Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"As a mother with a son who has KD, I appreciate those of you who are so dedicated to informing the public of this rare and difficult disease."

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Kennedy's Disease Chat Transcript   01-15-2011

Topic:  Open Forum

Host:  Bruce Gaughran

Bruce: Good Morning
Bruce: What is the weather like in Wisconsin this morning?
Bruce: Morning Ted
TedA: Good morning Bruce
poohsdaddy: Good Morning.... Snow here overnight and cold today
Bruce: Morning Rich
Bruce: I finally made it out of the house after being snowed in (with ice) for five days.  
Bruce: Our county road maintenance service schedules the folks up on the ridge last.
UTE: We finally made it to a degree or two above freezing...feels much better
Bruce: We were finally 37 yesterday and should have a heatwave today of 44.  I am digging out my bathing suit.
poohsdaddy: Our weather seems milder than in other years, and now, it's all headed East.
Bruce: The south is just not prepared for 8+ inches of snow with freezing rain.  
TedA: About the same tempature in VA.   Only 1"" of snow from each of the last 2 storms
Bruce: Morning Stan
poohsdaddy: Polar Bear Club members jumped into Lake Michigan near here on New Year's Day.... Brrrrrrr !!
Bruce: One inch ... you were robbed!
Stan: Good morning everyone.
Bruce: Morning TomK
Bruce: Did anyone notice in the Quest Magazine the ALS directory that the CDC has started?
Tomk: good morning  Cold day in Cincinnati
UTE: The bad part about our snow storm and winter is that there will be snow piles and bad sideroads till spring...hard to find a bus stop that a wheelchair can use
Stan: No, haven't seen it yet.
poohsdaddy: Got 2 new KD chatters as Facebook Friends this week :|
Bruce: I contacted the CDC after I saw it to see if they would be interested in starting a KD registry.
Bruce: Morning Luis
Bruce: Morning Gary
Gary_KC: Good morning. This is Gary joining in from KC. It is 25 degrees this morning.
loshimo11: Good morning everyone. This is loshimo11 joining in from what appears to be a nice day in San Francisco.
Gary_KC: Hi Bruce.
Stan: No bus service out here. Might be able to shag a passing tractor though, if I'm lucky.
loshimo11: GM Bruce.
Bruce: These last few weeks have been very busy for my and my sister-in-law.  We continue to develop the new KDA website.  We thought we were close to being done, but our service provider created some ugly problems so we had to rework many of the pages and configurations.  Rework is ten times worse than doing it the first time.
Stan: So Bruce, were they interested? It seems they should have a list from all the registered people.
poohsdaddy: I'll have to check iy out... later.
Bruce: We are now looking into moving the site to another service provider.  I still hope to have it up and running soon.
Bruce: Stan, I have not heard back from them yet.
Bruce: Morning billeric
Bruce: I said I, but I meant we ...
UTE: Good Morning Bill, how's the weather
poohsdaddy: Bruce, have you heard back from any tentative ""Guests"" ?
loshimo11: Just got an email from our friend Alexandre in Brazil. There's been terrible floods and mudslides over there but his area seems to be fine.
billeric: Good morning guys.  59 degrees in Az. this morning
Bruce: Not yet.  The problem is that everyone of them gave a presentation or provided information for the conference.  They feel they have nothing new to tell.  Even though most chatters did not attend the conference, it is still asking a lot from these researchers to come on early in the year.  We should see some coming on in the spring.
Bruce: billeric, we will hit 59 also ... sometime in April
poohsdaddy: Billeric.... Are you near Tucson ?  I had a cousin there for many years.
billeric: Phoenix area
Stan: Billeric, in Michigan it is hard to tell if or when we will hit 59.
Bruce: I have a brother in Apache Junction and another in the Flagstaff area.  I also have a sister in Gold Canyon.
billeric: All good except Flag is a bit cold and snowy now.
Stan: I have an uncle in Tucsan and a cousing on Flagstaff.
Tomk: We haven't seen temperatures in the 50ssss since october?
