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Kennedy's Disease Chat Transcript 06-6-2009
Topic: Open Forum
UTE: Good Morning Dart, how are you doing?
Dart!: And a good morning to YOU! are we on for today? There was no notice that came here, and I am hoping that all is well!
UTE: Good Morning Poo
Dart!: Ah! THERE is more signs of life! Good morning Pooh!
gary_kc: Good morning. This is Gary joining from Kansas City. It is overcast day and 71 degree.
poohsdaddy: Good Morning to you both -- Our new grandson arrived on Wednesday night. He looks just like his daddy; and has more hair than grandpa. All are doing okay !!
UTE: what's his name and weight?
poohsdaddy: Do we have a specific topic ? or open forum today ?
Dart!: H'lo Gary - Congratulations, Pooh, on the new arrival!
gary_kc: Hi Dart and congratulations for Pooh!
poohsdaddy: His name is Kayn Marko. He weighed 6 pounds, 14 ounces; was 19 1/2 inches long and could count to 21.
Dart!: Is it Kansas City where the 'corn grows as high as an elephant's eye'? And what a good start, at nearly seven pounds!
gary_kc: Dart, we have big sunflowers and delicious beef, too.
UTE: I'm feeling old today...my oldest grandchild graduated from HS laST NITE
Dart!: An appropriate name - 'sunflowers', as they certainly are bright and cheery. I have a vase of phony ones close by here.
poohsdaddy: UTE -- That's great !! My other grandsons are 12, 13 & 14. Some days, I wonder if I'll see them do things like that.
UTE: Sure you will Pooh...my youngest grandchild is 8...I'll be around for hergraduation???
UTE: Stan, how are things in Mich???
poohsdaddy: I had another bad fall on Monday... and took nearly 20 minutes with much help to get back up. Again, nothing broken... just embarrassing.
Stan: Hi UTE. OK here in Mich. Sunny and 65 right now. Sorry for the delay, I was in the middle of having one of those coughing fits.
poohsdaddy: Mild temps. in WI today and a bit cloudy.
gary_kc: By the way, does anyone knowthat NIH has published the dutasteride trail result? I have not seen it so far.
Dart!: Sorry about the tumble, Pooh - very sorry! Are you using a walker, and perhaps grab-bars handy?
UTE: Pooh, I fell over this week in a public restroom but my head wedged between where the two walls met and saved me from hitting the floor...Pooh, what was your faLL LIKE?
poohsdaddy: The last that I heard was about a month or so ago; and the difference between dutasteride and placebo was about 2% in strength... They said more information would follow.
UTE: sTAN...are you all right...were you losing your breath?
gary_kc: pooh, thank you for the infomation.
Stan: Yes, I'm ok. The spells are pretty bad sometimes. I almost feel like I will pass out, but haven't yet. Good thing I've never had one while driving.
poohsdaddy: I had gone to morning Mass at church, which is in the basement of our parish rectory. I made it back up the steps okay, but went numb as I stepped out the door to the patio area. There were 3-4 people who tried to help. I told them I had to wait for the feeling in my legs to come back before I would be able to get back up.
poohsdaddy: Stan -- Glad to hear that you are ok too!!
UTE: This past year I get the numb feeling too...in my arms and legs when I sleep....and I always warn people when they get me up that my legs won't audtomaticALLY lock in place right away
Dart!: Now is a good time to re-assess your situation, Pooh. There is nothing that would compensate for putting some innocent person into a wheelchair - or worse!!
Stan: I get the numbness in my feet and legs after sitting for a long time; especially if it is a hard surface like a church pew.
Dart!: You should be provided with a cushion - you are not proving that you have more faith by sitting on a board!
poohsdaddy: Did anyone else respond to the questionairre about the possibility of a cruise for KDA members ??
poohsdaddy: It sounded like a good deal, but just does not fit the budget at this time.
UTE: Did you see this past week in the news that doctors have put a fluorescent green in the DNA of monkey's and that those monkeys have had offspring with the green feet...great for the fture of following neuromuscular diseases...(no funds for longdistant travel at this time)
Stan: On a more positive note, the Wife and I drove up to Gladwin, MI last weekend for my Grandaughter's birthday. She is 6. 3 hour drive one way. Got to see her play Soccer. It's amazing how far I can still walk with a cane. Cruise would be out of the question for me right now- budget.
poohsdaddy: Dart -- I have been re-evaluating my mobility... and looking into getting a walker with the seat to rest if necessary. Hopefully, the insurance will cover most of the cost.
Dart!: Good plan, Pooh - make sure that you lock the brakes before sitting! And aa padded seat is great, too!
poohsdaddy: I heard that NIH is working on getting more studies going... at least two, one for the effects of exercise/ohysical therapy and another with trial medication.
poohsdaddy: Physical Therapy
UTE: Stan..my family was from everywhere from the Irish Hills to St Louis and Pt LookOut on Lake Huron...I'm very familiar with that drive... watching grandkids play soccer has been my pasttime
Stan: Yes, it was a good day. Well worth the trip. Lots of fun. I know my Granddaughter really appreciated us making the trip.
Dart!: Kids in sports is cute - they are interested in the ball more than in crippling the opposing team, as happens in adult sports.
poohsdaddy: We're going to
poohsdaddy: watch our grandson when his mother goes back to work. We're looking forward to that...
Dart!: A walker is not a big outlay, unless you get one with an engine. ALS will often help, by loaning one from their equipment department.
poohsdaddy: Do you know what you get when a woman with PMS gets a GPS ???
Stan: Do I really want to know?
UTE: My mother-in-law found me a great walker in the want ads...but WalMarts looks pretty good too
poohsdaddy: A ***** that can find you anywhere.
Stan: Here I thought you were going to say a emale with direction.
poohsdaddy: Our son works at Walgreen's; and can get a discount on our share of the cost.
UTE: Pooh...thats a scary thought
gary_kc: pooh, do you know that NIH might be planning further detasteride trial or another medication?
poohsdaddy: We need to keep humor in our lives to maintain positive attitudes. Gary -- Yes, they are working to get a study going with other trial medications. I talked to them a few weeks ago... It depends on funding.
gary_kc: Exercise is good but I can't continue. I may be lazy....!
gary_kc: pooh, I see they need more funding.
Stan: I've tried the exercises. It does nothing but make me tired. I think it is better I use the strength I have to do the things I need and want to do.
poohsdaddy: Gary -- I am Lazy, but force myself to get up and get moving around. I try to add a minute or two at a time or increase the weights each week. Some weeks lately, I just maintain the same level.
gary_kc: pooh, I gained my weight in winter and am trying to loose my wight now. Exercise is a good way, isn't it?
poohsdaddy: My Physical Terapist told me that If I give up, the disease wins -- but if I Keep fighting it, I WIN !! The secret seems to be in doing your limit, and then trying just a bit more. Tired or fatigued is okay, but not to the point of exhaustion.
Stan: Well, time to sign off. I have to cut 3 acres of lawn on my mower. Glad to see you guys are still doing well. Until next time, take care.
UTE: Sorry...dropped off...my new computer's Norton Security subscription was up and they cut me off
poohsdaddy: Thanks to all for being here today.... Gotta go too. Best to you guys.... til next time.
Dart!: Yes, it is that time again! It was good to get together with you, and I wish you all the best!
gary_kc: I got go too. Nice talk to all. Take care!
UTE: Have a Good One and Keep Standing!