Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript   01-07-12

Topic:  Open Forum

Host:  Terry Waite

David
Good Morning
Stan
Good morning
loshimo11
Hey Stan... How were your holidays???
Stan
Holidays were ok. And you?
Stan
Morning David
liu
Operation timed out
David
I seem to be having some trouble staying logged in, getting used to a new computer
loshimo11
Between family gatherings, shopping and eating, I had no time to do anything else. Enjoyed it though.
David
Good Moring all.  We had a nice new years surprise, our daughter and son-in-law made the long drive in from Chicago.  A great way to start the new year
loshimo11
David... whereabouts are you?
Stan
That's good, David. We ended up driving in to Detroit to visit our kids and grandkids.
David
In southwestern Ohio, Lebanon it is about a 6 hour drive depending on traffic which is always busy in and around Chicago
Stan
Ah, Mr. Yelton I presume. My wife has relatives in that area of Ohio.
loshimo11
Were we the only 3 reminded about the chat today?
Bruce
Morning
Stan
Hi Bruce.
loshimo11
Good morning Bruce!!!
David
Good Morning Bruce
Gary_KC

Bruce
Where's Terry.  He is supposed to be the host today.
Stan
Hi Gary_KC
David
Not sure about the rest of you, but weeather here is very nice for January, nice to be able to go outside and not freeze
Bruce
Morning Gary
loshimo11
I hope he can join us. I've read he's been going thru some rough times.
Gary_KC
Good morning all. This is Gary joining in from Kanasas City. It is fine weather with 34 degres this morning.
Gary_KC
Hi Stan, Bruce.
Bruce
Tuesday and Wednesday our lows were in the teens and the highs in the 30s.  Thursday, we had lunch on the patio of a restaurant without jackets on.  Strange.
Stan
Yes, it's been up in the forties here
Bruce
Well, did everyone have a nice New Years?
loshimo11
We had the 2nd or 3rd dryest December in record here in San Francisco. No rain so far this year. Temperatures have been as high as 80's!!! What is going on???
Bruce
My daughter in MN said it was 54 on Thursday.  Go figure!
David
Yes our New Year family gathering was well attended and as I mention our newlywed daughter and son-in-law came in to make the event even better
Stan
Not too bad, Bruce. It could be better. Too bad Ga. lost to Mich St. It was a close game though.
Bruce
I went to see my doctor for my annual appointment this week.  He said I was as healthy as a horse; I just couldn't run like one.
Bruce
Stan, the Bulldogs should have won.  They gave the game away with the play calling.  I enjoyed it anyway.
loshimo11
LOL!!
David
As for the weather, I just hope this extented warm time does not average out with very cold times over the next few months
Bruce
My brother with KD who is 77 went into hospice care this week.  He can't eat or hold his head up any more.  I talked with him last night.  It is tough to see him go down hill like this.
loshimo11
Bruce... sorry to hear that. I will send you both some good healthy thoughts before going to sleep tonight.
Stan
Sorry to hear that Bruce.
Bruce
Thanks ...
David
So sorry to hear about your brother Bruce.  But it is good to have hospice care they helped us with a number of extended family illnesses.
Bruce
Yes, the place is great.  He like the people and the facilities.
Stan
Yes, Hospice is a great organization.
Bruce
My other brother with KD that we lost several years ago went into hospice care near the end and they were wonderful.
Bruce
I'm sorry guys, I didn't mean to bring the tone of the chat down.
Bruce
My doctor feels I should continue taking dutasteride based on the results over the last 11 months.
Stan
It's something we all have to be prepared for, Bruce. Like it or not.
Bruce
We discussed my neuropathy of the lower legs and feet.  He said that when I am ready, he can probably help.
David
Bruce remind me again, that drug reduces testosterone, right?
loshimo11
Bruce... sounds like your dutasteride and exercise program are coming along really well. I may have to send you a superman cape in the near future.
Stewart

