keeps loosing weight

[maryam_rastkar]

hi everyone
my father's got no apetite at all
-just a little problems with swallowing,and no tubes-
he eats very little and he keeps loosing weight
-height 175cm weight 48kg-
what should we do?
ps: is there any special diet for PALS?

 

[Danijela]

Most PALS find that a feeding tube resolves this issue. But it may be difficult to have one inserted if his FVC is too low. Others have made suggestions about types of food that are easier to swallow. and high calorie foods. I am sure someone will post some advice.

 

[SavoringLife]

I add BeneCalorie to my husbands food. It is a tasteless liquid that adds 330 calories per serving. It's a good way to increase the amount of calories, without increasing the quantity of food. He also drinks EnsurePlus.

 

[maryam_rastkar]

hi danijela
thanx for your advice
he doesnt want a tube, thinks he is not at that level yet ,
-so proud that doesnt want to be seen like that with a tube-
but the calorie idea was brilliant

 

[maryam_rastkar]

hi savoringlife
he gets atmost 500 calories a day now
-most of the time fewer that that-
it seems to be a really good way
thank you very much

 

[indigosd]

I add hidden calories to DH diet ie heavy cream in coffee or cooked cereal, a lot of REAL butter, tons of sour cream and all the ice cream that he wants! He has gained 15 pounds in 4 months and still looks underweight. He is not happy but I celebrate every little ounce!

 

[maryam_rastkar]

amazing!
but it wont have effects on blood fat?
i mean because of all the fat in cream , butter , ice cream ...
my father is really concerned about his blood fat and blood sugar
and he thinks that because of his weight loss he needs less food
to keep the balance of blood things!

 

[brooksea]

maryam,

It has been hypothesized that a high fat/high cholesterol diet is of benefit to pALS and may increase survival rate. For information regarding this subject you can go to the ALSTDI forum and do a search for "cholesterol." A gentleman on that forum researched this extensively for his wife and posted his diet that he developed for her along with research papers he found regarding this subject.

Good luck to you and your father.

 

[BarryG]

he doesnt want a tube, thinks he is not at that level yet ,
-so proud that doesnt want to be seen like that with a tube-

Maryam, a peg tube is hidden under your clothes so it is not something that is "seen" at all. I understand that he may be reluctant and doesn't believe that he is not at that level yet, the trouble is at least in my case, by the time I had accepted that I was at that level it was way past the time when I should have got it. I went from about 160 pounds to under 120 in one year and have just managed to regain about 20 pounds in 8 months on a 2000 to 3000 calorie a day diet (tube and mouth feeding).

 

[Katie C]

The idea that a higher fat diet is good for PALs actually makes sense to me... for the same reason you're supposed to feed little kids whole milk. That fat actually is used for nerve growth, and one wants the PALs nerves as protected as possible for as long as possible. We sneak in calories that way too.. butter in the mashed potatoes before he sees them, ordering his lattes "breve" which means they're made with 1/2 and 1/2. Since our son works at Starbucks and all his coworkers know "Kev's Dad", they're always looking for ways to sneak in calories.. extra caramel, extra whipped cream, etc.

 

[Al]

My opinion is" What's the worst it can do? Kill you? " Don't eat bacon and sausages every meal but generally speaking, ALS will get you before the high cholesterol will.

AL.

 

[hopingforcure]

I have elevated chlorestal myself, I have definitely heard that it has been something common in long term life expectancy of pals.. Who knows.. It just gives me another reason to eat what I want....LOL