA website.  It has been helpful to many applying for it.
Bruce
Tomk, then you should continue working.
TedA
Bye all.     I have to be somewhere in 1 hour.     Till next time stay upright!
Stan
Bye TedA
Ed M
bye, Ted
Tomk
Just one more Concern, i already get a retirement income from the state of OHIO?
Bruce
Ed, has there ever been any study or comments on why cold effects those of us with KD more than others?
Ed M
No
Bruce
I asked my neurologist and he did not feel it should be an issue.
Ed M
I expect a 'real
Bruce
I just know it is an issue and several others have reported problems with cold weather and strength.
Ed M
"doctor could guess why, but there are no studies on that
Tomk
I ask my Neuro Doc about the Cold and he says it depends on TIME & Temp exposure.
Ed M
I could be that the muscles are themselves colder, thus the reactions are slower in them
Stan
I know I have problems with cold weather.
Ed M
I find I exercise better in the cold, I certainly feel much better then
Bruce
I believe it has something to do with blood flow.  Blood needs to flow to the skin to keep the body warmer.  But, that is just a guess.
Ed M
Running in the heat is awful for me.
Yakima Kid
My feet get really cold and swollen--anyone heard of that?
Bruce
It still does not explain why my hands quit working in the cold.
Ed M
My feet are always cold, always.  I always wear socks.
Bruce
Yakima, yes, that is a problem with age, lifestyle (sitting more than standing or walking) and gravity.
Yakima Kid
socks, yes!
Ed M
If your hand muscles get cold, they do not contract as well.
Tomk
I have actually collapsed while walking to the Car on a cold January,
Bruce
My feet always feel cold.  Even if they feel warm to the touch, the sensation is that they are still cold.  I wear socks to bed.
Ed M
Me too, they are also numb all the time
Stan
My hands and feet get cold. No swollen feet. Hands cramp up if out in temps below 40 for more than 15 minutes. Feet are always cold, even with insulated socks and boots.
Bruce
Yakima, you also have to be concerned with diabeties when swelling occurs in the ankles and feet.  Check with your doctor about this situation.
Tomk
Winter Months prevent me from any Movement outside. Has to be above 50 to feel balanced.
Ed M
My guess (and it is only a guess) is that the coldness in the feet is not real but a results of somesort of loss of temperature sensation so our brain thinks they are cold.  BUt, this could be wrong...
PA-Paul
hello all sorry im late,  been a long time between chats
Bruce
I believe it, Ed.
Yakima Kid
A badly deteriorated lumbar complicates anyn diagonosis
Bruce
Good to hear from you Paul
Stan
Also Congestive Heart Failure. My father-in-law had the swollen ankles and feet with his CHF.
Ed M
Hello, Paul
PA-Paul
hi bruce
Bruce
I read that elevating your legs help with the fluids.
Stan
Hi Paul.
PA-Paul
i moved to texas because i cant take the cold anymore
Bruce
Paul, how are you doing these days?
PA-Paul
hi stan
Bruce
Where at in Texas?
PA-Paul
same old story slowly getting worse
Yakima Kid
I'm wondering about CHF. So far my doctor has not brought that in.
PA-Paul
san antonio
Tomk
I spent 2 years at Fort Hood 1972 - 1974.
Bruce
Beutiful area.  I love the River Walk.
PA-Paul
oh yes we do too
Stan
I'm still here in MI. Can't afford to move anywhere. I put up with the cold and snow shoveling.
PA-Paul
stan you would be surprised at cost here low.
Bruce
My son and daughter live in MN.  They have had a tough year!
Tomk
Ohio just as Cold but the Wife loves the Neighborhood4
Bruce
Well guys, my dog is telling me he needs a walk.  I've enjoyed chatting.  Ed, thanks for hosting the chat today.  Stay upright!
Stan
Yakima, you really need to have a long talk with your Dr. and some tests like Bruce suggested.
Yakima Kid
Yakima has been called the Palm Springs of Washington ! :} lol
Ed M
Have a good walk - be sure to bring a doggie bag!!
PA-Paul
i have been wondering How many KD'ers are overweight and how has it complicated the kd
Stan
Yes, but I can't get anything fro my property here to be able to move, Paul.
PA-Paul
Oh Yes my Pennsylvania polace is still for sale a year now and it dont look good.
Tomk
Got to GO.. Good Info about D B  benfits.
Stan
Paul, I'm not overweight and never have been. I've actually been underweight all my like.
Yakima Kid
Cheap houses in Tucson. My daughter just went through forclosure
PA-Paul
yes if my memory serves me from any of the conferences i hhave attended i dont remember anyone being too heavy
Stan
See ya, TomK
Yakima Kid
Maybe a trade ?
Ed M
One thing to remember is that muscle is heavy and we are losing muscle.
PA-Paul
then i dont know what i am finding?? lol
PA-Paul
seems the only enjoyment i have is eating
Stan
Ed, even in my 20's and weightlifting, I never got to the weight I should be for my size.
PA-Paul
although chewing is getting tireing
Yakima Kid
:|
PA-Paul
OK everyone stay safe and warm and "upright" til next time
Ed M
Till later, Paul
PA-Paul
bye
Stan
Bye Paul
Yakima Kid
OK now I'm hungry. Bye all.
Yakima Kid

Stan
Ok Yakima. Next time.
Ed M
I guess this is the end!!
Stan
Well, I guess it's time to abandon ship, Captain.
Ed M
Just do not drown!!
Ed M
so long
Stan
Take care, Ed