The purpose of the Lantern Festival, held Memorial Day weekend at Ala Moana Beach Park
Monday, May 29, 2006
Binging on Toxins
Monday, 29 May 2006
It was a busy weekend full of visiting and hanging out with friends. After yoga on Saturday, I hung out at home, until it got so hot and humid that I had to leave the house and go to the air-conditioned mall to sit and Starbucks and work on my computer. Went to hang out with Miya and the kids at Jenn's house while the adults played poker. Much slobber and cleaning up legos later, I headed out with some adults myself. I met some teacher coworkers, who are much younger partygoers than I am, at a bar downtown. We soon found ourselves in Waikiki, bar hopping to some of their favorites, which included an Irish bar, a country bar, and a hip hop bar, until the wee hours of morning. Ah, what fun it is to pretend I am 23 again! Too bad the fellas I met were only 23 too!
Sunday, I slept in past the 7 am and 9 am yoga class, but made it to the 11 am class. Good to get all those toxins out! That night, David and I went to eat at Big City Diner (Just to put more toxins in my body...Gotta love that big brownie sundae!) and then saw the movie "X-Men". Although I enjoyed the movie, I am finally learning that buttery movie popcorn is a toxin that my body does not like.
Today, hung out with Miya and baby Taiga in the afternoon, catching up with TV shows we missed and other friends that stopped by. Then, I took my tripod and cameras over to Ala Moana Beach Park for the annual Lantern Floating festival, a Japanese Buddhist ceremony. David met me there, and we took many many pictures starting at sunset until dusk. There were many other photographers out there trying to capture the beautiful ceremony. The lanterns, lit in memory of those who have passed, were set out to sea by individuals and by canoes. Hopefully, I can get my computer working so that I can finally post my hundreds of pictures that have been missing from my posts over the past months!
It was a busy weekend full of visiting and hanging out with friends. After yoga on Saturday, I hung out at home, until it got so hot and humid that I had to leave the house and go to the air-conditioned mall to sit and Starbucks and work on my computer. Went to hang out with Miya and the kids at Jenn's house while the adults played poker. Much slobber and cleaning up legos later, I headed out with some adults myself. I met some teacher coworkers, who are much younger partygoers than I am, at a bar downtown. We soon found ourselves in Waikiki, bar hopping to some of their favorites, which included an Irish bar, a country bar, and a hip hop bar, until the wee hours of morning. Ah, what fun it is to pretend I am 23 again! Too bad the fellas I met were only 23 too!
Sunday, I slept in past the 7 am and 9 am yoga class, but made it to the 11 am class. Good to get all those toxins out! That night, David and I went to eat at Big City Diner (Just to put more toxins in my body...Gotta love that big brownie sundae!) and then saw the movie "X-Men". Although I enjoyed the movie, I am finally learning that buttery movie popcorn is a toxin that my body does not like.
Today, hung out with Miya and baby Taiga in the afternoon, catching up with TV shows we missed and other friends that stopped by. Then, I took my tripod and cameras over to Ala Moana Beach Park for the annual Lantern Floating festival, a Japanese Buddhist ceremony. David met me there, and we took many many pictures starting at sunset until dusk. There were many other photographers out there trying to capture the beautiful ceremony. The lanterns, lit in memory of those who have passed, were set out to sea by individuals and by canoes. Hopefully, I can get my computer working so that I can finally post my hundreds of pictures that have been missing from my posts over the past months!
Friday, May 26, 2006
Friday with Friends
Friday, 26 May 2006
Had a workshop today on math strategies with the entire staff. Went to Dad's after and fed him "L.O's" as he calls it. There weren't enough "L.O.'s" (leftovers) for the both of us, so he made me eat them and make him a cup-o-noodle instead. He called me stubborn as we argued who would get the "L.O.'s". As I blew on the hot noodle soup before I served it to him, he scolded me for getting my germs on it. He said my brother does the same thing. But I questioned him on it, saying, "Isn't that what you do to cool off food? That's what you did for me when I was a kid." But he claimed "parental germs" are different. Go figure!
My good high school friend David came by to visit as he's here for the weekend from California. He gave me a beautiful necklace he carved from cow bone. I showered Dad, and David was impressed with my transferring abilities. Says he'll have to do strength training with me so I can start doing squats and other lifts.
I joined him and his friends for some delicious Hawaiian food at Ono's. Then we went to Bar 35 downtown for drinks. Had one drink and a shot. That's a lot for me! Thank goodness for the Pepcid AC I took prior! Stopped at Miya's afterwards to visit them as the gang played poker and Nicholas entertained himself and us by hiding in an empty box.
It's been so hot and humid lately, with hardly any breeze. Think summer is here.
Had a workshop today on math strategies with the entire staff. Went to Dad's after and fed him "L.O's" as he calls it. There weren't enough "L.O.'s" (leftovers) for the both of us, so he made me eat them and make him a cup-o-noodle instead. He called me stubborn as we argued who would get the "L.O.'s". As I blew on the hot noodle soup before I served it to him, he scolded me for getting my germs on it. He said my brother does the same thing. But I questioned him on it, saying, "Isn't that what you do to cool off food? That's what you did for me when I was a kid." But he claimed "parental germs" are different. Go figure!
My good high school friend David came by to visit as he's here for the weekend from California. He gave me a beautiful necklace he carved from cow bone. I showered Dad, and David was impressed with my transferring abilities. Says he'll have to do strength training with me so I can start doing squats and other lifts.
I joined him and his friends for some delicious Hawaiian food at Ono's. Then we went to Bar 35 downtown for drinks. Had one drink and a shot. That's a lot for me! Thank goodness for the Pepcid AC I took prior! Stopped at Miya's afterwards to visit them as the gang played poker and Nicholas entertained himself and us by hiding in an empty box.
It's been so hot and humid lately, with hardly any breeze. Think summer is here.
Thursday, May 25, 2006
Wednesday, May 24, 2006
My Students Perform
Thursday, 25 May 2006
After weeks of preparation, the students performed successfully this morning. The one kindergartner who I thought wouldn't be ready for the performance was the loudest one on stage, and our 6th grade emcee stepped up to the plate. Nicole, my assistant, worked on editing the video all day yesterday, and although the kids were a little stagefright singing "Old MacDonald Had a Farm" and "Over in the Meadow", they were cute, and the parents and kids enjoyed the performance.
I shared lots of summer information and tips on how to help their kids read. Students and parents requested copies of the video (and a couple captured bits of their own on their camcorders). It was a success thanks to the hard work of my part-time teachers and students! Whew!
Now, time to write sub plans for tomorrow and a year-end comprehensive report I've been putting off. All due tomorrow, but eh, let's tackle one day at a time please!
After weeks of preparation, the students performed successfully this morning. The one kindergartner who I thought wouldn't be ready for the performance was the loudest one on stage, and our 6th grade emcee stepped up to the plate. Nicole, my assistant, worked on editing the video all day yesterday, and although the kids were a little stagefright singing "Old MacDonald Had a Farm" and "Over in the Meadow", they were cute, and the parents and kids enjoyed the performance.
I shared lots of summer information and tips on how to help their kids read. Students and parents requested copies of the video (and a couple captured bits of their own on their camcorders). It was a success thanks to the hard work of my part-time teachers and students! Whew!
Now, time to write sub plans for tomorrow and a year-end comprehensive report I've been putting off. All due tomorrow, but eh, let's tackle one day at a time please!
Caffeine Craziness
Wednesday, 24 May 2006
I'll never drink one of those energy drinks again. Someone gave me those canned energy drinks. I don't know what compelled me to drink it this afternoon, but I did just for the heck of it. Anyone who knows me knows that I never drink soda or coffee. I don't drink caffeine. My body can't handle it. Well, by the time I got to yoga tonight, I was sick to my stomach, and my heart was racing and wouldn't stop.
I managed to get through yoga, although I felt like puking after each pose. The heat probably didn't help it either. By the end of the evening, I was ready to hurl. I'm glad I went to yoga though. Helps me rid my body of all those toxins. I'll never drink that much caffeine in one dose again.
I'll never drink one of those energy drinks again. Someone gave me those canned energy drinks. I don't know what compelled me to drink it this afternoon, but I did just for the heck of it. Anyone who knows me knows that I never drink soda or coffee. I don't drink caffeine. My body can't handle it. Well, by the time I got to yoga tonight, I was sick to my stomach, and my heart was racing and wouldn't stop.
I managed to get through yoga, although I felt like puking after each pose. The heat probably didn't help it either. By the end of the evening, I was ready to hurl. I'm glad I went to yoga though. Helps me rid my body of all those toxins. I'll never drink that much caffeine in one dose again.
Tuesday, May 23, 2006
Happy 59th Birthday, Dad!
