3rd Annual Hawaii ALS Yard Sale on August 15

Yes! We are on our third! Please be there!

WHAT: Genormous Yard Sale

WHERE: 244 Akiohala Street, Kailua (off of Keolu Dr. in Enchanted Lake area)

WHEN: This Saturday, 8 am to 2 pm. No early birds, please!

Lots of stuff, gently collected and sorted. Donated items came from families living with ALS and our ohana.

Proceeds go to our piggy bank to help with our needs and activities such as our Christmas party and cookies for our home-bound, and flowers for the hospitalized.

Neat, huh? So, shall we see you there?

On Lisa's Decision to be Taken off the Vent: Blackberry exchanges between two of her friends

at 8 pm last Wednesday night, many of Lisa's friends in the Ohana heeded her family's call to join them in spirit and thought while they pray for assistance as Lisa begins her journey back to her Maker. Lisa has decided to be taken off the vent on August 8. At 3 pm, Jane and Richard Yamaguchi will transport their beloved daughter, Lisa - our friend and inspiration - to Pali Momi Medical Center where her wishes will be executed.

From: Tracy Sherman
To: Divina Robillard

I can only wonder what Lisa must be thinking about the next\last few days. Very few people actually know the exact day they are leaving this life.

Sent via BlackBerry by AT&T


ReplyTo: Tracy Sherman
Sent: Aug 5, 2009 8:13 PM
Subject: Re: Gentle Reminder: Lisa

I know. I suppose there is peace in certainty. And if there is faith in God and in the hereafter, anticipation.

There is probably a feeling of control finally. Over the disease, I mean.

Ahh, life! If ever I go out the same way, I hope I have the strength to make the same decision. Or is it weakness from exhaustion that prods one to make it? I hope the former. But I will understand if the latter.

At least the good thing is that it makes us think, reflect, grow from just knowing her...

Thanks for these moments of reflection, my friend. I hope you and mom are doing well. Xoxo

Sent via BlackBerry by T-mobile

Thinking of Lisa

Please think of Lisa Yamaguchi tonight. She has decided to be taken off the ventilator this Saturday. My dad always had a soft spot in his heart for Lisa. We are thinking of you and your family during this difficult time.

The following was taken from a website created by many of Lisa's friends.

Written by The Manana Gang
Wednesday, 16 August 2006

Our Friend Lisa...

Is it possible to use words to illustrate the life of a great friend? Actions speak louder than words and when one thinks about our friend, Lisa Yamaguchi, the word service comes to mind. When the great American Thinker, Philosopher, and Writer of the early 1900’s Elbert Hubbard said, “One great, strong, unselfish soul in every community could actually redeem the world.” He was speaking of our friend.

Lisa graced the halls of Manana Elementary School in Pearl City during our fourth grade year, recently transferring from Alvah Scott Elementary in Aiea. The transition to her new school was smooth as she befriended six new classmates (Valerie Fujitani, Lisa Tamura, Lori Yamamoto, Kellie Inouye, Tracy Imagawa, and Julie Camarillo). Little did we all know that our friendship would span three decades, a multitude of boyfriends, eight marriages, a herd of kids, a gamut of career changes, the roller skating era, and a variety of interesting hair choices. Through it all, “the Manana Gang” has managed to rise above the diversity and remain close.

Graduating from Pearl City High School in 1985, Lisa went on to the University of Hawaii at Manoa where she completed a Bachelor of Arts degree in Sociology and Psychology which led her to a myriad of job opportunities in which her “…strong, unselfish soul…” was called into action.

Lisa worked at a Spouse Abuse Shelter, helping families rebuild their lives. She then moved on to becoming a Headstart Pre-school teacher for 10 years where educating our youngest population became her passion. Recently resigning from a one-year post as a YMCA outreach counselor at Waialua High School, Lisa listened with open ears, hands, and heart as teens turned to her for gentle, but loud affirmation that there is good in the world and one must always strive for that.

Our friend, Lisa Yamaguchi, was diagnosed with ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrig’s disease in March 2006. Physically, our friend is being imprisoned by this disease, but her mind and heart are still as sharp and warm as ever. Lisa has dedicated her pre-ALS life to helping “redeem” our world with her service to others. We hope that Lisa’s life of service will not have been done in vain as we all rally to help her live with the new challenges of her current conditions while we continue the unselfish path she has set before us.

Love always,
Julie, Tracy, Lisa, Kellie, Lori, and Valerie

Vi is "Still Running The Good Race" (A MidWeek Cover Story)

Did you know that Vi has completed 15 marathons, 5 Ultra Marathons, and 3 Ironman Triathalons?!

Check out the article in today's Midweek!

http://www.midweek.com/content/story/midweek_coverstory/vi_jones_medusky/

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?