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Kennedy's Disease Chat Transcript   9-17-2011

Topic:  Open Forum

Host:  Unhosted

 

Stan
Morning Paul.
carofer
morning all
Stan
Hi carofer
Stan
Morning Gary
Gary_KC
Good morning. This is Gary joining in from Kansas City.
PA-Paul
Good Morning ALL
Gary_KC
Hi Stan.
PA-Paul
Paul from San Antonio, TX
carofer
carofer from california
Stan
So, how is everybody doing? Anyone know where our fearless leader for today's chat is?
Stan
Hi Dan. Welcome to the chat.
DanT
Hi all, good morning
PA-Paul
morning
carofer
doing okay but it's early in the morning
Stan
It's about 50 degrees here. Going to cut grass after the chat.
PA-Paul
where is here stan
Stan
Albion, Michigan Paul
PA-Paul
OK
DanT
going to be over 90 here in SW Florida today, but not very humd, which is nice
PA-Paul
its about 75 now with a high of about 95 today so we are having a cold front after this Wicked summer
Stan
With the weather starting to get colder, I'm already starting to feel the effects.
PA-Paul
55 days in thiple digits
carofer
is that in the UP stan?
Stan
carofer, no, it' in the lower penninsula, about 50 miles south of Lansing; 14 miles west of Jackson, mi.
Stan
Paul, we had about 3 weeks in triple digits here. Not much fun then, either.
PA-Paul
Stan I know what you mean BUT it beats the ice and snow from PA
carofer
i started taking curcumon a couple weeks ago, and i seem to have a bit more energy nowadays. Anyone else tried this?
PA-Paul
is that the curry and cinnamon "like" stuff
PA-Paul
i sure could use a little more energy
carofer
yes it is used in curry. i got it in capsule form from health food store.
Stan
Paul, I'm not ready for snow and ice yet, but it's coming. Carofer, I have not tried curcumon, or any other drug, mostly because of the other stuff I'm on for other conditions. Worried about interactions.
carofer
stan, you should always check with doctor. I checked and he said no problem with my prescriptions.
PA-Paul
OK my cousin was doing it a while back but he has not mentioned it lately
Stan
I plan to. Appointment in a few weeks.
DanT
I'm originally from Cleveland but couldn't even imangine dealing with winter there, BRRR!
PA-Paul
Stan If i might ask or everyone How often does everyone see a doc just for KD
PA-Paul
DanT i too have movede from PA to TX just for that reason
carofer
I gave up seeing the neurologist after the 50th time he told me he could not do anything for me.
PA-Paul
what about the Muscular Dystrophy people?
Stan
I haven't seen a Dr. for KD in about 2 years. There isn't one close by, so it's an all-day affair if I do go. I deal with my regular Dr. about every three months. I think it's a waste to go to MDA to have them say "yep, you're worse, can't do anything for you."
Gary_KC
I visit ALS clinic every 3 months. Of couse, they have no treatment for me.
carofer
I was told I should go to the neurologist regularly so that he could follow my progress and prescribe aids or lifestyle changes. I recently was in rehab for 11 days due to a broken ankle, and I got lots of great ideas for my house and exercising.
PA-Paul
they to dont offer any treatment just "Chart my Progress" and they are local,  and do offer advise on swallowuing and energy conservation
PA-Paul
they also offer sone aids and money for chair and chair batteries
DanT
I see a neurologist 2 a year, to monitor progression, I was seeing him through the MDA clinic but earlier this the MDA stopped having the clinic here in Fort Myers because of costs so I'm seeing him as a private patient now.  I agree it seems to be a waste of time though at least he knows what KD is unlike every GP I've seen and had to educate them on disease
PA-Paul
I hear that on educate docs
Stan
I get a lot of information from the web sites: KDA, MDA, etc. Had a person come in after my stay in a rehab center a couple years ago to provide information on exercise and installing aids. Now have a PEG tube because of my swallowing issues.
carofer
i had to educate the rehab therapists but they caught up quickly with the kda website
PA-Paul
and the Quest web site has tons of good info, even some for KD or SBMA
Stan
When I was in the hospital and rehab center for a month, two years ago, the wife and I had to hand everyone a KDA pamphlet so they knew what KDA was. I told them, " read this and come back when you understand."
DanT
Next year I'm scheduled for my 5 year colonoscopy and am worried about the sedation, Has anyone else  dealt with this?  Which risk is worth taking, sedation or going going without?
Stan
I think we did more educating during that time than I was getting treatment.
carofer
The sedation they used for me did not put me out completely. They have some stuff that just makes you goofy and then forget everything later. I remember, though, watching the tube for awhile.
PA-Paul
YES take the sedation, BUT print the advise on the KDA web site about anestisa and take it with you Give it to the person doing the sedation.
Stan
