ALS From Both Sides


Call Systems for ALS Patients


A major concern for ALS patients and their caregivers is finding a reliable method for the person with ALS to alert the caregiver that help is needed, especially when hand strength is weak and speech hard to understand. In that situation the best equipment uses a capability switch to trigger a chime or other sound. This requires equipment that is switch adapted.
A capability (ability, disability) switch is a easy to press button that attaches to equipment through a jack and cable. Capability switches are available from several online sites. Many configurations allow the best choice for whatever movement is still available in any part of the body as well as wheelchair or bed placement. A few examples:

A disability cell phone would seem to be a great solution, and some iPhones can be used with a capability switch but require speaking the name or number to be called so their use is limited with ALS. You also have to have the phone at eye level to see the menus and select the number to be called. It isn't clear if the phone can be set to automatically dial one specific number when the capability switch is pressed, rather than go through the menus.

Some people use a baby monitor. It doesn't requires any hand strength but does require a fairly strong voice or ability to make some sound, so it's use is also limited.

The most frequently used call button is a battery powered doorbell. The patient has the doorbell button and the caregiver has the "ding dong" chime sounder. This works well -- until the button becomes too hard to press. Popsicle sticks taped over the button can turn it from finger control to a hand grasp, but this also becomes a problem as weakness progresses. In the past it was easy to adapt a doorbell to use a capability switch instead of the doorbell button to trigger the doorbell chime. Today's doorbell kits use lithium coin sized batteries which can't be adapted to use a capability switch.

There are few disability equipment providers that adapt their call systems for capability switch use! However, you can find a call system with a transmitter that is battery powered by A. AAA, C, or D batteries, adapting it yourself is easy. (It doesn't matter what batteries the reciever uses.) Instructions are included for the call systems I have included here.

Options

I have searched the Internet for hours, looking for call systems that are already capability switch adapted or have the right batteries to allow them to be converted to a capability switch. I am showing only wireless models that the caregiver can carry with them. Alarms that only sound in the room with the person with ALS don't allow the caregiver much freedom to move around the house. Note that none of the listed call systems include the capability switch in the listed price and none of the pictures show the capability switch attached to the transmitter.



Vibrating Personal Pager

$61.95 adaptivetechsolutions

Pros and cons:

  • Adapted for capability so set up is easy.
  • No monthly charge for service.
  • 100 ft. range indoors.
  • vibrates or chimes
  • Requires 1 12-volt battery (included).
  • Receiver has a belt clip and table stand. Transmitter has a lanyard
  • Batteries can run down and cause it to fail.
  • Requires 2 "AAA" batteries (not included)
  • Capability switch not included.



Wireless Attendant Call Button Alert Chime

$42.53
This item is currently out of stock. adaptivetechsolutions

Pros and cons:

  • Adapted for capability so set up is easy.
  • No monthly charge for service.
  • 75 foot range indoors.
  • Variety of chime sounds with adjustable volume.
  • Requires 1 12-volt battery (included).
  • Batteries can run down and cause it to fail.
  • All units share the same frequency, so it is best not to use them within range of one another.
  • Requires 2 "AAA" batteries (not included)
  • Capability switch not included.



X-10 Plug in Doorbell Call System

Pros and cons:

$45 $38 X-10 or Amazon

  • No monthly charge for service.
  • The caregiver doesn't have to remember to carry the chime. The chime can be plugged into an outlet in any room.
  • Additional chimes can be plugged into outlets in other rooms, patio or porch, on the household wiring for full house and some outdoor coverage.
  • Set up requires adding a connection for a capability switch but is still easy.
  • Chime only, no vibrate.
  • Batteries can run down and cause it to fail.
  • Will not work in a power outage.
  • Capability switch not included.

To convert for use with a capability switch, you need:
  1. HR12A PalmPad Remote Control ($20). This remote control is overkill for the single chime we need, but X-10's smaller remotes use lithium batteries which won't work with a capability switch.
  2. 4 AAA batteries for the PalmPad Remote Control.
  3. Battery Interrupter ($13 at Adaptive Tech) A battery interrupter is a small copper disc wired to a female jack. Battery interrupters come in two sizes, small for AA and AAA battery devices and larger for C and D battery devices. This remote control requires the smaller size.
  4. SC546A Remote Chime ($25) The chime plugs directly into any outlet. Extra chime units can be added in more rooms.
  5. Capability switch.
  6. Triangle file.


