Hawaii ALS Support Group and Ohana

2011-12-20T10:18:00.000-08:00

It has been awhile since I and my family have been in touch with the ALS group, since Celeste's passing last December. This past Saturday, the 17th, we celebrated her by having a 1Yr Memorial at her favorite beach at Queens near the wall. From the early morning hours to the wee hours of the late evening we celebrated her life. The highlight of the day was the scattering of her ashes. With family and friends on surfboards, outrigger canoes, and a fishing boat, we headed out to share Celeste with the power and beauty of the ocean and the beauty of that day; it was a humbling experience to witness the coming together to celebrate Celeste. I've included a link to a video I made of the scattering of her ashes, enjoy and we will be more in touch with all of you.

http://vimeo.com/user9707108/celeste-1yr-memorial

Third Annual Vi and Peg's Trek at Koolau Ranch

2010-10-31T00:15:00.000-07:00

It was the perfect morning for a walk up the beautiful trails of Koolau Ranch. Nancy picked me up on time and away we drove along the coast. It is not often that I am a passenger so I feasted on the scenery that Sunday morning. It was overcast, the sun refusing to get up early this Sunday morn. So we were thankful. When we got there a little past eight, they were already gathered around the small group up front led by the HURT organizers. Vi and Jan are in that small group. After the introductions, we were off.

You might say this series of pics is an essay on Nancy's back, charming ribbons hung on tree limbs, creatively and humorously stuck on fresh cow dung or expressively pointing in mute perfection at the direction we were supposed to take lest we tread on wrong trails. Obedience is in our DNA's so we never strayed. How could we? There were the helpful and delightfully costumed "ushers" along the way, including one with a cold water jug on a truck halfway through the route. We huffed and puffed up and down the trail until we hit the last bend into the parking lot and the awaiting group of trekkers. We were sure we weren't last but we didn't bother to check as we got to the sarong-decorated "finish line". We picked up our Tshirts and grub from the MDA crew and chitchatted with Paul, Larry and Gerri. Tried to help the crew start the very obstinate generator to no avail... so we ended up our morning, happy with exercise of the day done and meeting again with our old friends, the HURTs and reconnecting with Mommy Nature, still resplendent in quiet dignity along the shore.
Hasta la vista, we said. Till next year's trek!

End of Summer Picnic, aka Baby Shower for Tanya and Happy B-day to Nancy Party

2010-09-25T17:33:00.001-07:00

It was a beautiful Sunday afternoon and as Sundays in our household went these wonderful days of summer, extremely busy. So it was not a surprise that I was late to meet Nancy at my house to bring the stuff to the picnic site. She had taken off with the barbeque items and anything that could fit in her car.

We - my two aunties, Sonia and Evelyn,on vacay and my niece, Darlene on assignment as photographer and I - arrived fashionably late to find Celeste, Dennis, Celeste's son, Dennis's mom and Pete and Vicky Badua already in the midst of their afternoon pahhhhty mood. So we unload and set up! Paul and Gerri soon came and so did Jan with the surprise b-day cake for Nancy. Our avowed honoree, Da Hapai Tanya and son, Chase, soon followed. Then Tami, Dale and Paul, with Armie and Robert bringing up the rear. Ooooops, not so! Ronda and her fourlegged furfriend came, too!

Appropriately, we had games - Guess how many m&m's in the jar; Unjumble the names of stuff that happens ONLY in pregnancy; and Put the bottle in the baby's mouth! We got prizes for the winnahs, too!

We then attacked the ono grinds on the table, determinedly covered to protect from the flies that wanted to gatecrash! Noodles, adobo, shrimp, chicken, bbq steak, Now-you-see-them- now-you-don't rolls from Armie; salad, the works!!!! We surely genuflected, nay, reclined ala Cleopatra, at the altar of the gods of calories!

Tons of photo-op: see slideshow below for evidence!

Then, what's a shower pahhhhty without presents? We took time out for that as well as sing Nancy the "Happy Birthday" song. And she had to open her presents, too! We all stuffed our faces with the yummy cake. More calories.

Talk story. Talk story.

"The sun is nearly setting!"
"Let's wait for the green light."
"The green light is the..."
"Shhhhh."
"But the...."
"Shhhh I said!"
"Ahhhhh."

Reverence for the end of summer. Trust in the continuation of friendship, fellowship and the hope for yet another summer. As beautiful. As shared.

Goodbye, sun. Goodbye, summer. Hasta la vista. Hanggang sa muli.

2010-07-20T13:55:00.001-07:00

Remember? Last year's Fourth of July!

2010-07-12T01:46:00.001-07:00

It was only last year that we were at the softball field and did what we did a week ago: ate ono grinds, had a good time and made money for a good cause. One more look into yesteryear won't hurt. Unless you were 5 lbs lighter, like I was. Boo-hoo!

Stroll down, tho not too far, into memory lane.

Thanks, Pete, for posting:)

More 4th Pics!

2010-07-09T11:37:00.001-07:00

A good time was had by all. The amount of planning, co-ordination, and work was reflected in the faces of all who attended. As a family supporter for Celeste Perkins, sometimes it's hard to volunteer for events like this. When I see the commitment in the people like Divina, Jan, Nancy, Natalie, and all the other volunteers who made this picnic happen, I'm feel so proud to be part of this organization if only minimally. Our efforts are pale to the efforts our family members with ALS go through everyday. Already looking forward to next year. ALOOOHAA!

Happy 4th of July!

2010-07-04T12:25:00.000-07:00

It was a cluster of tents at the Diamond Head side of Kapiolani Park. The trunks of the trees around it were wrapped in red and blue streamers. So were the legs of the tents. The balloons tied to the tops of the tents protested against their being tied down and strained to go with the nice breeezes that were fanning the site, making the heat part of the decor rather than a nuisance. And there were patriotic flags, big and small, proclaiming the pride we have of our country, our fellowmen, our independence and our liberties. A banner proclaming "HAWAII ALS" adorned the center tent - the red one: Ken's City Mill tent - told passersby and fellow picnickers scattered around the fields what we were about:

Our Second Annual Fourth of July Fun-raiser!

There was American spirit everywhere: hotdogs/burgers, watermelon, potluck fare and plenty more - to remind us we are a land of plenty, something we should always be thankful for. In one corner, Generator A refused to give life to our Shave Ice machine (wo)manned by Nancy. But we were not about to stand for nay-sayers. Generator B was called to duty. Bill, upon discovering why it also was refusing to work, drove off with Paul to buy the needed oil to get it started. And start, it did, which made our keikis, tutus and regular picnic revelers extremely happy, with or without azuki beans in their shave ice. At the end tent, Judy, the master face-painter, showed off her craft on many a tot's face, arm, hand, any G-rated body part available.

