Status
Not open for further replies.

Glorious

New member
Joined
Feb 17, 2011
Messages
5
Reason
Loved one DX
Country
US
State
NY
City
Long Island
I am new to the site but could really use some support. My mom was diagnosed with ALS 10/2010. Mostly her voice is affected right now, and she is losing weight. She is so strong and brave and I feel like I am going to fall apart. I try not to let her see, but inside I am a wreck, just devastated by this.

Also, she has refused any equipment/assistance, no feeding tube and she hates ensure so any weight gain suggestions would be appreciated.

Thanks.
 
My mom refused the peg too for a long time but finally gave in when she realized the alternative she was facing. In the mean time I filled her up with ice cream, pudding, cheesecake, very thick soups. Anything thick and soft will be easier for her to swallow. They also make thickeners that I used for kool-aid and rootbeer which helped quench her thirst. Chocolate milk is good it is usually pretty think. Thick-It, and Simply thick are two thickeners that we tried.

They also make cups that allow you to tuck your chin in which helps with swallowing. You could also just cut the top out of a cup and get the same effect.

Its a good idea to try to get most of your meals in earlier in the day if that is when she has more energy.

Eating often can take hours and require so much energy, that's what so great about the peg is it allows PALS to use their energy on things besides the chore of eating.
 
Hi Glorious, no further suggestions I'm afraid but just to say I hear your pain, sounds a lot like how things are for my mum who is also declining PEG. All you can do is try to keep as much weight on as possible, try encourage snacks later on in day too. Try make sure you are supported too and you stay as physically and mentally well as possible (easier said than done!) it's hard to let anyone know how terrifying it is, I find once I start crying I find it really hard to get a grip so try to limit it to one major malfunction a week (out of my folks view!)
The only thing that allows me to function is to try live in the moment and not dwell on what's to come. Wish I could say something more to make you feel better.
 
Walgreens has available something called RESOURCE Benecalorie, Nestlé Nutrition. You mix it with foods and it adds extra calories. You have to order it and you won't pay shipping if you have it shipped to the store for p/u. It has over 300 calories in one little cup and can be put in recipes of all kinds. I don't know how much it is nowadays. That might be one way to help her maintain weight.

We found that a store brand "Ensure" tasted better for my husband.
 
OK.. non-Ensure weight maintenance suggestions: Does she like Starbucks or other lattes? Have them made with breve (half and half) instead of milk. The staff at the Starbucks where my son works invented a Glen-drink: grande decaf breve mocha with whipped cream. Thing had to have a million calories, and Glen loved them. If she's having trouble swallowing liquids, you can get Thickit at most pharmacies to thicken it to a more slow-moving consistency. Use cream and butter when you puree foods ... makes the puree process easier and adds calories. Invest in a good heavy duty blender for pureeing... I killed a standard blender and a Magic Bullet. Vita Mix and the Montel Williams one both work well. Basically... think of everything we've all learned about keeping our weight at a good level.. and reverse it!
 
Glorius - I firmly believe that for those who are declining PEG (as my husband), the presence and motivated participation of the caregiver AT EACH AND EVERY MEAL is essential to success at weight maintenance.

We have all been told that fat in the diet is beneficial for ALS patients. But I believe it is most beneficial to use fats that are unsaturated and "safe." My husband lost 30 pounds very quickly after diagnosis. He was depressed and simply not interested in eating.

My first move was to get him to agree to eat 1/4 cup of shelled walnuts EVERY morning with his oatmeal, banana, prune juice and orange juice. Those walnuts turned his weight around quickly. They are full of good fat and calories and anti-oxidants.

He has maintained a level weight for many months. We have been able to accomplish this because he is not bulbar onset and does not choke. He can still enjoy food and look forward to a meal.

For lunch he eats a big bowl of soup(to which I add beans), a half sandwich on whole wheat bread, half an apple sliced and a cup of Activia yogurt. EVERY DAY.

For dinner he has fish (salmon, which is fatty), casseroles, eggs w/low fat sausage, chicken, or pork chops, with an occasional beef meal. Usually there are mashed potatoes with lots of gravy and green vegetables. I cook virtually every dinner with olive oil. EVERY DAY.

At mid-afternoon I give him a can of Ensure Plus or Glucerna. EVERY DAY.

This process has succeeded because of the consistency of the diet and the cooperation of my husband. He has interesting meals and he wants to live as long as possible.

I cannot emphasize how important those walnuts are.

Good luck.

V
Caregiver
 
V... in the original post, Glorious says mostly her mom's voice is effected right now. That would indicate to me that she probably has bulbar onset, and those walnuts could be extremely dangerous... as could the sliced apples and the beans. Also, she said her mom won't take Ensure. (Note to Glorious... will your mom eat the Ensure pudding? Glen had trouble with choking with regular Ensure, but LOVED the pudding. You can even order it online.) Personally, I figured the short term danger of weight loss is more important to deal with than potential long term issues from eating the "wrong" fats. Calories Calories Calories
 
Katie, I indicated my husband is not bulbar and does not choke. I included the walnuts information for the benefit of those who might view the topic who are also not bulbar onset. There was a lot of other information as well.

Perhaps the most important thrust of the post was that caregiver motivation and involvement for a PALS who refuses PEG is essential in weight maintenance. We need to be creative and to think beyond the box.

Regards,
V

P.S. Walnut "butters" and "pastes" are easy to make. Check online.
 
Last edited:
Hi Glorious,

I would recommend homemade vegetable soups/broths. It is a good way of getting in vegetables and fibre in the diet when someone isnt interested in eating fibrious veg. It can be easily fortified with extra calories by adding cream, butter etc. Also, soup is an everyday food, it doesnt have the same psychological connotations that puree food may have for your PALS (some people feel like they are eating baby food etc).

My PALS refused the feeding tube for a long time. I think eventually, the swallowing was presenting other issues like coughing, and that made the decision easier to accept. Also, most people refer to a PEG here, but my PALS got a RIG (radiographically inserted gastronomy). Maybe people are using the two terms interchangeably, but I would ask your nuero about both. Ours told us that RIG was a less invasive procedure, with the same end-result and therefore preferrable. (dont take my word though - just suggesting you ask your own doctor).
 
Dear Glorious, what a great name. Welcome. I'm so sorry about your mom. Of course you're devestated. Als is a family affair. All of us affected in different ways. Your mother sounds a brave lady and I bet you are too. On the weight gain request I totally agree with Katie. Take everything we've been taught about eating and reverse it. Think calories, cream, oil, butter. Figure out what consistencies and textures she swallows best and go for that. Don't be discouraged if the safe and enjoyable consistencies change over time. This is normal. On the rig/peg, not much difference in the end result but the proceedure is different. The rig took a little longer than peg. Can't remember whether anaesthetic levels were different. But this is probably a non issue for you if your mom doesn't want it. Hang in & shout if I can help.
 
Thank you so much to everyone for all of the great suggestions and support! This has been extremely helpful and I will definitely look into all the options mentioned.

On another note, my mom and I went shopping tonight and we had such a good time. I realized I am missing today because I am worrying about tomorrow.

Thank you all again!
 
Status
Not open for further replies.
Back
Top