"Not Your Average Mail" from Nicole and Lance Wallace

Hawaii ALS is supported by folks like Nicole and Lance. We are showing them our appreciation of their support by making sure their fledgling step into the business world is steady with our encouragement.

Nicole was one of the original "cast of characters" who made up what was also the fledgling MDA ALS Support Group almost ten years ago. Her mom, Judy Birt, was diagnosed with ALS. Nicole and sister Maile took turns taking feisty Judy to our meeting place in Pali Momi. The Birt family, particularly Nicole who still lived with her parents at that time, was hands-on involved in the care of their mom. Judy was blessed with such a great brood! When Judy died, soon to be followed by dad Joe, Nicole was ready to move on and fall in love. In May this year, she and Lance, of the tartan and Braveheart lineage, wed in true Scottish fashion! (Tami and I attended the beautiful ceremony!)





Shortly after starting work here on Oahu as a mechanic, Lance was laid off, thanks to downsizing. He and Nicole then planned their own copy center. Last week, Nicole joined him fulltime in this exciting venture for this lovely young couple. This is Nicole's announcement of their new undertaking.


Aloha!

This is Nicole (Birt) Wallace. My mother, Judith Birt, had ALS. Over the years I have gotten to know many of the support group members and O’hana. I also have continued to support group activities such as attending Christmas parties and helping out at fundraisers.

After 20 years in the copy business, my husband, Lance, and I have opened up our own company in Ewa Beach. It is called Not Your Average Mail. We are a complete copy and shipping center: from basic self-serve copying to designing, printing and finishing in black and white or color. Our store also offers mailbox rentals, key duplication, passport photos, binding, laminating, rubber stamps, invitations, labels, office supplies, greeting cards, legal forms, packing supplies, folding, cutting, etc. Basically if there is something you need, we will find a way to get it done for you.







As a special offer to all my friends associated with the Hawaii ALS support group, Muscular Dystrophy Association and the UP Alumni Association, I will give you a 10% discount on our services. I will give you the best deal possible! If you get a written quote from another company, I will meet it or beat it! We will even find a way to get your order delivered to you if the need arises.

Not Your Average Mail is more than a small business center. It is locally owned: I was born and raised on Oahu and have 20 years of experience in this industry. Not Your Average Mail is committed to our customers’ needs – providing high quality copying and shipping services, along with a memorable customer experience. We even offer curbside service for our special customers – YOU! Not Your Average Mail is dedicated to serving the State of Hawaii. Remember, we are locally owned and operated – from Hawaii and for Hawaii.

Mahalo for your business! And please spread the word around…Not Your Average Mail is here to serve! For detailed information about our store and services, please visit our website: http://www.notyouraveragemail.com

Accessible Van Referral Info from Tracy Sherman

Here's some additional information on accessible van resources from Tracy Sherman. She and Mom Nancy have recently bought an accessible van directly from a mainland distributor - another option that some people may want to choose.



Hi Miss Divina!!

It was great to see you and everyone Tuesday night. I know mom enjoyed it as well but it really tired her out. I'm proud how well she hung in there. That is the longest time she has been out of bed since she got her trache put in in July.



I wanted to pass along some information now that we have our van and are very happy with it. If anyone in the group is looking, or might be looking in the near future for a van, they should try:

The Ability Center
4797 Ruffner Street
San Diego, CA 92111



Our contact there is Terry Aycock. He worked very hard to get us what we wanted and gave us a very fair price for it. Here is his contact information: taycock@abilitycenter.com (760)533-7783<--his cell number.

The shipping cost was $1074 and the van arrived earlier than anticipated. All the paper work needed was in the van when we got it. Here are a couple pictures of the van.







We went this route because we were tired of waiting for an optimal van to show up on craig'slist. This is not to discount what might be found on one of the other islands. I just shy away from buying from an individual because all the safety inspections are then up to me. The Ability Center takes care of all that for you. They provide a Car Fax report and fix anything that needs to be fixed before you get it.

He also hooked us up with Albert at Alii Adaptive Equipment (and I forgot to hand out his cards - dang it!). At no charge, he showed us how to use the tie downs correctly and safety tips for the ramp. He is also a good source to talk to before deciding on a van based on your specific needs. (808)676-3816 Cell (808)323-7956. He is a night bird so reaching him in the afternoon is probably best.

Anyway....Terry said any referrals he receives from us, he'll send us a $50 check which we will donate to our ALS fund.