The spirit of competition was alive and well: tugs of war, relay races for young and old, water balloon toss and later on, an impromptu softball game. Chris saw to it that competition was fair, while Tanya was chasing Chase. This, while lovebirds Lance and Nicole, dutifully churned out the hotdogs and burgers, in their matching blue and white aprons.

Then, of course, what blue-blooded American won't believe that he/she has the luck of the Irish? Divina called off the winning numbers, while Natalie, picked them out. There were prizes to die for, from generous friends who gave of their hearts as well as their wallets. Till the last T-shirt went to the final winner.

Vi was there. Britt was there. Chester was there. So was Celeste. So were their entourages. Priscilla and Vicky kept tab on our donations while hubby, Pete, roamed with his camera lens documenting the spirit as well as the faces of fun and delight. Earlier a crew of groupies (Jay, Shelley, Glizza and company, Daniel, Pete, Natalie) and friends made an empty site into a picnic site, assembling and decorating the tents, setting up the tables and distributing the chairs. When we finally started with a welcome from Jan, he remembered all who could not come and those among us who flew to Heaven this year: Daria, Sylvia, Nancy, Joe, Bully, Charlie. They are having their own fireworks up there, I bet.

Just like all the wonderful endeavors that Americans all over our land and beyond, our 4th of July celebration would not have been possible without help from family, friends and strangers. We call it aloha here in Hawaii. We, Filipinos, call it bayanihan. I think every race has a name for it: Sharing, Giving, Loving, Concern for each other.

We had lots of aloha last Sunday. There was enough - and then some- that will take us through the year to yet another 4th, in 2011, when we will proudly show this spirit, this attitude all over again. Till then, mahalo everyone.

Haiku: To the ladies we love and lost

2010-06-13T00:47:00.000-07:00

A haiku is a traditional Japanese poem of 17 syllables. Traditionally, it is composed of 3 stanzas, each stanza supposed to conform to a specific form and intent. However, many contemporary Haiku writers have freed themselves of these strictures. American haiku writers usually compose 10-14 syllable poems. The brevity of the poem points to the intent of capturing the essence of a thought with minimum use of language.

In a span of a few months, our ohana has suffered the passing away of three ladies: Daria Jean Gagnon, Nancy Sherman and Sylvia Tanaka. To the families of these wonderful ladies, our hearts go out to you and we share in your grief. We, too, feel your loss.

Sing me no dirges
Cry me no tears
Shorn of body, my spirit soars.

Daria Jean Gagnon

Nancy Sherman

Sylvia Tanaka

ALS Informational Seminar at Key Project

2010-05-23T00:56:00.000-07:00

I learned the hard way that if you want to go to Kahekili Highway on the H3 from Kailua, you exit Kam Highway. Otherwise you go all the way to Stadium to get out and double back to Kaneohe. I learned it the long, 20-mile doubleback way, but next time, I'll know.

The KEY Project is way past Temple Valley but the view is beautiful even if you are 15 minutes late. The MDA crew was already there and so were all the other booth displayers. Kristen mounted the board onto the MDA table while Leslie helped me tape Lou Gehrig on the wobbly easel. Peggy is ensconced beautifully on the table on an equally beautiful metal easel. I caught lunch from servers Crystal, Leslie and Audrey while Ronda worked the crowd. There was toe-tapping music from this nice young man and I wave to Chester also working the crowd. There were many familiar faces. I meet the newly diagnosed families and try to calibrate my friendliness to their receptivity index. I give them copies of our brochure, printed in glorious color a couple hours before the UH crowd pau hana'ed at 4:30 pm Friday, thanks to my friend, Christina Higa of PEACESAT.

So here: enjoy the images. Sorry, I'll get better with practice, promise! Cross my heart.

Feeling Very Positive Today

2010-05-13T15:02:00.000-07:00

Wow! I have several new followers today, thank you Divina for spreading the word. I hope I don't bore everybody with my blogs. Anyway, it's fun for me and if it gives you a little bit of enjoyment or some insight into who I am and what I'm doing every day that's great! I've been looking for some new technology to help me out at home using my computer and using my phone. I think I may have finally come up with a product that will help me. Thanks to my friend Brian, who found it for me on the Internet.

I can currently use my computer with my headset on and Dragon speech recognition software and also a USB touchpad which Brian bought for me from Amazon.com called "easy cat". I am lucky I still have a strong voice even though I wear my BiPAP 24/7and I still have some functionality in my hands so I can use the touchpad. I just cannot type or reach the computer keys. My problem is that I have trouble using my phone, so I've been looking for a device that would allow me to use my computer and my phone hands-free, without touching any buttons and only using voice commands. The Device Is a little bit expensive, but I think I'm going to give it a try. I'll let you know what I think after I get it. This is the link to the website. http://www.nobuttonsheadset.com/index.htm

A note from Tracy Sherman, to all of us

2010-05-12T20:46:00.000-07:00

Inspired by Chester's comments at the last ALS Support Group meeting, I decided to dig out this poem that I found...hummm..back in the 80's and always hung on to. I think I found it in a Readers Digest book my mom subscribed to and have yet to find it on the web anywhere else. When you read it you will know why I kept it...yellowed..torn...basically beat up...but still readable.

FREEDOM
I write because I am confused
And seek to understand
I sing because I am alone
And reach to take a hand.
I wonder because I'm curious
And feel I should know why.
I hurt because I'm human
And this is why I cry.
I laugh because I'm joyful
And this seems right to do.
I love because you're special
And pray you love me too.
I live because of all these things
I find in every day.
They tell me just what life's about
And I listen to what they say.
To laugh, to love, to live and sing,
Oh yes, even to cry,
These simple gifts of freedom
I will treasure 'till I die.

A Crafternoon at Penny and Brad's: Creating Greeting Cards for HALS

2010-03-31T02:27:00.000-07:00

What is a better way to spend an afternoon than to let your imagination and creative juices flow and with hands, machines and materials, come up with beautiful greeting cards? That's exactly what we did, one afternoon in March, at Penny and Brad's hospitable home in Nuuanu Valley. Armed with scissors and determination, we were willing pupils of the craft meisters: Penny and sister, Lorraine, who molded our thirsty minds and itchy hands into crafting machines.

