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?

At the Frontline for the July 4th Fundraiser

Email to Listserve 6.29.09

"Wow! That was a blast at Jen's baby shower, although a few of us were kind of lost (me, too...) at first. Sorry about the last minute change of venue because we learned of the "Dragonboats" event at Ala Moana Beach Park. We thought we would have problem with parking. In the process, we found a wonderful relatively quiet place to picnic which could become another regular spot.

As it was, it was a bigger group than I expected that came to give Jen and Justin's baby a warm welcome to the 3rd rock! There was tons of food and more aloha! Again, thanks, everyone, for the presents, the potluck dinner, the fun stories and most of all, the friendship that I know will take us through thick and thin.

It was unfortunate that Jodi couldn't come and join us. She had to work so we will have to find another time between July 8-12, to spend with Jodi before she moves to Seattle.

We welcome to our fold, Lance Wallace, Nicole's new hubby who led us in saying grace; also Chris and Kaipo Kahapea and their brood. We take you into our hearts; we hope you will feel the same about us.

And now..... drum roll.... the last few days before July 4!

1. SET-UP CREW: attn: George H, Chris Halsall, Chris Kahapea, Lance, Wayne, and many others who can help: Please be there at 9:30. We have canopies (so far, 3 small and 1 big); 10 tables, 40 chairs, grill, cylinders, etc.... to unload and set-up. Vi and ohana will be there to coordinate.
I cannot be there earlier than 11. My caregiver canceled on me so I have to take Britt along. Since I will be virtually useless to everybody but Britt, I am promoting myself to "supervisor" (Peter Principle). hahahaha.

2. FOOD: Nancy and Tami are getting us more donations. Audrey is lending us coolers and water dispensers. And gallons of thanks to Kellie Kau and Armie Burkhard for their donations of hotdogs and condiments.

3. PRIZES: There's plenty in our stash inc. a gently used surfboard! But please keep them coming. We have games and games galore so we need the prizes to reward the effort.

4. COUNTRY STORE: Pickled mangoes a-comin', thanks to Nancy's friend who donated more mangoes. Nicole, thanks for the brownies-from-scratch! ono-licious! Armie, thanks for saying "yes" to anchoring the store!

5. ENTERTAINMENT: Kathy "Awe'Connor" is keeping it close to the vest so I am intrigued... Anyone you know who has talent that needs to be displayed, please tell Kathy!

anything else I have missed????

oh yeah! HOW CAN I FORGET???

CKETSTICKETSTICKETSTICKETSTICKETSTICKETSTICKETSTICKE

To date, we have disposed of 305 tickets. We have 195 left to go. Friends, we can do this!!!!!! Please ask five of your best friends to help us sell - I have: Thanks to MJ Amundson, Nora Trias, Cora Soriano, Rose Zabanal and Kem Lowry.

Also thanks to Jennie's lovely "sisters": Patty Luke and Teri Wasano for helping us sell tickets.

My wonderful friends: I am proud of us: our dedication to our cause, our undying concern for our families that continue to be affected everyday by that awful illness, our commitment to making sure we find a cure to ALS so no more families will have to go through what we go through, and our friendship that allows us to share of ourselves unselfishly... May God bless us all as we share in His good work... Good night; tomorrow is another day of fun...xoxoxo"

July 4th: "BBQ 4 ALS" Fundraiser Flier

Jennifer Li Dotson's baby shower at Kaka'ako Park

We had a baby shower for Jennifer Li Dotson, and her husband Justin, at Kaka'ako Park.....There was lots of good food, good friends, and lots of baby gifts for baby Jade.

July 4th: "BBQ 4 ALS" Fundraiser

I have been "away" for a while. Blame it on Vi Jones-Medusky. She got wind of the nationwide Major League Baseball (MLB) project of setting up hundreds of barbedues around the nation to raise money for ALS research. This is in conjunction with the 70th anniversary of Lou Gehrig's announcement of his retiring from baseball in the old Yankee Stadium (see www.als.net/mlb/). Of course, we found giving money to ALS TDI to search for a cure a GRRRRREAT idea, so here we are, or will be on July 4th:

Keehi Lagoon Park Softball Field #2
11 am to 4 pm.

We will be:

• Sliding into 3rd base at the All-Star softball game
  
• Eating hotdogs/hamburgers/pcikled mangoes (drooling allowed at this point)
• Barbequing ono-licious stuff that belong to a grill
  
• Winning raffle prizes
• Spitting watermelon seeds into a bucket to win (more!) prizes
• Catching up with old and new friends
• Listening to Larry sing
• And, much, much more!

YOU could be doing the above, too. All you need is one of these:


It's a ticket that you can buy for $5.00 each and you are all set for the day. Just email divina@hawaii.edu for one (or a lot) or just be there on July 4th with your $$. Remember ALL proceeds go to ALS TDI.

More tomorrow... have to hit the sack and snooze!