We hope this information is helpful to at least one person, if you wouldn't mind passing it along to the group. I am also willing to talk to anyone about our experience if they want more detailed info.

Mahalos and love U!

Tracy and Nancy Sherman
Home: (808)672-0507; Cell (949)436-0040; Fax (808)356-0602; Email: TRLESH@YAHOO.COM

Where has October gone? Part Deux

RAMP VAN RESOURCES

I got to talk with two important ramp van resources on island who can help with our transportation needs:

1. Albert Amiott of Ali'i Adaptive Equipment (albjoe@hotmail.com; work: 676-3816; cell: 232-7956) - ALbert is an adaptive equipment installer who works with van conversion companies in the mainland. Basically, he puts the finishing (and most important) touches to your van. This service is vital in the islands because as many of us know, there is no conversion service in Hawaii! For newly converted vans, one must look to purchase in the mainland, have it converted by, for example, Braun,and have it shipped to Oahu. Albert puts in whatever accessories come with the conversion, eg, automatic wheelchair clocks and delivers the van to you. Aside from this important service, he does the initial assessment (much like the fitting for a new wheelchair) before he advises you on the best route to take, eg. which van conversion is best suited to your needs. According to Albert, it takes a wide range of 2 weeks to 5 months from ordering to arrival of van in Hawaii, depending on the accessories the van requires. The average cost of a new Rollx converted van is $42,000 while a used one would cost in the mid-$20,000's.

2. Judy Heller of Access Aloha Hawaii (www.accessaloha.com; phone: 429-4560) - Judy provides converted van rentals. The cost depends on the number of days rental, with 2-3 days at $502, all inclusive.

Having scouted for the above information, let's proceed to the last reason why October just whizzed by like someone needing to answer nature's call FAST!

FRIENDS ARRIVE

We, in Hawaii, get visited a lot, one reason we are lucky we live Hawaii, especially to folks like us to whom arranging travel outside the home is like plotting a rocket launch, without NASA! So when Britt's longtime friend from UCLA, Karen Ito, fulltime professor and parttime caregiver to her husband who has Alzheimer's, breezed into town, it was definitely a reason to chart trips to museums and dinners with the family.

Meet my friend, Karen, from UCLA.

She took this picture of Diamond Head up in Tantalus when we made a wrong turn off of Makiki Street in search of the Contemporary Museum!. We had a fun drive, tho!



In the second week of Karen's visit, my pal from college, Sokie Roman-Dinglasan and hubby, Jimmy, came to visit, too! It was also around this time that my once trusty steed, DA CARAVAN, decided to cough and screech. Despite the van problems, Sokie, Jimmy and I had a great time reminiscing with our co-UP'ians at a picnic under the stars in our backyard and a lovely dinner at John Dominis.






So. Is it any wonder why my usually steady neural circuitry suffered a short? Well, the Trusty Steed is still in Windward Dodge but notice I already have November plotted on the right? Hah! I am on the rebound and ready for November! Are you?

Where has October gone?

It's almost the end of October. I didn't forget to make an October calendar of events, like I have for all the previous months of the year. It just went by so fast and now, at the edge of the third week, the fourth Thursday of the month, i think it is time to look back. Let me see why October streaked by like a speedskater on ice:

OKTOBERFEST WITH CHESTER

It started with Bruddah Chester Kahapea, taking Nancy, Tammie and me to the Oktoberfest celebration at Hale Koa, along with his friends who have made this a ritual over the years. It must have been the great fun we had: pitchers of beer, champagne, chardonnay, stronger stuff that you get in tiny cups and quaffed with a dozen other kindred folk in various hues of redness and degree of joviality! Since I volunteered to be the designated driver, I had fun watching these transformations. I also concluded that the Germans may not have the greatest cuisine but they sure know how to party. Herr Leader of the Grand March around the room had more people trailing him as the evening ripened. Dancing the polka (here with Nancy) and the "chicken dance" was the most fun! Thank you, Chester, for inviting us and we will surely join you again next Oktoberfest!

Here's us in merry revelry:





SUPPORT GROUP MEETING

Boy, we were soooo glad we didn't have to picnic it this month! Although we had a fantastic time, sitting on the greens by the hospital, feasting on the potluck dishes the Mahis, the Fujinos and our newbies, Walter and Sylvia Tanaka brought! Thank heavens we caught Jan Medusky on his way to the QCC and special thanks to Penny Chun who came by to drop off the photo album she assembled of our August yard sale! Look at our pictures from last month's "picnic meeting"!




