Kennedy's Disease Association

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Kennedy's Disease Chat Transcript   10-06-12

Topic:  Open Forum

Guest:  None

Host:  Terry Waite

 

TerryW
[b]Hello
mattsenac
Hi Terry
TerryW
[b]how are you>
mattsenac
Not to bad today its nice and warm out so I love that. How about yourself?
David
Good Morning
TerryW
[b]Hello David
mattsenac
Hi David
TerryW
[b]Matt,  I as doing ok
TerryW
[b]Pretty updet about these California gas prices. :(  Outrageous
TerryW
[b]Hi Tom
David
Good Morning Tom have you adapted to the new home?
TomK
Hi everybody the Weather & Gas Price are not to BAD... Gas 3.60/gal
TerryW
[b]Some places are as high as $5.50
mattsenac
Yea its not to good in Florida either and of course my van has the big v 8 in it so I dont go far
TomK
New House is done and all Access issues have been addressed including the Kotte Express Elevator etc
TerryW
[b]I have not hosted a chat in quite a while
mattsenac
Sounds NICE Tom Does anyone know if KDA convention is in New Orleans every year?
TerryW
[b]Is the Kotte the elevator that requires no foundation modifications
TomK
At the last KDA conference I attended was in Maryland
David
That is great news Tom I look forward to hearing more about it sometime.
mattsenac
OK thanks I wanted to go this year but am a bit shy on the cash flow.
TomK
The Elevator did require the basement floor to be modified so when the elevator went to the basement we would have a level walk off
Ron M
Good Morning Everyone
TerryW
[b]Hatt,  the conference moves each year to where the Society for Neuroscience has their conference. The doctors and researchers are already there so it saves the KDA money not having to pay to fly the doctors in
mattsenac
Morning Ron
mattsenac
Ok thanks Terry
David
Terry do we know yet where next year's conference will be?
TerryW
[b]they just come over to our conference  because we start ours either before or after theirs
TerryW
[b]Nezt year will be in San Diego Calif
mattsenac
Agh way to far I may have to rob a bank to get to New Orleans this year. Just kidding of course
Ron M
Where do you live Matt
TerryW
[b]Tom,  I have seen the elevatot that works off air pressure relacement that is like a tube that requires no modification.
mattsenac
St Augustine Florida
TomK
David we are planning on inviting you over for a Tour Once the Wife gets done sorting thru 3,000 boxes of stuff
Ron M
That is far. I noticed on the directory quite a few KD members live in Florida
TerryW
[b]replacement,  sorry for the typos
TomK
Interesting Elevator I am interested in more research on the Air System?
mattsenac
The air pressure one sounds nice I had the cork screw type in NY and it just didn't work when it was 20 below and so loud and problems all the time
TomK
My elevator is strictly residential. Price came in around 16,500.00
TerryW
[b]the one I am taling about has a platform that when you get in and close the door it takes the air from above the passenger compartment and pumps it into the airspace below the carrier department aid you go up amd vice versa,  clear tube
mattsenac
I haven't found anyone yet and most support groups I looked at so far are for MS or ALS Mayo Clinic is trying to find something here for me or even maybe start up a group
TerryW
[b]fingers not working well today
TerryW
[b]Matt, you have KD?
TomK
Terry:  Whats the Brand Name I am intrested my Elevator is a SAVARIA Concord
TerryW
[b]Tom I will look it up,  stand by
mattsenac
Yes I do have KD
Ron M
Matt, interesting you say that because living near Chicago I thought I would be able to find a support group but I haven't had any success. The only suport groups I found are Chats like this through the MDA website. If you don't mind Chats. Give the MDA website a view.
TerryW
[b]here is a link http://www.signatureelevators.com/pve.htm
TerryW
[b]there is a video that will play showing how it works
TomK
TERRY:  tHANKS WILL EXPLORE THE WEB page...The biggest drawback to my elevator is if the Power Fails it goes to the Basement ONLY
mattsenac
Yes thanks I have and they also have an MDA rep at Mayo every thursday but it is very limited although I have to say they bought me new tires for my permobile c500 and never asked anything about it just paid the bill so that was real nice
Ron M
