Life With ALS.com

+    Diagnosed Aug 2005

+     Bipap March 2007

+     PEG July 2007

+     Trache and Vent July 2008

Still Living, Loving & Laughing

There has been much talk about tending someone with a trache and vent. One who is in a wheelchair, can’t use their hands and can’t talk.

- Do you need someone to be awake 24/7 attending you?

- How does someone know when you need assistance?

- How do you communicate your needs when you can’t talk or use your hands?

There is much concern about the answer to these questions. Most medical people will tell you a completely different story than how I am going to answer those questions. They have not experienced living with a trache and vent so my responses are from someone who actually has.

- You do not need a person to be awake 24/7 to attend you. There are alarms on the vents that will wake anyone up if something goes wrong. There does have to be someone around at all times just in case but it is like house insurance, you purchase it just in case something happens, but how often do you make a claim?

- There are alarms on the vent that signal something needs attention. Like a high pressure alarm signalling a need to be suctioned. A low pressure alarm signalling that my air hose (circuit) has come off. We also have various ways for me to call my caregivers if I need some attention, like an itch or wipe my nose, etc.

- I have a talking program on my computers that allows me to call for something or if I just want to carry on a conversation with my wife, family or caregivers. There are pages on this site that explain how I use a computer and explain my talking program. (Computer use)  (Text-to-Speech program)

What I want to describe now is what we have done as far as calling devices. How I contact my caregivers. These are very simple devices but work extremely well.

1. The first device is a wireless doorbell, battery powered, they can be purchased for under $35.00 from Walmart. The reason for a battery powered one is two fold: We do not have to worry about a power outage. My caregiver can take it outside and not have to worry about where to plug it in. We have also installed a jack on the doorbell button so a large button switch can be plugged into it. This large button switch is mounted on my headrest and is easily activated by rolling my head sideways. This button is also used to activate several other devices by unplugging it and plugging it into something else.

2. The second device is a battery powered “screamer” which lets out an incredibly loud scream. The button on my headrest activates this as well. This is used if my caregiver is further away.

3. The third is my favourite. It is a 2 way radio which can be purchased for about another $35.00. They have a 16 mile range so there is no fear of the caregiver going out of range. We have a jack wired to the “CALL” button on the radio so we can plug in the button switch on my headrest. When I need something I roll my head to activate the switch, this sends a signal to the other radio and they know I need something. This is an excellent way to contact them because they can now talk to me and I can respond by activating the switch. As a standard: One beep, not urgent. Two beeps, a little more urgent. Three beeps, urgent. Like my vent alarm is going off.

We had a dear friend design and install a small circuit to the doorbell so when it goes off it activates a circuit that acts like pressing a switch. So we can plug the “screamer” or “2 way radios” into it for more range. The “screamer” is used the most in this combination because it provides an unmistakable sound if the caregivers are sitting on our deck. Sometimes the doorbell itself is not loud enough for outside use.

Here are some pictures of what everything looks like.

Added: Aug 19, 2010