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."

Archives - 2015 and Older Transcripts

Topic: Open Forum  
Host: Ron Moffett  
Ron M   Good morning Ted
david   Good Morning Ron and Ted
Ron M   Good morning David
Ron M   Ted, ru able to stay on the chat or r u drooping?
Ron M   My typing is bad today. I meant dropping
Ron M   David, how is Ohio? Good summer weather
david   Ron it has been a very good July weather wise here, only 1 day in the 90's which is not normal.  But we missed a week and a half of it while on vacation in southwest Colorado.  How about weather up there, I know from Anita that it has been stormy.
Ron M   Hi Tom Good morning
TomK   Thank You it is a good Morning in Cincinnati
Ron M   We have had a bad summer in my opinion. It has beeen too cool and stormy. A lot of rain this year. I am hoping for a warmer August.
david   We visited two national parks, Mesa Verde and the Black Canyon of the Guinnison.  Both are have some amazing sites that those of us with more limited abilities can experience.  Not quite as ADA friendly as Rocky Mountain National Park but still well worth the effort.
Ron M   You guys, Tom , David. Might not live far from each other.
david   Morning Tom how has your summer been so far?
Ron M   Good Morning Bruce
TedA   Finally got it working correct!!!
TomK   Dave & I are Relatives off the Same Family Tree
david   Ron Tom and I are 2nd cousin and we live about 45 minutes from each other.
Bruce   Morning
Ron M   David, how has your daughter been doing. Is she still living in Chicago?
Bruce   Morning Mike
MikeG   Morning everyone
MikeG   Sorry, that I don't have time to stay and chat today but I wanted everuyone to know the chat next month will be with Dr. Andy Lieberman. He will be speaking on "Skeletal muscle as a possible therapeutic target for Kennedy disease".
Ron M   David, very nice. Didn't know that. That is great support
MikeG   This will be another AnyMeeting webinar type chat with audio & visual presentation. If you have done done so, check out to be assured your computer is compatible with the website software.  We will have the capability to have 6 webcams online in case you want everyone to see what you look like... :)
Ron M   Good Morning Mike
MikeG   Here is the URL for the chat next month, September 6th:  KDA Meeting URL:
MikeG   Gotta go - hopefully I'll see you next month.
TedA   Just wanted to say Hello as I am meeting a friend soon.    Take care and see you  in November!
Ron M   Mike, thanks for jumping on and sharing. Have a good day.
david   Tom, we have engaged the services of an architect to make modifications here and sometime I'd like to talk with you about your building experience and to see if your builder would be interested in a Lebanon renovation opportunity.
Ron M   Have a good day Ted
TomK   Dave not sure how far East he goes but I do know that he has done some homes in Indiana.
Ron M   David, what kind of modifications have you made or are you thinking about making?
david   Tom let's connect via email offline This email address is being protected from spambots. You need JavaScript enabled to view it.
Ron M   Bruce, how have you been feeling? R U having a good summer?
TomK   Dave I am looking up Bryan Schmidt's e-mail give me a minute!
Bruce   Doing good, thanks.  Yes, we have had two cool breaks making it much nicer.
david   Ron, we have identified the project as "Aging in Place" and so we looking to modify the master bath to include a roll-in shower, modify door ways and create a no steps access/egress.
Ron M   Bruce, we have had cool breaks here and I am the only one in IL wanting it to be warmer by about 10-15 degrees.
Ron M   David, I think about a roll in shower. That would be nice. When you are talking doorways. R u talking about making them wider?
TomK   Dave can you come over some evening for a Home/Site Visit?
Bruce   David, I need to do the same thing in our master.
Bruce   Morning Gary
Ron M   Good Morning gary
Gary_KC   Good morning. This is Gary joining in Kansas City. It is cool summer this year.
Gary_KC   Hi Bruce and Ron.
Ron M   Gary, same here in Illinois. Just not good for me. I need it alittle warmer
david   TomK absolutely we can make that trip some time.  Besdies we need some time to catch up, another one of our cousins has been diganosed with KD.  Bruce B.
Ron M   Bruce, was trying to figure out if muscle pain is associated with KD. Do you have any thoughts on this
TomK   Dave my Builders E-mail is This email address is being protected from spambots. You need JavaScript enabled to view it.
Bruce   Yes, for me anyway.  As muscles waste, I had deep aching.  Since I have a lot less muscle these days, I have a lot less aching.  :-)
Ron M   Gary, how r the winters in KC. Do u guys get any snow. What r the coldest temps in January?
Ron M   Bruce, thats funny but I say it because my legs. Mainly the quads just ache. What have you done in the past that helps
david   Ron, yes the we have decided it would be best to consider what might needed as we get older and make the accomodation necessary for a wheelchair, which includes door way width and turning space etc so that we are forced to do it in a hurry.
Bruce   ibuprophen - one tablet occasionally does the trick for me.
Ron M   David, thats smart. Sounds like you are committed to living in Ohio for awhile. I know you like it there.
