Common ALS Side Effects

Energy Conservation and ALS

Modifying the way you do everyday activities can help you have more energy for the things that matter most.

When living with ALS, everyday activities like bathing, dressing, grooming, and eating can use a lot of energy. The physical and occupational therapists at your ALS Clinic or home health agency can suggest strategies and recommend assistive devices that can help you conserve energy so you can continue to do the things that are most important to you.

​Physical and occupational therapists often use the analogy that you begin each day with a full tank of gas (or charged battery), and that you will need to decide how you want to spend that energy. Understanding that your energy level may be different each day, it can be helpful to begin by reflecting on your priorities. How do you want to spend your energy? What is most important to you?

If you notice that certain daily activities like dressing​ or grooming are taking longer or requiring more energy, you can ask your caregiver for assistance. If you find that some nonessential activities require a significant amount of energy, you can choose to not do them at all, or ask for assistance. For the things that you really want to do, you can try to find more efficient ways to do them. The idea is to work smarter, not harder.

​In addition to prioritizing, it is important to be mindful of your typical energy levels when planning future activities. Try to be realistic about how much you can do in a day without overexerting yourself. Try to schedule time for naps and rest so you can recharge between activities as well as between busy days.

Energy Conservation Strategies and Devices

One way that you can save energy every day is to sit instead of stand when doing things like dressing, bathing, and grooming. Once seated, position yourself so you can rest your arms or elbows on the table, desk, or counter for support. If you are able to sit on a seat where your hips are higher than your knees, it will require less effort to move between seated and standing positions.

If you notice that you’re getting more tired when walking, you can use walking aids for greater support and endurance. For longer distances, you can save energy by using manual or transport wheelchairs.

You can also conserve energy by developing systems and thinking ahead about what you will need to carry or move around your home. To limit unnecessary trips up and down stairs, for example, you could put things in a basket that will need to go up or down at a later time. It can also be helpful to keep the main things you will need throughout the day in a bag or pouch on your walker or wheelchair.

​Transferring between your bed, wheelchair, chairs, recliner, and other locations can use up a lot of your energy. Your physical and occupational therapists can teach you transfer strategies and recommend transfer devices that can help you move from place to place more efficiently and safely. Also, when possible, try to think ahead so you can avoid any unnecessary transfers.

​If your neck muscles are getting weaker and you are finding it hard to hold your head up, a neck brace, or cervical collar, can help support the weight of your head. You can also try positioning yourself in a way that takes the load off your neck muscles, such as tilting back in a lift chair recliner while using a U-shaped travel pillow to support your head.

​You can also put the things you use most often in places that are easily accessible to you. This may mean reorganizing drawers and shelves and leaving some things out on the bathroom counter.

Rejuvenating with Breathing Support

As the disease progresses and the muscles around your diaphragm weaken, you may notice that you have more trouble breathing at night while lying down. Using a bilevel machine (commonly called a BiPAP) at night can help you breathe better, sleep better, and have more energy the following day. You can also use a bilevel (BiPAP) machine intermittently during the day to rejuvenate and give your diaphragm a rest.

​Your respiratory therapist should be monitoring your breathing and recommending specific respiratory devices as you need them.

Finding Ways to Recharge

It is also important to find ways to manage and boost your energy level. In addition to recharging by taking naps and breaks and using a bilevel machine, getting a good night’s sleep can improve your mood and give you more energy for the day.

Making sure you are consuming enough calories every day, which can be challenging for people living with ALS, is very important. Your dietitian, speech language pathologist, and occupational therapist can recommend strategies and devices that can help your body get the calories and energy it needs.

In general, whenever you feel the need to recharge, remember that it is okay to reschedule or change plans, modify your activities, delegate tasks, and ask for assistance.

© 2024-2025 Your ALS Guide

Secretion Management

When there is bulbar involvement in ALS affecting speech and swallowing, it is common to have trouble managing saliva and phlegm. Saliva is the watery fluid in your mouth that aids in digestion and phlegm is the thicker substance in the back of your throat that is generated by the respiratory system. With ALS you are not making more saliva and phlegm; rather, the mechanisms to swallow or cough the secretions up are not working and so they accumulate.

