Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

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Kennedy's Disease Chat Transcript  12-19-2009

Topic:  Open Forum

Host: Bruce Gaughran


BEGIN CHAT

 

Bruce: Good Morning and Happy Holidays
Stan: Good morning. Season's Greetings.
Bruce: Where are you located?
Stan: Michigan, land of water ice and snow
Bruce: We had 24 hours of rain yesterday and fortunately, it was just rain. The same storm is hitting the east coast ... what a mess.
Bruce: I was born and raised in Minnesota, but am happy I am in Georgia now.
Stan: We're expecting another 2"" of snow today. It's snowing now. We had 8"" last week. Born and raised here in Michigan. Have no desire to live anywhere else.
Bruce: Rather sparse attendence so far this morning. It must be the holidays ...
Stan: Naw, I think everyone is snowed in : )
Bruce: I know the Grand Rapids area a little, but otherwise just traveled through your state on business.
Stan: G. R. is north-west of me. I' in the middle of the state, about 60 miles south of Lansing.
Bruce: And to think that at one time 35 below never even phased me ...
Bruce: Morning billeric and Dan T99 ... Happy Holidays
DanT99: good morning
Stan: Godd morning everyone.
Bruce: I have been to Lansing several times. It is a nice college town.
Bruce: We are just chatting about the wonderful weather the eastern seaboard is having.
Stan: Good. Fingers not working right yet.
Bruce: Morning Poohsdaddy
Bruce: Morning Gary from snowed in Kansas
gary_kc: Good morning. This is gary joining in from KC.
DanT99: pouring rain in Virginia Beach, snow just 80 miles west
Bruce: Yes, hand wamers are something I buy by the box.
gary_kc: Hi Bruce.
billeric: Being a Mn. native, Arizona feels good this time of year.
Bruce: DanT99, you are one of the lucky ones
Bruce: Yes, my brother, who also has KD alsao loves AZ
poohsdaddy: Good Morning to all... Happy Holidays!!
Bruce: I have to run to the door, someone is knocking. Be right back
DanT99: typical nor'easter, a lot of wind, supposed to turn to snow Sunday
loshimo11: Hello and Happy Holidays everyone. This is Luis Shimomura joining in from San Francisco.
poohsdaddy: we had heavy/wet snow last week in WI (just north of Milwaukee)... cold and dreary today
Stan: Hi Luis, from snowy Albion, Michigan
loshimo11: Hi Stan... How are things?
billeric: Has everyone kept upright the past couple weeks-no falls?
Stan: Not too bad. Cold and snowy. I'm doing much better after my stay in the hospital back in July. I have gained weight and have some of my strength back. I actually feel like doing stuff like putting up Christmas lights and shoveling snow. Too bad I can't post pictures here.
poohsdaddy: Still going to therapy for a few weeks to learn to walk again after having broken leg and nearly two months in the hospital and nursing home... very frustrating.
loshimo11: I'm just curious... Has anyone during their endless search thru the internet ever found any ""cures"" or ""relief"" medications for KD?
loshimo11: Stan... I'm glad to hear you're recovering nicely. Being in the holiday spirit is always a good sign.
poohsdaddy: I was part of the clinical study of dutasteride from NIH; and thought I felt better then than lately.
DanT99: my neurologist has started me on a regimen of gabapentin for nerve pain, just now up to theraputic dosage (1500 mg) daily...so far not so much pain at night, but I feel sluggish during the day. Anyone else experiened with this drug?
Stan: I can emphathize with you Pooh. Went to therapy for 4 weeks, had a visiting nurse for 6. They thought i'd need Oxygen and a walker or wheelchair. Don't need any of it. I just use my cane once in a while.
poohsdaddy: Thanks Stan.
billeric: I was on neurontin for about a year. Couldn't notice any differance.
Stan: Haven't found any drugs, but I don't think there are any I need other than aspirin for my pain. All my drugs are for COPD.
Bruce: Sorry about that, my neighbor just hiked through the woods to bring me sausage, bacon, eggs, and pancakes ... leftover from her breakfast with the family. WOW!
Stan: Where's ours? lol
loshimo11: Bruce... you're a lucky man!!!
DanT99: You just made me hungry!
Bruce: Come see us ... there is plenty for all!
Bruce: I have this thing going with the neighborhood ladies. I tell them that my wife never cooks for me any more and if it weren't for their leftovers, I would be on crackers and water. They love it and always bring me something a couple of times a week.
poohsdaddy: Sounds much better than my bowl of cereal and cup of coffee...
Bruce: I was just kicked off. That is the first time that has happened in months.
Stan: I'm plugged in to my feeding tube downing some Jevity right now. Not very tasty or satisfying.
poohsdaddy: Who has the ""Flood Warning"" ? that just popped up in the chat ?
Bruce: I had one lady send home with my wife a packet of crackers. She was really feeling sorry for my plight.
Bruce: Flood Warning? I don't see that on my chat.
poohsdaddy: Ok... It must be me.
Bruce: Well, is everyone set for the holidays? Bought your gifts?
poohsdaddy: Have we had any news on the ""fundraising"" or research lately ?
