September happenings in Aloha-land!

A. MDA ALS Support Group "Fall into Fall" POTLUCK Picnic

         Every year in September, we head out to our picnic spot at Ala Moana for our Annual "Fall into Fall" potluck.  The BIG reason is that QCC has no room for us on the second Tuesday of every September. That's why.  Always a great chance to have fun and socialize, as we welcome the ....ber months: September, October.....They could also be called the ....brrr months as fall weather starts nipping at our toes. So, please gear up to be at the picnic!! See you all there!

WHAT: MDA ALS Support Group Potluck
WHERE: Ala Moana Beach Park Site #30 (ewa-side of the Magic Island parking lot below)
WHEN: September 14, 2016, 5:30-7pm
WHAT TO BRING: Picnic food to share, chairs, keikis and tutus

B. ALSA-Hawaii "Walk to Defeat ALS"

    

     Here's another important annual event to participate in. Be part of what's sure to be the biggest ALSA-Hawaii Walk to Defeat ALS yet. Join an existing Walk team or start your own. Register today at http://web.alsa.org/2016HawaiiWalk

WHEN: Saturday, September 17, 2016, 8 am-12 nn.
WHERE: Kapiolani Regional Park, 2805 Monsarrat Ave., 
Honolulu, HI 96815

      The two-mile walk is open to the public and all funds raised will support the mission-critical priorities of The ALS Association Golden West Chapter in research, care services, and public policy initiatives.
When you Walk to Defeat ALS®, you directly impact the programs and services that benefit people living with ALS across the nation and right here in our community. This year the Hawaii community has decided to raise $100,000 to benefit these programs. We hope to see you there!

      If you need help registering or have any questions call Kahala Howser at 808.888.9627 or email khowser@alsagoldenwest.org.  Also, if you're unable to make it to the Walk this year, you can participate as a Virtual Walker or please consider making a donation to support ALSA-Hawaii's mission.

NEW! Support Group Meetings at QCC Format

       The MDA ALS Support Group Meetings have been going on since 1998, when Joyce Okahashi and I first started it. As all support group meetings, attendance waxes and wanes.  However, one thing is very clear: this support group has a life of its own, continuing through the years. Why?  It's because of the people who make it up.  They have been part of it, first, as members who have loved ones with ALS, but after their loved ones have passed, they remained active in the cause because of the friendship that has formed from being part of a wonderful group of caring people.  This legacy could be yours, too.  Friendships are not to be taken for granted. They cannot be bought; they are priceless.

     This upcoming meeting will need your valuable input as we try to organize our life with ALS, using Support Group Meetings as a tool to help us cope with that life. 

      I will be facilitating this and other meetings in the future until MDA comes up with a Health Care Services Coordinator.  I offered to continue facilitating the meetings as a volunteer for the following reasons: 

1. the recent MDA administrative realignments; 

2. to assist our lovely friend, MDA-HAWAII ED Jade Guess, provide the heartfelt service we all need;

3. to save our ALS community's access to the gorgeous QCC (including Harvey, of course); and 

4. to continue providing a SG service to the East, Central and Windward areas of Oahu. 

       Please help us inform other people of this development.  We will also try something new at the end of the meeting (*Teaser). 

       Come. Join. Be part of what could be something you will be proud of the rest of your life.

Godspeed, Rick Raker!

                                                                        July 21, 2016

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

Yardsale 2016: Making Money for Merry-making

For the past 8 years, the old guard of the Hawaii ALS Support Group has been fundraising  through a yard sale. We would have made 9 years, except we skipped one. We rested. At one point, we had a little over $3,000 in the bank. We gave it all to ALS Ohana when it started.

Now we are back to $1,000 from last year's sale.  On average, we make that much yearly. It all started with Nancy Fujino and Penny Chun. When I say "old guard," I mean veteran volunteers for ALS families. The kine that hang around even when their loved ones had long passed away. Nancy is a wALS like me; Penny's brother-in-law, David Johnson, passed away from ALS. Pretty soon, more volunteers joined, and now, after 9 years of doing this, we have our act together. And some money in the bank.

Sale earnings has always been used for our annual Christmas party - toys for the keiki's pabitin, Christmas decor, food and sundry expenses, to make our party extra merry, extra memorable, extra meaningful. I think there was also a year we distributed turkey dinners to those who couldn't make it to the party because they were home-bound.

Talk about helping to make the holidays more fun for everyone! The volunteers have a good time just getting together, catching up, sharing stories about our growing families and approaching retirement.

So why not come and enjoy the day? Donate. Volunteer (to set -up on Friday, the 24th). Buy. You won't regret it. Just check out the yard sale! Specifics in the next column.

