Personal Emergency Response Systems

At last Tuesday's support group meeting, one of the issues that was raised was the safety of minimally disabled ALS patients who may be left in the home alone for a period of time during the day. This issue led to a discussion of personal emergency response systems (PERS) or medical alert devices. Many of these personal alarm systems stemmed as a response to the need by the elderly for the ability to live independently or by people with chronic illnesses who may experience life-threatening situations from heart attacks, fluctuations in their blood levels of important substances such as glucose, and the like.

A look at the Official Hawaiian Telcom Yellow Pages shows some vendors of these systems under "Medical Alarms." One of our members, Chester, uses "Lifeline Hawaii Services," which he claims provides reasonably priced services requiring only a landline connection and a one-time fee. A quick survey of online services also produced a few national vendors (eg. LifeStation.) No doubt, these systems are very important in keeping ALS patients and their caregivers confident of safety in the home, especially when the patient is alone. Some questions that need to be asked when thinking of using such a system include:

1. Are there different kinds/ways of activating the system by the patient? For example, aside from the usual pendant, devices which allow activation by people with limited hand/elbow/shoulder movement would be very helpful.

2. What is the range of activation? How far away from the receiver - phone or console - can the patient be and still be assured of generating an alarm?

3. Cost: Are there activation/installment fees? one-time payment or scheduled regular payments?

4. What happens when the alarm is activated? What constitutes a "response?" to help the patient?

5. How is/are the equipment maintained? Is there a battery back-up in case the power goes off?

While PERS are very important in the care of a person with ALS, it is also important to determine the point in the progression of the illness at which the PERS is no longer useful. For more information about these devices, check out the Federal Trade Commission site on PERS:

http://www.ftc.gov/bcp/edu/pubs/consumer/products/pro24.shtm

Looking Back: July 4th Fundraiser

July 4^th was a gorgeous day at Keehi Lagoon: the sun was hot but the breezes cooled those of us under the shade of a tree or canopy. It was meant to be that those of us who worked hard to get to this point would see the fruits of our labor.

In spite of the fact that we had less than a month to put everything in place, we were able to raise.... drumroll, please... over $3,000! After we get all pledges and tickets yet unpaid for, we will probably make it to $3,500 for ALS TDI research for a cure!!

MUCHOS MAJALOS!

• To everyone who made our first outdoor fundraiser become a FUN-raiser. From the food to the tug-of-war to the water balloons to the softball game to the raffle and ... everything in between.

• To everyone who cajoled, threatened, bribed, or simply, asked people they knew (or not) to give to a great cause!

To those who gave so generously of themselves, their hard-earned
money, their friendship, their resources, their time because they believed
















in our cause like we do; those who remain tirelessly our friends who extend their hands out to us in many ways, despite our looking to them for help in our many times of need...

• To those who labored to organize the entire enterprise from getting us involved in the nationwide campaign, to distributing the fliers and tickets, to collecting equipment for use, to putting together the program, to setting up the site, to unabashedly having fun ... in fact, everything that went before, during and after today...

To those who are our inspiration in the sidelines, whose lives are spent thriving despite the ugliness of the illness, who show us what it is to be truly brave, who are the faces, souls and bodies we all love despite the ravages of the disease...

To our families who love us to death

and whom we love back as passionately...

To the spirit in all of us which refuses to be vanquished by what we face everyday...

Today, we showed us who we are:

WE ARE GOOD THOUGHTS AND PRAYERS.

WE ARE PASSION AND COMPASSION.

WE ARE "AWESOME" PERSONIFIED.

WE ARE ALOHA.

WE ARE "TEAM."

Thanks to all those who volunteered, sold tickets, collected prizes, manned the food booth, set up/cleaned up, and helped make the 4th of July BBQ a successful event! We raised over $3,000 for ALS TDI! For those of you who couldn't make it, here's what you missed out on! Did anyone catch a glimpse of us on KHON Channel 2 doing the shaka?