loshimo11: No poohsdaddy... I got the Flood Warning message too.
Bruce: We plan at being at my wife's folks for Christmas. There should be 22 of us if the weather holds.
Stan: Haven't bought anything yet. I always wait until the last minute.
billeric: Pretty quite Xmas in Az. Two kids but grown and flew the coop!
loshimo11: It showed up right before I was entering a response. Don't know what that was all about.
Bruce: I do most of my shopping online these days. It is convenient and cost effective, as well as, easier than going through malls.
Stan: There will be about 15 of us at my Nephews for Christmas this year. Always have a big get-together at one of our homes.
Bruce: I love the holidays. It is just fun to be with family and friends this time of year. We have so much to be thankful for.
poohsdaddy: We did our shopping with all the clearance sales after Christmas in January; and bought a few things throughout the year. Had to scale down our spending this year...
Bruce: Ref. fundraising, we had a few very nice donations this last month. We are still way behind for the year, but we are hoping 2010 will be better.
loshimo11: We did about 90% of our Christmas shopping online this year. I actually started during the summer and I'm proud to say that we are all done!!!
Bruce: Ref research, nothing new right now. If you caught the last couple of guest chats, you know most of it.
Stan: Yep. After what happened to me in July, I'm lucky to still be around according to the doctors. Surprised them. Being with friends and family with a lot of food is the best.
DanT99: i'll be having a 'hard candy Christmas' still fighting for disability, yet I'm still thankful for a loving family and thankful I don't have to shop
Bruce: Stan, you have even more to be thankful for ...
Bruce: Billeric, where are you in AZ?
Bruce: Morning, Ron, Happy Holidays
Bruce: Are you snowed in yet?
Stan: Morning Ron.
poohsdaddy: We're supposed to go to my brothers house, but he has too many steps for me. We'll probably just stay home during the holidays this time.
billeric: Sun City. NOrthwest of Phoenix about 20 miles
loshimo11: Hey Ron...
Ron: Good morning guys. It is snowing hard in Pennsylvania,
Bruce: Yup, I know the area. I have family in the Phoenix area and also Flagstaff.
Bruce: Ron, I saw that you could get up to twelve inches today. FUN!
poohsdaddy: Ron, where abouts? Our son lives in Philly.
Ron: I'm inside looking out at the asnow.
Bruce: I love the Amish country, Ron, especially when it snows and you do not have to go anywhere.
billeric: I'll bet all that snow is pretty!
Ron: Lancaster--75 miles from phila.
Bruce: We even had snow in Georgia last Saturday. It was melted by noon, but the trees and ground were covered. My dog loved our walks that morning.
loshimo11: Snow looks beautiful, especially when looking from inside.
Bruce: Think back to your childhood days. A good snowfall was so much fun. You couldn't wait to go outside and play.
Stan: Is there anywhere on the KDA site we can post a picture of the weather/scenery from our front/back yard? If not, I'll just have to direct you to my Facebook.
poohsdaddy: I enjoy looking at the snow too, but feel bad that I can't help my wife with the shoveling and cleanup.
Bruce: You could send it to Terry Waite at info@... He might have a place to publish them. Otherwise, post them on Facebook and add a comment in our KDA Forum with the link to your page.
poohsdaddy: Is anyone else on Facebook? My wife and I enjoy playin some of the games that are there.
Bruce: Poohsdaddy, I can understand that. Near the end of our time in PA, I wasn't much help at all. Especially when we are a Northeaster where it dumped snow for days.
Bruce: I was, but could not find the time or need to use it.
Stan: Great Bruce. I'm not supposed to do any shovelling, but when the wife is away... My neighbor cleared by driveway with his Deere after the 8"" last week. Says he doesn't have anything better to do.
Bruce: It is great to have neighbors with snowblowers.
loshimo11: OK guys... the wife just got up and is beginning to cook me breakfast. Woohoo!!!!!
Ron: Bruce--I know you know about snow, but most of the folks from Georgia don't know what a good snow is.
DanT99: Poohsdaddy, check out the KD group on FB. Almost 200 members.
poohsdaddy: Luckily, we also have a couple of very good neighbors that help out when it gets to be too much.
Bruce: Has anyone had any experience with the footheaters (like the handheaters) they now sell? My feet are always cold, but especially so when I come back from walking Fred.
Stan: I don't play any of the games on Facebook. I only use it to keep in touch with family and friends. My one Nephew just got back from IRAQ. Just in time for the Holidays. He's back for good now.
Bruce: I use My Hot Hand Warmers. We buy them by the box at Sam's Club and they work very well for my hands.
Ron: I'm having trouble with my computer floating.
Bruce: Stan, that is good to hear. A neighbor's son in law just returned today. He is done in February.
Bruce: Thow out an anchor, Ron.lol
Ron: When it floats I can't type or read what is going on in the chat.
