Newly diagnosed advice with diet

[Rodo145]

Hi eveyone,

I dont have als but my mother has been recently diagnosed and im trying come up with some diet for her to help her however may be and im hoping to get some advice. Ive been reading about als and foods and vitamins that can help slow down the progression this what i have so far and any input would be very appreciated.

Lion mane muchroom powder and extracts
Cocunut oil (she will be starting with 1 tbsp per day but ramp up to much as can take)
Flaxseed oil
Organic unpasturized honey
Organic magnesium
High anti oxident veggies fruits
Lean meats like chicken breast and fresh fish

She has lost about 30 pounds over the year, has problems speaking, fatigue, and will going on oxygen this week

I was wondering if someone else has tried a diet like this and has had positive results and if you all had some input

Thank you everyone

 

[Vincent]

Hi from another Barrie person. Sorry to meet you here. I have been using a diet of 150% of maintenance calories. There was a study out of Harvard that showed a high calorie high carbohydrate diet was associated with a longer lifespan than a high protein high fat diet. It works for me, though I have a slower progression to begin with. As far as oxygen goes, it usually not something given to ALS patients. The problem isn't with low oxygen levels as high carbon dioxide levels. The treatment for that is a bipap machine. Oxygen can actually be harmful. If you would like to meet up I am usually at the ALS support group in Barrie, or message me and we can meet up at Timmies or something.
Vincent

 

[Rodo145]

Thanks for the advice. But im curious what kind of carbohydrates are best, grains like bread and pasta or fruits or just a combination of both? Also ill gladly meet up with you the only thing is tho i actually live in perth ont but my mom lives in barrie. Im currently in barrie until this sunday but will coming back the week after for the week. So i can meet you either this firday or staurday or we can meet almost anytime when i come back to barrie w.e works best for you is fine with me

 

[affected]

Hi Rodo I'm so sorry about your mums diagnosis.

The important thing is to hold weight and putting some weight on now is a good thing. She has been losing weight and it's important to reverse that now. It doesn't matter how you get her calories up, whatever her food preferences are should be a good guide.

What I mean is if she loves savoury foods then it may be adding lots of coconut oil, butter, cream etc to make savoury dishes taste even richer and get the calories up.

If she has a sweet tooth it may be adding desserts and sweet smoothies in to her day. Just talk to her and tell her the one bonus is that she can eat whatever she wants. Sure nutrition is important, but calories are king now.

Definitely there is an issue if she is being put on O2, this is very dangerous for our PALS as their lungs work fine, it's the muscles used to breathe that don't work and they have more trouble getting rid of CO2. If given O2 the body is tricked into thinking it doesn't have to try hard at all and the CO2 builds up and is deadly.

Hope that helps

 

[lgelb]

Sorry to hear re your mom. I would be cautious about unpasteurized honey, only using a source that you have reason to be confident about, as it can be contaminated with pathogenic bacteria and people with ALS are frail in terms of infections. And Tillie is right about oxygen; she should be using a BiPAP if her breathing is weak. That may also help her have more energy for eating and digesting food, though she may need a feeding tube in the future.

Both simple (cookies, cake, mashed potatoes) and complex carbohydrates have their place in ALS or anywhere else. The most important thing is balance and maintaining weight, or in her case, regaining if she is too slight now.

Best,
Laurie

 

[Vincent]

I tend to be fairly indiscriminate about calories. As they say- we have an unlimited diet. Whatever carbs your mother likes, give her lots. If you want to meet up 2 o'clock at the Tim's on Fairview Friday works for me. I'll be wearing a blue jacket with Vincent on the chest. Hope to see you there.

 

[Rodo145]

Actually i cant meet tommorow my wife wants me to go with her to toronto to visit a family member. Can we do it on saturday?

 

[Rodo145]

Thanjs for the advice everyone ill make sure not to give her unpasturized honey feed her lots of calories/ carbs and when the respiratory specialist comes for the visit on monday ill make sure to ask about the BiPAP machine today only a tech came to drop of some air for her and a machine with a general prescription for her but the one thing thats good is shes seems to be sleeping very well tonight because of it

 

[Vincent]

Saturday works for me.
Vincent

 

[affected]

If you are giving her O2 at night without bipap she may seem to sleep well but I must say it is very dangerous. As I already noted, she will breathe less deeply with O2, and a build up of CO2 makes a person very sleepy. So what you are thinking there is good may be a bad sign.

 

[Firefighter58]

Hi Rodo145
If your mom has been dx with ALS in Ontario I am sure she must have contacts with an ALS clinic and that would be a very good place to start for advice. I have found them a wealth of info and have diets designed for ALS patients. If she is not connected with a clinic I would strongly advise her to do so. In Ontario that is what is available and that is we are entitled to.
Al.

 

[Rodo145]

Well on monday im going to talk to the resperitory specialist about the BiPAP machine when she has the appointment. Also she doesnt have her first als appointment until the first week of april but ill talk to them about her diet and what she can take

 

[Rodo145]

Saturday works for me.
Vincent

Hey vincent i cant make it today either sorry. Theres to much around the house todo before i leave tommorow but ill be back next weekend we can have a chat then sorry about the cancelations

 

[Vincent]

See you next week.

 

[Touchet]

I'm not a medical professional but I took care of my mother also and all I do know is nutrition and hydration is very important! Healthy foods are great but let her eat what ever she wants if there are no other food issues! My mother was obsessed about being thin and would not eat a lot because she didn't want to get fat. We could not convince her that none of that mattered and it is now all about maintaining a good or above average weight. She would not comply and it made her disease progress very very fast! From my personal experience I say , let them it cake , cookies , whatever they can or will! I'm so sorry you are having to go through this , you will be in my prayers!