So here we are, showing off our products:

And, of course, as all wonderful times spent with friends of like interests and, ahem, talents end, this crafternoon ended with an awesome salad dinner. It started with home-baked garlic bread and craisin bread. Penny really outdid herself here showing off her baking skills as well;) The salad was an exercise in sharing: each one brought something to contribute to the salad. So we had greens, soybeans, avocado slices, whole pitted olives, chicken, craisins and other outrageously yumminy edibles thrown into a gastronomic concoction! Also, thanks to Penny, we curtained called our dinner with strawberry jello and her fabulous tapioca with fruit. No, you should never wonder why we always gather: there is always something for our tummies to enjoy!

With bring-home greeting cards jostling for space in our totes with left-over yummies, we headed home after a well-spent afternoon - knowing we have exercised our right-hand brains to the max for a very deserving cause: greeting cards for those we care for - family, friends and HALS, handmade with lots of love.

"Not Your Average Mail" from Nicole and Lance Wallace

2009-11-18T19:17:00.000-08:00

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

2009-11-18T00:14:00.000-08:00

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

2009-10-25T17:24:00.000-07:00

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?

2009-10-22T19:39:00.000-07:00

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

2009-09-10T18:51:00.000-07:00

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

2009-08-24T20:34:00.000-07:00

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

2009-08-24T19:28:00.000-07:00

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

2009-08-13T00:25:00.000-07:00

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

2009-08-07T17:51:00.000-07:00

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

2009-08-06T00:27:00.000-07:00

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)

2009-08-06T00:19:00.000-07:00

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

2009-07-16T20:12:00.000-07:00

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

2009-07-10T20:38:00.000-07:00

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."

2009-07-04T22:07:00.000-07:00

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

2009-06-30T23:06:00.000-07:00

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

2009-06-29T01:16:00.000-07:00

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

2009-06-28T20:13:00.000-07:00

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

2009-06-24T01:44:00.000-07:00

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...

2009-05-30T00:06:00.000-07:00

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...

2009-05-27T18:16:00.000-07:00

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....

Making the Impossible Possible: Traveling with a Severely Disabled Person – a Personal Case Study

2009-05-25T19:45:00.000-07:00

I am making our recent trip to LA to witness our son’s graduation from college the case study for this post. This was my husband’s first trip to the mainland in 18 years. Having traveled with my husband off-island to Japan 12 years ago at the invitation of the Fukui ALS Association was helpful in anticipating the rigors AND fun of this experience. But this trip being personally motivated, financed and arranged, gave it a different flavor.

A year ago, the will to bring Britt to the mainland for Tom's graduation started as a timid, almost hollow promise to ourselves that we would go. It slowly assumed likelihood when the time drew nearer.

A. PLANNING AHEAD. In February, I started imagining step by step how I would bring Britt from the house to the airport to the boarding area, etc., etc.... and everything that each step would require.

What to bring. Although I had a mental checklist of the steps to take in preparation, I actually made a physical checklist of the things to bring. And even then, I STILL managed to forget some – flashlight with batteries, my in-flight reading material, among them. Thank God, all the essentials for his care were in my 2 ½ boxes! Bringing the generator nibbled at my mind but, nah, I said, maybe overkill.

Where to ask for help. Linda Dullin, our HMSA case manager, was an indispensable source of sage advice. She was the sounding board for my doubts and second guesses, particularly those relating to equipment I thought I needed to bring. Remember, this trip is self-financed so she helped me rethink the stuff I wanted to have vs. the stuff I had to have. She hooked me up with Apria for the rentals that I would need: lift, hospital bed, overbed table.

Jennifer Li-Dotson, our MDA Health Care Services coordinator referred me to Andi Sass, MDA Health Care Services Coordinator (Los Angeles) for a commode. I emailed Andi a picture of what we had at home and she got that in our rental house even before we arrived from Oahu! Talk about speed, efficiency, know-how, concern! Now, I can never look at a commode without thinking of Andi (thanks to her sense of humor, she took this as a compliment, which was my intention.)

Fig.1. Britt’s commode. I padded the cover of the seat because of the ridges that form the edge of the cover, which pose a danger to his fragile skin. Manufacturers should rethink this design. Notice the different “legs” of this commode. The original legs were too short so I took off the legs from his older one and switched them. I took these precious legs to LA with me, in case Andi’s loaner was a Danny de Vito!

Check important websites especially those regarding travel for the disabled. Because we were traveling at mid- spring, I was concerned about the kind of clothing I needed to bring for Britt. He tends to get cold very easily not having much bodily insulation from the muscle and fat loss. Of course, no matter what, Britt would be wearing his signature aloha shirt and shorts but I would need to know which sweaters and lap blankets to take along. (I have always wanted to buy him ponchos to wear instead of sweaters as the latter are hard to put on and actually creep up his torso as the day wears on, but that could be the subject of another blogpost.) I started monitoring
for 15-day forecasts and historical data. (Talk about obsessive-compulsive! I was NOT going to give up my sweater if it turned out to be a cold trip, as I have thin blood to begin with.) Fortunately, it was a sunny 5-day trip with nippy mid-50’s at night but minus the humidity that our skins and lungs were familiar with in balmy Hawaii. Having (many) relatives in LA meant we could borrow warm blankets as needed.

As for travel websites, the one that gave me the most information was http://www.globalaccessnews.com/tipsandresources.htm
It gave specific as well as general info and led to links (although some didn’t work) that could be explored further. It confirmed some of the misgivings I had, for example, about checking in wheelchairs (It lost a lever sponge cover. Minor, but still…) This site was worth the quick read I gave it. I also took a quick look at
http://www.faa.gov/acr/dat.htm and searched for “air travel for people with disabilities”. Interesting read. If you have the time and interest, this is a great site to peruse regarding rights of traveling people with disabilities.

(To be continued : The sine qua non– wheels, airlines, housing.)

See You At The ALS Seminar This Saturday!

2009-05-13T01:30:00.000-07:00

May is ALS Awareness month. This Saturday is the annual ALS seminar. There was a nice article in the Star Bulletin today on Chester, who was diagnosed with ALS last year. He reminds me of my Dad because of his laid back, local, accepting attitude. He's living life to its fullest, traveling as much as he can, knowing that this disease is terminal, but not letting it get him down. My dad was just like Chester. He really had a zest for life.

Each year, we lose people to ALS. As we lose some, more are diagnosed, and there is still no cure for this debilitating disease. Please help support Muscular Dystrophy Association (MDA) in its quest to, one day, find a cure.

» What: Ninth Annual ALS Seminar (ALS is amyotrophic lateral sclerosis, or Lou Gehrig's disease)

» When: Saturday, 9 a.m. to 12 noon

» Where: Queen's Conference Center, 510 Beretania St.

