Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript   02-19-2011

Topic:  Supporting Others

Host:  Bruce Gaughran

Bruce Good Morning
Bruce I understand you guys had some good weather and now it has turned colder again.
Bruce We have been in the 60s all week ... nice ... very nice
poohsdaddy Good Morning Bruce. Yes, the weather was nice the last few days, 40-50's. But forcast is for freezing rain and snow the next 48 hours.
Bruce Did you notice I added a chat button to the website page for entering the chat room?
Bruce Thanks for the idea
poohsdaddy Looks like we're here alone, but, hopefully more will be here later. YES, I noticed. THANK YOU !!
Bruce Yes, it is strange to only have two of us on at this last time.
Bruce When is the car show Stan that Carla and you plan on attending
Stan May
Bruce Thanks for offering to help the KDA.
Stan No problem. I'm retired with a lot of time on my hands. It's a nice change.
Bruce We are still getting a huge number of visitors to the new website. It amazes me when I track the numbers.
poohsdaddy We have a huge Car Show here in September. It was started as a "Fundraiser" for our school, but has gone to our volunteer Fire Dept for many years now.
Gary_KC Good morning. This is Gary joining in from Kansas City. It is 44 degrees with mostly cloudy this morning.
Bruce We have been in the 60s all week ... nice weather for a change
Stan The new site is doing what we expected: more visibility.
Bruce Tomk, where is Loveland located in the state?
Stan Morning Gary and Tomk
Bruce Stand and his wife plan on selling KDA t-shirts at the event.
Tomk Tom Cincinnati Sun is shining, LOVELANDias east of Cincinnati..
Bruce Okay, thanks
Gary_KC We had 2 feets snow. It melt all. :-)
poohsdaddy Thanks for joining in this morning guys. Bruce and I were feeling a bit alone.
Stan Most of our snow has melted off this week because of the higher temps.
Bruce If any of you saw my most recent blog, you read about a person just giving up. He has rejected all help and just is accepting the worst. It is really frustrating for me because any help that I offer, he rejects and just get mad.
poohsdaddy Ditto.... I can even see the pavement and lawn in some spots.
Tomk if you copme in by Plane at CVG Loveland is 45 minutes from the Airport.
Bruce I am one with a fairlyy positive attitude ... it could always be worse. And to see someone just give up and give in is tough.
Bruce Morning Paul
Stan I read the blog. What does he say he wants if he doesn't want help. I know I felt that way for a short time after I found out what I really had. Maybe he wants someone else's help.
Bruce KD is a difficult diseast to live with because it never stops progressing, but the progression is slow. That is what I call and the bad and the good of this condition.
Bruce Stan, no whenever anyone offers to help he comes up with an excuse why it will not work or cannot be done.
michael17860 Hi All
Bruce Morning michael17960
Tomk Bruce I understand his frustrations, one minute you are extremely active the next day you stumble and fall and can't get up....It is extremely frustating.
Bruce Yes, the frustration that comes with the progression is difficult to deal with.
poohsdaddy I think that we each have days like that. Hopefully, few and far between. I had one earlier this week. It's much better to focus on what we can still do rather than having people pointing out our limitations.
Stan He probably has declined professional counseling too, I suppose.
Bruce In face, Stan, he has gone to counseling on it, but gave up about a month ago.
Tomk The best counsling I ever received was from Dr. Watson at Mayo Clinic.
Bruce I agree that you have to remain positive and focused or it is easy to drift into the "poor me" phase.
Bruce Tomk, what was his message?
poohsdaddy Bruce, is he on Facebook ? or, "e-mailable" ??
Bruce No, he does not use a computer.
Stan I really hate the use of the word "progression" because it implies improvement by definition. I still get frustated when I can't do something, but my type A personality allows me to find a way around the problem.
Bruce I am sorry to bring it up, but the subject of giving up rather than giving in is one I have written about several times.
Tomk Take time to discover your Positive & negatives; change is invetiable but you can adapt an overcome.
Bruce Adapting is such an important part of living with KD. It is amazing how innovative we have become.
poohsdaddy Is there anything I (we) can do to help ? You could give him my phone number if you think it would help for me to chat with him ......
Bruce Thanks, I will contact him and see if he is interested.
Bruce The difficult thing to watch is that he has closed off almost all outside contact ... he does not try to contact family or friends and just waits for 'what next.'.
poohsdaddy Sometimes, I think it helps just to be able to talk to someone who understands. That's why I try to get here for these chats every time.
Bruce Sorry guys, as you can tell it is bothering me. I can normally help (motivate) people, but this is a case where everything everyone seems to try, fails.
Tomk Does he have anybody living with him?
