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Jul 5, 2018
Hi all.
My consultant here in the UK says it is better to increase calories 20% as muscle twitching usually saps energy.
I found that I actually put weight on during my first six months of action . I started to try to drop some of that excess 20LBS
with a healthy liquid fast ( Teas, Bio Yoghurts, Vitamin made up drinks, Berry smoothies and smart Water ). After a few days I quit this as it felt wrong and had other advice, Not from my consultant who I had informed of my plans but had no reply.
I now intermittent fast loosely with high fat/Protein to the fore.
Keep you weight up I was told and listened,
I have now added a range of mainly herbal supplements
My weight is steady, I thought to post to see if any comments are little diamonds. Hoping for Miracles. :roll:
I was told not to long after I was diagnosed, that about 25% body fat was a nice number. I have never been near that number and never will be, I was to active in work and life. If you can maintain a healthy weight, you will need to judge that, you will be ok.
Reduced BMI (ratio of height to weight) early post-diagnosis is the factor that has been correlated (does not mean it is a cause) in some studies with longer survival. There is evidence that ALS makes you burn more energy than what you should. So it's a chicken and egg. But intermittent fasting seems questionable since you are forcing the body to draw on reserves that PALS are less likely to have.

Agreed, there is no magic % of fat that has emerged, which is gender-specific anyway, and as waldo points out, body type pre-ALS is going to play a huge role in that. So the statement about increasing calories 20% is a bit one-size-fits-all to me, and begs the question of what you would eat to attempt that.

The quality of nutrition continues to play a role in ALS, esp. healthy fats, complex carbs and protein, even when they are blended for a tube or smoothie, or in one of the better formulas.
I made a huge mistake early on and went from 120 to nearly 150. Mayo scared me into gaining weight. I hadn't lost weight and was still walking a couple of miles each day at the time of my diagnosis. I had always eaten healthy but I think the shock of the diagnosis made me eat tons of unhealthy things like ice cream. I never had to watch calories when I was active in sports and running so calorie control was never an issue except when I would drop too low and have to up my intake.

Prior to my diagnosis I never lost a pound and gained all that weight in less than two years. Then I started eating healthy again and going in the pool. Very slowly, over about 9 months, I dropped nearly 10 pounds. I feel much better and I made sure I was eating plenty of good fat and protein. I cut back by not eating processed food and only ate a little dark chocolate, fruit and nuts for dessert.

If I had a do-over, I would stay at about 120-125 and kept up with my healthy eating. Now, if I want a treat, I'll go to the ice cream stand and get an ice cream.

I actually felt best and had less pain when I was doing keto but I couldn't keep weight on so I modified it and just cut out food that made me feel tired (processed and too much sugar.)

FWIW, the BMI is a very poor indicator of ideal weight, even in healthy people. The size of your bones isn't factored in and that makes a huge difference. I have very small bones and, even at over 5'6" I looked very fat at 149. Last I weighed, I was 138 and I still have a lot of fat but my stomach did lose the muffin.
When it starts to hit respiratory function you will lose weight rapidly is what I saw. It makes you lose your appetite and your increased breathing burns tons of calories.
As with many things there is no one-size-fits all. My PALS was advised to keep his weight. He never made an effort to gain, he was skinny always, he ate fatty stuff preferably (his biggest regret in life is that he should have eaten more burgers) and lost some weight as he lost muscle mass. Only in the last months and with worse breathing did he lose weight to the point where you can see it in his face but he's operating on less than 500 calories a day because of lacking appetite and such. Muscles need energy, if they are gone they don't. I conclude that PALS with heavy spasticity might be very well advised to eat more as their body is running laps basically.
A percentage of PALS become hypermetabolic independent of other issues and need more calories to maintain. As noted above respiratory issues can also increase metabolic need.

There are studies that have correlated higher bmi with longer survival including one that correlated a bmi of 31 with best outcome.

Should you gain if you are normal to skinny? It didn’t work for Kim- at least not for her quality of life. I did gain 15 pounds slowly after diagnosis by letting my weight drift up. Both of us have had slow progression and now that I think about it my slow progressing FALS friends have been mostly a little fluffy and I know that at least a couple chose that deliberately because of the research

If you don’t jump on a feeding tube when swallowing gets harder you can lose weight alarmingly which is part of the reason some doctors like their patients to have a cushion. My already thin sister lost 20 lbs before scheduling and 10 more before getting one

Eat well and maintain at a minimum
I totally agree that preventing weight loss seems to be highly important. It's the metabolic issue and then breathing problems cause an even higher calorie need.

Chris would say - I must lose weight because I'm losing muscle. But what we know is that if you are losing weight you are highly likely to lose muscle even faster, and therefore to hasten progression.

