Post #2 Weight / Appetite

[Floyd Parton]

I go to Vanderbilt in Nashville on 19 July to visit Dr Donofrio, the regional expert on ALS, so I wanted to wait until after 19 July when I would have a second opinion concerning my ALS diagnosis and then I was going to make my second post, however I had a pressing question and was hoping for some input. I am almost 6 foot 4 inches tall and weigh 216 now. I weighed 234 in November when I realized something was happening to me. At first I was not concerned and losing weight was fine since I weighed more than I should anyway, but now I find myself struggling to maintain my weight. If I do not eat 4 meals in a day, I lose a pound or two. While I have no appetite or desire to eat, I know I need to eat. Fortunately, when I do eat, the food tastes good and it is enjoyable to sit down to a delicious meal. My ALS is limb onset so as of now I have no trouble swallowing. I presume this is pretty normal. I suppose the muscle breaking down is causing the weight loss. Anyway it is a bit challenging to get in my four meals each day and I was wondering if anyone has any good suggestions about keeping your weight on.
Thanks in advance for your guidance and suggestions........cheers....fp

 

[panguinjen]

Floyd,

Starting adding higher fat foods to your diet....olive oil, coconut oil, cream, butter...use protien powders, drink shakes and smoothies. Rog's doctor didn't want him to lose more than 2 pounds per month, we were lucky if we could keep it to 10/month. He lost 60 pounds before he agreed to a g-tube. The ALS site has some good ideas for keeping the weight on...

Jen

 

[wandabrittle]

Hi there. Get a feeding tube. It helped Glen to keep his weight on . After each meat,between two or three hours have a Resouce. Have two or three a day. This will help keep your weight on. Love Wanda Brittle xoxo

 

[sadiemae]

A good med is mirtazapine, a mild antidepressant, sleep aid, and appetite stimulater.

 

[ottawa girl]

Hi Floyd,

I think we're at about the same stage? I have gained weight! (way too much weight!). First reason was being too tired to exercise and then too tired to make proper meals . Then I was diagnosed. Well - all we ate for an entire month was cheetos. Seriously - both my husband and I were depressed/shocked etc at the news and so, we ate cheetos. for dinner. Every night - more cheetos. Please keep in mind that I am a vegetarian and for 25 + years was conscientious about nutrition & exercise. (I ran marathons)

Maybe cheetos will work for you! LOL. I am just now finding the motivation for eating healthy, so hopefully my extra pounds will be lost and make their way to you. I do realize how crucial it is to eat right - especially now - both for me and my husband.

Have you considered eating 3 meals a day and adding 2 or 3 higher fat snacks, such as avocado/cashews/almonds/milkshakes/beer?. That may help you keep the weight on and it's not like forcing down an entire meal.

Let me know how you do.

Elaine

 

[ottawa girl]

Hi there. Get a feeding tube. It helped Glen to keep his weight on . After each meat,between two or three hours have a Resouce. Have two or three a day. This will help keep your weight on. Love Wanda Brittle xoxo

Wanda,

I am truly sorry for your loss. We're neighbours too I just noticed. I have friends in Alexandria too).

Elaine

 

[brooksea]

A high fat diet is considered essential for pALS. In fact, a research study is or was under way to study it's effectiveness. Metabolism is sped up in ALS, so you are burning energy/calories while doing nothing.

Eat all of the things considered off limits in a healthy diet. Southern food is an example of what would be good for you while you can still eat normally. You live in TN so that shouldn't be any big problem! Seriously, creams, butters, fats, gravies and Ensure or Boost.

 

[CGARS]

Hey Floyd,
I add a high calorie meal replacement to my regular routine.
I buy the walmart brand, tastes pretty good. (chocolate, vanilla and strawberry)

Cheers,
Casey

 

[momap53]

Make the gravy and quische with heavy cream!
There are never enough home made french fries!

 

[Syekick]

Hi Floyd,
I'm in the Nashville area and see Dr Lee at Vanderbilt. I was diagnosed, after 18 months of misdiagnosis, in 4/2012, when I went to Dr. Lee, my third neurologist. I went through a year of losing 3 pounds a month. I'm 6'4" also. I got down to 193. I finally stablized somehow and have picked up 10 pounds. Still can swallow and talk. Legs are about gone and my arms are so weak I think my little grandkids could beat me arm wrestling. I use a power chair and glad to have it as it saves strength and keeps the fatigue down. I have to use a bipap to sleep or anytime I lay on my back or side as my chest muscles are so weak I can't get in enough air. Otherwise, all is going well and every day is a great day!

 

[brooksea]

Also, you can add Benecal orie that is about 1oz and 300 plus calories, if I remember correctly. You can orde r on line. It is tasteless and can be added to anything you can eat.

 

[ltbeauti]

I lost weight on the beginning before I knew what was going on. I have been adding an Ensure a day ( i take my morning meds with 1/2 bottle and the same at nightime.)to my regular 3meals. I have been maintaining my weight for the past 6 months.
I eat high calorie snacks between meals also. It is hard to do when you are not hungry. I am rarely hungry.
I eat almost everything with sauce now. Gravy, or dip, or cream. It makes the food easier for me to eat and it adds those needed calories.

 

[jamiem]

Ensure is expensive so my Dr. has recommended Carnation Instant Breakfast with whole milk throughout the day. This is helping me maintain nutrition as I am having a lot of trouble eating. Good luck everybody. We are a great team. jamiem

 

[ltbeauti]

I use carnation instant breakfast also. I like to use it smoothies to add calories,protein and thickness.

Personally, The instant breakfast taste better too.

 

[Floyd Parton]

Thanks to everyone.....I appreciate all the info/suggestions/guidance........I am doing well at maintaining my weight now......Eating w/butter and gravies etc......The Ensure is indeed expensive......For now I have added it to my daily routine.....and it certainly seems to help but it is costly.........thanks again.....cheers.....fp