Tuesday, 23 May 2006
Today is my dad's 59th birthday! We had a mellow celebration. My Uncle Gary brought over dim sum for lunch, and Liliha Bakery cocoa puffs for dessert (always a treat!). My brother and I then took my dad to a movie...and his buddy, Glen, joined us as he pulled up to our driveway to visit right as we were leaving...Great timing! We went to see "The DaVinci Code", which I thoroughly enjoyed. After too much buttery popcorn, Frank and Sharon and their son Gavin came over for dinner. My stepmom got Korean barbeque from Gina's restaurant, and we pigged out. Then, sang "Happy Birthday" and enjoyed chocolate cake and ice cream...and of course cocoa puffs. He didn't want any gifts, but my stepsister Lindsey made him a decoupage box with a painting of surfers on the front. He also got some tank tops. It was a nice day spent with friends and family. HAPPY BIRTHDAY, DAD!!
And, this also makes 1 year since I've moved to Hawai'i (last year, I arrived from Bangkok the day before my dad's birthday!).
Today is my dad's 59th birthday! We had a mellow celebration. My Uncle Gary brought over dim sum for lunch, and Liliha Bakery cocoa puffs for dessert (always a treat!). My brother and I then took my dad to a movie...and his buddy, Glen, joined us as he pulled up to our driveway to visit right as we were leaving...Great timing! We went to see "The DaVinci Code", which I thoroughly enjoyed. After too much buttery popcorn, Frank and Sharon and their son Gavin came over for dinner. My stepmom got Korean barbeque from Gina's restaurant, and we pigged out. Then, sang "Happy Birthday" and enjoyed chocolate cake and ice cream...and of course cocoa puffs. He didn't want any gifts, but my stepsister Lindsey made him a decoupage box with a painting of surfers on the front. He also got some tank tops. It was a nice day spent with friends and family. HAPPY BIRTHDAY, DAD!!
And, this also makes 1 year since I've moved to Hawai'i (last year, I arrived from Bangkok the day before my dad's birthday!).
Saturday, May 20, 2006
ALS Seminar
Saturday, 20 May 2006
Today was the annual ALS Seminar. I skimmed the last part of the keynote speaker's book, Waking Up, before arriving at the Queen's Conference Center. Terry Wise, a woman who lost her husband to ALS at age 35 and then had to come to grips with her own depression and near-fatal suicide, gave some important messages to caregivers and patients alike during her presentation. She said, "The day you tie your spouse's shoes, your marriage and relationship changes." She emphasized the "Give Me Flowers" lesson to emphasize the importance of communication, taking care of yourself, and accepting help. When she opened up for questions, my stepmom asked how she dealt with the intrusions, as suddenly their private lives were open up to caregivers and friends in the home. Terry said to take time for yourself and partner, to schedule sacred time for the both of you and indicate that to the other caregivers and friends. Although I found her book depressing (as her book was less about caregiving for her husband but more about her preexisiting issues she had to work through along with the caregiving), her speech was very helpful to the 70 or so in the audience.
As I read Wise's book, I wrote down these important quotes as well. She had "trained (herself) to unfeel the sounds corning from (her) lips". Having healthy arguments, making jokes, having emotional intimacy, or even a kiss, were no longer possible once her husband's body degenerated and even his speech entered paralysis. She said, "...because I was interpreting, I had to listen to the tone of his voice, a constant reminder that he was dying right before my eyes." Yet, this "honed (her) ability to internalize (her) suffering as (her) words became less of (her) own."
We met many new people, reconnected with OTs and PTs, saw some old faces, and various ALS clients in various stages, some worse than dad, some with still some physical movement, but slurred speech, and then some whose condition was better than Dad's yet who've had ALS longer. It's interesting how each individual's symptoms are different.
Kimi and Peggy Chun presented. Good to see them since we visited them at their house a couple months ago. Peggy, a famous local artist, who has a rare form of genetic ALS and after four years, is now fully paralyzed and only has occular movement of her eyes, emphasized that Share the Care groups are the way to go. She tried to demonstrate her Erica computer communication system, but there were technical difficulties. She's so vivacious and friendly, even if she can only move her eyes (yet she can't even close her eyelids anymore) and is on a ventilator. There were presentations on legal issues, like wills, durable power of attorney, advanced health care directives, and Medicaid as well. The seminar was very good and informative, and it's always good to see "friends".
Went to KMart afterwards to get storage containers and a vacuum to clean and organize my room. It's so dusty and humid here that I needed to repack some things. Since I didn't really eat all day, I gorged on a Korean plate from Gina's and then had a "kanak attack", which means I passed out for a few hours from a full tummy.
I went out with Linh and Ken to a birthday party of her friend Travis. It was interesting to people watch (felt like college days going to a house party), as we were the only straight people there.
Today was the annual ALS Seminar. I skimmed the last part of the keynote speaker's book, Waking Up, before arriving at the Queen's Conference Center. Terry Wise, a woman who lost her husband to ALS at age 35 and then had to come to grips with her own depression and near-fatal suicide, gave some important messages to caregivers and patients alike during her presentation. She said, "The day you tie your spouse's shoes, your marriage and relationship changes." She emphasized the "Give Me Flowers" lesson to emphasize the importance of communication, taking care of yourself, and accepting help. When she opened up for questions, my stepmom asked how she dealt with the intrusions, as suddenly their private lives were open up to caregivers and friends in the home. Terry said to take time for yourself and partner, to schedule sacred time for the both of you and indicate that to the other caregivers and friends. Although I found her book depressing (as her book was less about caregiving for her husband but more about her preexisiting issues she had to work through along with the caregiving), her speech was very helpful to the 70 or so in the audience.
As I read Wise's book, I wrote down these important quotes as well. She had "trained (herself) to unfeel the sounds corning from (her) lips". Having healthy arguments, making jokes, having emotional intimacy, or even a kiss, were no longer possible once her husband's body degenerated and even his speech entered paralysis. She said, "...because I was interpreting, I had to listen to the tone of his voice, a constant reminder that he was dying right before my eyes." Yet, this "honed (her) ability to internalize (her) suffering as (her) words became less of (her) own."
We met many new people, reconnected with OTs and PTs, saw some old faces, and various ALS clients in various stages, some worse than dad, some with still some physical movement, but slurred speech, and then some whose condition was better than Dad's yet who've had ALS longer. It's interesting how each individual's symptoms are different.
Kimi and Peggy Chun presented. Good to see them since we visited them at their house a couple months ago. Peggy, a famous local artist, who has a rare form of genetic ALS and after four years, is now fully paralyzed and only has occular movement of her eyes, emphasized that Share the Care groups are the way to go. She tried to demonstrate her Erica computer communication system, but there were technical difficulties. She's so vivacious and friendly, even if she can only move her eyes (yet she can't even close her eyelids anymore) and is on a ventilator. There were presentations on legal issues, like wills, durable power of attorney, advanced health care directives, and Medicaid as well. The seminar was very good and informative, and it's always good to see "friends".
Went to KMart afterwards to get storage containers and a vacuum to clean and organize my room. It's so dusty and humid here that I needed to repack some things. Since I didn't really eat all day, I gorged on a Korean plate from Gina's and then had a "kanak attack", which means I passed out for a few hours from a full tummy.
I went out with Linh and Ken to a birthday party of her friend Travis. It was interesting to people watch (felt like college days going to a house party), as we were the only straight people there.
Friday, May 19, 2006
Peggy Chun's Speech...Living with ALS
Just wanted to share Peggy's speech...She is an inspiration to those living with ALS, as her mom and twin sister both passed of ALS, and she continues to inspire youth through her painting and inspire people with ALS to truly LIVE and appreciate life to its fullest. Never take things for granted...People with ALS don't, that's for sure. (And to think, she typed this entire speech using her eyes!)
"Living with ALS"
Written by Peggy Chun for the MDA ALS Seminar in Honolulu, Hawaii
May 20, 2006
Aloha dear fellow ALS patients, treasured caregivers, medical staff, and loving family and friends,
First I would like to wish a special mahalo to MDA and to Queens. I’ve been a repeat customer often during the past four years and I am grateful for the compassionate care I’ve received throughout my battle with ALS. It’s easy to criticize the medical profession and our hospitals, but I can personally say that I have no complaints...except the food!
Because of Dr. Dan Davis, I have the good fortune of weekly video conference doctor visits. With a caregiver here I am able to receive a full examination through a computer and video camera. Imagine the effort this saves patient and caregiver alike. We have been able to catch pressure sores, rashes, colds, and even pneumonia early and treat successfully. Thank you, Dr. Davis and Queens!
Another expression of gratitude goes to Cory lee, owner of Health Care Alternatives and her staff. From the beginning I have been given the finest nursing care possible. A nursing agency of this caliber is essential for a vented ALS patient.
This is my fourth year dealing with perhaps one of the most challenging diseases for both patient and caregiver. It is a disease also dreaded by the doctors who can only feel frustrated by the lack of effective treatment, the FDA and our medieval government policies regarding stem cell research. I believe this gathering can offer hope and needed information to all faced with this, and other, neurological diseases. What every one of us needs is hope and today I wish to bring you just that by sharing what I've learned during this journey living with ALS. Note I say living with, not dying from, ALS.