Here is a picture of the album Penny made of the 2009 Yard Sale. We've lost Robert Burkhard, Vi Jones-Medusky, and hubby, Britt Robillard since. Bob used to be the "night supervisor" of the yard sale. With beer in his wheelchair cupholder, he would sip and watch while wife, Armie, sorted and priced late into Saturday morning. Vi came by to donate money and remind us whom we were working for. Son Daniel and DIL Natalie came by to help as well. And when Britt came home from the office on Friday set-up day, my ALS apron gets replaced by my caregiver togs.

2009: 7 years ago. Less gray hair, less pounds, way younger and sprier but always, our hearts remained the same: with our ALS families.

Widows of ALS (wALS): What can you do to help?

I guess the appropriate way to describe me, is that technically,  I am no longer a client of any organization that caters to ALS families. My husband. Britt, passed away in August, 2015.  Most service organizations such as the ALS Association and MDA identify their clients as the patient with ALS.

I am a widow of ALS (wALS). A different classification, that's for sure. Now what does a wALS like me do? One very common thing that widows do is to keep ALS in the rear-view mirror and drive away into the sunset. Quickly.  Been there, done that. Never again.

That's okay. I'm not in the business of moral judgment here.  

There are also widows like me who don't want waste. Especially good information from learning amassed in three decades+. The landfill of painful experiences is overflowing. I am just too stubborn to let ALS be.

So I am still hanging around the ALS picture thinking of ways I can be of use to anyone who is now living with ALS or is going to.

I attend ALS support groups; maybe there is something I can offer as a timely advice to attendees. I visited three current ALS patients, two at home and one at the hospital. ALS is socially isolating. 

I offer my help. Just let me know how I can do that. Yesterday, I offered to arrange a meeting between two caregivers so they can talk about their concerns. It is always helpful to connect people together. They don't always take the opportunity, but I can only do so much.

There is always opportunity to make a difference. Even just a small one.

What can you do to help? Name one in the comments section below. Then, do it!

Video: 3rd Annual "Lei of Remembrance" Memorial Ceremony

Our BIG mahalo to Jonah Okano and Marlene Nishime of Small Hour Films, LlC for creating the video of our Sign-waving and Memorial Ceremony for us to revisit. Each of the two earlier Memorial Ceremonies (2015 and 2014) were also documented by these young friends of ours and can be seen on YouTube.  Below is the link for your to view our 2016 Ceremony.

 https://vimeo.com/168711927/6254cee233 

Again. mahalo nui loa to all who have made our 2016 Memorial another memorable one.

Photos from our 3rd Annual Lei of Remembrance ALS Memorial at the State Capitol

How do we remember?

      There is a reason we set aside a day for remembering our dead. Perhaps because they never really left, and, even if they are no longer in flesh and blood, they are always with us in Other ways.

      Today, we remember those among us who passed away after living with the horrible disease, ALS.  Inspired by our kahunas, we start our ceremony with an oli, before embarking on our sacred undertaking. In the tradition of our aina, we string a lei of orchid blooms for every name that is proclaimed.  In solemnity, we invoke memories of our loved ones – in our hearts and minds. We end with a prayer – for God to bless our resolve to continue to care for those who are still with us and those that will come after them.

      Then, in friendship and fellowship, we partake of Providence in breaking bread together.

      We were meant to remember.

      How can we ever forget?

Picking Up Where I Left Off

Oahu now has three ADDITIONAL ALS neuro-specialists! Isn't that something?

First, there was Dr. Kevin Kimata whom we have known of out of the MDA Clinic when it was held at Castle Memorial in Kailua.  He is the first of the bunch and we have heard nothing but the best of him as a practitioner.

Then, two years ago, the MDA clinic moved from Castle Memorial Hospital to its present location at Queen's Medical Center outpatient clinic. Dr. Doug Miles became its clinic director. A very soft-spoken, thoughtful man, and knowledgeable doctor. Loving husband to Alison and papa to two young daughters.

The ALSA-Golden West Chapter out of Agoura Hills, CA opened its ALS Clinic doors at Kuakini Hospital a few months back and started seeing patients every second Wednesday of the month. Dr. Hirota, clinic director. I have yet to meet the guy but anyone backed by Terryn and Kahala, must be exceptional.

Recently, the Hawaii Pacific Neuroscience Center (HPNC) on the first floor of St. Francis-Liliha announced that Dr. Irisa Devine was joining their specialist staff out of Mayo Clinic as its expert on pediatric neurology and neuromuscular disorders. HPNC also has a geriatrician and palliative care specialist in the person of Dr. Pat Borman. I know her personally because she takes care of my 81-year old who has vascular dementia. 

Aren't we all lucky we live Hawaii, where at one time, there were none.