Tips for Living with ALS

HELP FOR A PALS 

THE SECRETS OF GETTING A GOOD NIGHT’S SLEEP

February 13, 2023

Suggestions collected from the local ALS Community

· Watch or listen to podcasts that help you relax

o Event Horizon on YouTube is an example

· Calm and quiet time for bedtime routine and sleep.

· Binaural beats with headphones-similar to what is used in massage rooms, but more precise. There is an app on the phone that has this. 

· White noise machine.

· Frame at the foot of the bed that holds the sheets and blankets up off of the toes.

· Lightweight bedding to alleviate the feeling of being pinned down. 

· Keeping the room temperature at a comfortable temp. Some sleep hot, but also want to avoid the chill. 

· Melatonin and Chamomile tea

*Use the following at the direction of your doctor or medical professional

· Sleep Aids

o Kirkland Sleep Aid or Tylenol PM

o Relaxium

o CBD gummies or tinctures

If there are still troubles sleeping patients have found that a Palliative Nurse who understands sleep issues can help to prescribe some stronger medications.  

o Oxy

o Lorazepam

o Methocarbamol 

o Hydroxyzine

o Promethazine

Help for PALS 

Dry Mouth

April 27, 2020

Suggestions Collected from Local ALS Community

Useful suggestions that came in:

· Keep a water bottle with the long flex-straw anchored next to the bed. A special bedside table with cupholder could be available through the loan locker.

· Use of mouth swabs to moisten the inside of the mouth and toungue

· Use a chin strap to keep the mouth closed while sleeping. 

· Sleeping reclined rather than laying flat

· Humidifier in the room where you sleep

Other helpful tips some used to find some comfort

· Swishing with Listerine

· Biotin rinse and gel

· Prescription med to increase saliva

· Sucking on a cough drop or sugar free hard candy 30 minutes before bed

· Yogurt and/or Coconut oil swished around in your mouth for about 15 minutes to coat your mouth

 **Insurance will only cover one powered wheelchair, so if you want to get a smaller more compact chair, paying cash for your first chair may be preferred. That way insurance will cover the more advanced full-powered chairs, that are significantly more expensive.**

Some things to consider if you are starting to experience some issues with standing or walking:

• Is a cane or walker sufficient to keep me safe?
• Can I safely transfer from one seat to another?
• How much support might I need for the strength in my arms or torso?
• Can I just use a wheelchair for short-term,, travel, or outings? 
• How long until I will need the full powered chair, and how long will it take to get it? 
• 
  

 One member weighed in that with the progression of ALS, you will likely end up requiring a full-power wheelchair. 

Depending on how fast you progress, where you want to go, and how much you want to spend, you will have different needs for what wheelchair you should start with. 

For tight spaces, it’s preferred to have a three-wheel chair for a better turn radius around tight corners. 

It is also important to note that if/when you think you may need a full-powered wheelchair, order one well in advance so that it has time to be made and delivered. 

Another tip is that you order the more advanced chair while you still have the ability to transfer and use your hands.  This ensures time to get used to the chair while you still have the motor function.

In the Information Sheets section,  you will find an amazing spreadsheet one of our PALS put together while searching out options for a wheelchair before the need of the full power chair. 

We are working to gather more Tip Suggestions