Managing Excessive Saliva

If extra saliva is minimal, have a tissue or handkerchief handy to catch any excess.

Medications:
There are a number of medications that decrease saliva and dry up your mouth. When prescribed for other conditions they cause dryness, which is usually an unwelcomed side effect. When prescribed in low doses, we get the benefit of this side effect! The effectiveness can be different for each person, so it is not uncommon to have to try several different medications or to use a combination of medications. There may be additional side effects which can include constipation, thickening of secretions, dizziness, and decreased sweating.

• Amitriptyline: An old antidepressant and sleeping medication taken at night; prescribed in tiny doses for ALS patients to dry up saliva. It can also facilitate sleep and help with depression/anxiety. The drying effects usually last all day, though the sedation is most significant at night. Effective doses range from 10-50mg, and pills can be crushed. We recommend starting at the lowest dose and slowly increasing as needed.
• Atropine Drops: (1% ophthalmic solution): Commonly used as an eye drop to treat glaucoma. When the drops are placed under the tongue, they dry the mouth for a few hours (a useful option if desire is for as needed relief). The drops taste bitter but generally have less side effects than other oral medications.
• Hyoscyamine: Used to treat a variety of gastrointestinal problems such as irritable bowel syndrome. Tablets are 0.125mg and you can take 1-2 every four hours. Tablets can be crushed.
• Glycopyrrolate (Robinul): Come as 1mg tablets and can be crushed. Dose ranges from 1/2mg twice a day to 1mg six times a day.
• Scopalamine (Transderm Scop): These patches are generally prescribed for treatment of motion sickness and so insurance will often not cover them. Patches are changed every three days.
• Myobloc: If medications are poorly tolerated or ineffective, Myobloc injections can be performed. Myobloc is a form of Botox. It can be injected into the salivary glands (such as the parotid and submandibular glands that make saliva). The injections are with a tiny needle into the side of the face in front of the ear and under the jaw. It usually takes about 7-10 days to start working and can last up to 3 months. Risks of this treatment includes excessive mouth dryness or facial muscle weakness (rare).

Managing Thick and Excessive Phlegm

The following strategies help thin the phlegm, making it easier to cough up and clear:

• Drink pineapple and papaya juice, which can thin the phlegm
• Increase hydration
• Guaifenesin (Mucinex): This over-the-counter medication thins the phlegm. It is essentially nontoxic and does not interact with other drugs. Be sure to check with a pharmacist to make sure you do not purchase a combination cough and cold medication. It often comes with dextromethorphan which should be avoided. Take up to 400mg every 4 hours. It can be purchased in a liquid or pill form. It also can be taken as an extended release medication which cannot be crushed and put through the feeding tube (1200mg twice a day)
• N-Acetylcysteine: This is an over-the-counter supplement. The dose is 600mg twice a day.
• Nebulizer Solutions: With the use a nebulizer machine, nebulizer solutions (either saline, albuterol or n-acetylcysteine) are used to thin phlegm

Equipment to help remove excessive saliva and phlegm

• Suction: This unit comes with a suction catheter (like what you use at a dentist’s office) to remove saliva/phlegm from the mouth. There are portable and stationary suctions units. The stationary version is more powerful. There are also suction toothbrushes that can be used with this device when brushing your teeth.
• Cough assist: This is a machine that facilitates clearing of secretions. It gradually gives you a big breath in and then rapidly reverses the pressure to create a stronger and more effective cough. It also helps expand the lungs to keep them elastic.
• Nebulizers are devices for producing a fine spray of liquid medicine that can be inhaled. Different options include saline, albuterol, and N-acetylcysteine. Nebulizers work by thinning phlegm so it is easier to move it out of the lungs.

Other considerations:

Dry Mouth:
Believe it or not, dry mouth can also be a problem in ALS. This usually occurs because of facial muscle weakness and a tendency for the mouth to fall open, particularly at night. Treatments include over-the-counter Biotene mouth products (spray, gel, or rinse), and air humidification.