When the diagnosis of ALS comes, most patients and their families are struck with fear and confusion. Unless a family member or friend has been hit with ALS, most of us have no idea of what is happening. Having experienced ALS with three family members, it still came as a shock, but I knew what to do. I called MDA. Immediately, they put me in touch with their ALS clinic at Castle Hospital. The visit included genetic testing. Your gene that turns on ALS is extremely important for all the research going on now. Dr. Kimata is brilliant and compassionate.
I have had the tremendous good fortune of being blessed with a loving family and supportive friends. I also have my health insurance with HMSA and they have been a caring and supportive provider. As I look back, I'm so glad that I considered health insurance important! Even if you lack some of this support, MDA is able to provide a wide range of information and assistance.
The sooner you accept that you will need assistance, the better things will be for you and your family. This brings me to a problem I've witnessed often in my illness - family secrecy and shame. If you as caregivers, and you, the patient, want to live a healthier life during the time we have left, you must learn to let go control and learn to trust that others can take care of you - EVEN IF YOU ARE SURE YOU CAN DO A BETTER JOB! Secrecy only makes the ALS more difficult to accept. It excludes friends and even people out there that you haven't met but who want to help. It creates loneliness and depression, which in turn, I believe, hastens death. Please try to open up to all who want to help.
That being said, there is another unforeseen situation that will most likely unnerve you and your family. Some of your closest friends and even family members will not come by. You must understand and accept that they can't deal with their emotions surrounding their perceived loss of you. It could be that they have not had to face the death of someone close or that their loss is too painful to imagine. I ask that you accept them and continue to love them. They don't know what to do. You may receive help in indirect ways so know that it stems from their own pain and grief. I know. When my mother was dying of ALS, I couldn't bear to be with her. I couldn't face that she would not be with us. I had flown home not knowing the seriousness of her condition. There's that family secrecy I spoke of earlier. She died six days later. The agony and denial surrounding my twin sister's death from ALS kept me from making my last days with her as meaningful as they should have been. I understand denial. Accept it in your loved ones and try to recognize it in yourself.
Speaking of caregivers, they are the gems of humanity. How could we possibly survive without them? Caregivers are motivated by compassion. As an ALS patient I am grateful for the incredible care I've received during the past four years. Caregivers need TLC. I’ve sometimes been so blinded by my own problems that I’ve failed to recognize burnout in my caregivers. ALS is so intensive for those who take care of us. Think about it...they have to be our voluntary muscles! We are like newborns, totally dependent on man and machine to stay alive. Thank your caregivers!
In February 2003, we received a book from my brother Matt, titled Share the Care by Sheila Warnock and Cappy Caposella. My sister Camille, a realist, my dear friend Martha Torney, and my daughter-in-law Kimi, put together an initial meeting of friends. Over the years, this list of friends, which started with 20 or so, evolved to a list of around 100 people who would become "Peg's Legs". Suzanne Maurer, magically schedules three four hour shifts a day. Shifts include an A person, trained in trach care and other nursing skills required, and a B person who assists the A by turning, helping with hoyer lift, and if time permits, indulging me by wrapping millions of gifts, wearing costumes for any occasion, making puppets, helping me paint, and assisting with the computers. Very few of these caregivers are trained nurses! We train them, many of whom are brand new friends. Before the vent, a regular group took me to the beach every Friday for a workout and lunch. They arranged for a beach ATV wheel chair to which they transferred me in a hammock made from a parachute! This Share the Care group has made it possible for me to lead a very full life. I urge you to get a copy of the book now. It will save your family.
MDA offers a monthly support group to assist both caregivers and clients alike. I bring this up now to again reassure you that comfort and support are there. Just sharing information makes dealing with the unknown doable. MDA offers grounding to the victims of ALS and to their family and friends.
While I am not a doctor and am not qualified to give you any medical advice, I would like to share some of the ways in which we’ve managed this illness and its various complications. It is important to deal with the physical changes of your progression on a proactive basis.
First, for me, a cane was needed. I accumulated quite an interesting set of canes! Next, came my cherry red walker with wheels. That walker went everywhere...New York, Oklahoma, San Francisco, the Big Island and Kauai. Well traveled, I'd say. By the way - do you know that there are websites devoted to travel for ALS patients?
Next came the day I broke my foot which permanently put me in a wheelchair. Again, MDA helped pay for part of the cost. Up to the time I broke my foot, I wheeled around on a yellow scooter, supplemented by the walker. MDA can help you locate all these resources and assist in funding.
I’d like to note that we use both Five Star Transcare and Hawaii Patient Transports to get me around town. Both companies are reliable and affordable and have caring and sensitive staff.
This next suggestion will save your caregivers' backs and enable you to get up for the activities you need, both for mental and physical health. I highly recommend getting a Hoyer lift! Your insurance may cover this expense. Using a hoyer keeps your joints flexible because you are bending every joint when being turned and lifted.
In the early stages of ALS, especially with upper body weakness first, it may be helpful and necessary for you to get a sleep test. This will enable you to qualify for a BiPap machine which, although unattractive, assists your sleep at night. You will be amazed at how much better you will feel, even after the first night. For some of you, the BiPap will give you the first good night's sleep in months or years. You cannot qualify for one without the sleep test. Queens Medical Center has a new restful sleep test area.
Next, I urge you to get an air mattress. Ours is a Hill Rom and because of it, I have never had a bedsore! Although I also give credit to my nurses and Peg's Legs for this – we cannot survive by air mattress alone! Unfortunately, most insurance companies will not cover an air mattress until you get a stage two bedsore which is outrageous.
It was about March of 2003 that my right hand, my painting hand, became paralyzed. Immediately, I started using hand and wrist braces to prevent my hands from atrophying in a curled position. I cannot stress how important it is to use these braces early! Once the hand curls it is extremely difficult to bend them back with physical therapy. Also the unnatural curling will cause pain later in upper arm muscles.
As soon as you can't walk it's time to get boots to prevent foot drop, another situation which can be avoided. I have minimal foot drop and no heel sores thanks to religiously wearing these foot braces that hold up the foot so that the heel touches nothing but air. Eventually, some, but not all of you may begin to experience pain, especially around the stoma area if you are on a ventilator. Also muscle cramps and pain in the buttocks, an area I refer to as my "sit down" bones. However, I have rarely experienced cramps, because since my diagnosis I have used a "chi machine" which is also called a stress reliever. I rest my legs on it and it gently moves them back and forth. I use it all night and I believe that the movement has not only helped prevent cramping, but also bedsores. The one we have is an "Evergain Stressbuster/Aerobic Exerciser".
Back to pain…don't be a martyr! Of course I have no ability to give medical advice and we all react differently to different medications. However, if you need pain management, please talk to your doctor. I know strong pain medication is controversial but if it allows me a more comfortable and, perhaps, a longer life, I personally think it is worth it.
As you begin to lose your ability to communicate, I recommend using a spell chart like the one I use (also called and “eye-transfer system”). We have tried several variations and have found this one the easiest and fastest. As your facial muscles weaken, your jaw may drop enough to prevent you from completely closing your mouth. You may also bite the inside cheeks. Ask your caregivers to be aware of your jaw drop. We designed a chin strap that keeps the jaw aligned. I am more comfortable when my mouth is closed airtight. If my mouth is open too long, the inside dries out and causes the saliva to burn. It can be quite painful. I don’t think we’ve come up with the optimum chin strap but we are trying.
It must be noted that when I lost the ability to move my jaw muscles, I became almost deaf, not realizing that my eustation tubes had collapsed. We discovered that the collapsed tubes prevented the eardrum from working. Good news! The doctor cleaned out the wax and liquid and inserted tiny tubes into the eardrum. Immediately it felt like everyone was shouting at me!
It took almost three years to accept that perhaps this disease was progressing. I was furious about my fallen brows! This was also in the period of time when even my jaws had weakened so much that I couldn't paint any longer. I started using the ERICA computer from Eye Response Technologies in May, a few months later. What a release it was to type and paint (digitally) again. How we take communication for granted.
Today I feel that I have a full life, treasuring the time with my family, enjoying visits from friends, painting with my ERICA and with brain waves, directing art projects, and writing. At this stage of ALS, I'm fully paralyzed, even my eye lids don't shut anymore but with special eye drops and protective gels for sleeping, my eyes work just fine. Again, we hit a bump and we find another solution!
ALS will take you and your family on an emotional journey from day one. It is easy to be seduced by quick fixes and medical quacks. I spent a small fortune unwisely in my first year trying protocols that simply couldn’t cure ALS. The money spent on a desperate search is regrettable. During the first twelve months of this disease I did some things that were rather stressful to my family. I also threw care to the winds spending money foolishly, not thinking about what a financial strain this illness would be on me and my family. I wisely turned over my finances to my daughter-in-law and to my son, who helped me to get things straightened out and start planning for the future.
