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."

Archives - 2015 and Older Transcripts

Topic: Open Forum  
Host: Terry Waite  
TerryW   Hello UTE
UTE's life by the park.
TerryW   Not so good with not much water
TerryW   rain
TerryW   snow
TerryW   Calif crisis situation
TerryW   Hello Robert
Robert   Hi Terry
UTE   Utah's been pretty lucky with there water so far...but winter was very mild
TerryW   Lakes are at 30% of normal
Robert   Glad to be back after a long hiatus
TerryW   I have not been in chat for a while
Robert   not sure if you remember me
Robert   Robert from Canada (Ottawa region)
TerryW   I think so
Robert   how are you?
TerryW   Been better,  been dealing with lots of issues for a while
David   Good Mprning
TerryW   Hi David
Robert   sorry to hear hope things get better
TerryW   I hope
TerryW   Heavy depression and fast progression
Robert   I hope you have support from your doctor and your family
TerryW   some
UTE   My spouse has become ever so more...(literally)...UPLIFTING
TerryW   Still trying to keep myself in the game
Robert   you may recall when I first joined kda i was at the beginning of the disease....this past year I've seen a more faster progression - difficulty with stairs, breathing, walking for long distances and as a result weight gain
TerryW   Hi Ted
David   Hi Ted
TerryW   I am lucky I guess in one aspect as I have not gained much weight since diagnosis
Robert   I've tried to keep active as much as possible but seems to be more and more difficult now and less and less energy
TerryW   Ted,  you still sailing?
TerryW   Robert, I hear that
UTE you have close neighbors out in the country?
TedA   Good morning Terry, David and everyone else
David   I have found it necessary at times to scale back the effort to allow the muscles to recover and then slowly try to increase activity.  I think Bruce commented more than once about not doing more than 75% of what you think you can do.
TerryW   Not really UTE
Robert   went on vacation last month and sadly I was not able to go walk on the beach, even with a cane....something I used to enjoy very much
TerryW   SAme here Robert
Robert   good morning david, ted, ute
TedA   The pontoon boat for my nonproft goes in the water in early May
TerryW   cool ted
TerryW   Hi Gary
Robert   hi gary
Gary_KC   Good morning. This is Gary joining in from Kansas City.
Gary_KC   Hi Terry and Robert.
David   I recall that Mike found a beach rental wheelchair that allowed him to enjoy the beach and actually get in the water, but I do not recall the details.
TerryW   I think it's called a MOBY CHAIR  large wheels
Robert   that's good to know David but I don,t think that service is available in cuba
Ron M   Good Morning everyone
David   Hi Ron how's the weather in Chicago area?
TerryW   It's not an electric chair someone has to push you.
UTE   Lets see we have Kansas City, Utah, Cal, Ottawa, Cuba...???
Ron M   David. It is still cold. Not much relief. How is Ohio. Any better?
David   Lebanon Ohio (near Cincinnati)
TedA   Richmond. VA
Robert   no not cuba - that was a reference to my trip lol
Robert   hi ron
TerryW   Next week its supposed to get to 88 here,  this week it snowed 2 days ago LOL
David   It's rained alot here recently over 3.5 inches but I am glad the temps are in the 40's, we've had years when the precip would have been snow.
Robert   still feels like winter here but we should get warmer weather tomorrow
TedA   Virginia winters are always that way.   snow one day and 70 the next!
Ron M   Might take a couple months for us to see 88 in the Chicago area. I am jealous
TerryW   So, has anyone done anything exciting lately
TedA   Bronchitis for 3 weeks.  :-(
Robert   beside my recent trip to cuba no
David   Ron we made a quick overnight mid-week trip to see Anita and Mike last week and went to Eataly on Ohio Ave.  6200 sq ft of all things Italian.  Had a great pasta meal.
UTE   Started being excited in the beginning that my teams would make it to the final four..but then
Gary_KC   It was rain with wind for 3 days in Kansas. It is 30 degrees this morning.
TerryW   Still hoping to try tandem hang glide soon
Robert   cool
Ron M   David, not heard of Eataly. I only get down town when I have to. But I am always interested in good restaurants. Wass the place busy?
TerryW   lol Eatly
David   Terry. That sounds like a very exciting challenge, not sure I'd be up for that one.
TerryW   Hardest part was finding a place that no running is required.  At the coast I found one with an updraft.
TedA   I watched them at the cliffs new SF.   Never wanted to try but no reson for not doing it
TedA   near
TerryW   I already did the skydive tandem
TerryW   Bungied
TerryW   Spelunked
David   Ron.  Mid-day no, but by after 4:00 in the afternoon when Mike got off work and joined us the crowd was growing but we had no trouble getting a table right away.