» Why: Sharing local resources for families, caregivers

» Speakers: Keynote -- Mike Shannon, ALS Western regional director; Kimi Chun (daughter-in-law of the late artist Peggy Chun) will share caregiving resources and different care options.

» Registration: Free. Call 593-4454.

» Sponsor: Muscular Dystrophy Association

We'll be there Saturday morning manning the ALS Support Group booth! Hope to see you there!

Goodbye, Ron!

2009-02-27T00:42:00.000-08:00

I did not know Ron personally. I met Marcia and daughter, Heidi, in March last year at Mary Valenti's house. We were having a break - forced by circumstances but nice, nevertheless - from our monthly support group meetings at the Queen's Conference Center and were enjoying noisy chatter by the pool. Marcia and Heidi brought veggies and dip to share and an antique mahjongg set. They had the anxious look of folks who have been touched irreversibly by the illness we know awfully well. With the exemplary control very much defining Southern belles, Marcia obliged our desire to learn the basics of mahjongg. We sooooo wanted them to feel we knew what they were going through and to just try to relax because the road ahead would be long and tough.

Last December, Nancy and I saw Marcia again, after getting kinda lost in their neighborhood. We were dropping off Christmas cookies. It was a very relaxed Marcia that greeted us at the gate. She led us into her beautifully decorated home. It was almost mid afternoon and Ron was resting in their room. Nancy and I oooh'ed and ahhhh'ed at the spectacular Christmas displays while Marcia played our gracious hostess. It occurred to me that she seemed to have come a long way, emotionally, from the first time we met her.

I never met Ron although I'd seen him briefly from across the lobby of the Queen's Conference Center at last year's ALS Seminar.

Ron was 58 when he died. He served as Aston Hotels and Resorts chief financial officer and executive vice president. He was born in Denver. Aside from wife Marcia A., Ron is survived by son Reid, daughter Heidi Rogers, mother Joyce and brother Scott. The family requests that donations be sent to ALS Therapy Development Institute, 215 First St., Cambridge, MA 02142.

Ron, you will be missed by those who loved you and knew you. Godspeed!

Next Week: Blackout!! Part II: What To do to Prepare for Power Outage

2009-01-29T23:34:00.000-08:00

At our January support group meeting, we discussed what people learned because of the island-wide blackout that happened day after Christmas last year. I will attempt to describe what the group discussed on this topic. Please think of your own blackout experience and share them in the "Comments" section right following the blog. Looking forward to this next one and hope you are, too!

BLACKOUT!!! Experiences and Tips on How to Cope

2009-01-29T18:15:00.000-08:00

This will be a three-part blog. First, I will share my blackout experience plus those of three other Oahu families. Next week, I will outline some practical tips on how to prepare for power outage situations. The week following, I will discuss a common power replacements, mainly generators. At the end of these installments, I will ask you to share your thoughts on the topics in the "comments" section at the bottom of the blog because the main idea of these blogs is to exchange information and learn from each other.

It happened unexpectedly the day after Christmas. This was a typical Friday afternoon at the UH Manoa campus during Christmas break. A few students in the Social Sciences building were hanging out in the 7-floor edifice while most were either on vacation or have already started their weekend. There was reportedly a thunderstorm raging outside but inside Britt's office, we were made oblivious by central airconditioning and window blinds. Moments before the blackout, we - Britt, Alpha (his student assistant) and I - were performing the last few rituals of a day at the office. Britt was listening to politico.com while Alpha was straightening his desk. As was my practice at the end of the day, I was in the department second floor bathroom, washing dishware used that day when suddenly, I thought I suffered a stroke and became blind! I could feel the cool water running over my hands but I could not see a thing! Abandoning the dishes in the bathroom and glad that I know I was still able to walk, I groped out into the hallway where there was some glimmer of light. Happy to note that it was the lights and not me that had gone blind, I walked to Britt's office. Inside, it was pitch black except for the tiny glare of Alpha's cellphone.

We moved Britt to the hallway where the emergency lights were on within the inside maze of faculty offices. Beyond the big open double doors of the maze, the yellow glimmer emanating from the emergency lights spaced farther apart provided some illumination. We heard loud footsteps and voices in the courtyard and stairwell. I could tell Alpha was as wary as I was. Darkness, loud noises and footsteps in the dark on a rainy night in a mostly empty campus can be a spooky combination. Within a few minutes, to our relief, Lloyd, a graduate student carrying a dim flashlight came by. None of us were sure of the campus security number so Alpha went into the office to look for it in the staff directory. When I got security on the phone, I asked for a couple of security guards to help us bring Britt down to the ground floor in his wheelchair. The lady kindly said they couldn't spare anyone as everybody was out responding to all sorts of alarms that were ringing throughout campus. They would only respond to emergencies. They didn't think Britt in his wheelchair marooned on the second floor of a dark building, accompanied by two women armed with only cell phone lights and a grad student with a dim flashlight, was one. I suddenly remembered that our son, Tom, was in nearby Kahala hanging out with friends, so I called him. Fortunately, he was with six of his Iolani buddies, and could come right away. Ten minutes of waiting seemed an eternity in the darkened hallway so I said I was going to get my flashlight, which I knew would be brighter than Lloyd's, from the van. Alpha, the city girl from Hongkong, would not let me go by myself so, replacing her high heels with a pair of flip flops and taking a big serving fork from our silverware drawer, she accompanied me down the really dark stairwell into the parking lot. We had left Britt in Lloyd's care.
The brightness from my trusty flashlight stabbing the pitch black of the parking lot was such a relief! Back upstairs while rescuing the abandoned dishes from the bathroom, we heard hearty laughter outside in the hallway. I recognized Tom's voice; it never sounded sweeter. When everyone got positioned, gently and slowly, several pairs of hands carried Britt down four flights of stairs. We met some friends in the stairway with whom we talked story, further relieving the tension of the last half hour. We finally got Britt into the van and soon, we were driving off through the unusually dark, a-bit- confused streets of Honolulu, with Alpha planning to drop her off in the safe company of her friends.