I tell you some of these stories to illustrate how important it is to face your gradual loss of control and to be proactive about the changes you know are coming. I say this with great hypocrisy because I really didn't fully acknowledge my ALS until, fully paralyzed, I awoke on February 24, 2005 to what I refer to as The Day My Eyebrows Fell.
Also, be sure to have your legal affairs in order. Right after diagnosis I contacted an attorney and within a week I had an updated will, trust, and living will. I also met with close friends and over a very good wine and dinner; we planned a funeral and my own list of "Who Gets What". I cannot tell you how easy this will be on your family.
Many of you have probably have not yet reached the decision to go on the ventilator. It is a difficult situation at best. I am not able to advise you. Today I can only hope to help by telling my own story. If you go on the vent, use your additional time while alive to live, not vegetate in depression. We have the benefit of time.
This is the time to start recording your thoughts and your own philosophy by digital video, audio tape, and writing or typing. I cannot emphasize how important your words will be for your loved ones. On the day of my mother's funeral, we found a journal she had kept during her illness. It is a family treasure because it gave us insight about someone we dearly loved, but were too young to know her as adults. So try to complete letters and tapes before you lose your ability to write or speak and then continue to write with assistive technology.
This gift of knowing that death may be close should be spent dealing with the most important issues facing any family. I consider those to be confronting anger, denial, expressing love and finding peace. We are able now to communicate as a family but it took almost four years to get to this level because of my own unexpressed anger and denial. How difficult it has been for my family and friends. I was so engrossed in my own fear and anger that I became defensive and confused by the reactions of the people around. But, with the guidance of Clarence Liu of Hospice, we've broken through. I'm still ambivalent about dying but I'm not fearful. Besides, I have so many projects to work on that I'm reassured of a year or two! The Creator has a sense of humor!
Remember that ALS has given us the GIFT OF TIME so please use it well. And make the choice to LIVE WITH not DIE FROM your illness.
Thank you,
Peggy Chun
"Living with ALS"
Written by Peggy Chun for the MDA ALS Seminar in Honolulu, Hawaii
May 20, 2006
Aloha dear fellow ALS patients, treasured caregivers, medical staff, and loving family and friends,
First I would like to wish a special mahalo to MDA and to Queens. I’ve been a repeat customer often during the past four years and I am grateful for the compassionate care I’ve received throughout my battle with ALS. It’s easy to criticize the medical profession and our hospitals, but I can personally say that I have no complaints...except the food!
Because of Dr. Dan Davis, I have the good fortune of weekly video conference doctor visits. With a caregiver here I am able to receive a full examination through a computer and video camera. Imagine the effort this saves patient and caregiver alike. We have been able to catch pressure sores, rashes, colds, and even pneumonia early and treat successfully. Thank you, Dr. Davis and Queens!
Another expression of gratitude goes to Cory lee, owner of Health Care Alternatives and her staff. From the beginning I have been given the finest nursing care possible. A nursing agency of this caliber is essential for a vented ALS patient.
This is my fourth year dealing with perhaps one of the most challenging diseases for both patient and caregiver. It is a disease also dreaded by the doctors who can only feel frustrated by the lack of effective treatment, the FDA and our medieval government policies regarding stem cell research. I believe this gathering can offer hope and needed information to all faced with this, and other, neurological diseases. What every one of us needs is hope and today I wish to bring you just that by sharing what I've learned during this journey living with ALS. Note I say living with, not dying from, ALS.
When the diagnosis of ALS comes, most patients and their families are struck with fear and confusion. Unless a family member or friend has been hit with ALS, most of us have no idea of what is happening. Having experienced ALS with three family members, it still came as a shock, but I knew what to do. I called MDA. Immediately, they put me in touch with their ALS clinic at Castle Hospital. The visit included genetic testing. Your gene that turns on ALS is extremely important for all the research going on now. Dr. Kimata is brilliant and compassionate.
I have had the tremendous good fortune of being blessed with a loving family and supportive friends. I also have my health insurance with HMSA and they have been a caring and supportive provider. As I look back, I'm so glad that I considered health insurance important! Even if you lack some of this support, MDA is able to provide a wide range of information and assistance.
The sooner you accept that you will need assistance, the better things will be for you and your family. This brings me to a problem I've witnessed often in my illness - family secrecy and shame. If you as caregivers, and you, the patient, want to live a healthier life during the time we have left, you must learn to let go control and learn to trust that others can take care of you - EVEN IF YOU ARE SURE YOU CAN DO A BETTER JOB! Secrecy only makes the ALS more difficult to accept. It excludes friends and even people out there that you haven't met but who want to help. It creates loneliness and depression, which in turn, I believe, hastens death. Please try to open up to all who want to help.
That being said, there is another unforeseen situation that will most likely unnerve you and your family. Some of your closest friends and even family members will not come by. You must understand and accept that they can't deal with their emotions surrounding their perceived loss of you. It could be that they have not had to face the death of someone close or that their loss is too painful to imagine. I ask that you accept them and continue to love them. They don't know what to do. You may receive help in indirect ways so know that it stems from their own pain and grief. I know. When my mother was dying of ALS, I couldn't bear to be with her. I couldn't face that she would not be with us. I had flown home not knowing the seriousness of her condition. There's that family secrecy I spoke of earlier. She died six days later. The agony and denial surrounding my twin sister's death from ALS kept me from making my last days with her as meaningful as they should have been. I understand denial. Accept it in your loved ones and try to recognize it in yourself.
Speaking of caregivers, they are the gems of humanity. How could we possibly survive without them? Caregivers are motivated by compassion. As an ALS patient I am grateful for the incredible care I've received during the past four years. Caregivers need TLC. I’ve sometimes been so blinded by my own problems that I’ve failed to recognize burnout in my caregivers. ALS is so intensive for those who take care of us. Think about it...they have to be our voluntary muscles! We are like newborns, totally dependent on man and machine to stay alive. Thank your caregivers!
In February 2003, we received a book from my brother Matt, titled Share the Care by Sheila Warnock and Cappy Caposella. My sister Camille, a realist, my dear friend Martha Torney, and my daughter-in-law Kimi, put together an initial meeting of friends. Over the years, this list of friends, which started with 20 or so, evolved to a list of around 100 people who would become "Peg's Legs". Suzanne Maurer, magically schedules three four hour shifts a day. Shifts include an A person, trained in trach care and other nursing skills required, and a B person who assists the A by turning, helping with hoyer lift, and if time permits, indulging me by wrapping millions of gifts, wearing costumes for any occasion, making puppets, helping me paint, and assisting with the computers. Very few of these caregivers are trained nurses! We train them, many of whom are brand new friends. Before the vent, a regular group took me to the beach every Friday for a workout and lunch. They arranged for a beach ATV wheel chair to which they transferred me in a hammock made from a parachute! This Share the Care group has made it possible for me to lead a very full life. I urge you to get a copy of the book now. It will save your family.
MDA offers a monthly support group to assist both caregivers and clients alike. I bring this up now to again reassure you that comfort and support are there. Just sharing information makes dealing with the unknown doable. MDA offers grounding to the victims of ALS and to their family and friends.
While I am not a doctor and am not qualified to give you any medical advice, I would like to share some of the ways in which we’ve managed this illness and its various complications. It is important to deal with the physical changes of your progression on a proactive basis.
First, for me, a cane was needed. I accumulated quite an interesting set of canes! Next, came my cherry red walker with wheels. That walker went everywhere...New York, Oklahoma, San Francisco, the Big Island and Kauai. Well traveled, I'd say. By the way - do you know that there are websites devoted to travel for ALS patients?
Next came the day I broke my foot which permanently put me in a wheelchair. Again, MDA helped pay for part of the cost. Up to the time I broke my foot, I wheeled around on a yellow scooter, supplemented by the walker. MDA can help you locate all these resources and assist in funding.
I’d like to note that we use both Five Star Transcare and Hawaii Patient Transports to get me around town. Both companies are reliable and affordable and have caring and sensitive staff.
This next suggestion will save your caregivers' backs and enable you to get up for the activities you need, both for mental and physical health. I highly recommend getting a Hoyer lift! Your insurance may cover this expense. Using a hoyer keeps your joints flexible because you are bending every joint when being turned and lifted.
In the early stages of ALS, especially with upper body weakness first, it may be helpful and necessary for you to get a sleep test. This will enable you to qualify for a BiPap machine which, although unattractive, assists your sleep at night. You will be amazed at how much better you will feel, even after the first night. For some of you, the BiPap will give you the first good night's sleep in months or years. You cannot qualify for one without the sleep test. Queens Medical Center has a new restful sleep test area.
Next, I urge you to get an air mattress. Ours is a Hill Rom and because of it, I have never had a bedsore! Although I also give credit to my nurses and Peg's Legs for this – we cannot survive by air mattress alone! Unfortunately, most insurance companies will not cover an air mattress until you get a stage two bedsore which is outrageous.
It was about March of 2003 that my right hand, my painting hand, became paralyzed. Immediately, I started using hand and wrist braces to prevent my hands from atrophying in a curled position. I cannot stress how important it is to use these braces early! Once the hand curls it is extremely difficult to bend them back with physical therapy. Also the unnatural curling will cause pain later in upper arm muscles.
