Tips for Living with ALS

 Tips for starting a breathwork practice 

Dr. Young shares tips for getting started with breathing techniques. 

• Find someplace quiet. You can do breathwork just about anywhere, but when you’re starting out, it’s best to carve out a peaceful time and space for it. 

• Don’t pressure yourself to empty your mind. 

Once you start paying close attention to your thoughts, you’ll likely begin to realize how active they are. This can be disheartening to people who think the point of breathwork or meditation is to rid themselves of all thoughts — but that’s just not realistic. The mind is active, so you can’t actually make it stop thinking. Part of learning these techniques is to become aware of when your mind is wandering. 

• Focus on a word or mantra. So, what should you think? It can help to choose a phrase or a singular word to think about as you breathe. It’s the act of coming back to those anchors, as we call them, that helps to retrain the nervous system and the grooves in our brain and nervous system to create new patterns. Focusing on the breath count is always a good “thought”. 

• Practice five to 10 minutes a day. Practice doesn’t make perfect, but it sure does help. When you do breathwork on a regular basis, you retrain your nervous system so that it can go into that relaxation response much more easily in the future. 

 To hear more on this topic, listen to the Health Essentials Podcast episode,“Breathwork for Beginners.” 

 Five-finger breathing (requires the use of both hands) 

Five finger breathing a simple, powerful breathing technique that’s been shown to induce deep relaxation. Unlike other types of breathwork, this one is a multisensory practice, in addition to your breathing, also focus on the movement and sensation of one of your fingers slowly and intentionally tracing the other hand. 

To do it: place one hand on a flat surface use the other hand to trace the placed hand. 

Start at the base of the thumb and take in one deep breath (go slowly), when you get to the end of the breath you should be at the other edge of the thumb, repeat this as you trace each finger.

When you get to the end of the little finger reverse the tracing and breathing until you are back to the base of the thumb. When to try it: 

Some healthcare providers recommend that their patients do five-finger breathing before heading into surgery, as it’s thought to help your brain enter a state of deep relaxation and release endorphins- your body’s natural painkillers. 

Breathwork meditation 

Breathwork and meditation don’t always have to go together — but they can. If you hear the term “breathwork meditation” or “meditative breathwork,” they’re referring to combining elements of both practices. 

There are many different techniques for helping to calm the body and the mind. Both breathwork and meditation can serve as an interface between the body and the mind, and we can either separate them out or combine them. Body scan meditation (look for it on YouTube) for example, harnesses deep breathing and mindfulness to help you feel grounded, aware and connected to your body. When to try it: Do a body scan meditation during a difficult day to become more in tune with your body and how you’re feeling. 

When you do diaphragmatic breathing, you engage your diaphragm, a powerful muscle at the base of your lungs. Also known as abdominal breathing or belly breathing, this technique has been shown to help lower blood pressure and heart rate, and it’s especially beneficial for people with lung conditions. But anyone can do it — and it’s a good starting point for breathwork newbies because you can do it either sitting or lying down. Just focusing on your belly gently rising with your breath in and falling with your breath out is a great way to relax and relieve stress. When to try it: Honestly … any time! And practicing for just a few minutes a day will allow you to better tap into it in times of stress. 

Box breathing 

Box breathing is one of the simplest and most common forms of yogic deep breathing. Like a box, which has four sides, this technique has four steps: 

Four counts of breathing in, four counts of holding your breath, four counts of exhaling and four more counts of holding after your exhale. 

As you’re breathing and silently counting, you can calm the nervous system and anchor yourself into the present moment. 

When to try it: As one of the most accessible forms of breathwork, box breathing is another great anytime practice.

 4-7-8 breathing 

The 4-7-8 breathing technique can be done while sitting comfortably or lying down before bedtime. The numbers refer to how long you inhale (four counts), hold (seven counts) and exhale (eight counts.) This breathing pattern can help us focus our mind and our body away from worries and repetitive thoughts. 

When to try it: Who needs sheep? 4-7-8 breathing has been shown to help you get a good night’s sleep by calming the mind, reducing anxiety and decreasing heart rate and blood pressure 

 Understanding Laryngospasm 

Laryngospasm is a condition where the vocal cords suddenly tighten, blocking the airway and causing difficulty in breathing or speaking. 

This can last for about 20 to 60 seconds and can be triggered by various factors, including asthma, gastroesophageal reflux disease (GERD), or anxiety. 

Relief Techniques 

One effective method to relieve laryngospasm is by applying pressure to a specific point known as the laryngospasm notch. This technique can help relax the vocal cords and restore normal breathing. 

Location: The laryngospasm notch is situated just behind the earlobes and above the jaw. 

● How to Apply Pressure: 

○ Use your fingers to press inward and downward on this area. 

○ Ensure you apply firm pressure to stimulate relaxation of the vocal cords. 

Additional Relief Methods 

● Stay Calm: Remaining calm can help reduce the severity of the spasm. 

● Breathing Techniques: Breathing through a straw can slow down your breathing and help relax the vocal cords. 

● Seek Medical Attention: If symptoms persist or worsen, it is crucial to contact a healthcare provider. 

Conclusion Applying pressure to the laryngospasm notch is a practical and effective technique for relieving laryngospasm. Combining this with calm breathing can enhance the chances of quickly alleviating the symptoms. If laryngospasms occur frequently, consulting a healthcare professional is advisable to address any underlying conditions.  

To hear more on this topic, listen to the Health Essentials Podcast episode,“Breathwork for Beginners.” 

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