I had a colonoscopy and a endoscopy. They also put me uder for the feeding tube. No ill effects. However, we did make sure the anesthesiologist was aware of the condition and advised him to read the material on the KDA site.
PA-Paul
the KDA should get a connection the the Medical schools.
DanT
Thanks, I'll make sure the med staff has the information beforehand.
PA-Paul
I have had several surgeries and even MRI's with anestisia all with making sure the person doing the admin has read the info.
Stan
Yes Paul. It is very important in our case that the entire mediacl staff present for whatever procedure, is aware of our condition and any meds we are taking. Good point.
Stan
Damn, fingers are cramping up.
carofer
i wonder if i should get a medical bracelet
Stan
Can't hurt carofer. I just keep a card in my wallet and a KDA pamphlet in my glovebox.
PA-Paul
Its a good ID, or carry the ID card offered on the KDA web site, cant hurt
PA-Paul
idea
carofer
i am going to do that, good idea stan and pa-paul
UTE
Kennedy's Disease Chat
Stan
Hey UTE!
DanT
Can't scroll back far enough to see who was talking about the Curcumin , curious as to what dosage you're taking, want to run this past my DR
UTE
I got spaced out today timewise
carofer
i will check dosage
Stan
No problem, UTE. Our Hall Monitor didn't show yet either. We are on our own.
carofer
I am taking Turmeric 400 mg per capsule one per day
UTE
The end of last year I personally learned what a collies fracture was...then monday it was possibly a coffee muscle
DanT
carofer, thank you
carofer
it says it has a minimum of 22mg curcuminoids
PA-Paul
OK UTE, what is a collies fracture?
UTE
Last year it was from a break in both bones of the arm just below the wrist
PA-Paul
OUCH!!
Stan
I guess I'm fortunate that I have never broken a bone.
UTE
this week found no break to the hip...but maybe muscles attached to it
PA-Paul
I had one bad one left ankle sheered off Jan 1984
PA-Paul
before I knew about KD
UTE
KD is teaching me alot about anatomy after falls
carofer
the problem with breaking an ankle with KD is that it is difficult to use crutches
DanT
My brother has broken his leg twice thus far, different leg each time.  I haven't broke any bones but hit my head twice requireing stiches
PA-Paul
Yes UTE that is one aspect of KD that we all share or will share,  falling,  just hope and pray each landing is soft
carofer
we all need to be super careful and go slowly to prevent falls!
PA-Paul
amen
UTE
Ive always favored falling on the back of the head and a goose egg to falling forward...but its always a dangerous trade off
Stan
My leg gave out walking back from the barn a couple weeks ago. No way to get back up, so I had to crawl to where I could grab something to get up. Just a small scrape.
PA-Paul
well I have to "RUN" haha so everyone good luck and stay safe,, paul
Stan
Take care Paul
carofer
the small number of functional neurons in the legs can overload and crash. that causes my falls if i am not careful.  the leg goes to jelly
UTE
You'all have a good weekend and stay upright or at least seated
Stan
Kinda sounds like what happens to me, carofer. I always worry it will happen when I'm on stairs.
Stan
OK UTE.
carofer
if i feel it coming on in my leg, i immediately stop and rest for 10-15 seconds. then move on
DanT
Fell in  kitchen about 3 weeks ago, knew I was going down so I didn't get hurt but getting up was almost impossible, arms are too weak to crawl so had to walk on my knees to my bed where I could push myself up.  Really overdid it getting up, that night had terrible cramps and deep nerve pain
Stan
WOW.  I can't believe the hour is almost over and we made it, stayed on track, without a moderator. You guys are great!
UTE
Your lucky about those knees...I'm down to scooting on my but
carofer
i also need assistance getting up if i fall. if it's near my car, i crawl to it, open the trunk and use that as my support to get up. it's just the right height.
Stan
I have to use whatever method seems best at the time.
carofer
good talking with you all. we have a good community.
UTE
It's amazing all the methods that are available when it seems there aren't many
DanT
I'd like to find somekind of portable lift that would get us off the floor, something we good sit on on the floor and then raise up.
Stan
Any other thoughts or ideas before we sign off?
carofer
i smell an opportunity there DanT.
Stan
Dan, UTE, sounds like something that needs to be created.
Gary_KC
I got go. Stay safe, please. Bye.
UTE
Like one of those dollies that goes under cars but that could be lifted up on one end to slide up onto something
DanT
I've been looking at various options, automotive products seem to offer some possibilities
DanT
Exactly UTE, that's along the lines I'm thinking of
Stan
Yep, those are some good ideas. Well, got to go. Take care until next time guys.
carofer
maybe a jack-like mechanism
DanT
take care all, good chat
UTE
Then there those lazy boy lift chairs...too bad the footrest couldnt be used as an off the floor lift