Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Surfing the internet I found the KDA and for me it was like an island for a castaway. Thanks to them, I have a lighthouse to help find my way."

Archives - 2015 and Older Transcripts

Topic: Open Forum
Host: Ron Moffett
GregF   Good Morning from Colorado
bartfarkel Good morning from Montana!
Ron M Good Morning Gary 
Gary_KC Good morning. This is Gary joining in from KS.
Gary_KC Hi Ron
Ron M Good Morning bart
bartfarkel Good morning Ron.
Ron M Good Morning Greg
Ron M Bart, what is the weather like in Montana?
bartfarkel It's been unseasonably warm this spring--60s and such, but cold this week with snow in the mountains
david   Good Morning All
Ron M Good Morning David 
bartfarkel Snow this time of year is good to minimize forest fires in the summer
Ron M Wow, there is snow. Didn't know that. I have passed through Montana but have never stopped
david   After two days of rain it is bright and sunny in southwest Ohio today
Ron M David, how is the home construction going?
GregF   we had snow fri but its gone now going to be a nice day today
bartfarkel I live in western Montana, near the Idaho border. Lots of mountains. Eastern Montana should have been a different state! 
Ron M Here in Illinois. The weather isn't too bad. Supposed to be 60. My sons playing a couple HS baseball games today. I am going to go watch him play later. 
david   We are a couple of steps closer to construction time, which will be in June.  We have an apartment lined up for a temporary home during the 3 to 4 months of of the renovation project
Ron M Sounds beautiful Bart. Not much scenery where I live. I am about 30 miles NW of Chicago
Ron M David, hope the construction goes well and fast.    
david   Ron M congrats on the KDA board appointment.  Are you on the planning committee for the KDA Chicago converence? 
david   That should be conference of course
Ron M Thank you David. I am on the committe. If you have any thoughts or suggestions, please send them my way for this years conference.
Ron M Has anyone on the call today been to a conference. If so, when?
bartfarkel Nope, not yet. I received my positive diagnosis for KD only about 9 months ago, so I'm still learning about the disease (and learning to live with it) :) 
david   So far I have been a regular attendee since 2010 and I encourage all to make the effort I learn so much each year plus there is a lot fun.
Ron M Bart, the positive is that you finally got a diagnosis. How old are you?
bartfarkel Right! I had the usual of my neuro thinking it was ALS, so I am grateful to have KD, if you know what I mean. I'm 42. 
Gary_KC Due to my health condition, I am very difficult to attend the conference.
david   bartfarkel have you visited the Living with KD blog,  Bruce G has shared his experiences living with KD for many years and you can go back and read many posts. 
Ron M David, I didn't know you have been to that many. I am looking forward to this years. It will be my first. Since you have been to quite a few. If you can think of any suggestions to make it better, please let me know.
bartfarkel I have seen Bruce's blog. That and the KD site have been very helpful, and have kept me optimistic that there could be some sort of treatment on the horizon. 
GregF   Do you know when the conference will be?
david   barfarkel, I was not diagnosed with ALS but during my last 10 years of employment I had two co-workers who were ALS victims and you are right we can be thankful for our problem in comparison
Ron M Bart, I know what you mean. They thought the same about me. Davids suggestion is agood one. I learned a ton from reading Bruce's blog. I have found that my drs have not been that well informed. 
Ron M Good morning dandan
GregF   I live in rural colorado and the dr's here have never herd of Kennedy's disease it took almost 10 years for them to figure out what my problem was
dandan Good morning
dandan GregF, the next KDA conference is October 14, 15, and 16 in Chicago
Gary_KC Yes, Bruce's blog has lots of great information!
Ron M Greg, the conference will be October 14, 15 and 16
david   bartfarkel I have made good use of the Smart Exercises Bruce posted to the KDA site.  In fact I took them to my Physical Therapist so that she would understand the condition.  I have worked with Ruth for over 5 years now and have daily routine that has helped me gain some stability, stamina, and strength in various muscle groups.
bartfarkel That's great! I find that when I do light exercise and stretching it helps, although I seem to have "flare ups" when I over do it and then have weakness for several days afterward. Recently I've noticed my knee ane ankle joints have been sore, an the bottoms of my feet. I'm thinking about going to a podiatrist. 
Ron M Bart, I have found that with KD. for me, the word moderation is important. I do better when I don't over do anything and get plenty of rest.
bartfarkel I am going to try to make it to Chicago because I have so many questions and am interested to here what others' with KD journey has been. None of my other family members have it...I'm sort of the first one. So I have no one to relate to
david   Whenever I have a flare up or trouble with a specific muscle I discuss it with Ruth and she helps by giving me some new stretches or moves to address and that is how I have gradually added more moves to my rourtine.  But I still overdo occasionally
dandan I agree, moderate exercise is helpful, but overdoing it results in soreness and weakness
Ron M Bart, it would be great to see you here. Are you still able to work?
bartfarkel Yes. I have a desk job in the legal department of a corporation, so I'm optimisitc I should be able to have a relatively normal working career. Although it's already very difficult for me to climb a flight of stairs. Fortunately, my office has an elevator! 
dandan Bartfarkel, you mentioned that none of your other family members have KD.  Since KD is heriditary and skips generations, it is very likely that one of your grandfathers had it.  Is it possible to check on that?
bartfarkel My maternal grandfather died in a car accident when he was 40, so it is possible he may have been the carrier, but we can never know for sure. None of my cousins on my mom's side or uncles have any symptoms
dandan In my case, my maternal grandfather had KD, but of course they didn't know what it was in his day.  Even so, my grandmother told me about him having trouble walking, etc.; so I felt a connection to him.
