LIFESTYLE
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.
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!
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
Wheelchair Accessible Vehicle
For ease of transportation with a wheelchair. Our van manufacturer is BraunAbility
Sleep Number Mattress
The Sleep Number Mattress has been our best friend the last few months.
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.
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.
- In ALS you will have an unusually high metabolism since calories are needed to breakdown muscles.
- You will lose weight exponentially with a loss of muscle mass.
- It may become more and more tedious and frustrating to eat with the loss of swallowing function
Administering feeds:
- Bolus Feeds using gravity
- Feeding Pump
Types of feeds:
- Home-made blended feeds
- Preblended feeds
*Patients may get nauseous with heavy feeds in which case, the volume and density should be regulated*
Peg Tube Care Guidelines
Tube Feeding:
- Clean Hands
- Gather things in clean area
- Close Roller Clamp
- Wipe top of formula can with clean towel
- Pour amount of formula into feeding bag (max= 4 cans at a time or 1000 mL)
- If feeding run throughout day or night = pour 6-8 hours work of formula per feeding time
- Slowly OPEN roller clamp & allow formula to run through the tubing, THEN CLOSE the clamp (this gets air out of tubing)
- Draw amount of water needed (50 cc) on syringe and place it in the tube
- Unclamp feeding tube
- Flush feeding tube
- Reclamp feeding tube
- Disconnect Syringe
- Clean Hands
- Clean area
- Unclamp feeding tube
- Flush tube with 30-60 mL of water
- Clamp feeding tube
- Pour medication into cup
- Add 30 mL (1 oz.) of water into that cup
- Draw solution into syringe
- Attach syringe to feeding tube
- Unclamp tube and gently push in medication
- Reclamp tube
- Attach water (30-60 mL) to feeding tube
- Unclamp tube and flush thoroughly
- Reclamp BEFORE removing syringe
- NOTE: if water moves too SLOWLY, REPEAT flushing
- Wash ALL parts of the syringe and equipment with warm water
- Let supplies air Dry