TerryW   Ocean dive
TerryW   And river rafted
Ron M   Terry, sounds like a great experience. Not sure I could ever do it. I am more of a sit on the couach and watch sports type of guy. Got March madness going and the baseball season started so I am happier.
UTE   Can't be anything more exciting than taking to the sky
Robert   I,m  with Ron hehe
TedA   I did 5 static line jumps but no free falls in the 1970's
Ron M   Robert - you watching March madness?
Robert   no what is march madness? hockey?
TerryW   It's hard to get motivated to try these thing because of all the What if's that go though your mind.  But once you get there all that goes away
Ron M   Its the college basketball tournament. I fill out bracket sheets with my son. I have won now two years in a row. We bet a cup of coffee and a sweet roll
David   I was really enjoying the Dayton Flyer's run through the madness, they sure came to play, glad they had some success, since most of the other area schools did not.
Ron M   Yes, David, that was a hard one to predict. I didn't see the team play much before. They busted up some peoples brackets pretty good
David   Terry. I know what you mean we went on a Hot Air Ballon ride a couple of years ago and it was not easy getting in and out of the basket.  But the pilot was great he let me crawl in before he fully inflated the ballon and then I stayed in at the end until I cuold crawl out.  What a great experience!
Robert   that is awsome david
Ron M   Where di you do that at David. That sounds like something I might be able to do
TerryW   They are usually very accomodating to people that have diabilities that try to do things
TedA   Big sports in VA are college sports; VCU, VT and UVA.  also NASCAR  and in Richmond we have Flying Squarrles AA baseball team for SF Giants
Ron M   I thought VCU would go alittle further in the tournament.
TedA   So did everyone here.   They got to final 4 last year
Ron M   They got a good coach.
David   Ron. just google hot air balloon rides and you should get a number of sites that serve the Chicago area.
Ron M   Does anyone follow a baseball team. I am a die hard Cubs fan. Looks like it will be another year of disappointment
Robert   used to follow mtl expos :(
Ron M   I will do that David. thanks.
Robert   they were on their way to be world series champions back in 94...until the strike
David   I listen to Reds games when I can and always check the sports report for the evening news.  But it has been a long time since I've attended a game in person. Too many steps.
Ron M   Been some years. Better than the Cubs have done. Robert, how do you handle the cold up there in Canada with the KD
Robert   It has been difficult this year Ron....very hard to walk outside, always afraid of slipping on ice
Ron M   David, you got a decent team now. Not quite the big Red machine but worth watching
TedA   If any of you get to Richmond during the boating season my nonprofit  has a wheelchair accessibe pontoon boat and you can cruise the James River.   Last season we had a 91.8 year old WW II veteran on one cruise and he wants to go again this seaon
Robert   luckily I have someone to do plow the driveway but still have to shovel the steps and walkway....
Ron M   Good to know Ted. I might head tht way at some point.
David   Ted.  That sounds like a great excursion and I will certainly keep it mind when planning a future trip.
frabayrui   hola desde sevilla, españa
Robert   hola frabyrui coma estes?
frabayrui   bien muchas gracias
frabayrui   soy enfermo de KDA
frabayrui   52 años
frabayrui   53 CAG repeticiones
Ron M   Robert, I am going through the same here in Chicago. Had a very tough winter. I am trying to figure out if I should move. Mike talks up the Tampa Bay area in Florida.
Robert   can you type in english frabayrui?
frabayrui   aqui empieza la primavera ya
frabayrui   ok
frabayrui   wait
frabayrui   i dont's speak english but the google traductor for me
Robert   It would be difficult for me to move somewhere warmer Ron - I live alone and my family is all around and close by
Ron M   I am going to try and go to a cubs game this year. Its hard. A lot of people, distance and steps. But I don't know how many I more I can go to.
TerryW   I have to go tend to our horses,  I am alone today.  Wish me luck and no falls.
Robert   good for you Ron - I wish I could go to baseball games but the closest would be toronto - 5 hours to drive
Robert   good luck terry
UTE   Best of luckTerry
frabayrui   I hope to participate in Italy in the clinical trial of Novartis
TedA   Stay upright Terry!
Robert   unfortunately I couldn't care for my dog anymore this year so had to let him go...
frabayrui   it is near of Spain
Robert   but he is not far and living at my sister's and lots of land to run free
Ron M   Robert. I understand. I live alone also. Although I have a 14 year old that lives with me half the time. After my son, I don't have any other family in the area.
frabayrui   there is news?
Ron M   Robert, that had to be hard - to let your dog go. What kind of dog did you have?