Stewart
208.127.70.179
Stewart
Kennedy's Disease Chat
Stan
The dutasteride results is good news, Bruce.
Bruce
It is my understanding that the drug reduces the amount of testosterone that is changed to the other form of testosterone ... I forgot the name ...
Stan
Hi, Stewart.
loshimo11
Hey Stewart!!!
Bruce
dihydrotestosterone or something like that
Bruce
Morning Stewart
Stewart
Hi Goodmorning sorry I'm late
Bruce
Kennedy's Disease Chat
Stewart
Better late than never
Bruce
I'm still on dutasteride and for the most part I'm feeling OK with it.
David
Dutasteride is a blocking agent preventing the production of dihydrotestosterone.  There I got it out!
Bruce
Yes it is dihydrotestosterone, I have been having a problem with our new insurance plan over the interchangablility of two difference topical hormone treatments
Bruce
I did reduce my exercise program, Luis.  I cut back from the 120 minutes to 95-100 minutes.  I find I am enjoying it more.
Stewart
My neck has been giving me more problems again.  It is most noticeable when I have worked at the computer for too long.
loshimo11
I'l be right back, my 13 year old son is spending the day with a freind and if I don't hurry him along it with never happen.
David
Bruce... what kind of neck problems?
Bruce
My concern is that the one they want me to use specifically mentions that it elevates dihydrotestosterone levels, but the one I am on does not make that claim
loshimo11
I turn 65 in a month.  Am I the oldest one on today?
David
Early HB wishes to you Bruce!!!
Stan
As for me yes I am 58
Bruce
Maybe. I'm 59 going on 90
Gary_KC
Luis, weakness.  It becomes difficult to hold it up without a conscious effort.
Bruce
I am 55.
Stan
Thanks ... I mentally don't feel like 65, but my body tells me something different.
loshimo11
Would one of those neck braces help, Bruce?
Bruce
Bruce... I have the same problem. In my case, it comes and goes. Haven't figured out the cause but it happens at least once a year. The same thing happens with my left leg.
David
Probably, but I am not ready for one yet.  I just have to be more mindful of how many hours I am writing.
Bruce
When I first noticed problems I felt like I was a 50 year old mam stuck in an 80 year old body.  Thankfully with help from the KD website I fell much better now
Gary_KC
I can get involved in KD stuff and then transition into the rewrite of my book and before I know it four hours have gone by.
loshimo11
I sometimes face down because of my neck weakness. epecially cold weather or fatigue.
Bruce
I'm going thru the leg issue at the moment. Can't lift it when walking so I end up dragging it. In the past, this can go on for a month or so then everyting goes back to normal.
Bruce
Luis, that is frustrating.
Stan
Stan, are you still on a feeding tube?
David
The cold weather here has been sapping my strength. I stay indise most of the time.
Stan
Bruce, have you checked with a physical therapist about any specific neck exercises that might help?  I mentioned to mine yesterday about hand issues and she recommended therapy putty, I have ordered some and will let you know if it helps over the next couple of months
Bruce
Yes I am Bruce. It's a permanent thing.
Bruce
I have used the putty and it is helpful.  Yes, I do neck exercises every day and it has helped.  This just could over-use of the neck muscles (too long in one position).
loshimo11
The reason I asked, Stan, is that my brother refused to use a feeding tube.
David
Not to change the ongoing subject but were we "good boys" and got all our wishes fulfilled for Christmas?
Bruce
I have had that problem as well and it is hard to keep in mind the need to take a break, maybe when you start out you should set a reminder to take a break after an hour?
Bruce
David, I have rolled up a couple of hand towels and I twist them one direction and the other and hold them while twisted for ten seconds.  I also use the towels for finger exercises.
Stan
Luis, I was with 18 of our family so yes it was a great Christmas.
Bruce
Bruce, yes I have been trying to write and article on my experience, and why I have it from my point of view. I fought getting the feeding tube for four years, but could not eat enough to keep my weight up. Still can't.
loshimo11
And, I will be a great-grandfather within the next two weeks ...  I never thought I would be a GGF at 39.
Bruce
Bruce... sounds like you were extremely busy!!! Hope you enjoyed every minute of it!!!
loshimo11
I believe most of us with KD find ways to enjoy every moment of being with family.
Bruce
Bruce... Hey wait a second!!!! I thought you were only 29!!!!
Stan
You're right!
Bruce
J. B. was 39 for 50 years!!
Gary_KC