They are great. I was just at the MDA clinic in Chicago yesterday. They are all very nice there and I don't get a bill. I just send in a donation.
TerryW
[b]Hi Ron,  I did not see you join,  Welcome
mattsenac
I want to get into some trials but they are always full by the time I see anything Anyone else tried anything new that helps with strenth at all?
mattsenac
Yea I and my family and friends all donate what we can when we can.
Ron M
Hi Terry, thank you for hosting. Are you going to the conference
TerryW
[b]I hired a neighbor kid as my muscle :)
TerryW
[b]I will be at next years conference, could not make it this year
TomK
The MAYO Clinic was my Final Verdict on KDA back in 2005.
mattsenac
Yes that final verdict as you call it is bitter sweet
David
Matt - I have had good results using some of the exercises that can be found on the KD website.  I work with a physical therapist and have better stamina and stability as a result.
TomK
Must say the MAYO Clinic is the finest & friendlist Facility I have ever been in!!
mattsenac
I use them as well it def helps with transfering
David
One of the sessions at the conference next week is on an Exercise Trail currently underway at the NIH.  Have you thought about participating in that trial.  I think they may still be open for new participants.
Ron M
Matt, I am trying to figure out this strength thing myself. Had not had much success. I know Bruce swears by exercise. if I may ask how old are you
mattsenac
Im 48 Ron
mattsenac
David I will look into that trial at NIH do you have the url?
David
Matt you can contact Angela Kokinis at This email address is being protected from spambots. You need JavaScript enabled to view it. for more information
mattsenac
Ron I was in perfect health and a horseshoer for 18 yrs then at 30 started falling and grades and steps were becoming difficult
Ron M
We are about the same age. I will be 51 soon. Have you lived in Florida all your life.
TomK
Matt:   I was the aggressive Firefighter until Age 39 when I started realizing that I am either OUT OF SHAPE or having a serious Muscle Problems.  Now 61 yoa and retired firefighter.
mattsenac
No I grew up in Michigan came here for 4 years after high school then moved to Saratoga Springs NY for 23 yrs had three kids big farm all that and then got divoriced 3 yrs ago and said see ya I got to be were its warm.
TerryW
[b]Horseshoeing is back breaking work.  I watch our ferrier and see how he struggles and our horses are very calm
mattsenac
Yea good money for sure
mattsenac
Cold never botherd me but now I just completely get almost in a paralized state
TomK
The change in Temperature has a really bad effect on my Leg Muscles..
mattsenac
Horeshoeing and Firefighting tough jobs but I have alott of respect for you Tom as a firefighter scary stuff
TerryW
[b]I wear long pants most of the time and socks here in calif because the cold affects my legs and feet bad
TomK
I was always considered Firefighting to be a Challenge not really scary.
Ron M
I experienced a divorce myself. Grew and have lived near Chicago all my life. I hate the heat so I will stay in the midwest. I am just trying to find a less expensive place to live. Not sure wher that is yet
TerryW
[b]when fire fighting a fall is not what you need so it's best you got out
mattsenac
Yea thats a hard part of it my 3 kids still live up North and I just cant do it so they come here when they can but my Mom and Brother are here and my Mom is my main caregiver right now at 72 and still teaches kindergarton one hell of a woman.
David
The cold weather seems to be a problem for most of us.  Our daughter lives in Chicago and I do not look forward to winter time visits, it just seems a lot colder there than southwest ohio
TomK
That why I retired its really BAD when you are the Assistant Chief and you FALL when you get out of Your Car
TerryW
[b]:(
mattsenac
I hear ya Tom. I fell and broke tibia and fibula and that was the last straw I got a train ticket as soon as I could travel and came back to the heat
TerryW
[b]It has been 10 years since we created the KDA.  It seems like longer to me.
Ron M
David, if you come into Chicago to visit your daughter and if you have time. Shoot me an e-mail and I can meet you for lunch. I am listed in the KD directory
TerryW
[b]I felt so alone when I was diagnosed that we knew that we had to do something to help others
TomK
