Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

Archives - 2015 and Older Transcripts

Topic: Open Forum  
     
GregF   good morning David how are things this morning
David   Good morning GregF
David   Foggy and cold here in southwest Ohio, how about for you?
GregF   I am in Eastern Colorado and we are having warm weather here for us. weather man is calling for the 60s today
David   We have enjoyed a number of great vacations in the Colorado Rocky Mountains
David   Good morning Gary_KC
GregF   Good morning Gary how are things in KC.
Gary_KC   Good morning. This is Gary joining in from near Kansas City.
Gary_KC   GregF, I am fine thank you and you?
Gary_KC   Hi David.
GregF   Doing well. Are you on the Ks. side or the MO.side
Gary_KC   GregF, I live in Overland Park, KS where is about 30 mintues south from Kansas City KS.
GregF   Gary I know where that is. I grew up in eastern KS.
Gary_KC   GregF, did you.
GregF   Yes in a little town called Council Grove. Its about 90 miles west of you
Gary_KC   GregF, that is a cross from here, isn't it?
GregF   about 60 miles south west of Topeka
Gary_KC   GregF, I see.
GregF   My family still lives there. My brother Has KD. and is on here sometimes
GregF   David Where do you go when you come to the mountains? anywhere specific or all over
Gary_KC   I heard that a person who has KD in Kansas. Probably who is your brother.
David   One of my KD cousin recently asked me about dealing with sleep apnea, he did a sleep study and used a Bipap machine for about six months withoiut success amd wondered about a dental fixture.  He was going sign in today but I thought I get the question started
GregF   Jerry Furman. Most of the time he uses his wifes computer when he signs on and i think it is FurmanS when he is on
Gary_KC   Did he visit KU Medical center? 
GregF   Yes he does and so do I. we have another appt the first of 
GregF   feb.
David   We have visited Rocky Mountain National Park 3 or 4 times so far and then a couple of summers ago we spent time in southwestern Colorado.  We took that Durango train ride, what a great adventure.
GregF   David I use a resporiator when I sleep instead of a Bipap and it helps me
GregF   David we love to go to RMNP but have never got to ride the train in Durango. I have herd it is awesome. 
GregF   I was diagnosed with KD. in Denver. they told me this is what you have and we cant fix it so have a good life. The KU med center is doing good things for us so I drive back there every 6 months
David   If you get a chance to take it call them and let them know you will need early boarding to use the baggage car lift which they have on certain of the trains.  I am able to walk with a cane so was able to select any of the train cars to ride in.  But of you use a wheelchair the selection will be more limited but it would be worth the effort.
Gary_KC   GregF, I visit every 6 months too. My next app is nest week.
GregF   When I was still working I worked in Dorango one summer and never got the chance to ride the train
David   I cannot climb steps and that is why we arranged to use the lift when we made the reservations fir the Durango train.
GregF   We see Dr. Statland and his crew there. It seems like they care about us
Gary_KC   I see Dr. Melanie Glenn and her crew there.
David   In Rocky Mountain National Park we found around 8 wheelchair accessible and farily flat paths around a number of the lakes in the park.  They all had appropriate parking so we were able to take a walk each day around one of those sites what incredible views!
GregF   David I have trouble with stairs as well. I can use a cane for short distances but use a chair if I have to go very far
Gary_KC   When I was diagnosed with KD in Washington University in St. Louis, my doctor told me "I have one bad news and one good news".
GregF   we like to go to bear lake when we go up. It was my uncles favorite so we go there often
Gary_KC   "The bad news is no treatement is available. The good news is you are not die."
David   Gary_KC I had a similar experience with my neurologist when he gave me the diagnosis.  I was thakful to really know why I felt so old and worn out and that this condition did not impact having a normal lifespan.
GregF   My Dr in Denver told me I had to quit my job and get a desk job so I couldnt draw unemployment because the Dr said I was disabled and I couldnt draw disability because he said I could work.
David   The last time we were in RMNP we visited Bear Lake a number of times, early morning was very different experience from afternoon great photo ops
GregF   My kids like to go to RMNP in the winter and go sleading
David   I am a retired accountant so fully understand the disability issue.  In fact one of my KD cousins was the social security attorney who presented at the Alexandria conference two years ago and while he helped many people get disability he also commented that he would never qualifiy.
Gary_KC   GregF, I got a disability 13 years ago when I could not walk and stand up from chair level.
David   We have only visited RMNP in the summer but we've been in at least one snow storm each time.
GregF   I was a heavy equipment operiator and heavy equipment mechanic for 35 years so I understand having to give that up but at 53 years old and no computer skills that made a desk job hard to find
Gary_KC   GregF, I had a desk work but I was difficult to drive car to go office.
GregF   I finally got disibility but it was difficult
David   Did either of you participate in the exercise trial?  I did and was in the control group (we were assigned stretching exercises only).  I still do most of those actions since they really seemed to help me maintain and improve my balance and stamina.
GregF   I wasnt in the trial but the theripists at KU. Med Center started me on stretching excercises and I do them 
Gary_KC   David, no I did not participate in the exercise trial. I was not qualified because I can not walk at all.
GregF   I dont know that they have improved my balance but my legs dont hurt as bad
David   I have also been working with the same physical therapist for the last six years and each visit she has some challenges and confirms whether there have been changes in my abilities.  She has shown me things to do to work on issues that have come up.  For example I started to experience toe drop when walking and she gave me some ankle movements to do.  Those movements and the awareness of the issue has helped me remain safer when I walk.
GregF   I have very little feeling in my feet and lower legs. that with balance issues make me fall a lot. The Dr told me to use a roller walker when I am not in my chair but I am still strugling with pride issues
David   GregF I agree with the pain management part of remaining active, mainly those times when I "forget" to do my routine for a few days.  The pain is a reminder
Gary_KC   You guys are great! Unfortunately, I can not stand up from wheelchair and can not walk at all. I was able to walk with a cane 13 year ago but I got a ancer and took chemo. The chemo probaly damaged my weak nerves.
David   Oh I understand that pride thing and it is a constant struggle to just do what I am able and to not push myself.
GregF   How long have you guys been dealing with KD
Gary_KC   I was diagnosised with KD when I was 36 years old. I was disabled in 46 years old. I am 59 years old now.
David   I was diagnosed in 2009 at age 56, but have been able to attribute some physical limitation issues to KD during my college and early worklife days.
GregF   I am 55 and was just diagnosed 3 years ago It took them 10 years to find my problem because none of the Drs. here have never heard of KD looking back now I can see that I had signs even when I was in highschool
David   GregWell gents it has been great chatting with you this morning I hope you both have a very Merry Christmas and wish you many good things in the New Year.
GregF   Merry Christmas and I hope you stay safe this winter
Gary_KC   David and GregF, the same to you.
David   Well fat fingered the enter again, sorry.  I was going to say that my cousin Tom had a similar experience with getting the right diagnosis.  I was very fortunate that even though my neurologist had no experience with KD he recognized something that made him test me for it from the first visit