The island-wide blackout meant other people with ALS on Oahu were just as affected. Ken Ching described his and Sherry's experience in an email:

We were in Kaneohe when it happened. Went directly home and of course we could not get into our
apartment. I walked up and got her meds and whatever to keep her comfortable in the car. (We had to use Pali Momi's bathroom).When we were through using Pali Momi Hospital's bathroom we parked in their handicap stall for a little more than an hour. We had the security guard's permission- in fact they invited us to park there and said they would watch out for us. We left there after I started coughing - realizing I did not take my antihistamines and we drove back to the apt. I got my meds and Sherry's plus the things to make her comfortable. When I went back down the Security guards told us to park at the pool so we could use the bathroom if needed. I moved to the pool and parked. We did not have dinner and of course I was hungry- Sherry does not need much food. I went back up to get a snack and the emergency radio and the lights went back on at about 1030. I took the elevator down and moved the car to the front to take her up to the apt. Parked and then the power went off. I decided to stay in front and we camped there until 2:30 am when the power finally came on for good. Of course we slept most of the day. A little adventure when you consider that it could be worse when comparing it to being lost at sea. Here you are on land surrounded by resources and choke with people to help.

Rick and Mineko's experience was a little bit more concerning but turned out to be not too bad with help from friends and friendly (and buff!) firefighters. In an email, Rick wrote:

We had an exciting blackout experience as well. My wife, Mineko, wanted to work late, but I was kind of nervous about all the thunder and lightning and rain so she came home a little bit early. Five minutes after coming home, "poof" the lights went out. We thought we were prepared with my backup marine battery and also another backup battery for my BiPAP. We figured we had about 10 hours worth of electricity to run my BiPAP machine. We to do KSSK and realize soon that it was islandwide and after the last experience from the earthquake, we knew it might be 20 to 24 hours before power came back on. So, we knew we'd have to get to [the hospital] somehow. At the same time I had nurses and friends calling to check on me. Everyone suggested that we leave for the hospital as soon as possible and not wait until my batteries were almost drained of power. So we called the 911 service and ambulance and fire came within 10 minutes. The firemen put me in a chair and carried me down 17 flights of stairs. And ambulance, thankfully, was willing to take me to Kaiser Hospital. I know most of the people at Kaiser Hospital so they were ready for me when we got there. I spent a relatively comfortable night at the hospital. Mineko, unfortunately, had to sleep in the chair next to me. We finally came home using the "Five-star transport service" at around 5:30 PM Saturday. It was a long and interesting experience. We learned a lot and now realize that we probably need a backup generator and some kind of uninterrupted power source for my BiPAP machine. But we are safe and sound now and blessed that we had so many angels and caregivers looking out for us.

Lisa Yamaguchi's family had a more difficult experience. In a phone call, Dad Richard told me (I am paraphrasing here):

I knew Lisa's vent backup battery was broken. Earlier that month, I told the respiratory therapist that but told them no rush. When the blackout occurred, I immediately regretted having said that. We knew we had half an hour of power in the vent. So we called 911. The ambulance came and took Lisa and Jane (Lisa's mom) to the hospital. I followed in my car in the traffic. On the way, I learned that Lisa was refused admission at Pali Momi because their ER was overflowing. Same with Kaiser. Finally, Queen's admitted her but they said it was fortunate she had her own vent because the hospital has run out of them.

These experiences tell us that, in case of disturbances in the normal course of life such as a blackout, people like us have plenty of good stories to tell our friends and grandchildren. But, more importantly, we need to be prepared so we are not caught unawares.

In next week's installment, we will tackle "Things we should have done to prepare for a blackout, so we don't kick ourselves in the dark." Meanwhile, please share your "blackout!" stories...

For Next Week's Blog: BLACKOUT!!!!

2009-01-22T12:10:00.000-08:00

In keeping with my hope that I can post a weekly blog, please anticipate with me the topic of next week's blog: Blackout!!!

In view of the recent island-wide blackout that occurred the day after Christmas, several issues have come up with regards our preparedness in the event this emergency occurs again. It was one of the topics that came up in last Tuesday's meeting. I thought it is a topic worth talking about in our blogsite.

A December to (most definitely!) Remember

2009-01-20T20:16:00.000-08:00

It was a hectic December (not counting the prep time in November!). It was chockablock of hard work rewarded by loads of fun. Look at how busy we were:

1. Caroling Practice - At the beginning of December, a group of us die-hard carolers met to practice our repertoire. Organized a year ago as a project between the University of the Philippines Alumni Association-Hawaii (UPAA-H) and the MDA ALS support group, this merry band of troubadours was joined this year by young men and women from the Singles for Christ (SFC), led by Jon Ellis Pangilinan (also UPAA-H PRO). We met for practice at UH Saunders Hall one evening and fueled by Zippy’s chili and turkey sandwiches prepared by our own Nancy Fujino, we belted out one carol after another. We don’t know if the final exam takers at the classroom next door were delighted or not, but we sure sang our hearts out.

2. First “Dress Rehearsal” at Nurse Advocates and Mentors, Inc. (NAMI) graduation – We didn’t wait too long after rehearsal to foist our singing on a real audience. The following day, we displayed our talents at the graduation of the NCLEX-RN review sponsored by NAMI held at Filcom Center. As self-appointed leader of the group, I explained to the crowd of families and mostly Filipino nurses, what the group was about – our mission to spread Christmas cheer through music to all who would listen but especially to members of our MDA ALS support group who were home-bound. Since we were also trying to raise money for our HALSSGO activities, I passed around a Christmas stocking “with string attached” (literally!).

Another serious group. Bah, humbug! The group was joined by Consul Paul Cortes (second from the right in suit) of the Philippine Consulate General. Maybe because of his company, we were able to raise $94 this evening! Consul Paul, we’ll have you anytime!

3. Second “Dress Rehearsal” at UPAA-HI Christmas Party – That Sunday, December 7, we reprised our outstanding selection of Christmas carols at the annual Christmas party of the UPAA-HI held at the Philippine Consulate General lanai. To our delight, the audience joined us in the caroling! It was a night to remember as we joined the UP alums winning gifts in the raffle fundraiser, making mini-parols (Christmas star) and enjoying the sumptuous buffet. Only the lechon (roasted pig) carcass was left as evidence of the merriment that occurred that evening at the mansion on Pali Highway!

