Old 07-05-2016, 03:08 PM #16 (permalink)
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Default Re: Question for those who can still eat

She believes she can slow progression....and possibly cure. I'm no dummy though, I have done plenty of my own research. This is the balancing act I mentioned, we are not giving up on conventional medicine. We are trying to do everything we can, where we can and when we can, but it cant all be done at once. If anything works, we will be very happy we tried it. Beyond that, our children can proudly say their daddy did not go down without a fight.
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Old 07-05-2016, 04:09 PM #17 (permalink)
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Default Re: Question for those who can still eat

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Originally Posted by konagirl View Post
She believes she can slow progression....and possibly cure. I'm no dummy though, I have done plenty of my own research. This is the balancing act I mentioned, we are not giving up on conventional medicine. We are trying to do everything we can, where we can and when we can, but it cant all be done at once. If anything works, we will be very happy we tried it. Beyond that, our children can proudly say their daddy did not go down without a fight.
As I might have said (I'm a CPA and taught 26 years college level) I was taking courses in alternative medicine a few years ago. I was working on a doctorate and specializing in nutrition, although the degree covered all areas of natural and alternative medicine. I was about half way through when I quit, for financial and personal reasons not related to the plan of study. I've helped a lot of people function better with clean eating. I've helped people lose weight when nothing else worked and I've helped people put on muscle. The one thing that I've learned is that both conventional and alternative medicine leave many questions unanswered. Some people say it's an either or situation and that is not the case. I do think there is a huge component of individual response to various meds, supplements, and other treatments. What works great for one might be ineffective or even bad for another.

A few things I'm sure of are gluten makes me very sick (that was discovered at Mayo Clinic...I don't have celiac but I'm very gluten sensitive. I tolerate non-gluten grains just fine but they do pack on the pounds so my body is not efficient at utilizing them. This has happened within the year prior to my diagnosis. I cannot tolerate raw juicing. I've tried it with so many different combinations and different juicers. Just can't tolerate it. It might be my sensitive stomach or taking Aciphex for 15 years has reduced the acid level too low (that's another matter for another thread). I do great with steamed veggies, just not raw, including salads. I can't tolerate caffeine. Too bad because I'd love to drink green tea every day and could use the energy from something stimulating in the morning. I haven't been able to ever drink coffee without having very bad heart palpitations and even taking medicine does not help.

I'm not going down without a fight nor am I going down without trying various things that intuition or conventional wisdom says are good for my body. Right now I feel very overweight and my body is trying to tell me something. Either I'm fueling it with something that it doesn't like or it's just my stomach is not used to being this big and bloated. My six pack turned into a mushy gut and, psychologically, it is bothering me. Some doctors say a BMI of 31 is good for ALS. My BMI was always 18-20 and I felt good. My BMI is 22.6 and I feel obese. I know I'm not but my body is saying something is wrong so I'll try a few things to see what it can be.

Bravo for you and your husband!
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Old 07-05-2016, 04:17 PM #18 (permalink)
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Default Re: Question for those who can still eat

What has been clinical proven to slow progression of ALS is a HIGH CALORIE diet and MAINTAINING WEIGHT.

How you get your calories is a very personal choice and I support anyone who feels a particular diet or regime is making them feel good and they are either putting on weight or at least maintaining it.

It's so important to discuss all the sides of this.

I would also strongly recommend that if this person thinks they can slow or even cure ALS you need to document EVERYTHING about what you are doing including every test done on you and like those in trials video document weekly. Otherwise simply claiming you are sure it helped means nothing - be ready to demonstrate just how it helped!
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Old 07-05-2016, 08:36 PM #19 (permalink)
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Default Re: Question for those who can still eat

I do agree that weight is an important issue Tillie, I actually learned that here on these boards I try to take a little bit from everyone and then incorporate it into what works for us. That is how I landed where we are now, I can keep the calories on but the toxins and pesticides away with a high fat organic meal. So many people think that organic means "healthy", but it doesn't, it just means your ingredients are clean without the preservatives and chemicals that so many foods carry these days. Chad eats plenty of bread, its just organic when I can find it and at the least nongmo. I cook our veggies in butter, organic butter. I am sure a cardiologist would not agree with my cooking lol. My goal is to put weight on him and get the chemicals out of him. Kim T is right though, what works for one person may not work for another, to each their own, I'm down for some trial and error. And that's not even to say what we are doing will work in any measure, just trying, grasping at straws maybe. He doesn't mind though, so I am not stopping.

I actually do keep a journal. What he eats, what our current diet is, current supplements. Gains and losses with his body and abilities. Again though, we had to stop all of those for the trial we are in. Unfortunately his gains have turned to losses when the trial began, so documenting has gotten a little hairy. I have been into the nutrition route for a while but have never brought it up here because I know not all agree to it, but I felt I could contribute to Kim's question/topic of discussion. I do believe clean eating/holistic route may have some answers out there that are unturned. Maybe not. Wont know unless we give it a shot.
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Old 07-06-2016, 09:39 AM #20 (permalink)
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Default Re: Question for those who can still eat

The other think that I always have to consider is that ALS isn't the only health issue I (or others) have going on. Since quality of life is what is most important to me, minimizing symptoms so I can make the most out of each day is vital.

I like pizza as much as anyone. Up until recently I couldn't tolerate tomatoes because they caused bad acid reflux. I've found that using a gluten free crust made with lots of organic olive oil and covered with organic pizza sauce, mushrooms, spinach, and anchovies doesn't bother me as long as I eat slowly. My dessert is a smoothie with lots of organic berries, coconut water, coconut oil, and bananas....I call it the mother load of potassium and antioxidant meal. The meal is around 1,200 calories. If I add cheese to the pizza it brings it up to around 1,600.
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