As soon as you can't walk it's time to get boots to prevent foot drop, another situation which can be avoided. I have minimal foot drop and no heel sores thanks to religiously wearing these foot braces that hold up the foot so that the heel touches nothing but air. Eventually, some, but not all of you may begin to experience pain, especially around the stoma area if you are on a ventilator. Also muscle cramps and pain in the buttocks, an area I refer to as my "sit down" bones. However, I have rarely experienced cramps, because since my diagnosis I have used a "chi machine" which is also called a stress reliever. I rest my legs on it and it gently moves them back and forth. I use it all night and I believe that the movement has not only helped prevent cramping, but also bedsores. The one we have is an "Evergain Stressbuster/Aerobic Exerciser".
Back to pain…don't be a martyr! Of course I have no ability to give medical advice and we all react differently to different medications. However, if you need pain management, please talk to your doctor. I know strong pain medication is controversial but if it allows me a more comfortable and, perhaps, a longer life, I personally think it is worth it.
As you begin to lose your ability to communicate, I recommend using a spell chart like the one I use (also called and “eye-transfer system”). We have tried several variations and have found this one the easiest and fastest. As your facial muscles weaken, your jaw may drop enough to prevent you from completely closing your mouth. You may also bite the inside cheeks. Ask your caregivers to be aware of your jaw drop. We designed a chin strap that keeps the jaw aligned. I am more comfortable when my mouth is closed airtight. If my mouth is open too long, the inside dries out and causes the saliva to burn. It can be quite painful. I don’t think we’ve come up with the optimum chin strap but we are trying.
It must be noted that when I lost the ability to move my jaw muscles, I became almost deaf, not realizing that my eustation tubes had collapsed. We discovered that the collapsed tubes prevented the eardrum from working. Good news! The doctor cleaned out the wax and liquid and inserted tiny tubes into the eardrum. Immediately it felt like everyone was shouting at me!
It took almost three years to accept that perhaps this disease was progressing. I was furious about my fallen brows! This was also in the period of time when even my jaws had weakened so much that I couldn't paint any longer. I started using the ERICA computer from Eye Response Technologies in May, a few months later. What a release it was to type and paint (digitally) again. How we take communication for granted.
Today I feel that I have a full life, treasuring the time with my family, enjoying visits from friends, painting with my ERICA and with brain waves, directing art projects, and writing. At this stage of ALS, I'm fully paralyzed, even my eye lids don't shut anymore but with special eye drops and protective gels for sleeping, my eyes work just fine. Again, we hit a bump and we find another solution!
ALS will take you and your family on an emotional journey from day one. It is easy to be seduced by quick fixes and medical quacks. I spent a small fortune unwisely in my first year trying protocols that simply couldn’t cure ALS. The money spent on a desperate search is regrettable. During the first twelve months of this disease I did some things that were rather stressful to my family. I also threw care to the winds spending money foolishly, not thinking about what a financial strain this illness would be on me and my family. I wisely turned over my finances to my daughter-in-law and to my son, who helped me to get things straightened out and start planning for the future.
I tell you some of these stories to illustrate how important it is to face your gradual loss of control and to be proactive about the changes you know are coming. I say this with great hypocrisy because I really didn't fully acknowledge my ALS until, fully paralyzed, I awoke on February 24, 2005 to what I refer to as The Day My Eyebrows Fell.
Also, be sure to have your legal affairs in order. Right after diagnosis I contacted an attorney and within a week I had an updated will, trust, and living will. I also met with close friends and over a very good wine and dinner; we planned a funeral and my own list of "Who Gets What". I cannot tell you how easy this will be on your family.
Many of you have probably have not yet reached the decision to go on the ventilator. It is a difficult situation at best. I am not able to advise you. Today I can only hope to help by telling my own story. If you go on the vent, use your additional time while alive to live, not vegetate in depression. We have the benefit of time.
This is the time to start recording your thoughts and your own philosophy by digital video, audio tape, and writing or typing. I cannot emphasize how important your words will be for your loved ones. On the day of my mother's funeral, we found a journal she had kept during her illness. It is a family treasure because it gave us insight about someone we dearly loved, but were too young to know her as adults. So try to complete letters and tapes before you lose your ability to write or speak and then continue to write with assistive technology.
This gift of knowing that death may be close should be spent dealing with the most important issues facing any family. I consider those to be confronting anger, denial, expressing love and finding peace. We are able now to communicate as a family but it took almost four years to get to this level because of my own unexpressed anger and denial. How difficult it has been for my family and friends. I was so engrossed in my own fear and anger that I became defensive and confused by the reactions of the people around. But, with the guidance of Clarence Liu of Hospice, we've broken through. I'm still ambivalent about dying but I'm not fearful. Besides, I have so many projects to work on that I'm reassured of a year or two! The Creator has a sense of humor!
Remember that ALS has given us the GIFT OF TIME so please use it well. And make the choice to LIVE WITH not DIE FROM your illness.
Thank you,
Peggy Chun
Professional Development for Teachers
Monday, 22 May 2006
Lead and helped facilitate a professional development workshop today on ESLL teaching strategies for our staff. For three hours, we talked about strategies, talked about the new Hawai'i ESL standards, and created lessons adapted for ESL students. The most powerful part was when we had a translator teach a lesson in her native Chuukese (a Micronesian language, and a large population of ESL students here in Hawai'i.). Teachers felt what it was like to be an ESL student, not understanding the lesson, and trying to figure out a new language. Many teachers and staff gave me positive feedback on the workshop and now have a renewed appreciation for what English as a Second Language teachers do for our students.
Lead and helped facilitate a professional development workshop today on ESLL teaching strategies for our staff. For three hours, we talked about strategies, talked about the new Hawai'i ESL standards, and created lessons adapted for ESL students. The most powerful part was when we had a translator teach a lesson in her native Chuukese (a Micronesian language, and a large population of ESL students here in Hawai'i.). Teachers felt what it was like to be an ESL student, not understanding the lesson, and trying to figure out a new language. Many teachers and staff gave me positive feedback on the workshop and now have a renewed appreciation for what English as a Second Language teachers do for our students.
Busy Bee
Friday, 19 May 2006
We've been working hard at rehearsing this week for our ESLL performance with the kids. We videotaped the kids today, as they read part of their animal reports with their animal hats on. I'll have to edit it on Monday. Plus, Monday, I am helping to facilitate a professional development workshop with district people on English as a Second Language strategies, so it's a busy week next week.
Bathed Dad early today as Lindsey has had state basektball tournament games to watch, so I've had to get him ready before my stepmom comes home. I went to Miya's for dinner and helped her watch the babies (Nicholas (4), Mason (1), Taiga (6 months), Aiden (3 months)) as the rest of the gang played poker. I'd much rather watch the babies than watch myself lose money. Took lots of pictures of the kids and had fun reading books to Mason.
We've been working hard at rehearsing this week for our ESLL performance with the kids. We videotaped the kids today, as they read part of their animal reports with their animal hats on. I'll have to edit it on Monday. Plus, Monday, I am helping to facilitate a professional development workshop with district people on English as a Second Language strategies, so it's a busy week next week.
Bathed Dad early today as Lindsey has had state basektball tournament games to watch, so I've had to get him ready before my stepmom comes home. I went to Miya's for dinner and helped her watch the babies (Nicholas (4), Mason (1), Taiga (6 months), Aiden (3 months)) as the rest of the gang played poker. I'd much rather watch the babies than watch myself lose money. Took lots of pictures of the kids and had fun reading books to Mason.
Tuesday, May 16, 2006
How Important is Eating and Living Healthy To You?
Wednesday, 17 May 2006
This afternoon, at my dad's, a telemarketer called and asked if my dad wanted to participate in a survey. Since he has to talk on the speaker phone, I heard the entire conversation, and I was laughing and making faces at my dad in the background. Here are some excerpts of the 20 minute phone call:
Telemarketer: Do you believe walking for at least 30 minutes per day is good exercise?
Dad: Yes
Telemarketer: How many minutes do you exercise each day?
Dad: Uh.....
Telemarketer: How many times do you eat out per week?
Dad: 6-7 days per week
Telemarketer: How many servings of fruit and vegetables do you eat?
Dad: 2 servings
Telemarketer: How many days of daily exercise do you do?
Dad: Uh, well, you see... I'm probably not a good candidate for this study. I can't.
Telemarketer: Has your doctor recommended exercise for you?
Dad: No
Telemarketer: Would you consider yourself very healthy, somewhat healthy, healthy, not healthy at all?
Dad: Somewhat healthy.
Telemarketer: How many hours of TV do you watch per day?
Dad: 15 hours. (!!)
Telemarketer: What do you do most of the day? Stand, walk, sit, etc.
Dad: Sit
My dad and I were laughing. He finally had to tell the lady that he has an illness that prevents him from exercising or doing any physical activity, being wheelchair bound. So he answered the rest of the questions with his "attitude" towards living and eating healthy. It was quite funny though. We thought, geez, this lady must think he's such a bum!