Mouth Care:
When the tongue is not moving normally and saliva management is abnormal, it is possible to develop some seriously bad breath (halitosis). Bacteria or yeast can also build up, causing a white coating on the tongue. This is commonly called thrush. These build ups are difficult to get rid of. Treatment can help temporarily, but it frequently returns. Nystatin mouth wash can help. There is also a more potent medication called fluconazole (Diflucan). Talk to our team about what is recommended for your situation. Other helpful tips include brushing your teeth and tongue three times a day, avoiding sugar and yeast-containing foods, and stopping smoking. Rinse your mouth after using inhalers or nasal sprays.

Providence ALS Center

Updated 3.14.23

Tips for Constipation

Constipation can be aggravating, miserable, and painful. It can result from a number of factors. It may be harder to drink fluids or eat enough fruits and vegetables. It may be harder to exercise. Some medications may lead to constipation, especially narcotics for pain and medications to reduce excessive saliva. In addition, ALS weakens your abdominal muscles, making it harder to bear down to move your bowels. It is extremely important not to let constipation get away from you!
Following are recommendations for managing constipation. Please note that each person is a little different and you may have to try different strategies to find what works exactly for you. The interventions listed below go in order – start at the top. Do not skip! Keep in mind that over time, you may need to develop a maintenance plan to keep you regular and out of trouble. If you are taking PEG feedings or have GI issues such as Irritable Bowel Syndrome, let our dietary and nursing team provide additional recommendations. Everyone is advised to call our office for help.

1. Fluids, fluids, fluids! This is one of the most important things you can do to prevent constipation. Consume at least 8 cups of fluid daily. This does not include caffeinated beverages.
2. Bathrooming: Try to go to the bathroom after meals, particularly after breakfast. Colon motility is highest in the morning, so take advantage of nature.
3. Increase fiber intake:
   • Aim for several servings of fiber at every meal.
   •  Fruits are good for you and work wonders. Prunes are especially helpful, and can taste good if prepared well. See attached recipes. Consider fruits that have both fiber and natural sugar (sorbitol and fructose), including apples, peaches, pears, plums, cherries, raisins, grapes, and prunes.
   • Vegetables are great. Dark, leafy greens and kale add a lot of fiber and are high in nutrients.
   • Whole grains and whole grain cereal products are always preferred over anything processed. Raw bran (2-6 Tbsp) can be sprinkled on anything from toast to yogurt, and should be followed by 8 oz of beverages.
   • Chia Seeds: 2-3 Tbsp per day sprinkled on cereal, salads, or mixed in yogurt, pudding, or applesauce. Do not put in feeding tube as it may clog tube.
   • Canned and cooked products can be used for a softer texture.
4. Bulk forming laxatives: Metamucil, Citrucel, Fibercon, and Benefiber absorb water and increase fecal mass. Metamucil may work better than others but must be taken quickly before it turns thickens and becomes undrinkable. For this reason, it should never be administered in a feeding tube. Benefiber has the advantage of being grit-free, taste-free, and non-thickening. Note that effectiveness can be inconsistent with these products, working better for some people than others.
5. Osmotic laxatives: These work by drawing water into the bowel to soften stools.
   •  Miralax: Gentle and without side effects. Taste-free, dissolves easily in liquid. Take 1 dose (1 capful) daily. Try this first.
   • Milk of Magnesia: 2 Tbsp at bedtime as needed. For short term, occasional use only.
6. Stimulant laxatives: We don’t recommend regular use of Senna or oral dulcolax, as they alter the electrolyte transport in the intestinal lining. Diarrhea and abdominal pain can be common, and daily use can cause other medical issues.
7. Dulcolax suppository: Works within 15-60 minutes for predictable relief. Use every 3 days if needed in addition to other strategies above.

GET REGULAR! STAY REGULAR!

Helpful Recipes 

Prunes really work! They are high in dietary fiber, potassium, and vitamins A and K. They also contain sorbitol, a natural and sweet laxative. Here are some recipes to enjoy.