So, this month, we had two "new" families - the Tanakas and Kathy Mason representing her mom, Mrs. Esposito - at this meeting so we all took turns giving our best shot at their questions. The questions have remained the same over all these years reflecting the similar, and familiar, sources of anxiety that seem to plague all newly diagnosed families: caregiving issues, comparing doctors and their compassion/understanding index, what community resources are out there, etc. I was reminded of my own dizzying confusion when I was at that stage many years ago. Every time we have new folks at our doorstep, I am glad that we have a resource such as our support group with our many die-hard volunteers such as Nancy and Tammie Fujino, Dale and Paul Mahi, Tanya Mau-Halsall, and now Mary Valenti and many, many more who come back, month after month, generously sharing of their insights and knowledge.

Much mahalo, one and all!

VAN DEMONS

Our van conked out on us two (yes, two!!!) times this month. Britt said it is showing its pedigree: American and, I said, its age. It is a 2001 Dodge Grand Caravan and it has given us great service over the years. Perhaps it is in its last legs, or more appropriately, its last tires. But we hope it will be around some more!

Meanwhile, who so generously loaned us their van so Britt can go to work without having to rent a van? None other than the Medusky's! Muchos majalos to both our angels, Jan and Vi! Otherwise, I would have called on favorite folks, Adrian and Russell, co-owners of Five Star Transcare (808-456-8457) who provide prompt, careful and friendly curb to curb service for a fee. They can bill your insurance, too, if their service is covered.

Van troubles are part of having to live with ALS. It starts with having to fork out a heaping amount of money to buy a converted van. Buying a used van from the mainland has been Tracy Sherman's job lately, so mom Nancy can look forward to painting the town red on a comfortable ride. She found this company which sells used ramp vans through Craig's list.

Bruddah Chester Kahapea uses the Handivan, which I have learned, requires you to be physically present in order to apply for and be eligible for service. DaBus is wheel-chair friendly so if you aren't much of a hurry to get somewhere, this is one way to get there.

As everyone who needs one knows by now, there is no van conversion service in Hawaii. All conversion is done in the mainland so be prepared to throw into the price tag the cost of shipping your van to Hawaii. I don't know where Britt got the idea but he told me Albert Amiot, Jr. of Ali'i Adaptive Equipment (albjoe@hotmail.com) can equip your locally bought van with accessible options. I will have to talk to Albert more about this and get back to you next post....

TO BE CONTINUED....

Patrick on my Mind

I wish I knew Patrick before he breathed his last. He and all the friends we've lost to ALS. The celebration of his life that Mary and their kids - with the help of their wonderful o'hana - put together, portrayed a Patrick that we could only guess. I am one of those who knew him only as the man who got sick; the man, who looked so lost in his wheelchair, that night he was honored with the Courage Award.

For instance, I didn't know that Patrick was an avid fisherman. I imagine him in a boat, winds tousling his jet black hair, tasting the salt spray that settle on his cheeks, daring his catch to out-maneuver him as, in a rhythmic dance of foes, he alternately releases and reels in and out, reveling in the challenge. There would be pride in his heart as he raises the banner pronouncing his victory. There would be fishing tales that evening as he and his buddies would gather around the coolers, gulping their six-packs, recalling and savoring the adventure of the day.

Instead, each time I visit, I see him immobilized in bed, a bib under his chin catching the slight drool that leave the corner of his mouth, watching his favorite program while those around him discuss the events of the day. To me, he looked like one who was off in his own world long before he left this. Perhaps the inability to communicate in real time left him frustrated. Mary also told of how he battled pain, uncommon in most ALS sufferers but not unheard of. Pain is like a possessive lover: it demands - and gets - complete attention.

ALS takes its toll on many of its victims, robbing them of the opportunities to show their potential, silencing their voices, tearing apart their lives and loves and exposing their vulnerabilities. It is tough to be yourself when you are well; it is even tougher when a disease comes devouring.

So we content ourselves with the digital representations of the Patrick that was. I am left wondering of what might have been the Patrick for his wife, his children, his friends, his community - the many wonderful possibilities. I feel angry at how puny my own attempts are at easing the impact of ALS in people's lives.

Meanwhile, I salute Mary in her tenacity; Kelly and Kryn, in their innocence; and all their friends and family in their commitment to stand by them.

But go now, Patrick. Go, follow the fisher of men.

