Diet?

[dp1969]

I am new to the forum. Diagnosed with MND in December 2009. I am 40 yrs old, married with three beautiful daughters (13, 10, & 7).

My wife is a wonderful, generous, caring person who is driving me nutz. She has me on a "nuts & berries" diet...I can eat what I kill or pull from the ground. At this point I would kill for a slice of NY style pizza! I do have to say I am enjoying hearing my 13 year old constantly complain about her "new diet" (is that bad?):smile:

I love my wife very much and know that she doing what she thinks is right, as well as coping best she can, but is anyone on an organic & gluten free diet and do you think it is helping to slow progression? Is there even anyway to measure that?

I know that we are all at different places in progression and for those using feeding tubes I apologize in advance if my question appears insensitive.

Any thoughts are appreciated.

dp

 

[indigosd]

Dp, You made me lol this morning and I really needed a good laugh! Organic is always good for EVERYONE if it is available and you can afford to purchase it :] Do I think it will "slow progression"? In my humble opinion, probably not but it wouldn't hurt either. It is critical for PALS to not lose weight and to get a ton of FAT calories! That will probably put her over the edge lololol Web wants to eat for as long as he can-real butter, heavy cream, sour cream, NOTHING LOW FAT and ohhhh the Ice Cream! Complete change of a lifetime of no fat! I say EAT everything that you can or want for as long as you can chew and swallow including a entire NY style Pizza! I would have fed Web "Cat Hairball Stew" if I thought that it would have slowed the progression...we tried all sorts of supplements etc in the beginning and nothing slowed down the beast. :[ Must go and fix his mashed potatoes made with heavy cream, real butter, sour cream and smothered in gravy for lunch!

 

[dp1969]

indigosd -

I will let my wife know that I spoke with one of the countries foremost nutritionists today, "indigosd Phd"; who suggested that I ingest an entire NY style pizza as soon as possible! Actually, thanks for the kind words. I appreciate the comment about losing weight and will take that to heart.

dp

 

[joelc]

Eating healthy is always a good idea but as far as slowing down the rate of progression - not likely. I thought about it but decided I wanted to eat the things I really liked for as long as I could. So I eat all the things we have been told not to because they are unhealthy. Makes no difference so enjoy!

 

[sadiemae]

We have been told that keeping weight on does as much if not more to slow progression as Rilutek does. Consider getting a PEG now, and use the tube for nutrition and eat for enjoyment. This is what my PALS does. HUGS Lori

 

[Al]

I had wings, fries, onion rings last night. Night before had pizza. Not exactly my regular diet and I had a couple of glasses of red wine with pizza. It hasn't killed me yet and I was diagnosed 2003. Truth is I think fat guys live longer. Eat what you want. Be stress free. You'll live longer.

AL.

 

[dp1969]

Grampal -

Thanks for the advice...my mouth is watering just seeing the word "onion rings". The boss at home actually still lets me drink red wine...thank god!

Thank you everyone for the words of advice.

dp

 

[hopingforcure]

Al, you make me laugh. i love junk food, always have, my son said you must have high hgl mom, yep people seem to live longer with it, in AlS.. The fat theory might hold true.

 

[handinhand]

Hi, I have a chocolate malt every day...lol

 

[indigosd]

Now consider this; HAS ANYONE EVER SEEN A FAT PERSON DX'D WITH ALS?! I haven't. It is ALWAYS the nicest, physically fit that have taken care of themselves and watched their diet.

 

[BarryG]

dp, as someone who cannot eat anything I will say, eat what you want for as long as you can. We all talk about making good memories and to me food memories are some of the most important that I have, barbecued steak, gooey cheesy hot pizza, hamburgers with cheese and bacon, french fries, a crunchy greek salad, bread fresh from the oven, scrambled eggs and sausage, cold beer, red wine, you name it, I wish I could eat it. Sorry but this is a bit of an issue with me, it is more than the loss of the taste, it is the loss of the whole eating experience.

To hell with healthy, I want hot and spicy. I agree with the others, probably the most important thing that we can do in fighting this disease is to keep the weight up.

 

[irismarie]

Take everything you love and go for it. Pleasure, pleasure, pleasure. Eat, drink and be merry.
But I love your wife for trying so hard for you and I love you for your sensitivity in thinking of those who cannot eat.

PS We are ALL high grade nutritionists here, tell your wife. We were all together at a convention which accidentally got pesticided so we all came down with this together. Bit of a bugger, really.

Enjoy the pizza;-)
Love; Irismarie

 

[dp1969]

Thank you to everyone...I will start fattening up immediatley!
dp

 

[peter57]

I agree dp, with all the comments before.
Eat what you enjoy to and keep up the weight.

I like Al's diet, Pizza, onion rings, fries etc. Had the same over the past few days except the rings, subsituted them with potato wedges with sour cream and sweet and sour sauce. Followed by apple pie and for supper a healthy slab of chocolate.

Barry.
I can understand your frustration, if and when I get that way it will be a dark day for me as well.

cheers, and it is time for my mid morning snack

Peter

 

[brooksea]

Pile on as much fat as you can! You will be losing weight soon enough, so you'll want to have some in store like a squirrel about to hibernate!

My husband was losing weight despite our best efforts to fatten him up. He opted for the PEG and has gained about 10 pounds since January. Once you take so long to eat, it isn't so easy to get the calories, no matter if they be nuts and fruits or onion rings and fries.

Thank your wife. You may want to investigate the ALSTDI -|) forum about the high cholesterol diet that a doctor put his pALS wife on.

All I know is that my husband would be much worse off today if he stuck to only carrots and celery. He ate "healthy" before diagnosed and of course splurged on the pizza and feta cheese, but he was up to 210 shortly before he was diagnosed. He got down to 182 and is now at 192 due to the high fat diet and formula. He's 6'1" (he's shrunk a little).