Ron M Bart, thats good news. I am 53.. I feel probably 80 at times but I am still working at a desk job. I  work out of my home. I am hoping to hang on another couple years. It certainly helps to stay employed as long as you are able. Sounds like you will be able to do that. 
david   Similar story for my maternal grandfather diagnosed with ALS but lived too long.  I have one nephew and two second cousins who have KD
david   I also have a first cousin with KD 
bartfarkel My biggest concern right now is my house. Great neighborhood and great schools for my kids and I love it, but my bedroom is upstairs, and going up and down is a huge chore. i'm going to need to either add on a main level bedroom or sell this house (which would be a tragedy) in the next 12 to 18 months if my legs continue to get weaker
david   Ron M did you change jobs, I thought when we met you were doing traveling and some type of repair work?
david   My sister was able to put is a stair based chair lift to allow my nephew to still have access to another level in their home.  Have you looked into something like that for your home?
bartfarkel david, not yet, but it's probably an option. For now, I think if I add a second hand rail it may help, at least for a while.
Ron M My fiend also has a chair lift. They are very nice.
GregF   we have a chair lift at church and it is nice but i have trouble admiting that i need it...i guess im still working on that pride thing
david   Keep in mind that when we force our muscle to work hard we may actually lose strenght faster than otherwise, at least that has been my personal experience
Ron M I have felt much better now that the winter is over. The cold jsut crushes me. I think my body just shuts down. The dr says I have lost my muscle mass to keep me warm. How have you guys held up this winter?
bartfarkel Greg: i hear you on the pride thing. There's only a few of my co-workers that I've told I have KD. Others are always asking me "Did you hurt your knee? Why are you limping?" And I just tell them I have a bad back. I don't want to go into an explanation of KD with everyone. But sooner or later they are going to know that something is wrong. 
bartfarkel Ron M , we took a vacation to Phoenix in February and I felt better instantly we got to warm weather. These cold Montana winters are hard on me
Ron M Bart, I probably need to do that. Take a vacation. Phoenix is an area I am looking to move to. Its Arizonia or Florida probably
Gary_KC Ron, I agree with you. I am so glad that Spring has come. It is very difficult to live with cold weather.
david   Cold weather is hard on most KD'ers I met.  and I think part of it relates to having trouble with body temperature regulation. 
bartfarkel I had a couple of really bad slips on some ice, too. while I can stil walk several blocks at a time, my balance is horrible. 
Ron M Yes, David, I agree. It appears though some can handle it better than others. Or, maybe just appears this way. Last night I was out and it was 40 and I was shivering cold with all these layers of clothes on. Just crazy. 
david   Yes my wife and I make quite a pair when we take a walk like now in spring.  I will have hat coat and gloves and she will just have a light sweater on.
Ron M Bart, you have to be careful. I can't tell you how many KDers I know have broken a bone from falling. Its a hazard. You might want to talk to a physical therapist and check into a cane to see if that helps
bartfarkel I notice I get cold a lot easier now, but I still have terrible night sweats when I sleep
Ron M David, how far do you walk when you do?
david   I try to track time more than distance and at this time of year I will keep it to 30 minutes or less, likely a liittle more than one mile but we have a flat neighborhood area to walk around so no hills is important for me.
Ron M David, that sounds nice. The PT told me recently to walk more so I am going to try again. In the past my legs have felt weaker the next day so I stopeed. I am going to try it though. The weather is getting so it will be nice enough for me to walk. I used to walk for miles when I was younger. 
david   One of the other things I've from my therapist is that good posture reallly does matter.  Shoulders back tummy tucked in and back straight makes a huge difference for the impact on my hip muscles
Ron M David, you are talking about when you are walking or in general?
david   And I always use a cane when I walk, it is expecially important for any curbs to step up.  Good posture is important any time just took me longer to learn it for the walks. 
bartfarkel I need to start walking again, too. My problem is I want to try to walk fast. Back to that pride thing...I get frustrated since I'm only 42 and people in their 60s and 70s that are out walking blow right past me. I need to get over it and listen to my body
david   When I first started my exercise routine, her emphasis was on building up the core muscules since they all impact maintaining balance
Ron M That makes a lot of sense
Ron M Balance is a huge problem for KDers
bartfarkel Are there core exercises in Bruce's exercise guide?
david   Bartfarkel I understand the wanting to do more.  The hardest thing for me to accept is that I have to allow my wife to do all of the lifting and most of the yardwork.  I cannot tell you how often I have had to relearn the lesson of doing no more than 75% of what I can do in order to maintain what strength and stamina I still have.
Ron M Men, I need to transition. I wish you all a good day. Thank you for taking the time to join the chat. Take care of yourselfs. Be well.
bartfarkel Thanks, Ron. Good day everyone.
GregF   have a good one guys
david   I think so it has been awhile since I've look at them and some he had at the time I started I could not do.  My suggestion is that you ask your nerologist or primary care doctor for a referral to a physical therapist and take the him/her the smart program and fnad your own best path
Gary_KC It was a nice chat this morning. Enjoy spring time, please. bye
david   Bye Gary