| 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 |