4. MDA ALS Support Group Party – The Tuesday following, it was our turn to make merry at the Philippine Consulate General Lanai. Thanks to Consul General Ariel Abadilla, we became the only (hmmmm, maybe just the first) non-Filipino group to be have been granted the use of the lanai. With the embers of merriment (read: Christmas decor) from the UPAA party the Sunday before still flickering, ours followed a similar festive path but with some distinctly HALLSGO traits. First, all sorts of headgear appeared. Santa hats and mutated reindeer antlers (generally, ones inspired by commercial DNA) adorned many a head. A “cool dude” Santa in red hapi coat and holding a folded Japanese fan orchestrated the “Win-win Raffle” while MDA Health Care Services Coordinator Jennifer Li tapped audience members to pick the winning numbers. Wonderful friends such as Laura Steelquist of HiMed and Pam Fujimoto of Tripler MC donated pahhhhhlenty of prizes! And many more donated cash! Muchos majalos, to all of you!
We had a one-man band made up of two people. Dr. Gerry of Convalescent Center of Hawaii and his sidekick, Ernie, provided music and entertainment. Guest of honor Daniela Minerbi played the piano and our new friend, Consul Lulu Tabamo gave an inspiring talk. The dear mainstay of ALS Christmas parties, Penny Chun’s Christmas angel craft corner, delighted the young and the, ah, “always young.”
After having so much practice, our caroling group strutted our stuff. I danced myself breathless, of course. And as always, Gyotaku’s catered food (thanks to MDA for providing) and our own homemade desserts capped the evening. There was sooooo much fun, the time went by quickly and soon, it was time to distribute the leftovers and clean up.
There were many people without whose magnificent aloha, our Christmas party would not have been as enjoyable. To each of them we sent “thank you” cards.

5. Finally! Caroling night – We hadn’t even started singing and it was already pouring all over the island. The downpour did not stop us anyway. The group was divided between Leeward and East Honolulu. Three homebound families were visited by each group. The east Honolulu group mother-henned by Nancy Fujino and Jennifer Li visited the Warrens in Hawaii Kai, the Hinds in Moiliili and the Rakers in Nuuanu. Several members of SFC and the guitarist, Jon Ellis Pangilinan, joined them.
Meanwhile, in the Moanalua-Aiea area, an all MDA ALS star cast of Paul and Dale Mahi, Brad and Penny Chun, Kathleen Hanson, and moi were joined by UPAA’s Rose Zabanal and Ray Liongson, our guitarist. We packed into Paul’s minivan and chugged from the Hanson-Ching’s to the Chun-Kam’s and finally, to the Meckstroth’s. The entertainment was not just one –way as Ken Ching treated us to the haunting music of a nose flute and Jennie Chun tickled the keys to “I’ll be Home for Christmas.” And, of course, there were punch and cookies for the road!
Like anything worthwhile doing accomplished, the road ended in gastronomically enchanting places. East Honolulu made their way to Kenny’s while The Leeward group tried exotic Souvaly’s in Pearl City. In the end, everyone went home sated and happy that a good deed was done this very unlikely night!

6. Christmas Cookie-baking with Master Cookie Monster Cathy Anderson – You could tell with all the equipment she brought with her to my house, either she was a professional pastry chef or a mom whose children adored her cookies. She was both. Cathy showed novices Rose Zabanal and me and experienced Nancy Fujino how to bake Christmas treats AND how to box them in an, ohhh so delicious!, manner. This project took many hours and two heat blisters on Cathy’s fingers. It started in the afternoon and wasn’t done till 10PM. But it was worth the sweat! We were able to fill eight red boxes tied up in beautiful gold and red bows! After this experience, I couldn’t look at cookies quite the same way.

7. The Nutcracker c/o Ballet Hawaii – We were there! Never mind that it was a dress rehearsal. It was THE Ballet Hawaii dress rehearsal, which meant it was like seeing the real thing. Thanks to Jennifer Li, who organized this activity, fifty of us, including our families and friends, came, watched and went home, culturified balletomanes. My granddaughter did her version of plie for days.

8. Remember the Cookies? – On Christmas eve, Nancy and I delivered the cookies to eight families – the Valentis, Hinds, Rakers, Warrens, Meckstroths, Hanson-Chings, Yamaguchis, and Chun-Kams. We stayed too long chatting with gossip-starved Mary Valenti, got lost looking for the Warrens in the daytime, wished the entire Chun brood “Merry Christmas” at Jennie and Warren’s home and got verrrry lost looking for the Meckstroth’s. We saved the last box of cookies for Lisa and her family who were knee-deep in preparation for a big Yamaguchi family get together at their home for Christmas the next day. It was late when I got home at half past eight. But Nancy and I were happy to have brought our Christmas cookies to our home-bound friends. We will always have their happy faces in our hearts. And for you, the photos from our camera!

And that, friends, is how we approached Christmas, the holiest of birthdays: lots of giving and receiving. The best part is we get to repeat this ritual again at the end of the year! And we have the whole year to cook up our next Christmas plans.

Deja vu: A Perspective Revisited

2008-12-23T17:52:00.000-08:00

That Saturday evening at 11, I was ready to go to bed after spending most of the day baking Christmas cookies with Nancy, Rose Zabanal of UPAA and our "Barefoot Contessa" of cookies, Cathy Anderson but I couldn't resist checking my email. There it was: Paul's email announcing Daria's brain tumor surgery day after Christmas! It sounded very ominous: recently discovered, fast progression of symptoms pointing to a fast growing tumor. Naturally, I was shocked! Paul had explained Daria's absence at our Christmas party as Bell's Palsy - a nasty, virus-based illness, which can leave annoying slight residual symptoms but... brain tumor!?!!
It brought back memories of my own illness because of the similarities: the dreaded cancer, surgery around Christmas time and my husband living with an illness of his own. The memories swirling in my mind led me to my desk drawer, where I kept the original letter I wrote to friends and family that year when I was in the throes of undergoing breast cancer treatment.
At this time of the year when we pause to ponder the meaning of Christmas, I think it is appropriate to share it with you. Although it presents an individual perspective, the universality of fear AND hope when faced with a threat to one's mortality cannot be denied.

December 4, 1997

In three days, it will be exactly one month since the mastectomy. I look at the thin line on one side of my chest where my breast used to be and I know I am mending. In one way. In other ways, I am waiting for my private world to stop spinning so I can see where I am. And where Britt is. And Thomas, Zandra. And the rest of the world that I love and loved me back.

With heroic efforts, we tried to keep the flowers alive and like all mortal things, they slipped away. The wonderful dinners became leftovers and then they were gone, too. The greeting cards with their beautiful words of encouragement and support are somewhere in my little bag. The one with all the magazines, the books, the stampitas, loose change, video cards and the journal where I wrote "F" words in. I am sure the heavens were choked with smoke from jos sticks lit in Hongkong and candles in Spain. And God had an earful from novenas from the Philippines, prayers and good thoughts from Nepal, Micronesia, the mainland, Kauai. Everywhere friends, family and even strangers put in a good word. Everywhere where Britt's email SOS reached as he sought counsel, helping hands, prayers, information. Whatever. And got back much more.

It is staggering to be the object of so much love and concern. Me, the strong one. Me, the giver. It is a role I am not used to playing.

