Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"... almost all of the nurses and doctors did not know about Kennedy's Disease. I referred them here. I want to thank the creators of this website."

2018 Chat Room Transcripts

Topic: Open Forum  
DavidOhio   Sunny and hot here today what's it like in your area (Chicago right?)
DavidOhio   Good Morning Ron
ToddAllen   Chicago is sunny and hot too.
ToddAllen   Hi Ron!
DavidOhio   Todd I have not taken time to read all of the research info you shared this week but I do appreciate your efforts to help educate us.  Maybe we can chat a little about the highlights.
ToddAllen   I'd love to chat about it.  And if there is sustained interest, I expect I could add significantly to the content each month for many months before exhausting my collection of related potentially beneficial interventions.
ronmoffett   Good morning David and Todd
ToddAllen   Hi Ron, how have you been?
ronmoffett   Going along - thanks. Been enjoying the slightly cooler weather. How have you been ?
ronmoffett   David - its going to be a hot one here also.
ToddAllen   I also enjoyed the cooler weather, hopefully I'll be able to enjoy this hot weekend.
DavidOhio   Todd from what I did read it appears that Chef Dan has followed some of the diet changes you suggested and he has experienced some positive results, right?
DavidOhio   Ron, everyone in Chicago is doing very well.  Little Nate is now 20 months old and he is growing up too fast.
ToddAllen   I've been doing great the past couple months.  Previously I had several months of struggle with some setback and little progress.
ronmoffett   Wow - time flies. Good to hear. How has your cousin Tom been ? 
DavidOhio   We joined our daughter's extended family in Gatllinburg for a week and then shared our grandson the following week with the other grandparents for th eweek that his daycare was closed
ronmoffett   Very nice. I imagine your daugher and son in law appreciated the break 
ToddAllen   I think my trouble came from creating a nasty mold problem in our bathroom from my nightly practice of taking hot baths.  The bathroom has poor ventilation and the adhesives for the flooring and some other things became very moldy.
ronmoffett   David - didn't you take a trip out west ?
DavidOhio   Tom is doing well, I am getting regular history quizzes from him now
ronmoffett   Good to hear David
ToddAllen   The problems I developed were bronchitis, disrupted sleep and poor exercise recovery.  But now everything seems back on track.
ronmoffett   Mold can be a big problem for health. Hopefully you got that fixed
ronmoffett   Good news Todd 
DavidOhio   Yes we drove out to Rocky Mountain National Park and we have a great time walking the various accessible trails around mountain lakes in the park.  I took a rollator with me and it made all the difference.  Six years ago I could walk each trail without stopping this time having my own seat was a necessity
ronmoffett   Todd, your on a low carb diet correct ?
ToddAllen   We did some demolition and I think got all the mold out, still need to put in new flooring and redo the walls and put in a new window.
ronmoffett   just curious - how long our the trails
DavidOhio   Your right Todd good ventilation should help keep avoid that problem.
ronmoffett   Todd - Thats a lot of demolition. I am sure that removed the mold. Ventilation is the key as david says
DavidOhio   Ron the longest trail is a little over 1 mile most are around a 1/2 mile.  It was quite hot and my stamina was much less this time
ToddAllen   Yes, I cut out processed foods with sugars and flours 27 months ago.  About 21 months ago I went to ketogenic diet - restricting all carbs, though not as strict as typically suggested and I've lately been increasing fruit somewhat but limited to keeping my blood sugar below  100 mg/dl after meals.
ronmoffett   1/2 mile and mile are a long way to walk with KD. Good you can still do it. I imagine it was just beautiful scenery out there. You take a lot of pictures ?
ronmoffett   Todd - how many carbs are you consuming in a day ?
DavidOhio   I think I allowed too many other things to take over the time I had set aside for exercise early this year and am just now getting more disciplined.  I am currently able to walk slowly for about 25 minutes before I detect some fatigue 
DavidOhio   Yesterday at the Y I walked 1 mile on the indoor track and was very thankful for that ability.
ToddAllen   Lately I've been eating about 70 g total carbs of which maybe 25-30 g are fiber.  But it varies day to day as I adjust what I eat based on measurements of blood sugar and breath ketones.
ronmoffett   The Y is a great place. I remember it growing up. Its good to keep exercising.
DavidOhio   Based on what you have shared in the past Todd I have reduced the use of some processed foods and other empty calories.  And even though as I mentioned my exercise routine was less I have lost a few pounds.  so I will make a more intentional effort going forward.
ToddAllen   25 minutes of walking without fatigue is good.  I might be able to do that now but am not certain.  My practice has been to walk as briskly as I can and when my gait deteriorates I pause.
ToddAllen   I probably average 3 ounces of meat, liver or fish daily.  Also 2 or 3 eggs/daily - we have a flock of hens.
ronmoffett   3oz is not a lot of calories. Where do you get your calories from ?