Losing Lisa

Tomorrow, in the early evening, those of us who knew and loved Lisa, will congregate at the Mililani Mortuary to celebrate her life. It is not hard to remember the pretty young lady who walked into the meeting room one support group meeting night. She is gentle on the eyes and a delicious whisper to the mind. What was hard to swallow was that she wasn’t accompanying a parent or a friend that night; she was there for herself. It is often politically correct to want disease to be an equal opportunity predator but we always bite our lips harder when the victim is one so young, so vivacious, and so full of promise.

And one so full of questions:

Does Britt feel pain in his legs?
Are you able to sleep through the night?
Does Britt need to be turned side to side?
Does he have gas after a meal of formula?
How does he form his words?

And on, and on, and on.

In the later years of her illness, I would visit Lisa at home. At every visit, I had come to expect Mom Jane to greet me at the door with, “She has prepared a list of questions for you, you know.” Lisa wanted to know everything about the illness and how it impacted me and Britt and our family. It was a way, perhaps, for her to gauge how she herself - mind and body - was responding, reacting, behaving. And what to expect of the enemy, as if by having answers, she could better understand what she was going through and what was yet to come.

In the end, because she couldn’t or it was too difficult to communicate, she would only look at me, her face reddening, large teardrops falling from the corners of her eyes, still inquiring but knowing that my finite knowledge - ANY earthly knowledge, for that matter - was no longer enough.

Sometime early August, Lisa decided she would no longer ask questions of mere mortals. She was going to her Maker, in whom there will no longer be any doubts, any fears, any half-answered questions. There will only be peace.

Godspeed, Lisa.

What Makes for a Successful Yard Sale

Friday afternoon wasn't without its drama; it merely shows that the best laid plans can be overturned by events. Such was Friday. We had it all thought out: sorting, pricing, and displaying the stuff and directing the afternoon's activities. And my! What STUFF we had! Perhaps, thrice, four times more than was accumulated last year.

But, Britt needed to go to ER because of difficulty breathing, so I handed the reins over to the first of the volunteers that afternoon: Jennie Chun. We left the house at 2 and did not get back til 10 PM. Queen's ER was so busy some gurneys were in the hallways. Britt, who didn't seem as sick as those who came in with traumas, was left to wait for hours. Every so often I would go out to the waiting room to check on folks at home. It was no fun captaining by remote control but I am sure it wasn't fun either doing what needed to be done back in the house. The scent of the mock orange filled the Friday night air but the crew flitting back and forth from the garage to the canopies was oblivious to it. They focused on one goal: get stuff displayed for the yard sale for the very next day!

At 10 when we came home, we were greeted by such a wonderful sight from the street: tents up, light bulbs everywhere shining on worker bees coming in and out of the garage sorting, displaying, etc. Lording it over by the big tent was Robert with a straw in his beer bottle... Ahh, the welcome sight is enough to warm anyone’s cockles.

When the last people (Robert and Armie) left around 1 AM, I took over tying up the loose ends, too energized to sleep. So while Britt slept off the excitement of the afternoon, I was puttering around, moving boxes to the curb, displaying 10 million shoes, rearranging this and that... and for the first time since Vi's Adventure Trek and Run last year, I saw sunrise (those who know me know I am not a morning person.)... It was gorgeous and I looked forward a great day at the yard sale!

Jason came by at 7 with his realtor's signs to be set up. (Other signs have already been set up Thursday night.) Then came Nancy and Tammie who started getting busy right away. One after another, the Saturday crew (which was slightly different from Friday's!) came in their grubbies, ready to tackle the day. A steady stream of folks - many who saw Tanya and Kathy's dog and pony show on Channel 4, the Craig's list ads posted by Tanya, and Kathy O's ad in Midweek - was willing to part with their bills for wonderful buys!

We shared potluck dishes throughout the day: Penny's delish kahlua pork and cabbage, Nancy's broke da mout fried chicken, my sister's pancit, Jessie's fantastic tofu concoction. Friday’s dimsum brought by some amazing elf made a great repeat performance on this day. And the pumpkin pie... These sustained us through the heat and pace of the day...

All of our pickled mangoes went!
All of Nancy's mango chutney went!

Ken's "Hawaii ALS" banner beckoned and people came as if in a trance. In the post-lunch lull, my halo-halo lifted crew's spirits and sleepy eyelids. At 2 pm, we were ready to pack up but gave in to an eleventh hour surge from Zippy's morning crew. There was still a bunch of good stuff on the driveway. You couldn’t call them pickings because there was soooo much and they were in fantastic shape ! After the last buyer left, Vi, Daniel and Natalie surprised us with a welcome bucket of KFC chicken to round off the day. Meanwhile Chase started helping mom Tanya put away stuff into the boxes.

