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Website Last Updated on March 12, 2026
Caring for a Person with ALS (PALS) doesn't come with a manual. What it does come with is a steep learning curve, a lot of sleepless nights, and — if you're lucky — the occasional breakthrough moment when something you improvised actually works beautifully. This page is our way of paying that forward. Every tip here has been lived, tested, and refined in our home. We hope it saves you time, worry, and effort.
- Keeping the Nebulizer Cup Upright During Nebulization
The challenge: For nebulized medication to reach deep into the lungs, the nebulizer cup must stay perfectly vertical throughout the session. Anyone who has tried this while managing a ventilator circuit knows how tricky that can be in practice.
What worked for us: We put together a simple but effective setup using three standard T-pieces arranged in a specific configuration (see the photographs above). Unnecessary holes can be blocked using stoppers. For blocking, we use the cap of "Fast & Up Reload" instant electrolytes, marked with a yellow arrow in the last photograph.
Another variation of the same setup can be seen in the following photograph where the catheter mount is placed sideways making the nebulizer cup in line with the ventilator airflow. So this should be preferred over the 'top' placement of the catheter mount.
2. Using an Ambu bag as a manual ventilator for lung volume recruitment or handling emergency situations
2. Using an Ambu bag as a manual ventilator for lung volume recruitment or handling emergency situations
If there's one piece of equipment we'd never want to be without, it's the Ambu bag. It's simple, affordable, and has bailed us out more than once.
An Ambu bag is a valuable tool — it works as a manual ventilator for lung volume recruitment and doubles as a lifesaver when the primary ventilator fails. It comes with an optional oxygen port for added support. In routine use, squeezes should match the patient's natural breathing pace, generally 12 to 16 times per minute. During emergencies — such as a drop in saturation, a blocked tracheostomy tube, or an unresponsive patient — connect supplemental oxygen and increase the rate of compressions until oxygen levels stabilize.
3. Simultaneous nebulization and Ambu bagging for lung volume recruitment and clearing lung secretions
3. Simultaneous nebulization and Ambu bagging for lung volume recruitment and clearing lung secretions
It wasn't something we planned — it happened almost by accident. But combining nebulization with Ambu bagging at the same time turned out to be one of the most effective things we do for airway care. The Ambu's positive pressure drives the nebulized medication deeper into the lungs for better absorption, while simultaneously pushing secretions up toward the trachea — making suctioning quicker and far less effortful for everyone involved. It may feel like a lot to manage at first, but within a few sessions it feels completely natural.
4. Make your enema solution at home
4. Make your enema solution at home
We've been using the Neotomic enema — a pediatric formulation — for our PALS since February 2021. It has worked consistently well for us, with no side effects in all this time. The only downside? It's expensive. In India, it costs around ₹70 for just 20 ml (as of February 2024), which adds up quickly.
So we looked closely at the composition and started making it ourselves at home. It turns out the ingredients are simple, widely available, and — when prepared carefully — just as effective.
A close inspection of the composition of Neotomic enema is as follows:
Sodium Chloride aka NaCl: 15% w/v or 15 gms in 100 ml enema
Glycerine [Density = 1.26 gm/ml ]: 15% w/v or 15 gms in 100 ml enema
Rest is Water aka H2O [Density = 1.00 gm/ml ],
All basic components of the enema ie Salt, Glycerine, and Water are easily available. However, these should be acquired and processed in the most sterile manner. We mix glycerine, salt, and normal saline in appropriate amounts to follow the desired composition.
To prepare: Combine all three ingredients in a sterile bottle and shake well. This gives you roughly 680 ml of solution — good for about 17 sessions at 40 ml per dose. From our experience, 30 ml is usually sufficient when administered correctly, which stretches the batch even further.
Store whatever remains at room temperature in a sterile, airtight container.
⚠️ Please prepare this under strict hygienic conditions using sterile equipment and non-iodized salt. As always, consult your medical team before making any changes to your care routine.
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