My first conference in Maryland  made me Feel Like KDA was the Support Group I want to be associated with.
mattsenac
Thats very nice I am glad its here I missed the last couple of months just totally forgot but put a big post it on computer last night
TerryW
[b]I hope we have helped you Tom
David
Ron -- I am heading to Chicago on the Megabus nest Monday morning.  Anita (our daughter) is traveling with me to the conference we are flying on Tuesday to NOLA.  I should arrive between 2 and 3 Monday afternnoon.
mattsenac
I think the mental game is so much harder than the physical part of it all
TomK
You have been a very valuable resource.  If I have a question or concern its nice to KNOW THAT KDA is Out There!!!
TerryW
[b]:)
David
Terry I know I would have been completely lost and finding answer so much more difficult if you had not made KDA happen.  THANK YOU!!!
Ron M
KDA has helped me graetly. More so than the doctors.
mattsenac
Is all of the information shared somewhere after the KDA convention in case I cannot make it?
Ron M
David - are you going to be in Chicago then the 1/2 day from Monday to Tuesday? Are you listed in the KD  Directory
TerryW
[b]The other day I was walking with my cane on a gravel drive,  I bent over to pick something and my legs gave out and I was on the ground,  no one around.  I tried for 20 mins to get myself back up but could not.  The fravel was very hot and I ended up having to crawl about 200 ft on my hands & knees to my truck wher I was able to open the door and finally get up,  my hands and legs suffered the most from the sharp hot gravel :(
TerryW
[b]The gravel
David
Matt - yes the organizier plan to video tape the conference just like last year.  You should be able to locate the material from the 2011 conference on the KDA website.
TerryW
[b]I was in shorts
TerryW
[b]my luch
TerryW
[b]luck
mattsenac
Agh that stinks I had that happen on black ice long ago when I was using a cane but ended up getting to my phone and calling 911 and of course they thought I was just some drunk but they picked me up but I thought dang I am going to die right here scary stuff
TomK
I do Know when I fall, l I feel like Whale Out of Water
mattsenac
Thanks David I will locate it
David
Ron -- I will have time Monday afternoon and we could meet for coffee or if you'd like you could join us for dinner that evening.  cell phone 513-378-5201
TerryW
[b]We can all relate to each other on this
mattsenac
Yes its an awful feeling I have given up trying to walk at all. I just stand quick and pull my shorts up thats it.
TerryW
[b]Public bathrooms or friends bathrooms can be a issue if they are not laid out right
mattsenac
Yes a huge problem but the more family bathrooms are being put in around all ove so that helps
TomK
Got to GO Guys enjoyed the CHAT.!
mattsenac
By Tom
TerryW
[b]see ya
Ron M
Thanks David. I don't know my work schedule at this moment but one or the other should work. My cell is 847-846-6631. I can touch base with you next Sunday to get more details. Do you know what area of Chicago you will stay at?
David
Sorry Ron thinking too fast, I am coming up 10/8, in two days and will be staying at the Days Inn on Diversy(sp)
mattsenac
Anyone know of a genetic counseling KD specialist anywhere My mom and sisters brother and my daughters are in need of private testing/counceling. They are afraid of being a carrier and insurance finding out then being denied life insurance etc.
David
Matt Angela at the NIH can help you with that also when I was there in June she mention an NIH staff person and offered that service for one of my nephews.
Ron M
I don't know of anyone
David
Matt -- Angela mentioned that all testing and information they accumulate is kept confidential and they do not bill insurance for the test.
TerryW
[b]I will catch you all later.  I have got to go.
mattsenac
Thanks David.
David
Angela can also be reached at 301-451-8146
Ron M
David. I am not sure if this Monday will work. I know the area. I will call you Monday and find out your arrival time. A lot would depend on that and if I can flip my schedule.
mattsenac
Thanks so much.  I will give her a call.
mattsenac
See you next month.  Thanks for all the info!~
Ron M
Take Care Matt
David
Well Gents it looks like we have come to the end of our chat time and so I will leave you with the KD motto -- stay vertical!