Talk at Tea Time

      It was a lovely Sunday afternoon when we gathered at my house to talk and have tea.  Nancy brought her lovely and dainty tea set. We sampled civet coffee,  strawberry kiwi tea, and spanish-style cocoa (tablea). My sister made cassava cake topped with flan that morning. Nancy took over KP duty to bake blueberry and pumpkin scones, to be drizzled with devonshire cream later. She arranged them on a platter decorated with lacy doilies, together with the madeleines she baked that morning.  Then Ronaele's scrumptious strawberries, cantaloupe slices and Bing cherries graced a tier of plates.  Nancy and Mama Lourdes couldn't help sampling the cucumber sandwiches they were making. all I did was add the edible mini-flower decor on the slices of sandwiches. Eric thoughtfully brought cocoa puffs from Liliha Bakery. When everyone expected were there, we sat at the table. Jan modeled the raised pinky for Eric to emulate. That started the laughs and the interesting discussion at table.  

       The afternoon tea party was soooo fun we thought we should have more of them in the future.  Mahalo to the few who spent part of their Memorial Day weekend at this event!

A bouquet of flowers from Nancy

Men enough to try drinking tea with pinkies raised: Jan and Eric

The delicious spread

Nancy made these: round blueberry and triangle pumpkin scones and madeleines 

Cucumber tea sandwiches

The ladies: Mama, Ronaele and Nancy

Caregiver Series 3: Medical Alert Systems -- A Tool for Quality Living

      Originally targeted to seniors who are prone to falls, medical alert systems (MAS) can also be useful in preventing the same from occurring in the ALS population.  Problems concerning balance, immobility, difficulty in communicating are among the many reasons why the use of MAS should be seriously considered.
      This month's support group meeting guest speaker, Dr. Cullen Hayashida, a gerontology sociologist by training, and President of Kupuna Monitoring Systems, a MAS distributor in Hawaii, introduced the topic to the group.  I took these notes during the meeting.

     Fall risks in the home such as unanchored area rugs, unlit walkways, and carpets/floors in disrepair, should be discarded or fixed.  The extent of harm due to the impact of falls can be mitigated by learning by practice, a proven "technique of falling." Expert parachutists are practitioners of this technique.  Although one reflexively puts out one's arms to break one's fall, by frequently practicing this technique, one may be able to override this reflex to protect one's body.  The technique involves holding arms close to the torso and distributing the impact of the fall on different parts of the body.
      Once a person has fallen, gradual getting up from the ground and aiming to get one's bearings- turning to one side, crawling on fours towards a stable chair or surface, grabbing the chair for support while getting up on one leg first, then the other, and sitting upright for a few minutes before moving away- aims at getting one's bearings first and over the initial shock (or embarrassment).

     Medical alert systems can vary from the very simple - bells, and baby monitors - to ones requiring mediation by call centers.  The latter consists of a button used by the person, a receiver base unit in the home and a central monitoring center.  The service starts with choosing the appropriate button to use - for example, worn as a pendant or on the wrist like a watch. It is important to evaluate the products based on reliability (Will it work when I need it?) and convenience (Will I be able to activate it?).   It is recommended that you use a local company for ease of interaction regarding the service; to rent rather than to own (as the technology is young and continues to update; and to choose a service that may be cancelled at any time.  Current research on products involves use of mobile alert systems that combines the use of fall monitors, cell phones and GPS locators, especially for those who are not home-bound.

     Medical alert systems can assist in removing some of the barriers for a person with ALS to live a quality life. It is worth checking out whether it would fit one's lifestyle and abilities.

Caregiver Crafternoon: A Time to Cherish in Memory

     Penny's was the place to be this Sunday afternoon.  When I got there, Ronaele and Kathy K were already picking out their cardstock while Penny was giving pointers on making choices.  The scent of Ronaele's newly baked bread was seeping through slightly open ziploc bag to let it cool some. The spring greens were already peeping off their plastic containers and I thought I saw some tapioca and fruit when I came in.  The table was piled with craft supplies and equipment. Soon Phyllis and Kathy O came, one after the other. Serious crafting began, accompanied by background chatter. Penny, acting as the craftmeistress that she is, gave advice here and there. We were sorry Nancy was laid down with a bad cold and Dale was enjoying a baptism in Waipahu.  We were sorry they were missing out on a wonderful way to relax, be creative and enjoy the company of lovely ladies. We are sorry, too, that you were not able to join. Perhaps, the next time. Meanwhile, look at how much fun we had!

The crafty ladies: Phyllis, Penny, Kathy K, Ronaele and Kathy O.

