Question for those who can still eat

[KimT]

What do you eat?

What diets have you tried. Have you simply tried to maintain/gain weight or have you tried high antioxidant diets, anti-inflammatory diets, paleo, etc? Are there things you have incorporated into your diet that you didn't eat before.

Have you found you feel better or worse because of these changes?

I've been doing a lot of digging because I was pursuing another post-graduate degree in alternative medicine with an emphasis in nutrition a few years back....just for my own benefit.

At first, because of the information I got at Mayo, I ate anything and everything trying to pack on pounds. I went from 120 to 140 in about a year. It had lots of protein but also lots of carbs and some good fat. I felt that the extra weight and food made me feel sluggish.

I've decided to try something new for a month. Only eat for optimum nourishment, not for taste. I have been gluten free, thanks to a doctor's suggestion at Mayo, and that did help with stomach pain. I will be dairy free except for organic yogurt, eat lots of fruit and veggies, organic beef, chicken, pork and eggs. Probably 90% organic everything else. cutting out grains. Adding more good fats like coconut oil, avacados & raw, organic Brazil nuts. Keeping up with wild Alaskan salmon a few times a week. Still going to drink coconut water even though it has lots of natural sugar. I buy organic. Giving up favorites like microwave popcorn and ice cream.

Giving Charlotte's web another shot until I can get some good grade edibles or drops that I know have been certified.

I haven't quite settled on my supplements. Waiting to see if I can tolerate ALA and Tudca.

 

[BetsyB]

hi
anti-inflammatory.
i take chinese custom made spice tea made with tumeric and coconut milk.
i'm also taking a lot of expensive high quality matcha tea that originates in japan. my trusted supplier is breakaway matcha in CA. this has had a stunning great effect on my spastic 'neurogenic bladder' so it seems to me beneficial to the nervous system.
i am taking multivitamin/mineral with ginseng.
shortl;y i will also be getting a custom formula of ashwaganda tincture from a clinical herbalist. adaptogen and neuroprotective.
as for food, i am eating a lot of chocolate. i also set up a worm bin and indoor organic growing for fresh greens.
i am told by dietician to eat as much as possible but i can eat very little at one time. so i eat lots of nuts and cheese and other high calorie foods. also olives and olive oil
betsy

 

[Jocalyn8]

From the research I have doing it seems like an anti inflammatory diet may be key. I haven't seen a list of what this consists of.

I am taking an Acai/ Restorval (sp) puree, CBD oil, lunasin,using coconut oil for cooking and many other things.
I think the key is eating.. keeping your weight stable. I think if I stop eating for taste I will lose weight.

I have to say I am eating a lot of ice cream! Because I can, LOL Not many veggies but lots of fruit. I am not a good healthy eater.

Living the dream.
Jocalyn

 

[Vincent]

Butter tarts, ice cream, muffins, greasy veal sandwitches, beer, anything I can get my hands on. I am a "slow progressor. I have given thought to drug trials or diets but I'm afraid I'd just speed things up. I eat poorly, but it is working for now. I started losing weight and was told to crank up the calories, and I did. I have ALS and will die soon, but until then I'm gonna LIVE. I just dragged my wife and mother around Toronto island today and am finishing tonight with pizza and Irish whiskey. La Chaim.
Vincent

 

[Jocalyn8]

Vince,
I am with you until I can't I am gonna eat/drink what I like Including red wine and pizza.

Living the dream,
Jocalyn

 

[tripete]

My wife cannot eat Gluten so for six years we have been gluten free (I cheat now and then when no one is looking). I do the cooking and have a lot of good recipes and tips and tricks I have come up with if anyone is interested.

After I was diagnosed my wife tried everything she could think of, find on the internet, or read about in books to fix me. I have been on so many different vitamins, eaten so much coconut oil, and had my diet modified so many times that I can not remember them all. I finally just stopped, as none of it seemed to do anything but make me nauseated. Now I eat what I want with in the gluten free realm.

I am curious after having read the positive reports about Lunasin as to what natural sources (in foods) can be found that might help. The same with anti inflammatory foods. If anyone has suggested foods that fall into these two categories I would like to hear about them.

Weight has not been an issue for me, if anything I am disgusted about how big I have become after having to stop training and racing.

 

[chally]

At first I lost like ten pounds due to muscle loss.
My swallow ing is still good so I eat what I always did before which was food off our organic farm. Now we git our stuff fresh from friends as I can't use my hands to garden. They wanted me to eat lots of butter& gravy& ice cream but I am not into dairy much, I like yogurt . If you cook , I eat it whatever it is and grateful for it. I don't have much appetite and this lunasin does't help. Need to start some weed but been clean so many years don't really want to go down that road again.
Yea with what we got I am into doing whatever ya want and makes ya feel good . Sorry so long& windy love ya all chally

 

[Statius@]

I can still swallow without difficulty so am eating my usual (pre-ALS) diet, a fairly balanced one by the usual standards, including meat, fish, veggies, fruit, much but not all "organic." Major indulgence is ice cream (why not). Like Tripete am dismayed by the added weight resulting from activity reduction as I've reduced swimming and can no longer do much to take care of our old house and 6 acres, this despite some decreased appetite. But determined to enjoy eating--one of life's great pleasures--and drinking wine as long as I can.