TomK   David I just went through the Hassle of getting a Wheel Chair approved with My Health Insurance.  A LOT OF HOOPS TO JUMP THRU!
Ron M   Bruce, I will give that a try. I haven't taken anything. Hot baths help but it is only temperary
david   Ron, not sure if we discussed this last year on our Chicago visit, but are you on a Statin for cholesterol?  If so you should consider an alternative.
Bruce   I usually put up with it during the day, but take one tablet about an hour before bed.  It does the trick.
Ron M   Any one else deal with muscle pain with KD?
TomK   No Muscle pain but a slight tingling in Legs if I sit longer that an hour!
Ron M   David, no I don't take Statin. I am fortunate that I don't have issues with cholesterol
david   Ron, I typically have some low level pain each day and whenever I push myself too hard I will have more pain and sometime like Bruce mention I take ibuprophen at night and it helps me get to and stay asleep.
Gary_KC   Ron, sorry to late. I was reading the chat log. It was below 5 or 10 degrees in January this year.
Ron M   I am going out today and getting a bottle of ibuprophen. The pain is just terrible and endless. thanks guys.
Bruce   In my 30s and 40s, the muscle ache could be quite distracting at times.  Today, it is easily managed.
david   Tom, when working on getting the wheelchair did you go somewhere to have a professional determine what was best for you?  I have not needed it yet but understood that the local MDA provides that service.
TomK   David got to go, but will e-mail you for some times for a Home visit!
david   Tom have a great day see you.
Ron M   Gary thats cold. I guess KC is out for me. Looking to move to a warmer climate. I am trying to figure it out. Didn't know KC could get that cold. Thats like Chicago.
Bruce   Ron M, remember that ibuprophen is strong. One tablet does the trick for me.  If you take it quite often, it can make you constipated. So, drink plenty of water.
Ron M   Bruce, thanks. Good to know. I already have problems with the constipation so I will be careful
TomK   David:  Your Doctor will tell you to see a Occupational Therapist that specializes in Wheel Chair Evaluations.  He or she will then do the Evaluation and make recommendations.
Ron M   Anyone have any vacations planned or trips.
david   Bruce, didn't both you and Milke G move to warmer weather areas?
Bruce   David, yes, and it helps loads.
TomK   Only plans I have are for My Daughters Wedding in Novmeber.
Ron M   Tom, very nice. Where is she getting married at?
Bruce   Yet, it still gets cold in northern Georgia.  Florida or Arizona would even be nicer.
Ron M   I believe Mike G loves the Tampa Bay area.
TomK   Well her and her fiance will come back to Cincinnati from Chicago to get married at Our Lady of Visitation Church.
Bruce   David, like TomK mentioned, a seating specialist is important.  The MDA can usually recommend one in your area.  My first chair I just bought. The 2nd one was different and the specialist evaluated my capabilities, weight, strength, posture, etc. The seat and back are really comfortable in my current chair.
Ron M   Good morning Deltalima0
deltalima0   Good morning guys
Ron M   Deltalima0, how is the weather this summer in SC. Warm?
deltalima0   It has been but cooler the last two days
TomK   Bruce hit the Nail on the head If you going to spend some money get a Person that is Familar with KD and can relate to future needs.
david   TomK, all I can say is just let the ladies make the plans and sit back an enjoy the experience.
Bruce   I really liked how my specialist asked what I liked to do for activities, hobbies, etc. It helped her determine my needs.
Ron M   deltalima0, appears that has been the trend all over the country.
david   The wedding experience of course is what I meant
TomK   That been the story at my house for 38 years she makes the plans I just follow ORDERS
Ron M   Tom, sounds like you have a good marriage
Bruce   Well, I have to go.  Good chatting with everyone.  Stay upright and active.
deltalima0   Ron M yep its nice but we have had it with rain so its hurting my golf game. i like to get out once to twice a week
TomK   GOOD WIFE.... but slightly bosse!
Ron M   Have a nice day Bruce
TomK   Got to go Guys... talk to you next Chat!
Ron M   Take care Tom, have a good day
david   Take care Tom
deltalima0   I got here to late evryone is going
Ron M   Anyone been to Gettsburg. I am heading there next week. I am very excited
deltalima0   Ron M no but i hadd afriend that went every year and he loved it
Ron M   deltalima0, it happens. People sign in and out. How long have you had KD?
david   Ron, we were there over 10 years ago but really enjoyed the experience.
deltalima0   Ron M diagnosed 3 years ago I started noticing weird things like 30 i am 46 now but still able to do prety much all things i have lost some strength in legs some
Ron M   deltalima0, thats the feedback that I get. Everyone I talked to says they enjoyed it. I like history so I know I will enjoy it.
david   deltalima0, it is great that you can get out on a golf course regularly.  The only time I go out now is when a group from church has a golf scramble and join a foursome but my only contribution is putting.  If I tried to use any other club my shoulders would soon let me know that was a very bad idea.
