Newly diagnosed

[Mary2]

Our clinic was pessimistic that we would ever get Liquid Hope approved through Medicare. We are with Synapticure now and maybe should ask to speak with a dietician to see if he/she is more willing to try and get approval.

 

[Doing My Best]

Mary, I think I misspoke. We have been using Liquid Hope for about three weeks from samples we received from the clinic and ALS Assn, but now that we have coverage the supplier sends Kate Farms. I don't know if LH is covered or not. We are doing a trial of Kate Farms to see if he feels equally good on that and had planned to go back to Liquid Hope if not, so I'll check to see if LH is an option under Medicare for him. Since the clinic suggested it I assumed it would be. I'll let you know.

 

[KimT]

Just a quick note. The dietician at Mayo Clinic was clueless about macro- and micro-nutrients. Yet, embarrassing as it was, I took her advice and fattened up with ice cream. I had been a runner and was healthy and muscular. And I was taking graduate courses in nutrition at the time. I panicked and ate way too much. The sugar, which I wasn't used to, gave me brain fog.

I'd recommend blending the food the PALS is used to (minus processed food), or Liquid Hope. Kate Farms is way better than Jevity and I wouldn't use anything filled with corn syrup.

Make sure PALS is getting enough fiber because being inactive can cause constipation. So can dairy.

Of course, the most important thing is to maintain weight, have regular bowel movements, and feed with something healthy and that agrees with PALS digestion.

My body has a very hard time with grain but that's the exception to the rule. I'd make sure PALS is getting good fat such as avocado or olive oil. These can be blended in Vitamix with other food for a balanced feeding.

I'm going to try Ka'Chava added to my morning shakes to see if it agrees with me. It has digestive enzymes and super food and is organic. Two scoops is only 240 calories but it will be added to a shake that already has 1,000 calories.

 

[Buglaw]

FWIW, I agree that it’s hard to imagine a well balanced diet of fruits, vegetables, beans, nuts, whole grains and healthy proteins is not better than eating a bunch of ice cream.

That being said, I talked with nutritionists at Northwestern, University of Chicago and MGH in their ALS clinics in the last few months and they were each very forceful that eating a high protein high calorie diet has been shown to slow disease progression. The evidence for dietary reccomendatuons beyond that hasn’t been established. They all said the most important thing is to make sure you are consuming enough calories. Any benefit you may be getting from macro or micro nutrients is likely a good amount smaller than the benefit people get from high calorie high protein.

They also told me that my body is burning more calories than normal, and I firmly believe that is not true for me. I’ve gained a bunch of weight and I’m not really eating anymore than I used to. So, maybe they are being a little too forceful with their assertions.

 

[MupstateNY]

Buglaw, I've thought about this. Since muscle is dense, we might find our clothes getting tighter as we are seeing smaller numbers on the scale.

Micronutrients, I would guess, don't need to be present in large amounts, judging from the name. So I wouldn't worry about them pushing out the good stuff present in larger quantities.

Question for everyone -- Is it okay to enjoy the fatty drippings from, e.g., salmon? Later, when I use my f. tube for nourishment, can I blend the whole thing, or do I need to pour off some of the fat?

 

[affected]

Blend everything you would normally enjoy. Mostly watch your weight, how you feel with energy and how your body feels.

 

[lgelb]

Salmon fat and skin are full of good nutrients. Drip away so long as you don't leave any fat to solidify.

There may be foods that work better or worse when blended for the tube than they did when you swallowed them -- you will figure out what those are.

 

[KimT]

Macro nutrients is just another name for protein, fat, and carbs. Micronutrients are vitamins and minerals. I've been on a pretty high protein/fat diet since onset in 2015, except for the panic carb loading in the beginning. I love wild salmon and eat it several times a week. It isn't cheap but I love it. I also love sardines LOL. I tested my uric acid levels since I have a lot of joint pain but it was in the low normal range so I don't have gout. Too many sardines can cause it but I'm safe.

Good old fashioned Cod liver oil is pretty good, too. My vitamin D levels (D is really a hormone) are low unless I supplement with at least 5,000 IUs daily. That's in addition to sunshine and the D I get in food.

Everyone is so different and, sometimes, it takes experimenting to figure out what works for you.

When I first came on this forum, it was thought that a high carb diet increased survival rates. Even though there were probably studies, I think it might have had something to do with keeping weight on. I've always tried to emphasize healthy fat and quality protein. It's been very expensive but I've sacrificed other things to eat healthy.

 

[lgelb]

Agreed, eating donuts to keep weight up isn't going to help. Simple carbs/sugars put a strain on the pancreas even in the healthy.

 

[MupstateNY]

I don't understand why some of the g-tube formulas contain sugar.

Thanks for the reassurance about the salmon. The salmon fat seems to be an oil, technically -- not solidifying at room temp. I've been buying the one from the Faroe Islands because that's the one that has skin on. I'm crazy about the skin.

I've never been a sardine fan. Please tell me how you eat it and maybe I'll like it better. Do you eat the oil they're packed in?

My calves are starting to look atrophied (lots of fine, long wrinkles). Saw a different neurologist Thursday, in person, and despite their appearance, when I demonstrated my little squats from my home PT routine, she asked me to go down further. My spouse thinks she's kind of green. I'm confused, because she did a neuromuscular fellowship at Mt Sinai in NYC.

 

[Greeneyes]

Has any one started on the drug Radacava? My brother will start on this soon and wondered how effective this is. Does this prolong life expectancy. Ant thoughts would be welcomed.

 

[MupstateNY]

How's it going so far for your brother? I find it annoyingly sweet so I sip water in between swallows.

I'm in my 3rd cycle. I did look at the bar graphs on their website, looked encouraging. I have no idea if it's going to help me.

 

[lgelb]

You can also do a search up top for more experiences here, Greeneyes. It's spelled Radicava.

Because PALS progress differently, it's hard to assign any kind of aggregate number; each PALS is their own "control group."

 

[lisa g]

Green-eyed, I started out taking Radicava 3½ years ago by infusion and recently transitioned to the oral form. Does it help? That's a question that's hard to answer we all progress differently. I would like to think it has helped since I'm still able to walk with the use of a rollator.

 

[Andvari]

My honey has me on a 3,000 cal/day diet with homemade shakes from some magical creation she makes. She has a food press so I am getting fruits and veggies in the shakes, chocolate ice cream, homemade oat milk (not sure how she milks oats but heh) Ensure, a whole bunch of anti-oxidants from natural sources, whey powder, she waits until I am ready to drink them to put a banana in there. They are pretty delicious. She tried something new today by adding peanut butter, that was very different, took away the chug-ability of the shakes. I get about 1300 calories from her 40 oz shakes and she makes sure that I eat donuts in the morning, lunch at work, and dinner. My VA Nutritionist is very happy with the fact that I haven't lost any weight, staying right at 190 lbs. I lost about 100 lbs prior to diagnosis, now that I know what it is, we are fighting back. I need the 3,000 cal/day because the fasciculations are constant, and I am just burning energy.