Ed,

 

[KimT]

Dr Weil's Anti-Inflammatory Diet Food Pyramid

Pete, Here's Dr. Weil's take on anti-inflammatory food. I disagree with some of his choices based on my studies and just nosing around. I do think using tumeric and ginger on food is very helpful and makes it taste better. I'm not a big fan of soy protein but I do have some delicious organic soy drinks for emergencies.

The things that are staples for me are wild Alaskan Salmon (Vital Choice has them in the form of burgers and they are excellent....make great crock pot meals), sardines, lots of organic berries, steamed organic veggies, avocados, raw nuts (not so sure about the free glutamate...still trying to figure it out), coconut oil and coconut water, sweet potatoes, melons, organic, free range chicken and beef in small quantities. Lots of tumeric and ginger.

 

[KimT]

Weight has not been an issue for me, if anything I am disgusted about how big I have become after having to stop training and racing.

I understand. I was 104-107 from the time I was 14 till in my 50s. Then I went on Remeron and immediately went to 120 where I stayed until ALS. Now I weigh 140 and it feels like my body belongs to someone else. The Remeron keeps me hungry all the time.

 

[KimT]

Another anti-inflammatory list.

 

[konagirl]

Hi Kim,

My husband let me drag him to a nutritionist in February and we see her every month now. I have also ran the research marathon and am trying now to balance between conventional medicine and functional. I will share what I have learned from her...
My husband works as a printer, he works daily with chemicals and toxins and has since he was 19 years old. He also had a severe head injury when he was 6 that actually fractured his skull. The nutritionist truly believes all of this plays a part in where he is today. Her theory is that we must rid his body of toxins and we can slow progression. That first meeting with her she put him on a strict clean eating diet...gluten free, dairy free, sugar free, no processed foods. She wanted him saturating his brain with nutrient rich foods. She said just what you did, eat for the nutrients, not for the taste. My girlfriends chipped in and bought us a high dollar juicer and he began drinking kale and beets and spinach every morning. Lots and lots of veggies for lunch and dinner. In combination with this were supplements that she prescribed, he was taking 28 pills a day. She wanted his body to detox so she put a big focus on his liver, making it as strong as possible to work out the abuse his body has taken over the last 17 years of working with chemicals.

We stuck to this, religiously, for three full months. He drank nothing but water, pretty sure he went through sweet tea withdraws. Easter came and his entire family cooked dishes that were on his diet list. The kids hated it lol. He did not cheat, not once, and never missed a day of his supplements. It was not easy, especially on my part since I was doing the shopping, cooking, juicing and sorting the supplements.

In that 3 months he lost 20lbs so I pumped the brakes. I incorporated gluten and dairy back in to his diet, added sugar. But its all organic. At the end of the day, its the toxins we are trying to eliminate. So I am cooking with butter, its just organic butter, organic cheeses, organic cane sugar. I have found that I can make almost any of my old recipes still, but with all organic ingredients and grassfed meats and I am only cutting the toxins, not the fats.

Is any of this worth it? I don't know. But I will say that while we were heavy into it, he did not notice a difference. BUT...because of a clinical trial that he is in, he had to stop taking his supplements. The particular trial that he is in requires week long hospital stays...he's not being fed organic food in the hospital, so that was the first week he ate junk. Eating the junk, combined with not taking the supplements, his entire body feels weaker. He can not start back up on the supplements until the trial is over completely, but he can eat clean in between hospital stays. As soon as he got back home and started eating right again and I was able to juice for him, he felt better. His energy levels were a bit better. Possibly a coincidence, who knows.

Right now we are debating what to do after his trial is over. Start the supplements back up? Or start lunasin on our own. Don't want to do both. Either way though, the clean eating will continue.

If you start on a clean eating diet, I would love to hear how it goes for you. Our nutritionist is very passionate about this, she had a lot of stuff in store for him to help his body detox. But because of the trial, we had to halt all of our efforts with her. That's where the balancing act come in between functional and conventional medicine.

~Kelly

 

[konagirl]

Oh and to be more specific....the first diet we started with, before tweaking things, was a strict AIP diet. Autoimmune Protocol, it is a bit stricter version of Paleo.

 

[Diane H]

I believe that "clean" eating improves general health and energy. But I do not believe that it will do anything more for an ALS patient than it does for anyone else. If diet were a factor in ALS, I should have been dead 25 years ago. But I have continued to eat the same not particularly healthy nor spectacularly bad diet since the days when ALS was just a ”possibly ALS". My progression has remained at the same very slow pace even with a typical indulgence in fast food and junk food and a few attempts at eating better. Thirty one years of ALS, the last twelve living happily on a vent but still eating, my ALS has not changed course.

 

[affected]

konagirl does this nutritionist think she will cure your hubby or slow progression? Just curious