It's good that we can laugh about these things sometimes.
This afternoon, at my dad's, a telemarketer called and asked if my dad wanted to participate in a survey. Since he has to talk on the speaker phone, I heard the entire conversation, and I was laughing and making faces at my dad in the background. Here are some excerpts of the 20 minute phone call:
Telemarketer: Do you believe walking for at least 30 minutes per day is good exercise?
Dad: Yes
Telemarketer: How many minutes do you exercise each day?
Dad: Uh.....
Telemarketer: How many times do you eat out per week?
Dad: 6-7 days per week
Telemarketer: How many servings of fruit and vegetables do you eat?
Dad: 2 servings
Telemarketer: How many days of daily exercise do you do?
Dad: Uh, well, you see... I'm probably not a good candidate for this study. I can't.
Telemarketer: Has your doctor recommended exercise for you?
Dad: No
Telemarketer: Would you consider yourself very healthy, somewhat healthy, healthy, not healthy at all?
Dad: Somewhat healthy.
Telemarketer: How many hours of TV do you watch per day?
Dad: 15 hours. (!!)
Telemarketer: What do you do most of the day? Stand, walk, sit, etc.
Dad: Sit
My dad and I were laughing. He finally had to tell the lady that he has an illness that prevents him from exercising or doing any physical activity, being wheelchair bound. So he answered the rest of the questions with his "attitude" towards living and eating healthy. It was quite funny though. We thought, geez, this lady must think he's such a bum!
It's good that we can laugh about these things sometimes.
A Day Spent with Friends
Tuesday, 16 May 2006
After work today, I drove to Kai and Jason's house on Round Top to eat lunch. We enjoyed Zippy's chili and rice, salad, and fresh carrot juice on her deck, while commenting on the "cool" weather we're having (It was 65 degrees this morning.). She showed me her new addtions to the studio and the slideshow she made of their February Japan trip. We talked about her "business" ventures selling stuff on EBay, and how she has converted different areas of the studio to the "business". It was nice to catch up and relax.
I went to relieve my brother at Dad's, and showered and got him ready for Lindsey's basketball game, as Kamehameha competes in the State Tournament tonight. I met Nina at Phuket Thai. I thought it was fitting, as we last spent time together in Thailand when she came to visit me a year ago. We enjoyed some favorite dishes, while talking wedding stuff. She showed me a sample of the bridesmaid dress she would like to sew, and I showed her a variety of wedding invitations I've collected over the years. We talked wedding details for a few hours, (I'll be one of her bridesmaids this September) and caught up on friends as well, since I haven't seen her in six months.
Although I didn't go to yoga tonight, I felt like I got so much done, and I wasn't as tired as I usually am when I come home from my dad's. Sometimes it's just nice to get respite and spend a day hanging out with friends.
After work today, I drove to Kai and Jason's house on Round Top to eat lunch. We enjoyed Zippy's chili and rice, salad, and fresh carrot juice on her deck, while commenting on the "cool" weather we're having (It was 65 degrees this morning.). She showed me her new addtions to the studio and the slideshow she made of their February Japan trip. We talked about her "business" ventures selling stuff on EBay, and how she has converted different areas of the studio to the "business". It was nice to catch up and relax.
I went to relieve my brother at Dad's, and showered and got him ready for Lindsey's basketball game, as Kamehameha competes in the State Tournament tonight. I met Nina at Phuket Thai. I thought it was fitting, as we last spent time together in Thailand when she came to visit me a year ago. We enjoyed some favorite dishes, while talking wedding stuff. She showed me a sample of the bridesmaid dress she would like to sew, and I showed her a variety of wedding invitations I've collected over the years. We talked wedding details for a few hours, (I'll be one of her bridesmaids this September) and caught up on friends as well, since I haven't seen her in six months.
Although I didn't go to yoga tonight, I felt like I got so much done, and I wasn't as tired as I usually am when I come home from my dad's. Sometimes it's just nice to get respite and spend a day hanging out with friends.
Sunday, May 14, 2006
Happy Mother's Day
Sunday, 14 May 2006
Slept in and missed yoga this morning (Aw, shucks!), then went to pick up leis and a card. My brother Jay and I drove down to the Sheraton Princess Ka'iulani Hotel in Waikiki for Mother's Day brunch/lunch with Bernice and her family. There were about 20 of us altogether, and we gave out the leis to the mothers in the group. My Uncle Greg's group Po'okela played music on the outdoor patio for the guests and tourists to enjoy. It was a nice buffet lunch on this hot day, and we all stuffed ourselves to our heart's content.
When we got home in the afternoon, I worked on the computer, read the paper, and enjoyed my lazy Sunday. Was just going to call it a night, but Linh called to go to a movie. So I went to a late night flick of "Mission Impossible 3" with her, K and her brother Ken. It was an exciting action flick. I'll probably be tired tomorrow morning!
Slept in and missed yoga this morning (Aw, shucks!), then went to pick up leis and a card. My brother Jay and I drove down to the Sheraton Princess Ka'iulani Hotel in Waikiki for Mother's Day brunch/lunch with Bernice and her family. There were about 20 of us altogether, and we gave out the leis to the mothers in the group. My Uncle Greg's group Po'okela played music on the outdoor patio for the guests and tourists to enjoy. It was a nice buffet lunch on this hot day, and we all stuffed ourselves to our heart's content.
When we got home in the afternoon, I worked on the computer, read the paper, and enjoyed my lazy Sunday. Was just going to call it a night, but Linh called to go to a movie. So I went to a late night flick of "Mission Impossible 3" with her, K and her brother Ken. It was an exciting action flick. I'll probably be tired tomorrow morning!
Saturday, May 13, 2006
A Full Day
Saturday, 13 May 2006
Went back to the Honolulu Country Club this morning for an all-day seminar on ESLL (English as a Second Language Learners) strategies. Enjoyed a continental breakfast with other teacher colleagues and looked at educational vendor resources before the day started. We learned about brain research, which was really interesting, and language acquistion from local and mainland speakers. It was a very full day, but we learned about great things, and I always enjoy talking to other teacher colleagues and learning new strategies to take back to the classroom.
Got back home, just in time for Joel to pick me up. I joined him and his family as we celebrated his 31st birthday. We got to sit at the special "kitchen" table at Buca di Beppo and had fun singing 'Happy Birthday' to other party goers. His family is hilarious, and we just made ourselves at home as they knew all the waitstaff and managers. Joel and I practiced our dancing moves (I was horrible!!) on the dancing machine and shot a few machine guns at Dave & Buster's. It's been a few years since I've played video games! Then, about 10 of us (Melissa and her boyfriend joined us) headed to Waikiki to see the show "Cirque Hawai'i", a smaller version of Cirque du Soleil. Again, Joel's mom's friend Rick had connections, so we got to see the show for free. The tumbling, costumes, and choreography was spectacular. We hung out afterwards as they turn the lobby into a nightclub. We danced the night away, until about midnight. It's been awhile since I've gone dancing, so I had a lot of fun. Thanks for having a reason to celebrate, Joel!
Went back to the Honolulu Country Club this morning for an all-day seminar on ESLL (English as a Second Language Learners) strategies. Enjoyed a continental breakfast with other teacher colleagues and looked at educational vendor resources before the day started. We learned about brain research, which was really interesting, and language acquistion from local and mainland speakers. It was a very full day, but we learned about great things, and I always enjoy talking to other teacher colleagues and learning new strategies to take back to the classroom.
Got back home, just in time for Joel to pick me up. I joined him and his family as we celebrated his 31st birthday. We got to sit at the special "kitchen" table at Buca di Beppo and had fun singing 'Happy Birthday' to other party goers. His family is hilarious, and we just made ourselves at home as they knew all the waitstaff and managers. Joel and I practiced our dancing moves (I was horrible!!) on the dancing machine and shot a few machine guns at Dave & Buster's. It's been a few years since I've played video games! Then, about 10 of us (Melissa and her boyfriend joined us) headed to Waikiki to see the show "Cirque Hawai'i", a smaller version of Cirque du Soleil. Again, Joel's mom's friend Rick had connections, so we got to see the show for free. The tumbling, costumes, and choreography was spectacular. We hung out afterwards as they turn the lobby into a nightclub. We danced the night away, until about midnight. It's been awhile since I've gone dancing, so I had a lot of fun. Thanks for having a reason to celebrate, Joel!
Friday, May 12, 2006
Back to Normal
Friday, 12 May 2006
Yesterday afternoon, we safely delivered my dad back to my stepmom's house. So, today, it was "back to normal" at her house. My brother and I hung out with dad, ate lunch together, bathed him, and had visitors come by. Jennifer, the Health Services Coordinator for MDA, dropped off a couple of books for us. This woman who lost her husband to ALS at age 35 wrote a book of her experiences as a full-time caregiver after her near-fatal suicide attempt. Terry Wise will be the keynote speaker at the annual ALS seminar in a couple of weeks. My dad and I are going to read the book before we see her.