Bruce: It is closing in on tax time again.  I need to update my publications from the IRS.  Especially those that deal with potential deductions for a disability.
poohsdaddy:  Do we get a special tax deduction ??
Bruce: In Quest, there were two updates on KD research.  Both have been reported by the KDA, but it is good to see anything on KD research.
billeric: Tomk, I have a son living in Lawrenceburg, Ind
Bruce: By the way, my brother who has KD was able to get a Veteran's benefit for having KD and not meeting certain income requirements now that he and his wife are retired.
Tomk: The irs web page is an excellent rescource; but congrss is slowing down any recent code changes...
Bruce: www.irs.org
Bruce: or 1-800-829-1040
loshimo11: poohsdaddy. There's a tax penalty that applies to all of us KDrs. Something to do with being extra handsome... (LOL)
Bruce: There appears to be several publications that might apply including publications 910, 907, 524 and 525
poohsdaddy: :}
Tomk: Half hour from lawerenceburg, and i work for the IRS...
Stan: I don't qualify for that one loshimo11.
Bruce: Poohsdaddy, I missed the extra handsome one.
Bruce: Tomk, you work for the IRS.  You might be of help to many of us living with KD.
poohsdaddy: Me too....
Tomk: Right now i do bussiness returns; 941,940,944,943ss for irs.
loshimo11: Since we're in the subject of benefits... Did the B part deduction in the Social Security benefits take a very noticeable jump this year?
Bruce: I posted on my Living with Kennedy's Blog an article on when and how to tell your children that they might have the defective gene.  I would encourage anyone who has been through this to provide comments on your process.  We receive emails regularly about this topic.
Bruce: Luis, I had not noticed.  
Tomk: For employees & employers the contribution for 2011 is ssn is 4.2% for employee & 6.2% for employer for all of 2011.
Stan: I was going to do that yesterday Bruce, but got sidetracked by a phone conference with my financial planner.
billeric: Bruce,  dumb question;  how do I reach your kennedys blog?
loshimo11: My B deductions increased by over $65.00 a month...
poohsdaddy: I have sons and grandsons... no girls to pass the gene, but my sister's sons have all been tested... and negative for KD.
Bruce: Not a dumb question at all.  http://kennedysdisease.blogspot.com/
Bruce: Tomk is a wealth of information.  Thanks
Bruce: Luis, that is a big increase.  Did you have a good previous year because if you make more than $XXX your premiums are higher.
billeric: Thanks Bruce
Tomk: After returning from the mayo clinic, we took all the kids to the children's hospital, and there genetic conselor did a gret job explaining
loshimo11: Bruce... if I had a good year last year, someone forgot to tell me.
UTE: Bruce...an even dumber question....kennedysdisease.blogpot.com?
poohsdaddy: Tomk and UTE,  Are you on Facebook ?
Bruce: Tomk, I still believe that is the best way to introduce them to the subject.  A genetics counselor is trained for that.  I had a talk with Dr. Fischbeck and then discussed it with my daughter who was wondering how to tell her two children.
Tomk: Yes on facebook but never disclosed medical concerns.
Bruce: http://kennedysdisease.blogspot.com/
Bruce: That is a yup!
Gary_KC: By the way, thank you very much for connecting me lots of the KDA friends. I am a beginner for the facebook.
UTE: Im not on facebook...Im computer ililerate
Bruce: I do not like Facebook (shock!).  But, I am forced to use it occasionally.
Stan: I've been on FBook for a while and thinking of dumping it.
poohsdaddy: If I could ffigure it out.... almost anyone should be able to join in .....
Bruce: UTE - sorry ""kennedysdisease.blogspot.com""
loshimo11: Gary_KC... don't feel like you're the only newbie in Facebook. I've been there a while but never really used it. The only reason I originally signed up was because my daughter's boyfriend worked there.
poohsdaddy: I like playing a few of the games available there.... often.
Tomk: Bruce is a blogger but not a facebook GUY....WHY ???
Bruce: I want to thank all of my blog readers.  I had over 4,800 page reads last month.  I never thought it would grow to that size in my life.