poohsdaddy: Yes Bruce... I used them when I worked as a mailman; and found them very helpful. I also had ""thermal"" socks and ""battery operated"" socks when it was really cold.
Ron: LOL Bruce.
Bruce: Ron, the third icon on the right above this type box says Float or Dock. Try that.
Bruce: From the right
Bruce: I am thankful for my electric blanket during the winter.
Bruce: How many of you served in the Armed Forces?
DanT99: I'm retired from the Navy, Served 21 years
poohsdaddy: I missed the military while I was in college and my birthday came up as # 364.
Bruce: Holidays were very lonely when at sea (or aboard the river boats in Vietnam).
loshimo11: My daughter bought us an electric blanket for Christmas last year. I'm hoping she gets me the matching electric mattress pad this year. That stuff is the best!!!
Stan: Never had the Honor because of my health. Just about everyone else in my family has been in one of the Armed Services.
poohsdaddy: I was a reject because of being color blind too.
Bruce: The reason I asked about the service is because of the holidays. I am always very mindful of the service men and women along with their families this time of year.
Bruce: DanT99, were you Atlantic or Pacific (or both)? I was Pacific.
DanT99: I spend Christmas 1972 on the gunline aboard a destroyer. 1991 in desert storm
Ron: Having a hard time so I'll just say Mdrry Xmas and a happy new year. Stay healthy till next we chat.
Ron: Bye.
Bruce: Thanks, Ron. We wish you the very best.
poohsdaddy: Ditto Bruce... they all need our support no matter what our position may be on the whole situation. They're defending our country.
DanT99: Bruce, I did 8yrs in the pacific, then came east
loshimo11: Take care Ron. Enjoy the holidays!!!
Bruce: Ron has been having some health issues recently. Stan, he is also on a feeding tube I believe.
Stan: I can understand that. I thought I was the only person on a doctor- prescribed weight-gain diet.
Bruce: The best assignment I had was aboard the USS Plainview. The world's largest and fastest hydrofoil. It was a submarine hunter. It had four phamtom jet engines. Boy could it fly.
Bruce: I had two Vietnam tours. One aboard a ship and the other on the river boats in the Mekong Delta region.
poohsdaddy: Thnks guys... I need to get going too 'cuz we're babysitting our grandson today. Merry Christmas and Happy New Year to all... and your families !!
Bruce: Enjoy the grandson and thanks for stopping in today. Happy Holidays
Bruce: Gary, you have been quiet today. What is happening in your world?
Stan: Have a Very Happy Holiday Pooh
DanT99: I just caught the tail end of Vioetnam aboard the Uss Bausell DD845 (when your're out of FRAMS your're out out of cans)
Bruce: :}
gary_kc: Bruce, it is cloudy and about 24F degrees in mid west this morning.
Bruce: All I know is that winter becomes harder for me every year. The cold just does not do me any good. My hands just do not want to work correctly and if I am out too long, my legs do not work very well either.
gary_kc: Bruce, I agree with you.
Bruce: The finny thing is that I really enjoyed winter when I was younger. I love to hike in the mountains when there is fresh snow.
Stan: Same here Bruce. For me, I thrive on the challenge.
Bruce: My brother who lives in AZ (he had KD) said that winters in AZ are the best. He has never felt so good.
Bruce: Billeric, have you seen any difference when wintering there?
loshimo11: Having been raised out here in California, the only time I saw snow was on our way to Lake Tahoe or Reno.
Bruce: I loved the Tahoe area. I just wished I had enough money to buy there.
Bruce: loshimo11, you are in San Francisco, right?
DanT99: I grew up in Cleveland...hated winters.
loshimo11: Yep. San Francisco...
Bruce: I thought so. One of my favorite cities.
Bruce: Of course, I love seafood.
Bruce: I was stationed at Treasure Island (TI) for a period in the 60's for training.
loshimo11: We just moved back up here 3 years ago. Before that, we spent 15+ years living down the peninsula south of San Francisco.
Bruce: Then, when I was west coast sales manager, I spent a week a month in SF.
Stan: One of my brothers lives in Redwood City, CA.
Bruce: Where at on the penninsula?
loshimo11: My daughter lives in San Carlos, which is right next to Redwood City.
DanT99: Well I have some errands to run so Merry Christmas and Happy Holidays to all. Bye.
Stan: I'd have to look at the map again to be sure.
Bruce: Yup, I know the area. It is beautful up there.
loshimo11: We lived in a little town called Hillsborough before moving back up to SF/
Stan: Merry Christmas
Bruce: I know the Hillsborough area also.
Bruce: Merry Christmas, Stan
loshimo11: Merry Christmas Stan.
Stan: Chat with you all next year. Bye
loshimo11: Wow!!! I'm impressed Bruce. Hillsborough is a town not really well known. Even for the locals.
Bruce: Well, guys, I need to take my dog for his walk. Then, I am going to have some of that leftover breakfast. Please, take care. Stay healthy. Enjoy the Christmas holiday season.
billeric: Have a good one guys, Stay upright
loshimo11: Happy Holidays everyone!!! We'll chat again next year.
Bruce: Remember, we have much to be thanksful for.
gary_kc: Happy Holidays everyone! Bye.

END CHAT