Open the battery compartment of the PalmPad Remote Control and place the disc of the battery interrupter between a battery and its contact point. (Take the battery out and put it back in place as you insert the battery interrupter.) If the disc is too large for the compartment, use a scissors or nippers on the edges to shape it to fit.

Use the three cornered file to cut a groove in the battery compartment lid for the battery interrupter wire so that the compartment can be closed.

Press one of the buttons on the PalmPad Remote control to ON. The battery interrupter has a 1/8" plug on the end. Insert the 1/8" jack of the capability switch into it. This Video from Enabling Devices shows the easy steps.

Set the number dial on both the PalmPad Remote Control and the Remote Chime to the same number. Plug the Remote Chime into any household outlet. Press the capability switch to make the Remote Chime sound. To add chimes in other rooms, set the number to match and plug into a wall outlet. If interference causes chiming without pressing the capability switch, try changing the numbers on the PalmPad and the Remote Chimes to another set of matching numbers.


Added Range Call Systems


Increasing the range of a call system has definite advantages for reasonably stable patients. The caregiver can be free to go outside to do lawn work, gardening, walk the dog, visit with neighbors. Neighbors can take the pager and stay at home while being available quickly. The likelihood of the need for an immediate response may keep the caregiver within a minute or two from home, but aside from severe, sudden respiratory problems, many PALS, especially in earlier stages, can rely on a longer range call system. A longer distance comes at a higher price, however, because it requires a true paging system. These are the ones used by resturants, hospitals, and other places where customers may have to wait a long time and a pager allows them to leave the waiting area.

LRS manufactures many types of paging systems with no monthly charge for service. The LRS website offers very little about the various systems, and you have to request prices. Go to foodsoftware.com instead for complete information, prices, ordering, and support.


ARCT PT01 Pager System Butler XP Any transmitter's range is reduced by being in or near concrete or steel structures, steel and sheet metal cabinets. shelves, etc. For the best range, place transmitter in front of a window. (Extension jack cables are available in many lengths.)
These transmitter can send only one pre-programmed message but even that isn't necessary. Who else would be paging your caregiver?
The range of these transmitters can't be increased with an antenna, and "repeaters" would need to be plugged in at neighboring houses to work.
Transmitter and pager $149.95 Transmitter and pager $199.95
Up to 1,000 feet (1/5mile) Up to 1,320 feet (1/4 mile)
Large button Smaller button
Beep or vibrate Beep or vibrate
Low battery indicator Low battery indicator
Belt clip Belt clip
  Higher price due to additional

options not usable for ALS


To convert for use with a capability switch, you need:

  1. ARCT PT01 Pager System or Butler XP Pager System
  2. Batteries, 2 AA, and 1 AAA.
  3. Battery Interrupter ($13 at Adaptive Tech) A battery interrupter is a small copper disc wired to a female jack. Battery interrupters come in two sizes, small for AA and AAA battery devices and larger for C and D battery devices.
  4. Capability switch.
  5. 3 sided triangle file

Open the battery compartment of the transmitter and place the disc of the battery interrupter between a battery and its contact point. (Take the battery out and put it back in place as you insert the battery interrupter.) If the disc is too large for the compartment use a scissors or nippers on the edges to shape it to fit.

Use the three cornered file to cut a notch in the battery compartment lid for the battery interrupter wire so that the compartment can be closed.

The battery interrupter has a 1/8" plug on the end. Insert the 1/8" jack of the capability switch into it. (If you have an older capability switch, it may be a 1/4" jack and you will need an adapter to attach it to the 1/8" battery interrupter.)

This Video from Enabling Devices shows the easy steps.

Place the capability switch button anywhere it can be pressed. Although it is the most expensive, I really like the Ultimate Switch. The gooseneck and clamp allow positioning it right where it is easiest to press and it will work until the person has lost all possible movement.


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