Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am glad to finally see information being made available about this disease.. THANKS for the website"

2016 Chat Room Transcripts

Topic: Open Forum    
DavidOhio   Good Morning from sunny but chilly southwest Ohio  
ToddAllen   Good morning from Chicago.  
GregF   Good morning from Colorado  
DavidOhio   ToddAllen has the celebration settled down a little from the Cubs success?
ToddAllen   I was oblivious to the whole thing until I was awoken by fireworks.  
Gary_KC   Good morning. This is Gary joining in from Overland Park, KS near Kansas city.
ronmoffett   Good Morning Men !  
ToddAllen   My wife Sara said it was crazy downtown yesterday.  
DavidOhio   Good Morning Ron  
DavidOhio   Is anyone heading to the conference next week?  
ronmoffett   It is another beautiful day here in Illinois. How is Ohio David ?  
ToddAllen   Myself, my attention has been focused on regaining my health and fitness and maybe not as successful as the cubs but it has been going extremely well.
Gary_KC   We have lots of Oak trees. It is still very warm and lots of oak mites.  -(
ToddAllen   Yes, I'm flying to San Diego on the 8th.  
ronmoffett   Gary, How warm is warm ?  
Gary_KC   It was under 50 degrees in mid October but it is about 70-80 degrees.
DavidOhio   That is great to hear Todd, your experience can help us to take control of some aspects of our lives with KD.  I continue to have success with low impact activity consistent with what Bruce has posted in the smart exercise section of the KD website.
Gary_KC   So the oak mites are still surviving.  
ronmoffett   Gary, that's a nice tem. I didn't know KC had that cool of weather. Do you get a lot of snow ?
GregF   we had the 2nd warmest October in history here, and its still in the 70s
DavidOhio   Gary_KC we have had a very warm fall so far also, this is the first taste of "normal" fall like temperatures.
ToddAllen   I'm now experimenting with high intensity body building type exercise to regain muscle.  Unfortunately I developed a hernia, surgery 2 weeks ago.  But I'm now back to some light weight training.
Gary_KC   Yes, we are usually below 40 degrees in early Nov.   
DavidOhio   Earlier this week we had two days with record high temps for the Greater Cincinnati area of 81 degrees
ToddAllen   Weve a 10 foot tall banana plant in our back yard.  In Chicago.  
ronmoffett   Todd, how do you keep that alive in the winter ?    
ToddAllen   We'll cut it down and put the root ball in a pot.  
ronmoffett   Makes sense.   
ToddAllen   We have skylights in our attic where it will grow back over the winter and go out gain in the spring.
DavidOhio   That banana plant survives Chicago winters?  I barely make whenever we visit our daughter.  However this year we will spend most of December in order to et to know our first grand-baby and "help" the new parents. 
ronmoffett   Does anyone go to and utilize a MDA clinic ?  
Gary_KC   I hope something new announcements in KDA conference next week.
ronmoffett   David, How is the grandbaby and the new parents doing ?  
ToddAllen   There used to be an MDA clinic associated with my neurologists office but as we had good insurance I never looked into their assistance offer.
DavidOhio   Ron that is on my list, but at this point I hesitate to use the services since my mobility needs are limited at the moment.
Gary_KC   Tod, I see MDA clinic every 6 months. They are very kind and helps us.
DavidOhio   The baby is not due until December 1st.  However we will be there for Thanksgiving and that is close enough for some excitement if the little one decides to make his appearance a little early. 
ToddAllen   I think the MDA provides great support to many.  When I was working I regularly donated.
ronmoffett   Gary, I do the same. I only ask because they are changing their format and to my understanding are not going to help out with co pays. Is that your understanding Gary ?
GregF   I have had a great experience with the MDA in KC. I have been disappointed with the one in Denver 
ronmoffett   Todd, they have helped me tremendously. I donate regularly to them because they have provided me with free care at times. Now, I guess that is going to change.
DavidOhio   One MDA service that I plan to use is to have the proper fitting for a wheelchair if/when that become necessary.  I just remember from one of the first conferences I attended that a number men encouraged others to get a proper fit, because it can make a huge difference in comfort and ability
Gary_KC    BTW, I take a supplement that is Acetyl L-Carnitine 1000mg, 1 cap/day. It helps my cold fleet and swelling. I will tell yours more in this winter how it works.