No Frills

• Buy plain prune juice and warm it up!

“Plum” Pudding

• Mix equal parts of finely chopped prunes, prune juice, applesauce, and bran
• Store in refrigerator
• Take 2 Tbsp. with each meal and at bedtime

Prune Passion Cocktail

• ½ c. applesauce
• 2 Tbsp. unprocessed miller’s wheat bran
• 4 - 6 oz prune juice
• Drink 1 Tbsp daily, increase as needed

Cannonballs

• Mix equal parts of chopped raisins, dates, and senna power
• Form into balls, about the size of a meatball
• Eat 1 at bedtime

Paradise Pâté

• 4 oz. Senna tea leaves
• 2 c. water
• 1 lb prunes
• 1 lb raisins
• 1 lb dried figs
• 1 c lemon juice
• ½ c brown sugar
  • Place all ingredients except sugar in pan
  • Boil x 5 mins. Remove from heat and add sugar.
  • Cool. Process in mixer or food processor until mixture is a smooth paste.
  • Freeze and take out daily dose (doesn’t freeze solid). Take 1-2 Tbsp daily. Eat plain, spread on toast, or put in hot water for a drink

Updated 11.7.17
Providence ALS Center

Condom Catheters

What is a condom catheter?

A condom catheter is a rubber sheath that is put over your penis. The condom is attached to a tube. Urine drains through the tube and into a drainage bag. A condom catheter drains your urine without putting a catheter into your bladder through your penis.

What should I know about using a condom catheter?

Condom catheters are made of several different materials. Do not use a latex catheter if you are allergic to latex. Different types of condom catheters attach to your penis in different ways. Some catheters have a Velcro attachment, and other catheters attach with medical tape. Do not use adhesive tape. Always use the condom catheter as directed.

How do I put on the condom catheter?

•  Wash your hands and your penis with soap and water. Rinse and dry your penis carefully.
• Inspect your penis to make sure it does not have any broken or reddened skin.
• Gently roll the condom over your penis. Leave 1 to 2 inches of the condom catheter at the end of your penis.
• Wrap the sheath holder around the condom at the base of your penis. Do not wrap the sheath holder too tightly because this may stop blood from going to your penis.
• Connect the condom catheter to the tube of the urine bag.
• If you are using a small leg bag, use the catheter leg strap that came with your kit to secure the urine bag to your leg just below your knee. Leave some slack in the tube so the catheter will not be pulled when you move your leg.
• If you are using your condom catheter at night, attach the catheter to the bedsheet with a safety pin. Make sure the safety pin goes around the tube and not through it.
• The urine collection bag must be placed so that your urine flows downward. If you are in bed, you may attach the collection bag to your bed under the mattress. If you are sitting in a chair, you may attach the urine bag to the chair below the cushion you sit on.

How can I help prevent an infection?

• Use a new condom catheter every day.
• Wash your hands with soap and water before and after doing catheter care.
  Remove the condom catheter and wash your penis at least once a day.
• Clean your urine bag with soap and water at least once a week if you reuse it.
• Empty the urine bag when it is ⅔ full. If you have a full sized bag, empty it every 8 hours. If you have a smaller leg bag, empty it every 3 to 4 hours. Follow these steps when emptying your urine bag
  • Place a large container on the floor or hold the urine bag over the toilet.
  • Without touching the tip, remove the drain spout from its sleeve at the bottom of the urine bag. Open the slide valve on the spout.
  • Let the urine flow out of the urine bag into the container or toilet. Do not let the drain tube touch anything
  • Close the slide valve and put the drain spout into its sleeve at the bottom of the urine bag.

When should I contact my healthcare provider?

• Your penis becomes red, purple, or swollen.
• Your urine is thick, cloudy, or has mucus in it.
• Your urine looks pink or red.
• Your urine has a strong smell.
• You have pain or burning in your urethra, bladder, or abdomen.
• You have shaking chills, or your temperature is over 101° F (38.3° C).
• You have questions or concerns about your condition or care.

Where to purchase ALS Toileting Devices - Click Here!