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."

2016 Chat Room Transcripts

Topic: Open Forum  
moseremous   anyone here?
moseremous   howdy all, great to see such a huge turnout
moseremous   anyone got any tips about cramps in cold weather?????
moseremous   Was taking Quinine sulphate, but govt took it off "free" list and now cannot afford it!
moseremous   I'm in Australia
moseremous   Oh well, trah lah lah. Take care guys and keep upright.
Gary_KC   Good morning, all. This is Gary joining in from KS. It is a nice sunny day this morning.
DavidOhio   Good Morning All
Gary_KC   Hi David
GregF   Good Morning, sunny and 65 here in Colorado. 
DavidOhio   After a little rain this morning and now we have bright sunshine should be a good spring day
stewart   Good morning from SoCal
DavidOhio   I have been dealing with sleep problems for a little over a week now, just can't seem to get to sleep and stay that way for more than an hour or so.  No specific aliment just overall discomfort.  Would be interested in any ideas about how any of you have handled similar issues
GregF   David I have had the same problem. My head hits the pillow and my eyes slam shut for about 2 hours then I am up and down the rest of the night
DavidOhio   My wife wants me to try some Benadryl, apparently this allergy med also causes sleepiness I guess it is worth a try. 
GregF    I have tried the Nyquill sleep stuff and it didn't seem to help
DavidOhio   Good to know Greg, I tried melatonin but no real change for me.  Sometimes an over the counter pain med helps but not recently
GregF   I also have had the numbness and tingling that I have had in my feet for years move into my hands lately and that is a real bummer 
DavidOhio   Sorry to hear that Greg, I too have had that sensation in my feet in particular at bedtime, something a little heat helps we warm some rice in a fabric bag as a warm compress. I use some hand therapy putty each day and that seems to help keep my hands from bothering me.
GregF   I use the putty too, It helps me continue to be able to pick up small things I think
GregF   Wow you guys are quiet today
GregF   Gary I was back close to your area over the weekend, it was good to see how green things are there
Gary_KC   GregF, it is beautiful new green leaves in here now.
DavidOhio   I think today is more of an open forum so just jump in if you have a thought or question about dealing with KD
GregF   The lake at Council Grove is full and that is good to see again too
Gary_KC   David, do we have any research update?
GregF   David I remember you talking about the warm rice before. Do you put it in a bag and warm it in the microwave?
DavidOhio   Nothing on the trails but I saw a couple of messages from Bruce (on his living with KD blog) and I think the same item was in the monthly message from KDA this morning.  Progress is being made on many fronts and the knowledge base continues to grow with is all positive.
Gary_KC   David, I see. Thanks. 
DavidOhio   Yes my wife makes some flannel bags and puts in about a pound of rice or more depending on the size and then heats the bag to about one minute on high in the microwave
GregF    I think I will try that thank you
DavidOhio   I also have a bag in the freezer and use it primarily for my left shoulder whenever I tweak a impingement putting that on for about 10 minutes at a times seems to help with the inflammation.  In fact I am using that treatment now since I did something to get it angry with me recently.  Typically takes a few days to resolve it and if not then I go see the physical therapist for help   
stewart   I participated in the IGF1 trial, they haven’t wrapped things up yet so no results are in, we should hear more at the conference.  
GregF   I hadn't thought of rice for cold 
DavidOhio   I separated that shoulder several decades ago wrestling in high school
GregF    I tore up my knees working in the oilfield I think I will try it on them
Gary_KC   stewart, thank you for the update.
Johnson   The article on the research being conducted at MSU was very exciting . My understanding is that it focuses on using gene therapy on the muscles involved in KD instead of the motor neurons.  It stated this is a paradigm shift in the field and strongly implies current research has been barking up the wrong tree.  
DavidOhio    What I really like is not dealing with ice melt and the small grains allow the compress to wrap around the shoulder or whatever joint is involved
Johnson   Is anyone else  excited about this?
DavidOhio   Now you got my attention Johnson and I will be sure to read through it carefully later today or tomorrow
Johnson   It is referenced on the KDA home page. 
DavidOhio   I know that when they determined that they could focus on muscle cells as well as motor neuron cells that open many new areas of research since treatment of muscle was technically easier than nerve cells
Gary_KC   Johnson, I understood that muscle would be treated more easy than nerve.
Johnson   That's what it says.  Maybe this explains why the clinical trials don't seem to be as successful on humans as they are in mouse models.
DavidOhio   Something about not needing to address the blood - brain barrier.  Apparently one of the body's defenses helps to keep bad things away from the nerves and that then makes finding ways to treat motornueron disease more difficlut
stewart   It’s been awhile since I’ve been on the Chat, I’m not used to this new format. I understand there will be someone at the conference from NIH who is familiar with crispr gene editing, very exciting stuff.
DavidOhio   Stewart I guess you are not allowed to share much about your experience yet, right?
stewart   Not much to share really,  It was short trail when you consider the idea is to regenerate lost muscle, the MRI etc would be more telling, which I didn’t get to see so the jury is still out. I may have been on the placebo time will tell.   
DavidOhio   Ok that makes sense.  I hope you are right that they can share something at the conference this year, but I suspect it may still be too early for any comments on results.  These trials always take longer than we'd expect.  I am just glad there is a human trial and that guys like you were willing participate. 
Johnson   I agree!
stewart   well I have to go, have a great week take care!! 
Johnson   Me too.  So long guys
DavidOhio   Until next time I hope you all have a great month and that everyone stays vertical
Gary_KC   It was a nice chat this morning. Let's enjoy summer time. Bye now.