Robert   yes husky german shepherd him when he was 3 months
David   Ron.  I have always wanted to attend a Cubs game and Anita lives only about 1.5 miles south of Wrigley.  Let me know if you are able to find out accessibility for that park.  I would think they'd have to have some accessible seats.
TedA   I to live alone and have a tripod cat, miissing 1 hind leg.
frabayrui   have 4 cousins ​​with the same disease kennedy
Robert   too bad we cant share pics here
Ron M   Wow, thats a big dog. I am currently thinking about getting a dog. Gets lonely living alone. I am looking for a small dog. Not sure if I will be able to handle it though.
UTE   When I first moved to Utah I had a malamotehusky he thought my power chair was a dog sled
Robert   frabayrui I have 4 uncles with the disease as well
frabayrui   yes
Robert   UTE one of my work collegues just recently adopted a malamute - he is such a cutie
frabayrui   Terry no coming?
frabayrui   my english is not god
TedA   Cats are easier to take care of, do not have to be walked several times each day and night.
UTE   I have a pom-tese now...he's harder to take care of than a big dog...attitude
Ron M   David, I will. The steps aren't too bad if you sit in the lower levels. I will check into it and touch base with you. Be nice if you came in and we took in a Cubs game.
David   frabayrui. Terry had to leave and care for his horses.
oneredlite   Hello everyone its John
Robert   hi john
Ron M   Hi to Philly. Welcome
UTE   Hi John
David   Ron. I'd like that we will just have to try to find a time to make it work.
Ron M   Ted, I thought about Cats. My son is alergic though. In the past I had a few, They are good companions.
frabayrui   In Seville, Spain there is spings, it is sunny
frabayrui   25ºC
UTE   What part of Philly?
Ron M   David, I am around all summer. Why don't you just give me an idea at some point of when you are coming into town to visit your daughter and we can check the schedule.
frabayrui   Hello Hugo
oneredlite   Was wondering, has anyone join the new clinical trial?
Hugo Rodriguez GGood morning to e3very one. Sorry I'm late
Robert   hi hugo and oneredlite
oneredlite   Oh , I am from northeast Philly
Robert   what clinical trial?
frabayrui   what
Ron M   Hello Hugo - welcome
frabayrui   welcome hugo
frabayrui   trehalose? it si possible the cure with this sugar?
David   Robert the NIH has just started working on a drug trial inconjunction with Novartis and they will be recruiting participants for early next year.  You should contact Angela Kokinis at the NIH to get details.
oneredlite   This clinical trail Sub Q injections
frabayrui   there is clinical trial for trehalose
oneredlite   That is Robert, they are recruiting people
TedA   I am signed up to be in the 2nd or 3rd part due to my Summer being busy and the time commitment
Robert   where is it being held? USA?
David   Her email is Angela (This email address is being protected from spambots. You need JavaScript enabled to view it.)
oneredlite   Well, Novartis is located in New Jersey so I guess is in east coast
Robert   ok tks for the info.
David   This year everything is in Bethesda Maryland, next year there a number of locations in the USA and Europe, but I do not have the details.
frabayrui   I hope for the new treatment IGF-1
Ron M   Anyone planning on attending the KD conference this fall?
David   Yes frabayrui it is related to IGF-1.
TedA   When and where will it be?
Robert   no - unfortunately I cannot afford to go
Robert   hello sfurman
Ron M   Welcome sfurman
David   Ron.  I plan to attend this year.
frabayrui   my email in spain is This email address is being protected from spambots. You need JavaScript enabled to view it.
sfurman   Hello
UTE   Can't physically or monetarily make it
Ron M   I think it is in the Washington DC area? Am I correct?
oneredlite   I will try to attend this year, trying to save up for Washington DC
frabayrui   me gustaria tener amigos en America, soy español
Ron M   i am a not sure. Don't like to fly and it is costly. I am going to check the train schedules
Robert   eveyone nice chatting with you today and I will try to join in more often. take care all
TedA   I think  DC area is correct   Any date set so I can put it on my calendar?
oneredlite   Take care Robert
David   Yes the conference will be in the Washington DC area.
Ron M   Take care Robert. Be well
frabayrui   I like to have friends in America, I'm Spanish
frabayrui   I am affected SBMA
Ron M   Thanks David. My memory is going.
frabayrui   52 years old
UTE   Great to hear from everyone...have a great weekend
frabayrui   i am walk but i begin problems
TedA   Is conference usually in October?
Ron M   I always wondered if KD affects memory. Not as sharp as I used to be. Never read anything that says that it did.