DavidOhio   Todd I have been following the stimulate but avoid doing anything that results in muscles pain.  When I walk based on therapist advice I stand up straight and engage the core muscles and use a cane to help with stability.  I find that if I forget to stand up and engage the core my hips start to complain and then that goes away after getting back to good form
ToddAllen   I eat a lot of fat, avocados, extra virgin olive oil, pecans & walnuts, rich cheeses, etc.
ToddAllen   Sounds like you have a good therapist.   I saw one this spring and he did me more good in a month than 20 years of seeing my neurologist.
DavidOhio   At the conference last year I noticed Todd that you had bags of snacks and I had guessed that was mainly nuts or dried fruit.  
ronmoffett   Physical Therapists are great - they have been very helpful to me also
DavidOhio   Todd you are right about PT being a good source of help.  In fact my neurologist saw his roles as getting me good therapy because he could not do much else to help me.  I have had the same therapist for over 7 years and I see her about twice a month.
ToddAllen   Yes, I brought my own food since I didn't want to eat the pastries and breads provided at the conference.  I did eat a bit from the fruit platter though.
DavidOhio   I have added eating a handful of nuts occasionally as a snack and I think that has really helped me cut down on what I eat a meal time. 
ToddAllen   I had a big set back from a knee injury last year that I probably could have avoided if I had seen a therapist sooner.  I developed shoulder and back problems that led me to find a therapist and both were quickly fixed and my knees are finally getting better too.
ronmoffett   Todd what happened. Did you fall ?
ToddAllen   I had a fall this winter trying to shovel snow and hurt my shoulder.  I continued weight lifting - improperly, and made it worse and it progressed to a pinched nerve in my back too.
ronmoffett   That would be painful
ronmoffett   Todd - just curious. How many calories do you take in a day
ToddAllen   It good so bad I had to sleep in a recliner, couldn't lie down flat in bed.  I was afraid it was something serious and doctors put me through a lot of wasted tests, x-rays, etc. and then the phys. therapist sorted me out in just a few sessions.
DavidOhio   Todd if you still have access to PT you might want to ask about exercises (simple movements) that help with balance and stability.  I have a number of gait and stability movements from my PT that I work on almost daily and I think that it what has allowed me to maintain by ability to walk regularly. 
ToddAllen   I've been cycling between weight loss and muscle building phases.  During muscle building I typically eat around 2200 calories and during weight loss I've been averaging roughly 1500 calories daily.  But I'm experimenting a lot.  I'm increasingly of the belief it is good to mix it up, both fasting and feasting have value.  Too much of either though is a problem and I hope to find the right balance.
ronmoffett   I was told by a dietician I should be around 2200 calories. I am trying to gain weight. Just have some digestive issues going on that I am trying to figure out. Like David. I am trying to eliminate the sugar and processed foods from my diet.
ToddAllen    I have a set of exercises/movements from my PT I do daily.  They are all low intensity, low impact and designed to make me mindful to move my shoulders, hips, knees and ankles in ways that keep them in proper alignment so I don't get hurt doing more demanding things like walking and weight lifting.
ToddAllen   I've been getting a body comp dexa scan every 3 to 4 months which gives a pretty detailed report of fat and muscle in each limb and the torso as well as visceral fat.  I was shocked how high my body fat % was in my first scan despite having a normal BMI.
ronmoffett   I need to see a pt again. Been a little while. That is surprising Todd. In your picture, you look pretty thin
DavidOhio    Well gents it has been great chatting with you both this morning. I need to break away now so I hope you each have a great rest of the day and weekend and until next time -- Stay Vertical!
ToddAllen   I suffered from a lot of digestive issues but it has gotten much better.  My one remaining one is a modest tendency to constipation.
ronmoffett   Yes David. You too. It is that time.
ToddAllen   Great chatting.  Bye.
ronmoffett   What resolved your digestive issues
DavidOhio   Todd I had problem with constipation for years  and my doctor recommended MiraLax I use the Walmart brand ClearLax once a day and I not had that problem for the last 6 months
ToddAllen   I think the digestive issues were largely related to hyperinsulinemia caused by eating a very high carb diet which resulted in high levels of inflammation.
ronmoffett   If you have gotten results. Thats probably it
ToddAllen   I sometimes use a laxative, including miralax, when the problem flares but for the past couple months I've been doing ok without.  I think muscle weakness contributes to poor movement of food through the intestines.
ronmoffett   My neurologist just mentioned that to me regarding constipation which I have suffered from. Miralax has helped me greatly. I tried a lot of different things. Motility is to my understanding now due to muscles.
ronmoffett   Todd, good catching up with you today. I need to transition and try and locate my son and figure out the day here. Have a wonderful weekend.