"Not Your Average Mail" from Nicole and Lance Wallace

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

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





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


Aloha!

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

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







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

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

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

Accessible Van Referral Info from Tracy Sherman

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



Hi Miss Divina!!

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



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

The Ability Center
4797 Ruffner Street
San Diego, CA 92111



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

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







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

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

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

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

Mahalos and love U!

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

Where has October gone? Part Deux

RAMP VAN RESOURCES

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

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

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

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

FRIENDS ARRIVE

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

Meet my friend, Karen, from UCLA.

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



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






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

Where has October gone?

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

OKTOBERFEST WITH CHESTER

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

Here's us in merry revelry:





SUPPORT GROUP MEETING

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




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

Much mahalo, one and all!

VAN DEMONS

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

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

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

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

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

TO BE CONTINUED....

Patrick on my Mind

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

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

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

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

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

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

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

Losing Lisa

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

And one so full of questions:

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

And on, and on, and on.

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

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

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

Godspeed, Lisa.

What Makes for a Successful Yard Sale

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

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

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

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

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

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

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

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

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

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

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

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

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