ToddAllen   That's sad to hear.  I thought of the MDA as a potential safety net that I didn't yet need but was glad it was there.
ronmoffett   David, yes. I am not in a wheel chair but with the cost being so high. I would take your time and make sure you get a comfortable chair  
DavidOhio   Gary_KC that is interesting does it also help with cold hands, my feet and hands give me the most trouble when the weather is cold.
Gary_KC   David, it improves blood circulation. I hope it helps for hands too.  
ronmoffett   Todd, I am not sure if I am correct. They sent an e mail out with the changes. I have a few contacts at the MDA. I am going to call down there when I have some time and try and better understand the changes.
ToddAllen   I used to have a lot of trouble with cold hand and feet.  Developed fairly severe Reynaud's and my doctors pushed surgery, cutting nerves to stop the vasoconstriction.  But I seem to have mostly cured it on my own.  Really curious to see how this winter goes.
Gary_KC   I found the information in Bruce's blog. Someone tried it and helped his weakness.
DavidOhio   Todd what is Reynaud's?  I am not familiar with that term.  
ToddAllen   I've also been taking carnitine with alpha lipoic acid, didn't realize it was also beneficial for the cold hands and feet.
ronmoffett   David, do you go to a Neurologist at all ?  
Gary_KC   David, you can buy it over the counter if you are interested in.  -)
ToddAllen   Reynaud's is where the body's natural response to a cold body core, cutting circulation to extremities to keep one alive, goes into overdrive and starts strangling the hands and feet all the time leading to tissue damage.
DavidOhio   I did early on and he is the one who suspected and confirmed the diagnosis.  But since there is no treatment available I have not continued with regular visits.  I have work with my primary care doctor to continue with the physical therapy that the neurologist suggested 
Gary_KC   Todd, my friend who has KD tried it but he did not feel the improvement either.
ToddAllen   I think many of us with KD experience a slight form of Reynaud's as we age.  For me it became severe.  But I think I'm beating it now.  I take a daily bath of pure cold water as part of my stress therapy to overcome it.
Gary_KC   I do not know why it works for me and does not work for others?  
ToddAllen   L-carnitine and alpha lipoic acid are OTC supplements used by body builders and others to improve metabolic function of muscle.
ronmoffett   David, that makes sense.  
DavidOhio   ToddAllen you are one brave soul, I am shivering just thinking about a cold bath. Did you start taking those cold baths as part of your more aggressive physical activity?
Gary_KC   Todd, I tried L-carnitine. It did not help me. Alpha-L-Carnitine helps me.
GregF   David I agree, I HATE being cold  
ToddAllen   Yes, I started with supplements, then diet, then exercise then more extreme stuff like heat and cold stress.  I now love wickedly hot baths, but the cold ones are still awful for the first few minutes.
ToddAllen   But I feel amazing after the cold ones.  And they are getting colder.  Our tap is down to 60 F, was 70 F at the peak of summer.
Gary_KC   Todd, you are right. They improves metabolism.  
ronmoffett   I am with you guys. I do the opposite. I take very hot baths to try and warm my body. I don't think I could take a cold bath. I think my body would shut down. Glad it works for you Todd.
GregF   Gary if this improves metabolism, does it help with weight?  
ToddAllen   I'm taking many supplement now, not really sure what each is doing.  It's hard to sort out when you make tons of changes at the same time.
ToddAllen   I take a hot bath at night before going to bed.  Helps me sleep better.  Also supposed to help repair muscle & nerve damage.
DavidOhio   Baths are not an option for me, when we remodeled the house we took out the bathtub and created a roll-in shower.  I was never a fan of baths anyway and prior to the remodeling I just feared getting in or out of the tub.
Gary_KC   GregF, I think so. It helps to burn body fat. I very like that it improves blood circulation for cold feet.
DavidOhio   That fear was even to take my showers, the new design just seems so much safer for me.
ToddAllen   I take a cold bath in the morning.  The cold baths stimulate stronger metabolism, boosting energy and fat burning, etc.  To further that, I've only been wearing shorts and  -shirt, no coat, for my walks.
GregF   I think I will check into it. I have to be careful what I take though, some supplements cause problems for Diabetes and High Blood Pressure
ToddAllen   That was supposed to read shorts and  -shirt, not sure where the smiley came from...