Bruce I agree. The chats and the forum are wonderful vehicles for interaction.
Bruce No, he lives alone.
Stan He probably needs to have something postitive happen to show him he still can be a contibuting member of society. He needs to know he still has value. I kinda felt that way when I was hospitalized for a month-and-a-half a little over a year ago.
Tomk My wife is myBackbone without her Companionship, the Frustrations would overwhelm ME
Bruce While putting together the new website, I was moving the chat rooms over to the new site. In the process, I had a chance to review chats in the early 2000s. It still amazes me how important these chats are for people ... a chance to express themselves and seek out answers.
Bruce Tomk, I understand that. My wife is a saint to live with me.
Bruce Stan, I can understand that also. A brother of a friend just spent months in the hospital with complciations. How he kept a positive attitude is beyond me.
Stan When I was reading the old chats, I was amazed at how relevant the topics still are, and how useful they can be to those newly diagnosed. Like John Coakley's articles.
Tomk The Chat room does provide a place to VENT and talk to others that go through Good & Bad times.
poohsdaddy I know what you mean Stan and Tom. I was in a rehab facility twice for breaking my leg within the last year. And, my wife refuses to let me give up or give in to the frustrations and limitations. She encourages me daily to do things for myself.
Bruce Well, on a different subejct, is there anything you would like to see on the KDA website that is not there? Or, something you would like to see changed?
Bruce Caregivers help us more than they ever know. A little kick in the pants every now and then from someone that loves you is needed.
Bruce I know my dog is also a great help. He keeps me going and always wants to play.
Tomk If the web site could have a National map of Local State HELP sites?
poohsdaddy There was a terrific Social Worker/Counselor that helped to recognize and avoid depression.... at the nursing home. Maybe, we could get one as a guest speaker sometime.
Bruce Tomk, explain that a little further please. What kind of help sites?
Stan Bruce, Only thing I can see that would be needed now for the site is aesthetic changes and keeping it current. I haven't found anything broken since the site was launched. The changes are nice.
Bruce Poohsdaddy, that is a good idea. Thanks
michael17860 Guys I not one to preach, But we have got to know that its all in God's hands. Everyday is a Blessing. My wife left me two years ago and I now live by myself. If it was not for God's Graces I would not have made it...............
Bruce Thanks, Stan, and for everyone else, Stan was instrumental in finding broken links and needed changes. His patience was remarkable.
Tomk Possibly have LINKS to state sites that may offer some type of assistance from...physical care to products etc..
Bruce Got it, thanks
poohsdaddy We babysit for our youngest grandson nearly full-time. He keeps me trying harder to stay as active as possible.
Bruce Michael, thanks for your comments. I also believe that faith is important in living with this condition.
Stan That is a good idea Tomk. I know of a couple for MI. With all the budget woes though, they can't do much.
Bruce Grandkids are great. They challenge you every day and are such a blessing. They also keep you young and smiling.
poohsdaddy :) yes !!!!
Stan What is it someone said? "God doesn't give us any more than we can handle."
Bruce In fact, guys, if you know of any services within your state, please send me the links and I will start to develop a page for this type information.
michael17860 THat is so ture Stan. Remember we are to Blessed to be Stressed............
Bruce I have several sayings that I live by. One is: This too will pass. It is important for me to know that the only thing constant is change and that the good and the bad will pass and another day will bring more challenges, opportunities and gifts.
Stan I found a national site that allows one to search for services by state. Maybe you already have it, but I'll send it anyway.
Stan I'm still waiting for the gifts, Bruce. :)
Bruce Another saying is: Nothing comes into existence uninvited. To me this means that my attitude and perspective are important. How I see a challenge for example can make the difference.
Tomk Guys got to go pick-up my Sister in law The LORD watches over us all...Our trials make Us remmber that Life is not always FAIR.
Bruce They are in the mail, Stan
Bruce Thanks for joining us Tomk
Bruce In the course of receiving emails and calls from those living with KD, it still amazes me that so many will not join the chat room or forum. They seek answers, but do not reach out.
Bruce So many times I find them grateful that there is someone to help, but they still refuse to take the initiative to chat or address their concerns on the forum.
Stan Could it be that tha chat occurs at near lunchtime on Saturday when most people are out doing their weekend shopping and chores?
Bruce Besides a good kick in the pants by the caregiver or the grandkids, what else keeps you going and from falling into a depression?
michael17860 Has anyone heard of any up comming trials with ACJ-9
poohsdaddy Bruce, have you heard from Angela or NIH lately ? The Medical College of WI has started a new study for Parkinson's, but the information may also prove helpful for us with KD.