Phyllis at work

Kathy O sorting paper with Phyllis helping

Ronaele stamping it!

Penny helping with the cutter.

Owls!!!

The owl-making machine

Ta-da!

KathyK with her cards

KathyK and her products

Phyllis and her cards

me and my owlcards

Penny playing her other role: hostess

"Spirit" salad and tapioca/fruit

Home-made bread from Ronaele and Kathy K

Caregiver Series 2: When Dealing with Cold Weather

     About two weeks ago, a spate of cool weather blanketed Oahu. Out came my flannel peejays, relishing the thought of nice sleeping weather. But not Hubby who thinks 80 degrees is cold - an idea which makes me tease him, a half-Norwegian, "a disgrace to his Viking ancestors." Over the years, ALS took away much of his natural insulation -  muscles and fat - making him shiver away, even while the rest of us enjoy the "most perfect weather in the planet." So what to do in addition to the thick blanket and flannel sheets?

1. Socks and gloves, Hubby-style.  I found knee-high white plush socks at Bed, Bath and Beyond at The Grove in LA, years ago. Fortunately, I bought three pairs at once, because the next year, the knee-high style was discontinued. My children sent me what they could find online - ankle-highs.  So, I wash what I still have in gentle cycle. In a mesh bag. With the frilly underwear (mine, in case you were wondering). I am fiercely online looking for replacement, as socks are aging fast.

I found another use for the ankle-highs though.  I used to struggle with regular five-fingered gloves, making sure I guide each of his fingers into their proper sleeves, a feat which could one day qualify as an Olympic sport. So, until somebody sends me mittens, ankle-high plush socks will do. I just position the thumbs where the heels go.

And oh. They have to be white. Pastels would do, except my Macho Hubby cringes at the hot pinks.  Light colored fabrics are great for finding ants and other creepy crawlies fast.

2. Space-heaters.  Hubby has one at the office and two at home (I like spares.)  UH Saunders Hall is centrally ac'ed. Duct-taping cardboard on the vents works for a while until the law of gravity exerts itself. Hubby buys the heaters online from Best Buy at less than $50 each, from the same company each time.  However, the last one he bought blew our outlet - the plug heated up. We want to keep him warm; not cooked.

3. Environmental management: windows, ceiling fan vs. heatlamp.  This aspect is where, if we are ever going to part ways, this would be THE issue. Having grown-up in Manila (in a neighborhood Son calls a ghetto), in an apartment with few and grilled windows, I love the house we live in now, with its mostly windowed walls letting the fresh windward Hawaii air wend its way through the house.  When we remodeled the master bedroom to accommodate Hubby's needs, we mistakenly put his bed in the path of cross-ventilation.  Hence, at night, he wants the windows closed, and of course, I want them open.  Since all marriages survive on compromise, we have designated some windows, His and others, Hers. Like towels. When I turn on the ceiling fan right above my bed, he can have blazing the heatlamp above his own. (There's also a heatlamp over the potty, where he spends quite a bit of his lifetime, a Robillard trait it seems.)

So there. While I am trying to make light an issue which has the potential for creating discomfort and divorce, let's not forget the fact that when living with ALS, weather temperature is one factor to deal with.  Hubby's beef with 80degree weather notwithstanding, we are still lucky we live Hawaii.

Rememorables: Communication

    Rememorables, n., pl. (sing. rememorable) - 1. something worth remembering.  2. Note-worthy tips or information.  3. The title of this and succeeding posts about such items

     This month's support group meeting focused on "Communication Devices," which featured Kevin Forde-Nihipali's presentation of the Tobii machine as an example of high tech devices using eye-gaze technology, something valuable in advanced stages of ALS. During the discussion, I found myself taking down notes (I call them "rememorables."). These are some of them:

    1. Medicare pays for communication devices, except if the patient is in a hospital or nursing home.
    2. If you have a diagnosis of ALS, you are approved for Medicare within 6 months of applying, when not gainfully employed. Even if you are not yet 65!
    3. Voice-banking: a truly important, forward-looking, symptom-management activity, recommended to be done as early in the disease process as possible. It involves recording your voice uttering sentences, in laughter, making coos, chuckles, and other pleasant (...or not) vocal sounds.  It is important so your children and grandchildren will know how you sound like when you have a voice.  You can also say your favorite phrases and sentiments (for example, "I love you.") in your own voice. How cool is that?
     4. Results of experiments done to rehabilitate disabled veterans, such as mobility devices, have been used to design machines for the civilian disabled population.
 
    Would you like to share your notes from the last meeting?