David   The conference committee is just now being formed and they need to work on the details.  The last time it was in the DC area it was in Bowie Maryland
Ron M   Take care UTE
TedA   Memory could be due to all of us getting older
Ron M   Ted, it is usually around that time
UTE   I hear you...I'm nearly 68
David   Ron.  It helps alot that I just got an email from Lou
TedA   ThanKS Ron.   I plan to be there
Ron M   Are you on the committee David?
David   Ron.  It helps alot that I just got an email from Lou Toudar asking for committee volunteers.
Ron M   Ted, I heard it is a great tiome. I am sure going to try. I never been to the DC area. It would be nice to check out.
Gary_KC   I 've got go. It was a nice chart this morning. Have nice spring time. Bye
David   I have not responded yet, but plan to participate again this year.  I am hoping Mike and I can work together on the webinar based access again this year
Ron M   David, sounds like you are a targeted man.
Ron M   Take care gary
TedA   I have been to 3 of the past conference, 1st one in Baltimore then San Diego and Los Vegas
Ron M   The webinars are great. That would be great if it could be done
David   Ron.  That is the way it works, volunteer once and your on the list.
TedA   Met Dr Kennedy at the San Diego conference!
Ron M   Ted, you mentioned you live alone. Do you have much family in the area
Ron M   Wow, that would be interesting. I would love to have talked to him
David   I have attend that last four conference, twice in San Diego, Bowie Maryland and New Orleans.  I always learn something valuable.
Ron M   David, I know you would apprecuiate it also. I always wonder when it will come to the midwest?
TedA   A few family however they are busy and see then at holidays and a few other times.    Mostly see friends and neighbors.
frabayrui   in an analytical blood IGF-1 had decreased
Ron M   Ted, you live in a house or a condo?
David   Ron.  I think that may not happen as long as the location and timing is linked to the large annual neurological conference.
frabayrui   it is a symptom
David   Frabayrui.  I think lower IGF-1 is common for most KD men.
frabayrui   yes
Ron M   David, I am begining to think that you are right. I am holding out hopes though. I just don't travel well.
TedA   Single story condo with attache garage.  Comunity buillt as duplex and 4plex units.   What about you?
David   Well at least for me traveling to the conference this year can be by car.  I no longer enjoy airplane rides.
frabayrui   have great difficulty climbing stairs and walking
TedA   I had the interior designed for me, roll in shower and other things to make life easy
Ron M   I am about the same as you. First floor town home with small attached garage. Its an end unit. The garage is so small though. If I bought a scooter to go outside with. I am not sure what I would do with it.
frabayrui   mushrooms is good to have the trehalose
David   Ted.  I am glad we chose a ranch style home 30+ years ago it has been so much easier to make the necessary modifications.
frabayrui   you think if it si possible the treatment the next year with IGF-1
Hugo Rodriguez To be elegible to Novartis' BVS857 candidates shoul have Serum IGF-1 level less than or equal to 170 ng/mL
TedA   my e-nail for more     This email address is being protected from spambots. You need JavaScript enabled to view it.
frabayrui   Iok
oneredlite   I was think buying a condo with elevator or on first floor too
Ron M   Ted, that sounds nice and what I need to do. Just expensive where I live so I don't know if I want to put the money into it. Not sure how much longer I can work. So, I am just sitting tight and I will make some decisions later
oneredlite   IGF 1 is a type of insulin, so it can be a treatment within 3 years after studies, I quess
frabayrui   I am work in the architecture of my region Andalusia
frabayrui   ok
TedA   That is why I moved back to VA from CA when I retired in 2010
Ron M   Condos are nice. You don't have to worry about the outside upkeep
oneredlite   frabayrui- I like Spain, I have been there 12 years ago in Bercelona
frabayrui   I travel in 2010 a Yellowstone
TedA   Take care everyoneand stay up right!!
frabayrui   for the National Parks in the west
oneredlite   Take Care Ted
Ron M   Takecare Ted
frabayrui   of USA
David   Well Gents it has been a great chat today, but it is time for me to leave for today.  Take care all until next time stay verticle!
frabayrui   AH oK
Ron M   David, Take care
frabayrui   tHANKS
oneredlite   Yes, my friend cut the grass for me and some times I shovel the snow when its not high, but I am very careful
Hugo Rodriguez Keep high our hopes, to produce endorphines also high.
frabayrui   yes hugo
frabayrui   it is possible the power of the mind
frabayrui   and the heart
Hugo Rodriguez Rui, te voy a escribir a tu domicilio
Ron M   Yes, it is important to be careful. .
frabayrui   gracias
Ron M   I need to start my day. Good chating with everyone. Stay upright.
Hugo Rodriguez Bye to every one. Have a nice april
frabayrui   nice springs
frabayrui   for alls