Thanksgiving Perspective

“Who’s around the table is more important than what’s on the table.” 

By Guest Blogger Linda Gregoire

I was asked yesterday by a caregiver of a new tube feeder how we handle holidays that are celebrated with food. We all want to do whatever we can for our loved ones with a feeding tube to make life easier and normal , so I really appreciated her thoughtful question . 

The last 10 Thanksgivings we’ve been faced with small incremental changes that we’ve adapted to because that’s what you have to do with ALS. I always say “if you don’t go with the flow, you get caught in the rip tide” if anyone has had the experience of a rip tide you know what I mean..... the more you try to fight it the worse it gets, if you trust and swim in the flow you’ll be safe. So this morning after I started John’s feed and he fell asleep peacefully while his tummy was being filled , I realized how at peace he is with his current situation. In the beginning with his new tube , we struggled until we got him on a healthy formula. He still ate for pleasure by mouth, so a bowl of .pistachio ice cream was eaten while formula was finding its way into his tummy. He had the best of both worlds haha.  

I think the two saddest days for him was when he could no longer eat steak,  one of his favorite meals . That came early on , as it’s so hard to chew. The second was about a year ago when he would sneak a hand cut French fry when Matt and I would have an Elevation Burger . He choked so bad I almost thought of calling for help.  Once the choking passed he looked at me and shock his head “no” . I asked no  more for now ..... or no more forever ? Tears welled in his eyes and I knew ....no more forever and we both cried. The one thing he still can take by mouth and never chokes on is a small piece of communion bread and a sip of “wine” (grape juice) at church and God willing he’ll be able to forever. 

So as Thanksgiving approaches , it made me think how we’ve handled the “Holiday  meal” .  We gather at my sister’s with as many family, friends and dogs as we can squeeze into her home ....which can be 20-25 people and up to 9 dogs . The food has been mostly grown/ raised  by my sister and brother in law which is a labor of love . It’s prepared with everyone in mind ....oyster stuffing for some and regular stuffing for the rest of us 😉.  We all share in bringing what we can . We enjoy each other’s company and catch up on life . Then we gather at the table , elbow to elbow , we remember our family that’s with us in spirit and give thanks for those we still have  with us to love . John is seated at the table with his own spot  and place card as he enjoys “his dinner”  too . He’s  the only one that has  his electronic device at the table because  it’s for speaking ......and he’s the self appointed one to keep track of the football game for the entire table 🏈. That’s as important as cooking the turkey haha . We chat , pass food, laugh and oh yes we eat . Thanksgiving dinner is more about who’s around the table then what’s on the table. We feed our bodies and enjoy the food , but more importantly we feed our souls with love and thanks for all we have.

So for all our tube feeders, join in the feast, give thanks and feed your soul on love and life ❤️ . This is what I’m grateful for everyday of the year not just the days of November....Happy thanksgiving to you all  and God  bless you all .

NOTE:  November 28th is Giving Tuesday. If you’d like to support the work of The Hope-JG Foundation supporting families with ALS this holiday season, please donate at: hope-jg.org or by starting a campaign choosing us as the designated charity. Happy Thanksgiving!

Nutrition and ALS for ALS Awareness Month - Guest Blog

Connections: What are we waiting for?

John Bagnulo MPH, PhD. - Director of Nutrition At Functional Formularies

ALS or amyotrophic lateral sclerosis is a disease centered around the loss of functional mitochondria in motor unit neurons. As these nerve cells lose their ability to generate energy (that’s what mitochondria do) and therefore the ability to stimulate muscle recruitment (required for coordination, movement, and muscle cell preservation), individuals with ALS suffer muscle loss, paralysis, and eventually the ability to swallow and breathe.

Although there is a somewhat broad spectrum of symptoms initially among pALS (people living with ALS), the symptoms most often overlap with other neurodegenerative diseases such as Parkinson’s Disease and Alzheimer’s, as well as with other frontotemporal dementias. While the focus of this article is with respect to the etiology of ALS and the best possible dietary intervention, please keep in mind that the other neurodegenerative diseases also having growing bodies of clinical evidence that illustrate the benefits to a similar dietary pattern.

Neurons are very unique cells. Unlike our muscle cells they are less metabolically flexible and are dependent upon carbohydrates or ketone bodies (more to come on these later...) as fuel sources.Because of their requirements and because of what the modern human diet looks like these days, our brains and the neurons that comprise them are almost always running on sugar. Some sugars are better than others when it comes to the effects on the mitochondria of these critical cells. Glucose burns much more cleanly, for lack of a better analogy, than fructose.

