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.

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.