Tonight, I headed to Honolulu Country Club for a banquet dinner. The dinner was to honor the ESLL teachers of the year. It was a great dinner, full entertaining speeches, a Chinese lion dance, and lots of door prizes. Plus, I got to see other colleagues and see what great things teachers are doing in their ESLL classes.
Today is my friend Joel's birthday! Happy Birthday! (He was too tired to out....must be getting old!)
Yesterday afternoon, we safely delivered my dad back to my stepmom's house. So, today, it was "back to normal" at her house. My brother and I hung out with dad, ate lunch together, bathed him, and had visitors come by. Jennifer, the Health Services Coordinator for MDA, dropped off a couple of books for us. This woman who lost her husband to ALS at age 35 wrote a book of her experiences as a full-time caregiver after her near-fatal suicide attempt. Terry Wise will be the keynote speaker at the annual ALS seminar in a couple of weeks. My dad and I are going to read the book before we see her.
Tonight, I headed to Honolulu Country Club for a banquet dinner. The dinner was to honor the ESLL teachers of the year. It was a great dinner, full entertaining speeches, a Chinese lion dance, and lots of door prizes. Plus, I got to see other colleagues and see what great things teachers are doing in their ESLL classes.
Today is my friend Joel's birthday! Happy Birthday! (He was too tired to out....must be getting old!)
Wednesday, May 10, 2006
Making An Apology
Wednesday, 10 May 2006
According to the Webster's New Collegiate Dictionary, an "apology" is defined as "an admission of error or discourtesy accompanied by an expression of regret." As an elementary school teacher for the past six years, I have taught many lessons to youngsters on the purpose of an apology, the circumstances under which an apology is necessary, and have made children apologize to each other when an instance of disrespect, misunderstanding, or an argument has occurred. For some kids, saying those two words, "I'm sorry" does not mean much to them, as they have been reminded by many an adult, on more than one occassion, to do so, and more or less they do so to appease the adult and/or the situation. The hope is that, as the children grow older and mature, they will realize the power of those two words and how just those two little words can mean so much to someone in search of empathy and validation.
Sometimes, those two little words are all the person needs to hear in order to move forward.
There's that popular poster that says something like, "All I ever really needed to know I learned in Kindergarten."
Well, I put that into practice myself tonight.
Tomorrow, after nearly a week away, taking turns sleeping by my father's side, waking up at 3 am to move his limbs or help him urinate, hosing him off on the lanai with our dog Kaliko licking at his heels, being stranded in the hot house watching way too much TV, moving the collar of his shirt, the bottom or his shorts, his hand, fingers, legs, and toes at each request to make sure he was comfortable no matter what time it was, my brother and I plan to move my dad back into my stepmom's house.
Caregiving for someone who has lost nearly all his physical mobility and who currently only has his voice and breath on his side, is a challenge indeed. It is something that takes a team of committed, caring, patient, and selfless individuals to take on. It challenges people to face their own emotions, their vulnerabilities, insecurities, and ultimately, the strength within their selves. It is by no means an easy task. It is not something you are often prepared for. It is not something you have planned to do so suddenly in this phase of your life.
But, when the time comes, caregiving for a loved one either brings people closer or tears them apart. Communication is key when you are sharing the care. And, when things go awry, sometimes all you need to do is muster enough strength to remember what it was like in kindergarten, and just say those two little words. For, no matter how forced it may seem at the time, life is just too short not to.
According to the Webster's New Collegiate Dictionary, an "apology" is defined as "an admission of error or discourtesy accompanied by an expression of regret." As an elementary school teacher for the past six years, I have taught many lessons to youngsters on the purpose of an apology, the circumstances under which an apology is necessary, and have made children apologize to each other when an instance of disrespect, misunderstanding, or an argument has occurred. For some kids, saying those two words, "I'm sorry" does not mean much to them, as they have been reminded by many an adult, on more than one occassion, to do so, and more or less they do so to appease the adult and/or the situation. The hope is that, as the children grow older and mature, they will realize the power of those two words and how just those two little words can mean so much to someone in search of empathy and validation.
Sometimes, those two little words are all the person needs to hear in order to move forward.
There's that popular poster that says something like, "All I ever really needed to know I learned in Kindergarten."
Well, I put that into practice myself tonight.
Tomorrow, after nearly a week away, taking turns sleeping by my father's side, waking up at 3 am to move his limbs or help him urinate, hosing him off on the lanai with our dog Kaliko licking at his heels, being stranded in the hot house watching way too much TV, moving the collar of his shirt, the bottom or his shorts, his hand, fingers, legs, and toes at each request to make sure he was comfortable no matter what time it was, my brother and I plan to move my dad back into my stepmom's house.
Caregiving for someone who has lost nearly all his physical mobility and who currently only has his voice and breath on his side, is a challenge indeed. It is something that takes a team of committed, caring, patient, and selfless individuals to take on. It challenges people to face their own emotions, their vulnerabilities, insecurities, and ultimately, the strength within their selves. It is by no means an easy task. It is not something you are often prepared for. It is not something you have planned to do so suddenly in this phase of your life.
But, when the time comes, caregiving for a loved one either brings people closer or tears them apart. Communication is key when you are sharing the care. And, when things go awry, sometimes all you need to do is muster enough strength to remember what it was like in kindergarten, and just say those two little words. For, no matter how forced it may seem at the time, life is just too short not to.
Saturday, May 06, 2006
Caregiving at Home
Saturday, 6 May 2006
After a much needed yoga at 7 am (They have changed and added new weekend times…7 am seems a little early, but it worked out great since my dad is here now.) Went grocery shopping, got Dad ready for the day, and made breakfast for us. The first thing Dad said when he woke up was that he forgot how quiet it is up here. He said, compared to where he lives down in the valley, it is so serene here in the mountain. So quiet that he could only hear the clock ticking.
Jay left for work at 8 this morning, and will be gone for the next 24 hours. It’s nice being around family, as my dad’s two brothers and their families are our neighbors. Throughout the day, Uncle Gary and Uncle Ray stopped by. Gary brought lunch for my dad and hung out with him in the afternoon so I could run errands (My dad has noticed all the little things that need to be fixed and so sent me off to Home Depot to get that started. Besides, him being here has made me more motivated to get things done and clean up more around the house.) Uncle Ray came over and helped us replace and clean the fluorescent lights in the living room and kitchen.
The highlight of the day was taking Dad out in the wheelchair so he could peek over the lanai and check out the yard. He noticed what has died due to our failure to water, and told me what he planted, when, and how we need to upkeep various plants and trees. Kaliko was excited, and I enjoyed taking pictures of him and our dog. He said to her, “Remember, I used to walk you?” (Yeah, and he was THE only one who walked her. We’re such bad pet owners.) She licked his hands and posed for pictures. I captured the biggest smile on my dad’s face.
I cooked a simple dinner tonight, Dad and I worked on a crossword puzzle together (I was the secretary as he seems to be having even more difficulty holding a pen and writing these days.), and we watched lots of TV. It’s my turn to sleep on the couch tonight, as Jay doesn’t come home from work until tomorrow morning. I’m exhausted. We’ll see if I make it to 7 am yoga tomorrow.
After a much needed yoga at 7 am (They have changed and added new weekend times…7 am seems a little early, but it worked out great since my dad is here now.) Went grocery shopping, got Dad ready for the day, and made breakfast for us. The first thing Dad said when he woke up was that he forgot how quiet it is up here. He said, compared to where he lives down in the valley, it is so serene here in the mountain. So quiet that he could only hear the clock ticking.
Jay left for work at 8 this morning, and will be gone for the next 24 hours. It’s nice being around family, as my dad’s two brothers and their families are our neighbors. Throughout the day, Uncle Gary and Uncle Ray stopped by. Gary brought lunch for my dad and hung out with him in the afternoon so I could run errands (My dad has noticed all the little things that need to be fixed and so sent me off to Home Depot to get that started. Besides, him being here has made me more motivated to get things done and clean up more around the house.) Uncle Ray came over and helped us replace and clean the fluorescent lights in the living room and kitchen.
The highlight of the day was taking Dad out in the wheelchair so he could peek over the lanai and check out the yard. He noticed what has died due to our failure to water, and told me what he planted, when, and how we need to upkeep various plants and trees. Kaliko was excited, and I enjoyed taking pictures of him and our dog. He said to her, “Remember, I used to walk you?” (Yeah, and he was THE only one who walked her. We’re such bad pet owners.) She licked his hands and posed for pictures. I captured the biggest smile on my dad’s face.
I cooked a simple dinner tonight, Dad and I worked on a crossword puzzle together (I was the secretary as he seems to be having even more difficulty holding a pen and writing these days.), and we watched lots of TV. It’s my turn to sleep on the couch tonight, as Jay doesn’t come home from work until tomorrow morning. I’m exhausted. We’ll see if I make it to 7 am yoga tomorrow.