Baby Sophia Grace Honzaki Shower

     It was a great afternoon - made for a party to welcome to our wild and wacky world, a new addition coming in May to the Honzakis, Her Beloved Highness (HBH) Sophia Grace. So Tutu Nancy, aunties and uncles were in attendance at Paul Gagnon's beautiful home in Kailua. It was also the setting for Tami and George's wedding shower last year, so it was only proper (according to Gerri) that we have it at the same place.  And like last year, we ordered Chinese from Kin Wah, onoliciously augmented by Tutu's yakisoba, Phyllis's potato salad and Armie's homemade rolls.  The moist and yumyum cake from Zippy's was paired with Penny's dreamy almond float (see recipe below).

Front: Robert Burkhard, Tami and George Honzaki and Paul Gagnon; Second row: Armie Burhard, Larry and Gerri Sylvester, Dale Mahi, Tanya Mau-Halsall, Divina Robillard, Nancy Fujino, Kathy O'Connor, Ronaele Whittington, Phyllis Johnson; Back Row: Brad Chun and Paul Mahi

Penny Chun takes Divina's spot while Divina clicks away.

 
     It was a also a day for catching up, as we rarely see the Mahis, Phyllis, the Burkhards, Tanya, and the Chuns, except for HALS events such as our annual yard sale, caregiver happenings, and socials.  So is it any wonder, why our socials are always something we look forward to and perennially a-buzzzzzzzz?

That was not Kathy's headgear for the day;
it is a lovely sculpture.
Phyllis laughs away.

The men in wheels chat away:
Paul, our wonderful host, and Robert.

Lovely ladies Penny, Tanya and Dale

   
     Tanya, our young mom closer in age to events brought about by weddings and storks, brought games such as the "Guess What's in the Diaper" game. Enjoyed by the group of course!

Dale inspects a diaper.

The Honzakis meditate on diaper on hand - one of the many in their future but not quite as delectably nice-smelling.

      For live action on the "Tinkle to the Loo" game (locally translated as "Hapai Making Shi-shi on the Lua"), watch Tanya's video, herein pasted from YouTube.

        


      The opening of presents drew lots of oooohs and aaaaahs as Tami lifted them from gift bags or ripped their paper wraps. Of course, the gift that got the most admiration was the handmade quilt that Aunties Ronaele, Phyllis and Penny, Tutu Nancy and I helped put together.

This princess is going to have lots of costume changes!

         The capstone of the afternoon is watching incredulity, wonder, and a mixed bag of reactions when I took out a bottle of gourmet civet coffee, also known as "cat poop coffee," to share.

                         

Hmmmmmm. Yum yum good.

   

Ronaele reacts when she hears she is drinking coffee
from berries that made it through a feline alimentary system!

     And here's the famous Almond Float by our very own Barefeet Contessa Penny Chun:

ALMOND FLOAT

Unflavored gelatin (4 T or 4 envelopes),

Water

1 1/2 cups sugar

1 1/2 cups (or 1 12-oz can) evaporated milk

3 T Almond extract

mandarin oranges, fruit cocktail, canned lychee

      Dissolve gelatin in 1 cup water. Set aside. Boil sugar in l cup of water. Add gelatin mixture to sugar mixture and stir until completely dissolved. Add milk and 4 cups water and almond extract. Refrigerate until set, about 4 hours or overnight. Cut into cubes and serve with the fruits.

            Using milk or soya milk or rice milk

Dissolve 4T. gelatin with l c. of water

Heat l c. of water with l l/2 c. of sugar and dissolve. Then add gelatin/water mixture till gelatin dissolves. 

Add 5 l/2 c. of milk and 3T. of almond extract.   Refrigerate for @4 hours till set.  Cut into cubes. 

Add fruit cocktail, mandarin oranges, lychee or whatever fruits you desire. 

   

   

      There were many fond memories made this day, the better to share with HBH Sophia Grace when she finally makes her royal entrance.

      Our thanks to Paul who opened his home again for this event; Gerri for being such a sweet hostess; Larry for sharing his gift of artistic decoration; Phyllis, Armie, Penny and Nancy for more food; Tanya for the fun games; and the supporting cast of aunties and uncles who made the afternoon a time to remember!

Caregiver Series 1: Becoming a caregiver

     Chances are if you are married to a person with ALS, you are a caregiver.  More likely you are a woman, since ALS affects more men than women.  Demographics is just one of the many predictors of whether you are a caregiver or not.  There are also some deeply held values called attitudes that will hold impact on whether a person is a caregiver or not.  Attitudes affect making the choice to be a caregiver or not.