Unfortunately more than half of most sweeteners and added sugars are made up of fructose. When it comes to corn-based sweeteners the percentage can jump to as much as 60% fructose. Many researchers have shown what fructose metabolism does over the course of time to the mitochondria of all cells, it is axiomatic to conclude that it can only be worse in those cells that are even more dependent on sugar metabolism as they will be getting a greaterpercentage of their energy from sugars overall. If this is news to you and you have been told that not only “a calorie is a calorie” but also that “a sugar is a sugar”, you will definitely want to take a look at the research around fructose and mitochondrial dysfunction:

ihttp://www.ncbi.nlm.nih.gov/pubmed/26661172

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4529952/pdf/BMR I2015-895961.pdf 

http://www.ncbi.nlm.nih.gov/pubmed/25913123

Simply avoiding fructose is the first and most obvious step in giving our neurons and their mitochondria a chance to come up for air. That means not only avoiding sweeteners but fructose-rich fruits as well. Dried fruits and many fresh ones such as bananas, apples, and grapes are very high in their fructose content and should also be avoided with any neurodegenerative disease. I am always dismayed to find recipes included in dietary recommendations for pALS that are centered on chocolate syrup, ice cream, and numerous other rich sources of sugar. Not only will these recipes fail to prevent weight loss, they will also make ALS patients considerably worse.

The artificial sweetener aspartame is not a good choice either. There is a good amount of research to support the role of glutamic acid in some aspects of the disease. Aspartame contains high concentrations of aspartic acid and it can act and disrupt neuron function in a similar fashion to glutamic acid. Then there is the research illuminating the degeneration of aspartame to methanol and formaldehyde, also potent neurotoxins. Are stevia and xylitol safe sweeteners? Possibly, but they shouldn’t be part of the long- term plan.

The key to arresting the neurodegeneration is in providing the neurons with the only other viable source of energy: ketones. Ketones are generated when we consume small amounts of carbohydrate and moderate amounts of protein. With this type of food consumption, the body has to manufacture glucose in an effort to produce supplemental quantities. In the process, ketones are a byproduct that can benefit all cells in the body with an incredible amount of supporting research. If we eat too many carb- rich foods it will quickly take us out of this ketone-generating zone, as will too much protein.

Ketones can also be generated from certain foods that contain a unique type of fat. In fact, there are only two or three foods that most humans have exposure to at one time or another in their life that can offer ketones as a result of their medium chain triglyceride (MCT) content. Breast milk, goat milk, and coconuts all contain significant amounts of MCTs and therefore can offer ketone production even outside of the ideal parameters of a ketogenic diet.

It makes too much sense that breast milk would provide us with a source of ketones at a time when brain plasticity and development is at its high point. In a similar way it makes too much sense that a ketogenic diet or even a diet rich in extra virgin coconut oil could provide an alternative fuel source to neurons that are otherwise compromised and made worse by their dependency on sugar.

In addition to helping neurons find a more viable source of energy, ketones also signal the cell to initiate autophagy. Autophagy is eventually critical to cellular function. It is a cell’s recycling program where those internal components that are no longer working properly are digested and the proteins and other salvageable components are reinvested into new organelles.

Unfortunately it takes more metabolically extreme circumstances for autophagy to happen. A cell has to receive a signal that there is either a protein or an energy shortage. Ketones are associated with the latter even in the presence of significant quantities of dietary fat. This recycling process creates room in a neuron for new, more functional hardware and can even stimulate biogenesis of new, healthy mitochondria. No drug or medication has ever been able to accomplish that.

This an important foundational component to an ALS, as well as to other neurodegenerative diseases, dietary intervention: get the sugar and the carb bombs out, bring the high quality saturated fats in, most notable extra virgin coconut oil. Even if you are overwhelmed by the thought of a ketogenic diet, simply eliminating sweeteners, fruit juices, most fruits, and other concentrated sources of sugar should be easy to grasp. Replacing omega 6 fatty acid-rich polyunsaturated fats with high quality coconut oil, olive oil, or grass-fed butters is also an extremely worthwhile change. Significant quantities of omega 6 fatty acids generate more inflammation and incorporating more polyunsaturated fats into the mitochondrial membrane just creates more instability and more oxidative stress where it is the most detrimental.

Too often care providers are resistant or unwilling to recommend these high fat, carbohydrate restricted interventions because they are not familiar with the cellular pathways involved in neuron   metabolism. Others confuse this dietary intervention and the mechanisms of ALS with “knowing the cause”. This therapeutic approach does not indicate that there is a proven environmental or genetic cause (although there are certainly some very plausible theories), only that there are definite pathologies in the mitochondria of pALS and that there are ways to improve the metabolic conditions within their neurons. Let’s not wait for another decade to pass before accepting a simple dietary strategy as at least part of the solution. No one should have to wait any longer as the research is becoming increasingly clear.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4776126/pd f/fncel-10-00044.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4780428/pd f/main.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1488864/pd f/1471-2202-7-29.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3245363/pd f/nihms320996.pdf

John Bagnulo holds a doctorate in Human Nutrition and Food Science from the University of Maine and a Masters of Public Health from the University of North Carolina. John has served as a nutritionist at Canyon Ranch in the Berkshires, Kripalu Center for Yoga and Health, and is a core faculty member of the Center for Mind-Body Medicine. Additionally he has taught a variety of nutrition and exercise physiology courses at different universities. A frequent lecturer on topics including heart health, detoxification, digestion, and sustainable agriculture, John is also a passionate mountain climber who has reached the top of Mt. Everest as part of a two-man team.

- See more at: http://functionalformularies.com/about/our-team/john-bagnulo#sthash.VpFB5bZR.dpuf