When our mornings were in the teens, I told my dog, Fred, that we wouldn't be going for any walks until temps hit the high 20s.  I just didn't think my body would handle a half-hour walk when it was that cold.
Bruce
I bought a Cloudz Microbead Neck Pillow that hold my neck and keeps my neck warm. see www.cloudz.com
Bruce
I'll check it out.  I use a 'dog-bone' when I am napping and it works great.
Bruce
Well, I am looking forward to the LSA-Alabama game Monday night.  It has been a long time a coming.
David
Ref. my neck, about a week ago I changed the ergonomics of my keyboard and mouse and it seems to help.
Bruce
I hope you get to see a good game and it turns out in your favor.  I suppose I should be excited about the Bengals playoff game this afternoon but I just stopped following them a few years ago and it hard to get back on the bandwagon
TerryW
TerryW, you are alive and well.  Wondeful
Bruce
I forgot this was chat day
TerryW
Better to forget then to have something wrong or happen
TerryW
Been a bad week
Bruce
Best friend died,  funeral & such
Bruce
I was always a Viking fan, but burned out several years ago for the same reason.
Stan
Terry, I am sorry to hear that.
David
There's a lot of that going around, Terry. Glad you're ok.
TerryW
Sorry to hear about your loss Terry
TerryW
Yep I am ok but the stress of the funeral ad his passing did a number on my muscles
Bruce
so weak
TerryW
That is one of the problems with growing old.  We begin to see family and friends pass on.
Bruce
It's amazing what stress can do
TerryW
How old was your friend?  What did he die from?
TerryW
he was 87
Bruce
COPD
TerryW
Okay, at least he had a long life ...
Stan
and heart problems
loshimo11
I can relate, Terry.
Bruce
Sorry to hear the bad news Terry. Hang in there!!!
Bruce
You're right about stress.  My brother's wife had to be rushed to the hospital and the stress from that really hit him hard.  KD and stress are like oil and water.
TerryW
We all need to be like Luis ... able to laugh every day and make everyone around him smile.
Stan
Next tuesday is the big Colonoscopy day
Bruce
Hate those.
TerryW
Right, Terry, I forgot about that.  Chug-a-lug!
David
this is my 1st
TerryW
Have you discuss anesthesia issues with your doctor?
loshimo11
this is the same doc that did the probe down my throat into my stomach but I will go over it with him again
TerryW
Terry... Had one of those a couple of years ago. Make sure Mr. Md. is aware of your KD symptoms so they can plan the proper amount of anesthesia. If done properly, the worst part will be the preparation.
TerryW
Just an IV to sedate me
TerryW
Been strangely warm in calif here
TerryW
no rain  warm temps
Bruce
no snow
David
BTW, there was an interesting study about muscles and exercise that I published on our web site yesterday.  You can find it under What's New or the Current Research page.
loshimo11
Same above average warmth here in southwestern Ohio, and no snow
TerryW
We hit 80's a few days ago here in the Bay Area (but not in San Francisco).
Bruce
State is going to have big water problems is something does not change soon
TerryW
Terry, we were all talking about the strange weather patterns the entire country is seeing.
TerryW
HAARP
Gary_KC
Youtube it
TerryW
We have no snow too in KC.
TerryW
it exists and is being used
TerryW
controls weather
Bruce
hi stewart
Stewart
My brother just returned from his annual pheasant hunting trip to South Dakota.  He said it was the first time in at least 30 years that he can remember not having any snow at all on the ground.
TerryW
I'm Back Hi
TerryW
WOW
TerryW
Up here there is a lake in Tioga pass that is usually closed by now with 10 ft of snow,  No snow at all but the lake froze over and people can drive up to it and ice skate for the first time in like 40 years
TerryW
10,00 ft
Bruce
we may go up to it tomorrow
loshimo11
Well, I need to run.  Take care everyone and stay upright.
Bruce
No ice skating for me.
TerryW

TerryW
me either
Stan
bye
loshimo11
Bye, Bruce
David
Bruce... take care my friend. Will chat with you next time!!!
Stewart
I just hope we don't average out this winter with below average cold for an extended period
TerryW
I guess the drought isn’t Over
TerryW
oppps gotta run someone at door
David
bye
Stan
bye terry
David
bye
Stan
It has been good to swap thoughts with you  all this morning, but I too need to signoff.  Until next time stay vertical everyone!
loshimo11
Ok. Take care, David.
Stan
Well... the wife is up and cooking some breakfast. Gotta go guys!!!! Stay healthy and upright!!!
Stan
Bye, Luis. Take care.
Gary_KC
Well, I might as well sign off too. Take care everyone.


OK. Trake care too. Bye