      Choosing to provide care for a person with ALS (PALS) is a tough one to make.  What we know about ALS and what kind of care required informs us so.  We know now that ALS can be a debilitating, chronic illness, although it is commonly thought to allow an average lifespan of 3-5 years.  Many PALS live beyond 5 years – as much as an estimated 25% of diagnosed persons, thanks to better management of the illness with better knowledge of the disease process, better medical technology and strengthening of community and home/social resources.  We also know that the course of the illness and the muscle groups affected are highly individualized.  Because of this, it is hard to predict with reasonable success, the pattern, extent and areas involved from person to person, and therefore, renders pinpoint preparation tenuous.

     All these suggest that the caregiver will meet with real challenges – big, almost insurmountable ones.  But once the choice to be a caregiver is made, one must arm the self with the knowledge, skills and attitudes that will serve one well.

     Following these series is one of those ways.

We Sprung into Spring Last Tuesday!

   The weather turned out fine despite the gloomy skies and wind of the morning.  There was even a glorious sunset to boot, as guaranteed.  The ono grindz is legendary, no question.  When the group gets together, it is always a good time.  Adrianna, MDA Exec Director, introduced the newest members of the crew: Fundraiser Jade and Health Care Services Coordinator, Jeana.  Welcome aboard, ladies!

   Never mind that Phyllis J, Ronaele W, and Tanya M-H - kids Zach and Chase in tow - came a little bit late.  They were immediately engulfed in the camaraderie and conversation.  

   As always, these pictures will be our guideposts in memory and look forward to our next beach happening in October, when we "Fall into Fall."

    Meanwhile, next month (April) we go back to the Queen's Conference Center for our regular meeting.  Thank you, everyone who came to the beach, for your presence, potluck contribution and the fantastic fellowship!

Back: Dale Mahi, Tami Honzaki; Front: Jessie Koppel, Nancy Fujino, Jeana

Paul Mahi and Bruce 

Guests Angie and Cecilia

Kathy O'Connor

Our buffet table with KathyO

Jessie's ono pasta

From Divina's calamondin tree

Kathy O's yummy salad and chicken

Portuguese Bean Soup!

Nancy's veggie curry

The MDA Ladies: Jade, Adrianna, Jeana and Niki

The early bird group

Dale's captive audience

Look over here and smile!

Ronaele Whittington and Phyllis Johnson

Tanya Mau-Halsall with Chase and Zach

The shadows are lengthening as we chow down.

Starting a "Caregiver Series"

     If you have noticed, this blog provides a variety of information about the ongoing life of Hawaii ALS Support Group.  This group meets every second Tuesday of the month at the Queen's Conference Center, at the corner of Beretania Street and Punchbowl in Honolulu.  It started about 12 years ago, when Joyce Okahashi and I brought the need of organizing a group to the attention of then MDA Directpr Kathleen Hurtubise.  Since then, the group has been meeting regularly, thanks to the unrelenting support of MDA.

    One way to continue to help families with ALS everywhere is to provide a forum in which information about caregiving is offered and discussed.  This blog will start a caregiver series, in which relevant topics are introduced and reflected upon.  Comments are welcome; in fact, encouraged!

     What do you think?

Ushering in March

        Ever wonder why February is a such short month?  That's because we all can't wait for winter to go and for Spring to start! Who is not ready for the scent of flowers, gentle breezes, light showers? March cannot come any sooner!

        March 2, Saturday! Yes! The first Caregiver Breakfast of 2013 happens! A while back, in the early years of the Ohana, we organized breakfasts on selected Sundays, exclusively for caregivers. In private as well as  during meetings, caregivers had always expressed the need to get together and talk story.  I added the part where they do it while eating ono grinds.  Gathering caregivers together was also a way of empowering women, who generally, take up the responsibility of family caregiving. In the spirit of fun,  we joked that men who wanted to join needed to be bestowed the title, "honorary women." The many get-togethers that followed were always well attended, especially when we chose to alternate the breakfasts with afternoon teas.  Hoping to build on this success, we would like to reinstate these outings beginning this Saturday, again, for the same reasons - to offer respite, camaraderie and exchange of valuable caregiving wisdom.

     In the spirit of abandon created by our "March into spring", our regular meeting will give way to another social, "forced" upon us by reason of an unavailable room at the Queen's Conference Center.  Our "Spring into Spring" event will be held on Tuesday, March 12, 5:00 - 7:00 pm, half an hour earlier than our usual meeting time, at Ala Moana Beach Picnic Site #30. Conveniently located close to the handicap parking stalls and the comfort station, this spot has been our favorite.   Please bring a potluck dish to share.  A glorious sunset comes guaranteed.