Ron M   I was diagnosed about 3 years ago also. I notice a lot of weakness in my legs as well. I am 52. Things are getting harder to do. R u still able to work deltalima0
deltalima0   I cramp alot now but still able to run climbs stairs stand on tip toes push ups just when i run feels like i have a firsst and 2nd gear never able to kin in to overdrive
Ron M   deltalima0, i find drinking a lot of water helps. I start my day with at least 2 galsses of water to help cramps.
david   What I have found very valuable is Bruce's advice on any exercise that is to determine what you can do but try to do only 75% of that.  I've done that for a number of years now and have been able to slowly add additional activity.
deltalima0   yes i am an air trffic controller and most work is in radar when going to the tower we have an elevator an its only three flights of stairs from there
Ron M   I agreee, I have started exercising and that has helped. Not with pain though and not with my feling of extreme fatigue
david   What I think we KD guys need to avoid is pushing ourselves to anywhere neat exhaustion, because we damage muscles have pain and then do not recover well
deltalima0   I sweat easily and profusely if its hot after a round my body lets me know it muscles cramping and twitching everywhere
Ron M   David, that is true. Specifically, the recovery part.
Ron M   David, do u have any plans to come to Chicago to visit your daughter?
deltalima0   i use to love the gym and working out one of the main things i miss is the physicality of moving weights now i just do my a few sets of deep squats without weights and it gets tough and push ups i was doing pullups still but thought i was pushing it to nuch doing them so i stopped them 2 years ago
Ron M   deltalima0, is being an air traffic controller stressful?
deltalima0   i think it depends on the person some controllers are high strung me i dont find it streeful at all there are stressful moments but they are not that often
Ron M   I can relate. I loved the gym as well and used to be in great shape. It is humbling watching my self get weaker. When I exercise. I now use little or no weight.
david   We will likely make a trip some time this fall, if nothing else around Thanksgving again.  So far this year they have come this way frequently so far this year.  But with school starting again for Mike and Anita's job I am sure it will be our turn again soon.
david   Ron I will let you know when we have some plans and we will see if we can work out another visit.
Ron M   deltalima0, thanks. I was always wondering. It appears that u can have moments of stress like you mentioned.
Ron M   David, that would be great. It would be nice to chat again in person if you come in. Just let me know.
deltalima0   Ron M yep all my exercise is just bodyweight stuff and yes it is tough a realization
Ron M   Gary, ru exercising at all?
Gary_KC   I was diagnosed with KD 18 years ago. I am 57 years old now. I can do a light exericse with 15 minue
deltalima0   Gary_KC you still walking?
david   I recently made my plane reservations for the KD conference this year. Anyone else planning to make the trip?
Gary_KC   or a little long, 3 times week.
Ron M   I am not but if anyone has any tips on flying. Let me know. I haven't flown in awhile
Gary_KC   deltalima0, no I can not walk at all. I use a wheelchair in home and use a power scooter outside.
Ron M   Dary, what kind of scooter do you use?
Ron M   Pardon me Gary, what kind of scooter do you use
david   I will be 61 in a few weeks and am very thankful that I can still walk well, for example my wife and walked a little over a mile this morning.  But I cannot do steps.  I also have a regular daily low impact routine more like stretching and other movements that just seem to help keep things moving well.
Gary_KC   Ron, I have an Invacare Zoom 3 that I bought 15 years ago and have a powerd chair shoprider.
Ron M   Happy b day David. How do u feel after the walks. A mile is a long distance
deltalima0   david wow great I hope I am able to continue as I am for a long while
Ron M   Gary, thanks, I assume you have a van with a lift?
david   Ron, we have found Frontier Air to be very accomodating and reasonable if you book well in advance.  They just added a flight from Cincinnati to Washington DC Dulles and the round trip cost (fully refundable fare) was less than $240.  I get front row seats with a little more legroom.
Gary_KC   Ron, no I gave up driving. I use a shuttle bus service for disability that supports a poin to point location.
david   Ron I feel fine after the walks, what I have found is that as with my other routines if/when I get tired stop and rest.
Ron M   Thanks David. I will check it out. Didn't think about booking front seats. Not sure if Frontier flies out of Chicago but I will check.
Ron M   David, interesting. I used to walk a lot but now I have held back because I am not sure how I would feel. Might give it another try.
david   Well gents I need to drop off now.  There is a group of high schoolers who are washing cars today as a fund raiser and I really need to take advantage of (I mean support) them
deltalima0   breakfast/lunch is ready take care guys and be well
Ron M   David, Funny. Have a good day
david   Ron as with any activity start slow and just see how you feel, let your body tell you and trust me it will tell you.
Ron M   Take care deltalima0
Gary_KC   I got to go. Stay cool, please. Let's talk at the next chat. Bye.
Ron M   Take care Gary
Ron M   I am going to start breakfast. Take care Tom
frabayrui   buenas tardes desde Sevilla (españa)