All in all, Brad, Paul Mahi and I drove 5 truckloads to Goodwill and Salvation Army in the end, along with the Big Tent's and Ken's City Mill canopy's bags inadvertently stuffed into the load by a too efficient crew!

Around 7 PM, when the last of the trucks came back, we sat under the Big Tent and ate leftovers for dinner. We were tired, dirty, sweaty but happy campers. I asked the fellas under the tent whether we should be doing this again next year: "you bet we will" - was the enthusiastic response. But yes, once a year is enough! As with every experience, we learned there are ways we can do better next time: in sales, in organizing and wrapping up the day.

So what makes for a successful yard sale? First of all, great weather, and no threatening Felicias either to add to the angst. It was such a blessing that Tropical Storm Felicia wimped out early in the week, or else all our plans would have had to be shelved. Of course, there are the dedicated in our group who were our arms and legs, making everything possible, from the time the date was set to the time the last tent was folded and put away. We also have our cheering squad and inspirations in their homes - they are whom we work for. Most of all, our o'hana and members of the community who just pitched in because they believed in our cause. Penny Chun, our resident crafter, made lovely "thank you" note cards which we will send out, with gratitude in our hearts.

All in all, we made...drumroll, please... $1400 and change, including $120 in cash donations. Add that to our balance and we should have about $2000 in the bank, enough to take us through the Christmas holiday planning.

So till next summer again, dear friends, keep recycling, keep those treasures coming and hope to see you at the 4th Hawaii ALS yard sale !

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?

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!

Cont'd: Making the Impossible Possible...

2. WHEELS. This requirement gave me the least problem. It was pretty straight-forward. I googled "accessible van rentals." I chose a couple of sites, just to check the rates and how they operated. You get to reserve on their online form and they get back to you. I chose one of them (wheeler's) because it offered a cheaper rate: $110/day. I got to talk to their CA reservation office and all documents I needed were emailed to me. I faxed back the documents which included the standard reservation form, a copy of my driver license, and credit card authorization. All in all, I paid $691 for 5 days of use.

Recognize that the accessible van rental market is merely a portion of the national fleets such as Avis. This means that a plethora of options is not a reality. I asked for GPS, but the one I got did not have it. It had the my minimum requirements but I didn't like the lap restraint. The vehicle had a four point restraint but the lap restraint did not have a strap across the chest. Everything else - ramp deployment, "kneeling" function - was standard.

Pick-up directions and drop-off at the airport. The directions are included in the documents emailed to me so I left Britt with Tom and our party to pick up the van. I got into the shuttle that brought me to the parking area. This is a communal pick-up place for other rentals and businesses needing a place to return and pick-up and share personnel that did minimal documentation input into their computer. I checked the ramp deployment and restraints, swept a cursory look at the condition of the van, called in the info they needed (fuel level, mileage, license number), and took off back to the baggage claim area.

Drop-off is even easier (or so I thought). After filling up the tank, I drove back to where I picked up the van at the appointed time and gave the keys to a gentleman who recognized the van and waved me to a line of vehicles being cleaned by another. He got into the van and offered Tom and me a ride back to the airport but we declined as the shuttle was already leaving. In hindsight, I wish I didn't give the van away without checking the man's credentials. I didn't for two reasons: I was late 10 minutes in delivering the vehicle (I got lost: this parking place had two locations. Of course, I went to the wrong one, so Tom had to get out and ask directions to the right one.) ; and secondly, because I was late, a gentleman had called my cell to ask where I was. That's why I was confident that the gentleman who looked like he was expecting me got the van. Now that I am little bit more akamai, I would suggest making sure the person you are returning the van to is the right one. The pick-up/drop-off transaction is so informally conducted, it is open to ambush. To date, I have received no unexpected correspondence, so I think I am in the clear. Hopefully, dear God.

To be continued.....

Cont'd: Making the Impossible Possible...

B. The Sine qua non - airplane, wheels, housing.

1. AIRPLANE: Economy or First class? was NOT a question. The fares for Britt, me and his student assistant were already more than a thousand bucks. No way would I pay more. I was sort of hoping that Delta (the cheapest online that I could buy) would be as sweet as JAL was the time we went to Japan: no questions asked, they upgraded me and Britt to business class. But the Delta flights both ways were fully booked, so that was that. We were a large party of seven traveling: Britt; myself; a student assistant who will help mainly with lip-reading; one of two graduate students who wanted to meet the demi-gods of ethnomethodology that Britt was going to see; and my two tweenaged nieces.