There are times I am able to locate my sense of humor. It is hard to live up to being half-Kate Moss and half-Dolly Parton. On others, I cry a little while I put feelings to words. Many times, I am afraid. Of dying. Of chaos. Of being nothing. Of a paper cut in the wrong arm.

Last night, I felt the need to walk down the street. Just to experience walks I've had before. I looked up the sky and saw the same star that was over me a month ago. It was only then I noticed it. But it must have been there long before then. As surely as life has always been. In one form or another. As surely as it is marching on now while I'm trying to keep in step. One wobbly step at a time.

Yes, life has gone on. So must I. So will I.

Thanks for being there for me and mine.

Love always, Divina

PS. May your Christmas and New Year be as blessed as you've made ours!

2008-12-09T23:00:00.000-08:00

If you didn't make it to the ALS Support Group Christmas Party at the Philippine Consulate this year, here are some of the things you missed out on....crazy holiday hats, Secret Santa Joe, a one-man band, 'ono food and desserts, dancing, piano playing, gift give aways, a caroling preview, and fun chatting with new friends and old.

ALS Support Group Christmas Party at the Philippine Consulate Tonight!

2008-12-09T11:58:00.000-08:00

Tuesday, December 9 2008

WHAT: ALS Support Group Christmas Party
WHEN: Tonight, Tuesday, 12-9-08 at 6 pm (or earlier if you want to help set up!)
WHERE: Philippine Consulate
2433 Pali Hwy
Honolulu, HI 96817
(808) 595-6316

** Appear in Christmas colors with your Christmas paraphernalia (earrings, beads, etc.). To continue our beloved Peggy's idea of a fun Christmas costume - headgear! antlers preferred (but Santa hats, okey, too!)
** Bring a dessert dish to complete our Gyotaku meal!
** Come with your pahhhhty attitude and prepare to have a wonderful time!!!!!

To my dismay, I discovered that the restrooms at the consulate are NOT accessible. For some reason, because the lanai is flush with the ground, I thought everything was. There is a step-up to the bathrooms. Does anyone have a ramp we can borrow for anyone who needs it? Other than this oversight, the following are okey!:

1) Food: MDA is paying our our Gyotaku-catered menu of yummy stuff: mochiko chicken, yakitori, maki sushi, teri beef, rice, noodles, and namasu. Thanks to Jen's pake negotiating, MDA is getting a good deal! Penny is bringing oriental chicken salad and we all said we would be bringing desserts. I will bring a pan of my sister's famous bite size pecan pie-lettes! Nancy will make punch and Jen will bring the water cooler for it. There is a cold-water fountain at the lanai so no need bring water. Nancy and I will bring carafes for tea and coffee.

2) Raffled door prizes: the following have pledged to bring gifts:
John Wray - 2
Jennifer-3
Penny- 16 (yes!)
Joan matsukawa (KCC) - 1
Daniela Minerbi (KCC) - 1
Pat Nishimoto (Tripler)-5
Jessie- Koppel - unknown qty.
Laura Steelquist (HIMED) -1
Violeta Arnobit (Ace medical) -1
Divina - 5 GC's or Peggy calendars
Rouie Dumlao (my sister) - 1 Long's GC
Kathy O-christmas stockings

We'll make sure everybody goes home with something.

3) Additional revenue from 3 (three) sources: a)I passed the "Christmas stocking with string attached" last Wednesday at NAMI and got $94 cash. b) I emailed everyone in my eddress book and got the following monies pledged or checks made out to HALSSGO:
Auntie Myrna Rosales - 100
Lynn Wells - 100
Charon Pierson -50
Jennifer Nagtalon-30
Nelli Balingit-50
Nishihama and Kishida (Alton Miyashiro) - 100
Juo Leung - 30
and 3) Jessie Koppel - $300 pledge.

Folks, we need to send thank you's to these people as well as all who gave us gifts in many ways (above and as resource persons). I propose taking a group picture tomorrow with all our christmas regalia and make a card out of it to send to everyone.

3) Decor: UPAA left the stage decor on for our use. Our president will ask ConGen to have us use the chandliers and the PA system tomorrow. I will get poinsettias in pots to decorate the planter boxes and to raflle away as door prizes. Sundry decorations. I will be at the consulate as early as possible tomorrow to set-up tables/chairs. We need somebody at the reception table for nametags and taking attendance esp to take down mailing addresses for TY's. NEED VOLUNTEER. We will set up 7 long dinner tables and 2 tables for buffet.

4) Programme: Can we have someone do an invocation? at yesterday's UPAA party, one of our alum read a poem by Maddie Stepanek from his heartsongs. it was very touching! We will have Kathy O's friend the one-man band, a short holiday game engineered by Kathy O, a piano rendition by Daniela Minerbi and a few words from a representative of Philippine Consulate (probably Consul Paul Cortes who sang a stunning Christmas song last nite). We will also have an, ahem, dress rehearsal from our Singing Christmas Troubadours - some from our group and some from UPAA.

If I have forgotten anything/anybody, please let me know! Meanwhile, Cathy Anderson and I are planning the cookie baking for Wednesday for the 7 families we are visiting on Thursday.

Okey, reindeer and elves, see you all tonight ready to have fun, food and festivities!

Peggy Chun's Memorial Services Friday

2008-12-04T15:05:00.000-08:00

The public memorial services for Peggy Chun are set for tomorrow, Friday, December 5th at Kawaiha'o Church. Visitation is at 1pm, with services following at 2pm. The family is also having a private lu'au for Peggy’s friends and family that same day.

Also, a note from Kimi, Peggy's daughter-in-law:

Get your last minute Christmas shopping done all in one place! Artwork by Peggy and others, prints, calendars, cards, cookbooks, The Watercolor Cat book, and more. Plus, check out the household treasures looking for new homes as we begin to plan a move to a new location.

Peg’s Legs Christmas in Nuuanu
An Art & Treasure Sale at Peggy Chun’s

Friday December 19th 11am to 4pm
Saturday December 20th 10am to 4pm

Peggy Chun Art Studio & Gallery
3115 Alika Avenue Honolulu, Hawaii 96817

Most importantly, come and see us because we miss you all! Even if you’ve finished your shopping, just come for the refreshments and socializing. And don’t forget your Christmas costumes in honor of Peggy!

Friends and family are welcome! Mele Kalikimaka!

