Rick's Resilient Rejuvenation

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RBbutterfly

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Hello ALS Forum community!

Thank you for creating this venue connecting PALS to solutions and insight into ALS. I created this account on behalf of my beloved father Rick Brill. Our dad is the epitome of light and love, and has been shining exuberantly his entire life. He respects EVERYONE NO MATTER WHAT, and showcases a unique quality of joy and resilience. My nephew organically nicknamed him "Happy" as energy and actions speak so much louder than words!!!

We are closely monitoring the Nurown Stem Cell Therapy Clinical Trial with hopes that the participants' results are a success. Dad is open to all remedies but leans toward natural, non-pharma solutions.

Pops was diagnosed a couple weeks ago with ALS, but has had symptoms for around 2 years. We are looking for support in a few areas and would greatly appreciate any feedback you may have 🙏

Here are some of the major obstacles pops is going through where we need support:

Nausea/ Diet/Digestion
- He has had intermittent nausea spells the past few weeks, but has been experiencing it non-stop the last 3 days. He is currently taking Zofran which is an anti-nausea medicine, and we have upped the dosage with hopes of mitigating the nausea. He is taking a type that dissolves, and will be getting a patch to try soon. Has anyone here experienced nausea with ALS?
- Dad has GERD/Acid Reflux and we don't know if or how they relate to ALS?
- Our dad has lost a significant amount of weight and we are trying to figure out ways to beef him up with good proteins and nutrients. I came across Kate Farms Peptide 1.5 ((THANKS TO THIS FORUM!)) and we just ordered him some. Pops doesn't want to take a appetite simulator or steroid so we hope this will help.
- Are there any ALS dietitians in this forum or can someone recommend someone to help us out with this?

Thank you so much for taking the time to read this and we look forward to hearing from you!

All the best,
-Jared and the Brill family

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affected

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Welcome Jared, so sorry about your pops diagnosis.

First I would ask if he is on riluzole and if the nausea is related to how he is taking this as if not taken correctly it can cause this.

If not, I would ask about how his breathing is, as a full stomach with a weakening diaphragm can cause nausea to increase.

Has he changed his diet at all? Does he feel more nauseous in certain positions or at certain times? This may help with strategies such as staying semi-upright, eating smaller amounts more frequently etc.

Keeping weight up is definitely linked to progression but there are no certainties with this disease. What we do know is that if a PALS is losing weight, they are likely to find progression speeds up.

Packing calories into his diet without increasing bulk too much will possibly help most with this nausea. Don't worry so much about things being nutritious as slowing down the weight loss. The way to do this often depends on any dietary issues he has, and food preferences.

So I've asked lots of questions back, but that may help you work through causes and therefore strategies worth trying.

We are a community of people dealing with ALS here. We happen to have medical professionals here at times, when they are diagnosed with ALS or are CALS, but we don't have active health professionals as such.

Pops clinic should be able to get him going with a dietician if you want someone to work through it with him. I will just note that a lot of dieticians prescribe formulas that are based on corn syrup to pack calories. These work fine for many, but not everyone, and many people try to steer away from corn syrups.

This may give you lots more questions to ask back too - and hopefully you will get lots of responses with experience from the many folk here :)
 

Nikki J

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Does he have a feeding tube? Why did he lose weight? Swallow trouble? Arm weakness that impacts feeding? Generally too exhausted from activities to have energy left over to eat? Because of nausea?

i too wonder about breathing. If he is working hard to breathe overnight his calorie needs sky rocket. If this is an issue he needs to look at bipap. These are weird times. Did the clinic do breathing tests? Lying and sitting? Because of covid they may not have done so.

search this forum for smoothie. There are lots of high calorie suggestions

riluzole can cause nausea which usually subsides in a few weeks but it sounds like this predates diagnosis. Weakened muscles increasing gerd are likely and the stress of diagnosis doesn’t help.

is he currently taking any supplements? Those can be an issue too.
 

vltsra

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My PALS was starting to complain about acid reflux about the time his breathing deteriorated in March of last year. We started bipap at that point. Has your dad had a respiratory test? Weakening of the diaphragm could contribute to the GERD.

My PALS is taking omeprazole for the excess acid which helps. Of course, my PALS has always taken a multitude of supplements.

V
 
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