Know way ahead how the carrier handles people with special travel needs. Check the carrier website. I first pored through Delta's on disabled travelers. Airlines that outsource reservation function to call centers should rethink this strategy. I am not being discriminatory but there is something about the resulting frustration when the common language, English, is not spoken clearly. It was embarrassing how many times I had to have the guy on the other end to repeat himself. And he was sooooo sweet, too. He would put me on hold to refer to his supervisor. With the music on, you know he is still online but he would come back to me every 2-3 minutes and ask if I could hold for 2-3 minutes more. I call that consideration but I did need somebody whom I could understand without several repeats.

Unquestionably, transporting a man in a wheelchair whose only gross movement involved a shaking of the head is a special need. I needed the airline to understand that Britt needed to be in his own wheelchair all the way to the boarding area; that although I had others traveling with us, we were not in a position to transfer him to his airplane seat without assistance, mechanical or human; that Britt needed special handling with some quick understanding of his disabilities and respectful of his condition as well as his dignity. I described to several reservation agents what Britt's situation was. I even emailed them directly. I wanted them to know that "this man is long, not heavy. But he is dead weight - he cannot help at all." I had seen the dreadful aisle chair - a device that is nothing more than a slightly reconfigured hand cart- that they said would be used to take him from the outside of the plane to his seat. If airline carriers are serious in assisting disabled passengers, the aisle chair is one of the things that need to be improved to provide safety as well as allow dignified handling of the disabled.

To address this concern, I tried to convince them that I could purchase a portable lift that can be stored in the cabin after using it to transfer Britt to the airplane seat. I argued that a portable Advance Hoyer lift (http://www.phc-online.com/v/vspfiles/html/lift_hoy_advance.shtml) may do the job better than we could ever do with the aisle chair or human strength. However, the agent said the airline will not allow this device, for which reason I could not understand. Still, someone may yet test my theory.

Two hours before flight time? Make that three! Disabled travelers appear to be an uncommon occurrence at ticket counters that many counter personnel may be very unfamiliar with the procedures of checking them in. The ones who checked us in both airports needed assistance from supervisors/senior personnel, in person and by phone. I pointed out that we are entitled to one free luggage which contained three of Britt's machines: compressor, tabletop suction machine and chest percussor. One other box contained most of his other care needs (suction catheters, wash basin, etc.) but I believe this does not qualify for free, although, looking back, I should have asked for sure. There will be delays at the ticket counter because of the situation so make sure there is ample time to check and recheck - for you and the counter people.

I can't tell now whether talking to the airline agents multiple times several weeks before about Britt's transfer made any difference. Describing his condition and asking specifically for strong, tall people to be on hand to help did not translate into reality. Two potbellied small Filipinos at the HNL airport were assigned to assist us. I ended up making the manual transfer myself (thanks to adrenalin, obviously) because their self-doubt increased my own about their ability to make a safe transfer. It was a risk I took but I thought I was a better risk. I think what made a difference was the fact that they actually SAW Britt and the Filipino Skycaps probably reported to their supervisors about the passenger Robillard because when we arrived at LAX and in returning at HNL, we had more reassuring assistance.


Airport security. This website will help in preparing you for the security procedures you have to go through: http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm. Letting the airline know ahead of time, at least 48 hours before travel, of your need for assistance will allow them to work with you regarding your needs. We had no trouble with airport security at both airports. They were helpful and respectful - their questions pertinent and straightforward. I told them Britt couldn't communicate the familiar way, so the Skycap assistant pushing his wheelchair helped in putting Britt's and my stuff on the conveyor belt so I could be with him while the security officer was patting him down. The only trouble I had was with the urinal which Britt had just used. I had warned the security lady about the urinal being with fluid but there was still spillage. Having learned my lesson, coming back I made sure I emptied the urinal before we went to security!

On to boarding area!


Ask for ways to make you more comfortable, including upgrades. Britt and I needed more space for different reasons. Booking etickets particularly through ticket brokers such as Travelocity restricts your choice of seats to what is made available by the carrier to that particular agent. At the boarding area, they gave us the seats behind the bulkhead right after their business class section where there was more legroom. It allowed Britt to stretch his long legs and for me room to reposition him during the 5 hour flight.

Don't forget the inflatable head pillow! To my consternation, I did. Consequently, for most of the flight, I had to make my right brain work overtime trying to create one with tiny blue blankets and my biceps, holding Britt's head up.

To be continued....