     Then, on March 30, Saturday, we will have a baby shower for Tami and George Honzaki.  Tami's dad, Lloyd Fujino, had ALS; so did George's mom, Elsie.  Tami and George both came to support group meetings with their parents. When both parents passed away, Tami and George continued to come to support group meetings and participated in all events of the group.  We lovingly watched in the sidelines as a romance blossomed in our midst. We were happily there when they eventually walked the aisle.  And now there's a baby girl making an appearance by Stork in May. Some group aunties are stitching together a quilt for her.  Naturally, a baby shower is in the works at, where else? Paul Gagnon's home, where the wedding shower was held!  We will talk about the details on Saturday and will post them here...

     That should wrap up March and we look forward to April!!!

Ode. Once again

Why take two steps

The last one just ended

In a ditch;

The colors are off and

The note is written in sap

Take it easy.

Oh, take it easy.

The chemistry is gone

Awry.

But I hear you 

In seamless harmony.

I ain't going yet.

And when I do, I ain't going far.

Only to the closest star.

It's About Love

     'Tis the month of hearts, after all, so what's more apt a topic than love? Families living with ALS need oodles of love, not only to survive, but to thrive.  What kind of love is that which nurtures the ability to rise above mere existence?

     A nurturing love is the kind that takes commitment seriously. A person with ALS needs the assurance that he can depend on someone's caring. When one is vulnerable to a disease that saps physical vitality, erodes self-confidence, and keeps one feeling helpless, it is only too easy to succumb to despair.  To rebuild despite the daily destruction of muscle and image, one needs constancy in others.

     The only thing predictable about ALS is the fact that it is a willful, tireless, petulant and capricious enemy. Its course is highly individualized which makes it hard to generalize from the population it affects. One can only hope that, for the victim, it decides to be indulgent. Those of us who love need to persevere through the ups and downs that mark the course of the illness.

     When we say our love is strong, we must mean that it is strong enough to realize its imperfection - that it can wane,  not because it no longer cares, but because it also needs nurture. It should seek ways to renew itself - like a soldier in battle that understands he needs reinforcement with sleep, rest, food, respite, fresh supplies. We who love should seek to maintain equilibrium in ourselves so we can deal with daily chaos and an uncertain future.

     ALS is relentless. Our love should likewise be.

   

A Renewal

     I am back.

     For too long, I have been silent. It was both a result of arm-twisting and personal choice that I became the President of the Hawaii Chapter of the University of the Philippines Alumni Association.  Because I could not say no to the association elders, I decided should do something worthwhile with the two-year term.  For 2010-12, I would lead the organization to establishing a Professorial Chair in the University of the Philippines so that in some way, all Hawaii alums will have the opportunity to give back to the University to which we owed so much. We worked hard to reach our fundraising goal of $36,000, the minimum for a Professorial Chair.  At the end of our term in August, 2012, we reached our goal.

     When I became UPAA president, I knew my volunteer energies would be limited to just the work with UPAA. I limited my HALS involvement to its very basic requirements.  With fulltime caregiving for Britt, I did not have enough time, energy or desire to burn any more candles at both ends.

     With the help of our other HALS ohana (Nancy Fujino, Kimi Morton Chun, Jan Medusky and crew, Tami and George Honzaki, our Yard Sale Crew, and many others), we continued to work on our usual concerns:

     1. Volunteer to facilitate and engage the MDA ALS support group clients in the monthly meetings;

     2. Organize our “Spring into Spring” and “Fall into Fall” socials in March and September respectively;

     3. Hold the annual yard sale fundraisers at my home in the during the summers of 2010-12;

     4. Organize and lead the December Support Group Christmas parties at the Philippine Consulate General;

     5. Conducted my own fundraising every year calling on family and friends to donate to Hawaii ALS; and

     6. Helping with our ALS families’ concerns, such as condoling with those whose family member who passed, cheering up folks who were hospitalized for acute illnesses, and communicating outside of meetings, generally through email, with clients, caregivers and persons who were from out of state but who have heard of our existence.

     In those two years, I did not once come back to this blog.

     And now I am and I feel good being back.  In July, 2012, Britt retired from being Professor at UH. Retirement is a whole new ball of wax, let me tell you. But that could be the subject of another posting.  I will be posting at least once a week. I figured, if I work my neurons hard enough, they’d come up with something relevant to ALS families.  I can’t promise beautiful, edited prose, but just something useful to share.  And perhaps a haiku or two.

     This is the year of the snake. This is my year. It will be fun.

Mahalo!