While I would also encourage that good quality, healthy foods are best, for a PALS anything that keeps the calories going in is hunky dory.
I struggle with nausea and use a kangaroo pump for 12 hours a day to feed. I must be one of those hyper metabolica as my weight is now 87lbs, bmi 17. I weighed 160 when I was diagnosed in October 2016.
Have you tried one of the more natural formulas and/or a real food blend to see if the nausea/weight loss may be an intolerance of commercial formulas? We are not really built for a corn syrup diet.
I use Kate farm formula, all organic no corn syrup
You could be sensitive to the pea protein, then, or one of the other ingredients/prep methods -- blended real food is also worth a try if you haven't.

Also, which version of Kate's are you on? There are certainly some differences among the three.
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On the peptide 500 calories a box. Not sensitive to vegetable protein, i am sensitive to dairy protein. Can only tolerate 1 box daily. Om hospice so not motivated to change anything at this point
I will add my supplement TIANDB list. It is long and I do not take everyone. I do the teas mostly Daily.
I do the supplements in 4's so 2 x 4 a day or sometimes 3 x 4 and 4 before bed usually.
I mix some of the teas and add Honey. Nett/ peppermint Green/ peppermint.
MJ = Magic Juice ha

Nettle Tea ( Anti O and full of good )
Green Tea ( Anti O and good also )
Earl grey Tea ( Anti O and Bergamot is Autophagy Enhansing )
peppermint Tea ( Digestion friendly Helps with Inflammation )
Peony Leaf White Tea ( Anti O Anti Virus & Inflammation )
Coffee ( Energizing and positivity )
Honey ( Anti O Repair Wound healing properties )
EV coconut Oil a few T spoons a day ( The healthiest Fat IMHO )
Vit C effervescent 1000mg MJ ( Repair )
Energy effervescent MVit MJ ( Repair )
Bacopa Monnieri ( Anti O Increases Neuron dendrites ? )
Gotu Kola 420mg ( Anti O Increases Neuron dendrites ? )
Creatine ( Muscle enhancement and Repair )
Vitamin E ( Anti O Repair )
Vitamin B Complex ( Energy and Repair )
Zinc Gluconate 50mg ( Immune system and Energy )
Curcumin Complex 800 mg ( Anti O and anti Inflammation )
Iodine 225 mcg ( Repair )
Selenium ( Repair )
Milk Thistle ( Anti O Anti Viral anti Inflammation )
Magnolia Bark 400mg ( Repair and Sleep Aid )
Nicotinamide B3 500mg ( Repair/ brain health )
Apple Cider Vinegar a few drops in my Effervescent MJ ( Good )
Cod liver Oil 1000mg ( Vit D, A, Anti Inflammation )
Alpha Lipoic Acid 400mg ( Repair )
Beta Glucan 250mg ( Repair )
Senna tab before bed. ( Occasional ) ( Digestion )
Distilled Smart Water : MJ ( Removes Contaminants )
Lions mane Before bed ( anti inflammation, Anti anxiety, repair )
Lithium Orate before bed ( anti Anxiety )
Melatonin Before Bed Occ ( Sleep Aid )
Robitussin Dry Cough Medicine For whenever Coughing.
A tot of Amaretto in my effervescent magic drink. MJ
Occasional Bottle of beer.. ( Read somewhere Alcohol slight benefit for LMND )
Robinson's sugar free Orange and pineapple: MJ
Cooking. I use butter/ EV olive oil and EV coconut oil..( Just good ) ....
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In the year prior to my diagnosis I finally started working out again after weaning my youngest child. I was at the gym 4 days a week and got into great shape. But for some reason, my weight was dropping really low and I didn't understand it because I ate a lot of whatever I wanted, and while I was going to the gym a lot it didn't account for my weight loss. I remember my pcp telling me sternly to not let it drop anymore- I was 98 lbs and 5'0. I am convinced that getting in shape triggered or sped up my emerging ALS, and that the ALS, which I didn't know I had, was why working out made me lose weight 2x fast as it would have otherwise.

When I got diagnosed I quit the gym and got my weight stable around 110 - 112 lbs. For about a year post diagnosis I have had no issues maintaining a healthy weight. But in the last 3 months that has changed. I am now struggling to keep my weight up around 105, and most days it's 102 or 103. This corresponds with a drop in my supine FVC (it's currently 64) but my sitting up fvc is in the 70s so I'm not sure if breathing has to do with my reduced weight. I also have low appetite and I don't understand why that is at all. I've had to rely more on tube feedings because I sometimes can't summon the motivation to eat (by mouth). And I really don't know why that is. Is it ALS? or am i depressed and losing appetite for that reason?
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