Bruce Stan, a couple of years ago we sent out a survey asking if some other time or day would be better. The response was quite good. Time did not seem to be a problem except for those in Europe, Australia and Asia.
Stan Projects. If I don't have any, I make them up. I look for things to do. That keeps me going
Bruce I read about the study after you discussed it earlier. I have a friend with Parkinson's and forwarded the info on to him also. Kurt Fiscbeck has been quite good at contacting us with updates, etc.
poohsdaddy Ditto, Stan !! I find lots of things to do too.
Bruce The ASC-J9 article about NIH providing a grant to them was one of the most recent updates. We are also discussing with them about the upcoming exercise trial.
Bruce Dr. Fischbeck became very active in the boards discussion of dutasteride recently.
michael17860 Does anyone know if they are still thinking about IGF-1 compound?
Bruce He also really likes the new site and had some comments about tweaking the wording in the research section.
Gary_KC Bruce, do you have more information about the dutasteride?
Bruce IGF-1 is actively being tested on larger animals. The results of these tests will determine doseage and viablity of a clinical trial.
Bruce Well, Gary, yes. I have written about my thoughts based upon Dr. Fischbeck's comments and others who are taking the drug.
michael17860 WOW any idea when that might happen.
Bruce The main point is that the trial needed to be longer because the progression is so slow in KD. It appears that it works for some and not for others. It also appears that results take a long time to determine because of the slow progression. I started taking the drug this week.
Gary_KC Bruce, I read your blog that was a very postive diredtion, wasn't it?
Stan I'd have to wait and see about the trials. None of them are ever close enough for me to participate. Even the closest MDA clinic is 60 miles away from me. If I'm going to drive an hour or more, it has to be worth my while.
Bruce Yes, Gary, I thought so.
Bruce IGF-1 testing continues and I hear that if results are positive, we could see a trial within a year or two at most. We are expecting a final report on the initial work surrounding the research any day now. It first has to be officiually published before we can make info available.
Bruce When you consider that the last trial showed that progression averaged 2% a year, that is very difficult for someone studying the disease to evaluate the benefits over a one or two year trial.
poohsdaddy I'll have to check out the new website more thoroughly before the next chat to see what and how much I've been missing.
Bruce Yes, please do and let us know if it needs changes or other information.
Bruce By the way, thanks for taking my thoughts away from my earlier discussion. It has been weighing heavily on me.
Bruce IGF-1 and J9 appear to be the two big possibilities in the wind right now.
poohsdaddy Very often, I just check my e-mails and play a few games on the computer.
Gary_KC Thanks lots for all necessary updates of the KDA web-site. It was a great job!!
Bruce The reason I asked you guys about the website is because we cannot see the forest because of the trees. We need outside intervention to help us look for additional ways to show information or make information available.
michael17860 I am taking finasteride, does anyone know if that has the same effect as avodart?
Stan Well if that's what you want Bruce, how about outfitting your new wheelchair with a snow plow for next winter? There are a bunch of YouTube videos on the subject. They work pretty good. Only problem, each plow is a custom job for the chair. I have not found any kits.
Bruce Michael, I believe at least two others are also taking it. One plans to switch to avodart though. When I read about the two drugs, there are differences.
Gary_KC I will also go thru the web-site and let you know if I find anything.
Bruce I am on such a steep driveway that if I started sliding down the hill, I would never get back up.
michael17860 Thank You Bruce, I need to talk to my Dr. to swithch me to it.
Bruce My golfcart last winter started sliding and I missed the curve and headed for the trees. Fortunately, I was able to avoid them at the last minute. Then I played a game of criss-corss the driveway as I worked my way back up the hill.
poohsdaddy :?
Bruce My wife was not very happy with me....
Stan They do not work well on steep driveways, for sure. Attach a winch to your chair and to the back of your van to pull yourself back up.
Bruce Reference avodart, I have not seen any side effects yet other then the horns growing out of my head.
Bruce I figure if Lada Gaga can get away with horns, no one should notice mine.
Bruce Lady ...
michael17860 Got to go guy's Take care and God Bless.
Stan Take care Michael
Bruce Well, I must say thanks to all of you today. Your willingness to offer help has been appreciated.
Stan I have to get ready to go to the Post Office and bank before they close, then grocery shopping
Bruce Thanks for joining us Stan
poohsdaddy Thanks to all !! Time for me to get going too. Gotta get a couple things done before our grandson comes to "play" with Pubba. Hope to see you all here next time.;)
Bruce Thanks again
Stan Chat with you all next time.
Paul Sramek Thanks, Keep on keeping one.
Bruce You too and stay upright
Gary_KC Thanks all. Bye
Bruce Time to take my dog for his walk. Enoy the weekend.