Friday, May 05, 2006
The Big Move (at least for now)
Friday, 5 May 2006
An early morning call from my stepmom before I even got to work led me to taking off from teaching for a couple hours so that my brother and I could go to their house for an important meeting. I finally had to leave to go back to school, with things left unresolved, but with issues and emotions aired out.
When I returned to Dad's after noon, a decision had been made, and my brother and I once again did a little counseling before we figured out what logistically had to happen. Now, more than ever, did a son and daughter have to help Dad. Jay headed home and to the hardware store to fix a broken step at our house. Meanwhile, I packed a suitcase full of clothes and medicine, bathed Dad (since I'm not sure how we'll bathe him at our house), and filled the van with the shower commode chair, wheelchair, and other daily things we needed.
Jay and his friend loaded the heavy recliner into his truck. We headed to our house five minutes up the hill, where my aunt and uncle helped carry things down. The last final thing to carry down the 85 steps was the most difficult logistical thing of all....My dad. Just as my dad used to carry us down those 80 plus stairs he built with his own two hands, my brother picked up my dad's 165 pound body and piggybacked him down the rickety wooden stairs down to our house on the side of the hill...the house we grew up in, the house with the wrap-around lanai and the most picturesque view of the valley and Waikiki and the Honolulu city lights.
We never thought my dad would get to see the house and property he worked so hard to build 30 years ago. But, for now, Dad will stay with us. Jay wheeled him around to give him the tour, since my dad has not seen the house since he got sick and found himself unable to walk, over a year and a half ago. He saw the new pergo and tile floors my brother did, my Southeast Asian influenced office, and I started sweeping and cleaning like a madwoman...just to make things a little cleaner for our special guest. Even though Dad is changing the deed into our names, it IS still his house.
We ordered food to be delivered from CPK, watched boxing on TV, and talked about the crazy party the neighbors were having for Cinco de Mayo. Jay is sleeping out on the couch tonight as Dad decided to just stay out on the recliner and he wakes up in the middle of the night. We don't have his hospital bed, so this will make transferring a little easier. I'm glad Dad can at least see Kaliko, our dog, and the house again. There's more room here, it's a little cooler, he'll get to enjoy the awesome view, we'll get "inspected" (perhaps he'll guide me in some yard work tomorrow), and well, he might just get some "Portagee" (towel-down) baths.
An early morning call from my stepmom before I even got to work led me to taking off from teaching for a couple hours so that my brother and I could go to their house for an important meeting. I finally had to leave to go back to school, with things left unresolved, but with issues and emotions aired out.
When I returned to Dad's after noon, a decision had been made, and my brother and I once again did a little counseling before we figured out what logistically had to happen. Now, more than ever, did a son and daughter have to help Dad. Jay headed home and to the hardware store to fix a broken step at our house. Meanwhile, I packed a suitcase full of clothes and medicine, bathed Dad (since I'm not sure how we'll bathe him at our house), and filled the van with the shower commode chair, wheelchair, and other daily things we needed.
Jay and his friend loaded the heavy recliner into his truck. We headed to our house five minutes up the hill, where my aunt and uncle helped carry things down. The last final thing to carry down the 85 steps was the most difficult logistical thing of all....My dad. Just as my dad used to carry us down those 80 plus stairs he built with his own two hands, my brother picked up my dad's 165 pound body and piggybacked him down the rickety wooden stairs down to our house on the side of the hill...the house we grew up in, the house with the wrap-around lanai and the most picturesque view of the valley and Waikiki and the Honolulu city lights.
We never thought my dad would get to see the house and property he worked so hard to build 30 years ago. But, for now, Dad will stay with us. Jay wheeled him around to give him the tour, since my dad has not seen the house since he got sick and found himself unable to walk, over a year and a half ago. He saw the new pergo and tile floors my brother did, my Southeast Asian influenced office, and I started sweeping and cleaning like a madwoman...just to make things a little cleaner for our special guest. Even though Dad is changing the deed into our names, it IS still his house.
We ordered food to be delivered from CPK, watched boxing on TV, and talked about the crazy party the neighbors were having for Cinco de Mayo. Jay is sleeping out on the couch tonight as Dad decided to just stay out on the recliner and he wakes up in the middle of the night. We don't have his hospital bed, so this will make transferring a little easier. I'm glad Dad can at least see Kaliko, our dog, and the house again. There's more room here, it's a little cooler, he'll get to enjoy the awesome view, we'll get "inspected" (perhaps he'll guide me in some yard work tomorrow), and well, he might just get some "Portagee" (towel-down) baths.
Thursday, May 04, 2006
Hanging out with Dad
Thursday, 4 May 2006
Brought over Chinese food for lunch at Dad's. Then brought him with me to a meeting back at school. He ran errands with me, and then I stayed a little later with him and Uncle Frank, his good friend who came over and brought sushi over for dinner. He stayed with him until Bernie came home from a movie with her girlfriend. It's nice to just hang out with Dad.
Brought over Chinese food for lunch at Dad's. Then brought him with me to a meeting back at school. He ran errands with me, and then I stayed a little later with him and Uncle Frank, his good friend who came over and brought sushi over for dinner. He stayed with him until Bernie came home from a movie with her girlfriend. It's nice to just hang out with Dad.
Wednesday, May 03, 2006
Yeah for Being A Teacher!
Wednesday, 3 May 2006
Today was Teacher Appreciation Day. Our PTO had a build-a-burger buffet from Teddy's burgers, guess how many office supply games, etc. I had to leave early, but found out the next day that I won some prizes. I won a bag of cookies for my correct guess on a container of paper clips, and my name was picked for a grand prize, a huge framed painting of a flower lei on the beach. I'm going to put it up on the wall in the house.
After my dad's, I went to Miya's and consoled her and caught up with some things. Then, I spent the evening with her and her family, eating Junji's famous chicken adobo, talking about education, TV and kids, etc. while watching American Idol.
Today was Teacher Appreciation Day. Our PTO had a build-a-burger buffet from Teddy's burgers, guess how many office supply games, etc. I had to leave early, but found out the next day that I won some prizes. I won a bag of cookies for my correct guess on a container of paper clips, and my name was picked for a grand prize, a huge framed painting of a flower lei on the beach. I'm going to put it up on the wall in the house.
After my dad's, I went to Miya's and consoled her and caught up with some things. Then, I spent the evening with her and her family, eating Junji's famous chicken adobo, talking about education, TV and kids, etc. while watching American Idol.
Tuesday, May 02, 2006
The Human Body
Tuesday, 2 May 2006
Dad pointed out to me today how his capillaries don't rush blood so much anymore. He had me press his arm with my thumb and notice how long it takes to get color back from the pressure point. Like toilet inspections, bathing always seems to be an "inspection" time as well, where we both notice all the changes in his body as this disease degenerates his already weakened muscles.
Went to yoga tonight, just so that my own muscles don't forget what to do. I can't skip more than a couple days, or else expect to suffer.
Dad pointed out to me today how his capillaries don't rush blood so much anymore. He had me press his arm with my thumb and notice how long it takes to get color back from the pressure point. Like toilet inspections, bathing always seems to be an "inspection" time as well, where we both notice all the changes in his body as this disease degenerates his already weakened muscles.
Went to yoga tonight, just so that my own muscles don't forget what to do. I can't skip more than a couple days, or else expect to suffer.
Monday, May 01, 2006
The Ending and a New Beginning
Monday, 1 May 2006
Today was the end of a relationship and the start of a new month, a new beginning. That first part always kind of sucks, especially when I come home to find my stuff on my uncle's doorstep. At least Mike brought my stuff over and carried them down the first set of ten stairs...Now I just need to carry them down another 70 or so more stairs. Although I haven't seen him in the past 2 weeks, we had that last talk, that closure talk, and that was that.
Kind of overshadowed the whole May Day thing. When I was in elementary school, May Day was such a big thing. Each class did a hula or dance and there was a May Day court (in fact, in 6th grade, at my school, I was the May Day Queen.). But, my school doesn't really do that anymore. And, I even forgot about the Lei Day celebrations at Kapi'olani Park. All those beautiful flowers, people competing to make the best lei, and the crowning of the Lei Day Queen.
Guess I just had other things on my mind.
Today was the end of a relationship and the start of a new month, a new beginning. That first part always kind of sucks, especially when I come home to find my stuff on my uncle's doorstep. At least Mike brought my stuff over and carried them down the first set of ten stairs...Now I just need to carry them down another 70 or so more stairs. Although I haven't seen him in the past 2 weeks, we had that last talk, that closure talk, and that was that.
Kind of overshadowed the whole May Day thing. When I was in elementary school, May Day was such a big thing. Each class did a hula or dance and there was a May Day court (in fact, in 6th grade, at my school, I was the May Day Queen.). But, my school doesn't really do that anymore. And, I even forgot about the Lei Day celebrations at Kapi'olani Park. All those beautiful flowers, people competing to make the best lei, and the crowning of the Lei Day Queen.
Guess I just had other things on my mind.
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