LIFESTYLE

image of Tobi Dynavox eye gaze technology for ALS patients

EyeGaze Technology

Tobi Dynavox The eye gaze is a technology that synthesizes with your eye movements and allows you to type words with your eyes. It is a very useful tool if you lose the ability to speak or if it is difficult or painful to speak.

image of an ALS patient in motorized wheelchair

Motorized Wheelchair

A Motorized Wheelchair is excellent to generate a renewed feel of independence. You will be able to get around on your own without being dependent on those around you. And this way, if someone parks you facing a wall you can turn yourself around! 

image of an emergency button for an ALS patient

Emergency Button

An emergency button is a very good thing to have in case a PAL needs something urgent. The button we used is the SadoTech Model C Wireless Doorbell

image showing importance of a wheelchair accessible vehicle for ALS patients

Wheelchair Accessible Vehicle

For ease of transportation with a wheelchair. Our van manufacturer is BraunAbility

image of sleep number mattress helping ALS patient to have comfort when sleeping

Sleep Number Mattress

The Sleep Number Mattress has been our best friend the last few months.

an image of AVAP/BIPAP machine for person with ALS disease

AVAP/BIPAP

The AVAP/BIPAP Machine has been clinically shown to open up the chest cavity and allow for deeper breathing. Having this on at least 8 hours a day can have a significant effect on the prognosis of the disease.

image of Cough Assist to help ALS patient strengthen breathing and clear phlegm and mucus

COUGH ASSIST

The Cough Assist is aimed to exercise the coughing muscles such as the diaphragm to strengthen breathing and aid in clearing of phlem and mucus.

Lifestyle

FEEDING TUBE

The decision to get a feeding tube could be the best decision you make if made at the right time. Here are three reasons why you should consider one.

  1. In ALS you will have an unusually high metabolism since calories are needed to breakdown muscles.
  2. You will lose weight exponentially with a loss of muscle mass.
  3. It may become more and more tedious and frustrating to eat with the loss of swallowing function

Administering feeds:

  1. Bolus Feeds using gravity
  2. Feeding Pump

Types of feeds:

  1. Home-made blended feeds
  2. Preblended feeds

*Patients may get nauseous with heavy feeds in which case, the volume and density should be regulated*

an image of AVAP/BIPAP machine for person with ALS disease

Peg Tube Care Guidelines

Tube Feeding:

-Pump- If feeding done continuously over 24 hours, use Portable Pump
-If feeding done part of the day (cycle feeding), preferred feeding done at night while
you sleep.
Tube Feeding Schedule:
-Start Day 1 feeding with xx mL per hour over xx hours
-If by Day 4 the amount is comfortable, continue with Day 4 amount
-Feeding tubes in stomach: maximum rate in 140 mL/hr
-Before AND After feeding = Flush feeding tube with water (50 cc)
Tube Feeding Position:
-Sit UP during feeding
-In Bed: use a wedge pillow to prop yourself up at least 45 Degrees
-After Feeding sit UPRIGHT for 1 HR (to prevent formula entering lungs if you vomit)
Tube Feeding Instructions:
  1. Clean Hands
  2. Gather things in clean area
  3. Close Roller Clamp
  4. Wipe top of formula can with clean towel
  5. Pour amount of formula into feeding bag (max= 4 cans at a time or 1000 mL)
  6. If feeding run throughout day or night = pour 6-8 hours work of formula per feeding time
  7. Slowly OPEN roller clamp & allow formula to run through the tubing, THEN CLOSE the clamp (this gets air out of tubing)
  8. Draw amount of water needed (50 cc) on syringe and place it in the tube
  9. Unclamp feeding tube
  10. Flush feeding tube
  11. Reclamp feeding tube
  12. Disconnect Syringe
Important Tips:
–ALWAYS reclamp feeding tube before removing catheter tip syringe (to avoid leakage)
-Clamp feeding tube BETWEEN EACH syringe of formula (Prevent leakage)
-Move clamp (to avoid kinking of tube)
–ALWAYS flush feeding tube BEFORE AND AFTER feeding, medication or additional liquids (30 – 60 mL)
Taking Medication:
-Must be liquid or powder form (to prevent clogging)
–NO Enteric coated, Extended-release (XR), or Slow-release (SR) tablets or capsules must be given via feeding tube
-Do NOT mix different medications together
– Take 30 Minutes BEFORE eating: Omeprazole (Prilosec), Esomeprazole (Nexium), Lansoprazole (Prevacid)
–NOTE: liquid medications may contain SORBITOL (causes bloating, cramping, diarrhea IF not taken as directed)
Steps to Take Medication:
  1. Clean Hands
  2. Clean area
  3. Unclamp feeding tube
  4. Flush tube with 30-60 mL of water
  5. Clamp feeding tube
  6. Pour medication into cup
  7. Add 30 mL (1 oz.) of water into that cup
  8. Draw solution into syringe
  9. Attach syringe to feeding tube
  10. Unclamp tube and gently push in medication
  11. Reclamp tube
  12. Attach water (30-60 mL) to feeding tube
  13. Unclamp tube and flush thoroughly
  14. Reclamp BEFORE removing syringe
  15. NOTE: if water moves too SLOWLY, REPEAT flushing
  16. Wash ALL parts of the syringe and equipment with warm water
  17. Let supplies air Dry
 
Swimming:
-Can Use AquaGuard (impermeable dressing to cover) or Dry Pro’s PICC Line Protector and XeroSox (Waterproof Sleeve)
– Safe in well monitored private pool (not used by pets) and ocean (unpolluted)
-No Public pools (unless you know bacteria count), Lakes, Ponds, and Hot tubs
-No Swimming AFTER heavy rain