ToddAllen    -shirt   
ToddAllen   TEE shirt  
ToddAllen   I guess "T -" causes a smiley...  
ronmoffett   David I understand that fear. That's why I started taking baths so I am not standing for long periods. Its getting harder for me to get up. I am looking to move soon and hopefully I will find a place with a roll in shower. 
DavidOhio   I plan to look into those supplements also, if they help with cold hands and feet I am willing to work out any other side effects 
Gary_KC   Greg, I agree with you. We should take any supplement carefully.  
ToddAllen   I also had high blood pressure and was pre-diabetic.  Both problems appear resolved.  I think KD also is an aggravating factor towards developing diabetes.
GregF   David, Sharri and I checked into a walk in tub. They look awesome but the price is way out of our league 
ToddAllen   I've mostly eliminated carbohydrates from my diet which seems to have fixed the blood sugar issues.
GregF   ToddAllen My research has shown that Diabetes does come with K.D.
Gary_KC   I take ALC and Taurine before a meal with warm water. I feel the improvement after an hour.
ronmoffett   Greg, thats interesting. I always wondered that since I have been boarder line my whole life
GregF   K.D. will mask symptoms of Diabetes so by the time I found out that I had it I was in trouble
ToddAllen   The primary disposal for sugar/glucose is supposed to be skeletal muscle.  When we lose our muscle we lose our tolerance for sugar.  Then we get fat, high bp, etc.
ronmoffett   Greg, How old were you when you found out about the diabetes ? 
GregF   My research has shown that your body produces Glucose (sugar) for fuel for the muscles, when the muscles stop working the Glucose builds up in the blood
GregF   I am 56 and just found out about it about 3 months ago  
ToddAllen   I've lost 35 lbs since going low carb.  Got another 25 lbs or so of fat to lose, but am regaining some muscle so my weight hopefully won't go scary low.
GregF   I am in a Wheelchair most of the time so most exercise is not an option
ronmoffett   I am very close to your age and feel that  I might be over the border now, I am waiting for my results.
ToddAllen   Our livers convert excess blood glucose to triglycerides which get taken up and stored by fat cells.  High triglyceride levels are a common early warning sign for KD that diabetic type trouble may be coming.
ToddAllen   Diabetes contributes to nerve damage, such as the pins & needles type sensation I used to get in my hands and feet.
Gary_KC   I think KD degrades mitocondoria function that also affects metabolism.
ronmoffett   Greg, I do all my exercises seated with one of those colored strips of elatic I got from physical therapy. I think the exercise has helped me a lot.
ToddAllen   Yes, it now looks like KD first zaps mitochondria, then muscle.  Nerve damage is a late result, not a driver of disease.
GregF   I would recommend all men with K.D. getting checked regularly. By the time I found out my blood sugar was over 300 and A1c was 10.7
GregF   Ron I have a thing that looks like bicycle pedals that I set in front of my chair. I think that it helps too
ToddAllen   GregF, look into ketogenic diets as treatment for diabetes.  It is potentially much healthier than taking insulin.  Insulin for type 2 diabetes is like treating drug addicts by prescribing narcotics.
Gary_KC   GregF, I have a pedal machine too for my exercise.  
GregF   Thank you ToddAllen So far I do not take insulin. I am mostly treating it with diet and also Metformin
GregF   Gary I think that it helps to just keep the muscles moving a little  
DavidOhio   Well gents I have certainly learned things this morning!  Thank you all for a great discussion today.  It is time for me to move on to other activities.  Until next time I hope you all have a great thanksgiving and enjoy life.
ToddAllen   Look for YouTube videos on keto diets by Dr. Jeff Volek, Dr. Stephen Phinney, Dr. Eric Westman
GregF   Thank you Todd  
ronmoffett   Men. Its that time for me. Great chat this morning. Hopefully we can chat more next time. Be well.
GregF   oops TodAllen  
GregF   Have a great month guys and enjoy your Thanksgiving  
Gary_KC   Nice to chat with yours. Take care, please.  
ToddAllen   I'm glad you are managing it with diet and metformin.  Metformin is a powerful drug with many benefits and some believe can slow aging, but also has side effects that I think can impair immune function or something else pretty serious.
ToddAllen   Goodbye all.  For now...