Bruce: I hate having friends Tomk :}
Stan: I'm on the blog at least once a day to see what's there and if there are any comments.
loshimo11: Bruce... your blog is one of the first sites I visit every morning when I log in.
Gary_KC: Bruce, I am reading every week. It is lots of work. Thanks lots!!
poohsdaddy: Tomk, you can add me to your ""Friends"" list if you want.... through Terry's pages.
Bruce: Stan, many people send me email comments rather than comment on the page.
Tomk: I have a son in africa, the only way i track his adventures is on facebook
Bruce: Again, thanks for your readership.  It means a lot!
Bruce: We are trying to make the new KDA website more user friendly.  We also hope to add a wiki page within the year also.  
UTE: Back to the subject of social security...when I turn 65 will I go automatically from disability to social security at the same amount
Bruce: Rich, it is my understanding that YES ... you automatically go from one to the other.
loshimo11: On a different subject... has anyone else received any spams to your personal email address which reference the KDA? Or was I one of the lucky few?
poohsdaddy: I keep me""Privacy Settings"" fairly tight on Facebook.  Limit messages to certain Friends directly rather than posting too much on my wall.
billeric: None  loshimoll
Stan: I went online to find that out too, UTE. I says that at 65 we will automatically be rolled over, but it wasn't clear if it was a the same rate or the higher retirement rate on tyour notice.
Bruce: poohsdaddy, that is my frustration with FB.  I was getting all kinds of crap and friends I never heard of.  I received emails almost daily.  
Bruce: Luis, I did not receive any.  Terry investigated it and felt that someone had use a 'bot' to gather email addressed from our chat rooms.
Bruce: Morning Paul, welcome to the club
Paul Sramek: Good Morning
Stan: Loshim11, I got some of thse same emails. I forwarded my findings to Bruce and Terry obout that. I have the offenders blocked now.
poohsdaddy: Ditto.
Bruce: Rich, it is also my understanding that if you were on SS-D, you should have been receiving the full SS benefit less any work compensation deductions.
loshimo11: Bruce... Right after I received that spam, I also received a notice that someone in Nigeria had left me a large monetary fortune. They were supposed to send me money weekly (or weakly in this case) until my 1.6m was reached. I promised to donate any and all of these funds to the KDA but it never arrived :(.
Tomk: Since this is my first time on the chat room....this won't generate spam on e-mail???
Bruce: One other plug on my Living with KD blog.  There are two 'guest post' articles this month (Part I and II) that are a lay person's guide to understanding KD and the most recent research findings.  It was prepared for a man with KD in England and is well written and very understandable.
loshimo11: Tomk... I've found out that anyone that logs into our website can access email info on all of us members.
Bruce: Luis, you are so kind.  That also explains why your Medicare Part B went up.
poohsdaddy: Thanks guys.... time for me to get going already.  Hope to see each of you again next time.
loshimo11: Bruce... ohhhh... things are starting to make sense!!!
Bruce: Tomk, no because everything is confidential (email address name etc).  However, if you leave your email address in the chat, it shows up in the chat room transcript.  It is my understanding that it could be harvested from there.
Gary_KC: Bruce, I read the blog and a little understood what was AF2. Thanks lots! :-)
Tomk: Good day guys...good experience for a first time visitor!!
Bruce: Take care Tomk
Bruce: Luis, I do not understand your response to Tomk.  What do you mean that anyone can access our email information?
loshimo11: Bruce... I googled my name just to see what was out there and notice it splattered all over these chats. That's why I will no longer us my real name in my salutations when I join in the chats.
Stan: I pointed out that they could get a lot of our emails fronm the Contact List on the KDA site. Luis and I, along with a few others, are listed there with our email addresses
Bruce: Luis, the only way it will show up is if you entered it during a chat.  It should never show up otherwise.  
UTE: Bruce and Stan...tks for the input...I'm still working 20 plus hours a week at below SGI...and finding it more and more difficult...it will be 8 yrs at the job in March if I make it...then end of July is the big 65  
Paul Sramek: Got to go, see you next trip
Bruce: In the new website we are developing, any email addresses that are provided are hidden ... one layer down.  If someone wants to contact you, they have to click on your name and then an email will load that has your address.  It is not shown on any pages except where you have provided it in your 'story', or example.