Email kimi@peggchun.com or call 808-595-8434 for more information
www.peggychun.com

Visiting Lisa

2008-11-24T20:00:00.000-08:00

Monday, November 24, 2008

Divina, Chase, and I visited Lisa Yamaguchi this afternoon at her Pearl City home. Diagnosed a couple of years ago, Lisa is now fully dependent on a ventilator and feeding tube. Her mother and father are her primary caregivers in their home. My dad always held a special place in his heart for Lisa, as did she for him. I haven't been able to visit her since after my dad passed last year, so this visit was long overdue. Though I spent much of the time chasing Chase around their house, it was so nice to be able to talk to Lisa's parents, and most of all, to be able to talk to Lisa and be there for her during this difficult time.

Lisa's mom Jane spells out her words for her by watching Lisa's eyes, as she moves her eyes up for "yes" and to the side for "no". She told us about her recent outing to see Cirque du Soleil and her future plans to go for a drive around the island and take a dip in the ocean. She is really looking forward to seeing her niece graduate from high school this spring. She joked about her "expectant belly", and though she couldn't smile, she let us know that she was smiling inside.

Before we left, we held hands and listened to Na Leo Pilimehana's "Friends" song. Here we are pictured with Lisa and her mom Jane. I've also included a picture of Lisa with her friends, from one of her fundraisers she had a couple of years ago. A former preschool teacher, Lisa is a dear friend with a kind heart. You can tell from the photos and letters that decorate her room, Lisa is well-loved by many friends and family members. We hope a few people will be able to Christmas carol to Lisa's home this year.

You can copy and paste the link below to see a website some of her friends set up in 2006.
http://lisa.oceanit.com/mambo454/index.php

Hope you all have a Happy Thanksgiving. Give thanks for good health, family, and friends. Remember to surround yourselves with loved ones during this holiday season.

A "Peggy" Story

2008-11-23T23:32:00.000-08:00

We were putting away the chairs and tables. It was a well attended meeting and we ended in good spirits. The new member we were expecting to arrive did not. But Audrey (or was it Jennifer?) had cautioned that she may not come. There had been rumors circulating that the local artist, Peggy Chun, was recently diagnosed with ALS. Fortunately, no one else in the group knew she was supposed to come, so only I was disappointed when she did not.

We were almost done with our task when she breezed into the auditorium. She was dressed in slacks and brought a wind of energy into the room with her. She still had her hat on and was carrying a beach straw bag. She hugged Audrey and then, me. She effusively said her apologies for being late. We continued putting away stuff while she described the many things she had been busy with lately. She was busy, she said, preparing for her death.

I had never met this lady before but I thought then, that people must find it hard to stop her when she is in this kind of mood - expansive, garrulous, effusive. When she finally paused for a second, I asked her, "So, you are prepared for dying. But have you prepared yourself for living with ALS?"

She looked at me and blinked, as if she had never thought of that before. Then she said, "Oh, yeah. That's right." She blinks several more times, smiles, turns, and continues to speak with Audrey, the thought now tucked somewhere in consciousness.

I can't remember what else happened that night. But in the six years following her diagnosis, Peggy has taught us how to live with ALS: a life without fear, fun without reservations.

Farewell, Peggy...

2008-11-20T15:21:00.000-08:00

http://www.honoluluadvertiser.com/article/20081120/NEWS01/811200367/1001

Read the beautiful article written by Honolulu Advertiser's Lee Cataluna as we bid farewell to Peggy Chun. After 6 years of living with ALS, Peggy lost her battle last night, surrounded by much love from family and friends. With deepest sympathy to the Peggy Chun Ohana.

Rainbow

2008-11-19T14:51:00.001-08:00

I thought I would stay with the view from my window theme for a while longer. So here is a picture of a lovely rainbow from my bedroom window and a picture of me in my living room.

Rainbows have a special place in the hearts of all people who live in Hawaii. We are so lucky to live in a place where we can see rainbows almost every day. From my bedroom window I can look towards the mountains and see a rainbow on most days. As the rain from the Windward side of the island comes over the Koolau mountains and the sun shines from the West the synergy that creates rainbows comes into play. It is a beautiful sight and brings sensations of hope and joy that nature is alive and well.

Last Year's Christmas Caroling

2008-11-17T17:28:00.000-08:00

Here are some pictures from last year's Christmas Caroling. In these pictures, we were singing to Peggy Chun. It was so much fun, but we had to leave early (darn baby Chase!) and couldn't visit everyone. Hopefully, this year, we will make it all the way through the evening!

So, get your singing voices ready and come join us for our first practice on December 2nd at UH Saunders Hall Graduate Student Lounge at 5 pm.

Peggy's Early Thanksgiving

2008-11-16T22:03:00.000-08:00

Sunday, November 16, 2008

It was a celebration of life, for a woman who has fought a long, hard battle with ALS. She has lived with much love, laughter, compassion, and tenacity. As Peggy joined the party (which I'm sure went well into the night) on her hospital bed, under the tents on her front lawn in Nuuanu, friends and family gave blessings, sang songs, and shared stories about the well-known local artist. Many people from the ALS support group came out to show their support for Peggy Chun this afternoon.

Full moon

2008-11-13T19:11:00.000-08:00

I am new to the process of blogging but thought it might be fun to share some thoughts that I have on occasion. As I write different blogs you should learn more about who I am and my current journey with ALS.

A few nights ago I had the pleasure of sitting in my wheelchair by our Pali highway window and viewing the rising full moon. I thought of you able to view the same moon no matter where you are on this planet. In our apartment we have lots of beautiful windows. My favorite is the Pali highway window. It is right next to the kitchen and looks out towards Koolau mountains. In the lower portion of the window I can see the tennis courts and doggie park for the apartment across the street. If I tilt my wheelchair a little higher up the window I can see the Chinese, Japanese, Hawaiian-local cemetery. Then, the Pali highway with all of its rushing cars and lights. After that the houses claiming the hillside and then finally the mountains themselves. There is always a very strong breeze blowing through this window. It is cool and moist coming from the valley. Tonight, go outside to your local park for me if you can and look at the moon. Send me positive thoughts and I send them to you as well.

Vi's Adventure Trek and Run, October 18, 2008 at Kualoa Ranch, Oahu, HI

2008-10-18T17:16:00.000-07:00

This morning, more than 200 hikers/runners joined Vi Jones-Medusky, a multi-marathoner and surfer, who happened to have been diagnosed with ALS a few years ago, at raising funds to increase awareness of ALS and support for local families with ALS. The effort was done in cooperation with volunteers from Hawaii Ultra Running Team (HURT) and MDA Hawaii. Where dinosaurs used to roam in "Jurassic Park" movies, hikers/runners hoofed it, dodging cow "cakes" and breathing in that crisp, cool, clean Hawaiian air. For many, never mind the clock...they came to have fun and enjoy Mother Nature. If you click on the picture above, you can see the slideshow in a bigger size.