Why do I feel so bad?

[Dana J]

Karen, thanks for the advice. We will look into the Kate Farms Komplete to replace the Boost. Yes, we moved to Ashland recently. We had property in Eagle Point that I could no longer take care of so we moved to a townhouse here.

Kim, thanks for the smoothie recipe, we will try that too.

 

[plcare]

Before I was diagnosed with ALS, I avoided sugar, corn syrup, processed foods, fast food, etc. Since then I have decided that if I want to eat something, I eat it. What's the worst that can happen? Obviously, I avoid anything that might make me sick, but other than that, anything goes. I so rarely have an appetite, and will probably need a PEG soon so my philosophy is to eat what I want while I still can.

 

[Dana J]

I also ate a clean diet for the most part. I think that is why my body is having a hard time digesting the processed sugars and oils in these nutritional drinks. I agree with what you said about if you want it you eat it, me too, as long as I don't feel sick afterward. I have been enjoying the Taco Bell Burrito Supreme lately because it's one of the fast foods I can eat without great difficulty. I love 5 Guys and In & Out Hamburgers but they have become too hard for me to eat. I think the thing I miss most is pizza and a good steak, sadly those days are gone now.

Kim, I made a reasonable facsimile of the smoothie recipe you suggested. We used a little to much peanut butter so it was thicker than I like but we'll get it down. I feel that gave me a lot of needed calories so that's good.

 

[lisa g]

I also make a protein shake every morning for myself and my husband. I buy clean organic protein powder from costco. I mix banana, grapes,avacado,raw walnuts, blackberries, flaxseed, hempseeds,nutritional yeast, soy lecithin granules, blueberries, strawberries,spinach and nut protein milk (10 grams of protein) and blend it. 1,069 calories to start my morning.

 

[DrDark]

no expert here, but do you have a history of snoring? Can bulbar symptoms exacerbate OSA that may have been subclinical prior to bulbar symptoms? also, mirtazipine can improve appetite, but is also highly soporific.

 

[Dana J]

I know that Remeron induces sleep, which I don't mind. I would take it at night before bed if my psychiatrist prescribes it for me. Yes, I have a history of snoring and sleep apnea. The sleep apnea I had was not obstructive though, it was the type that you stop breathing for a period then restart. While sleeping I would suck in air and let it out in a slow whining pitch. Also I would wake up holding my breath. I have never been overweight. The very first symptom I had, even before slurred speech, was I stopped snoring and my sleep apnea went away. I have Bulbar Onset ALS.

 

[Dana J]

Update: Since my last post I have had the peg tube placed and had an appointment with my psychiatrist. He prescribed an additional antidepressant, Remeron, which was recommended by my ALS nurse and also KimT on this forum. It has made a big difference in the way I feel. I no longer am feeling super bad in the morning, it has also helped with my sleep and appetite. He said that sometimes depression doesn't feel like your depressed but you just feel really bad. That was me. One thing though, since going on the Remeron my speech became much worse. I don’t know if it’s the drug or ALS progression. Thanks KimT for the recommendation. I am also getting more calories by having the peg tube and am not struggling every day to get the fluids and nutrition I need. I recommend to other PALS to get a feeding tube before you really need one. It really is a quality of life issue. I still have some fatigue but it isn’t as disabling now. Much thanks to everyone who commented on this thread.

 

[Vincent]

As far as nutrition goes, buy a blender and puree what you normally eat. You may need to add water to get a good consistency for the tube. There is really no reason to use formula except for convenience when you are out. Soups are a good place to start.

Vincent

 

[KimT]

Remeron can make your mouth dry and the dryness might cause your speech to feel worse. I would make sure to increase fluids. Also know that you should get fiber and possibly use a stool softener because Remeron causes constipation.

Glad you're feeling better !