Stan: Bye Paul
loshimo11: Bruce ... you're right... I was entering my full name in my ""Good morning, this is XXXX, joining in from San Francisco"". I will no longer enter my name.
Bruce: Okay, that makes me feel better.  We are trying to keep everything confidential unless someone wants to provide the information.
loshimo11: Bruce... if you go to the KDA website, under DISCUSSIONS/SUPPORT and select KD Contacts, all of our names and email address are there.
Stan: Depending on the type of email, I usually forward the spam mail to the FTC, SEC, FBI or IRS as appropriate.
Bruce: BTW, Mike G was in VA this last week moving his mother-in-law.  He had to drive through the storm in NC and SC and he commented it is tretcherous.  I read there was over 2,000 accidents in SC alone.
Stan: That's what I have been saying for a week Luis.
Bruce: Yes, Luis, that was what I was commenting about earlier.  The new website is set up differently so as not to show the email address unless someone physically clicks on it and then an email opens up.
Bruce: When the registry of contacts was started, there were no bots and harvesting software to concern ourselves about.
loshimo11: Bruce... That's great news!!!
Stan: That is a suggestion I made to Terry, Bruce.
Bruce: Stan, I did not see that one, but it is incorporated into the new site.  It was a lot of work, but it looks good and should be safer.
TedA: Thanks for all the info and updates.   See you next time
UTE: Got to go...hope to catch youall next month
loshimo11: Take care TedA.
billeric: By Ute
Bruce: One other item that we are considering for Phase II is a sign-in page for the new site.  We would have a certain level of access to general KD information, but then you have to sign in (register) to gain access to contacts, etc.  
Stan: Bruce, I sent that one to Terry only. It is the way our websites have been set up at FMC for years, even before I retired.
Stan: Bye teda, ute
billeric: Got to go.  Good chat Bruce.
Bruce: Stan, I am the lead on the new site working with the developer.  If you have other suggestions, let me know.  I am not certain if or when they would be added, but they will be considered.
Bruce: Thanks billeric
loshimo11: Well... I'l be checking out shortly... the wife's up and cooking breakfast. Things are starting to smell good around here...
Bruce: When the site is done, everyone can scream at me!!!!
Bruce: Yes, I can smell the coffee aroma in the air.
Stan: Lunch time here.
Bruce: For me also, Stan
loshimo11: Bruce... no one is going to scream at you. If anyone does, I'll have them talk to my wife.
Bruce: Thankslol
loshimo11: Bacon!!!!!!!!!!!!!!!!! Bye.....
Bruce: Take care
Bruce: Gary, you have been rather quiet today
Gary_KC: Bruce, have you heard ultra dose of Vitamin B12 for neuro disease?
Bruce: Gary, no, but I just had a blood test and the results showed that I needed more B12 in my diet.  I take a B supplement, but I should probably take more.
Bruce: What have you heard about it?
Gary_KC: I know one person who has been taking it since year 2006. He told me that his SBMA symptom had been improved.
Bruce: Interesting ... if you could get more information on it I will contact Dr. Fischbeck and see what he has to say about it.
Gary_KC: The ulta dose means 50-100 times more than the suggested dose.
Bruce: That is a lot!  I wonder what the potential side-effects are with that large a dosage?
Stan: There is a disorder - vitamin b12 deficiency - the inability to process b12 that can cause neurological issues including loss of feeling and brain function if not treated. Never heard of it being used for KD.
Gary_KC: Bruce. Ok. I try to get more information and let you know.
Bruce: Well, guys, I need to sign off and take my dog, Fred, for a walk.  He is ready to burn off some energy.  Thanks for joining me today.  I hope to chat with you again soon.
Bruce: Stan, that is interesting.  thanks
Bruce: Stay upright with a smile on your face ... life could always be worse.
Stan: Family member has to take shots to get b12 level needed. Bye Bruce.
Gary_KC: Keep warm. Talk to all next month. Bye.
Stan: I guess I should log out. See you Gary. Take care.