Monday, July 30, 2007

Save the Date - Elroy's Birthday

Hope all you Peg's Legs can join us at the house to celebrate Mr. Chun's Big Day:

Drop by on Tuesday, August 7th 2007 at Elroy and Peggy's house to wish Elroy a Happy
80th Birthday!

We're having just a mellow Peg's Legs potluck for Elroy (we are also doing a
small dinner with his side of the family and a few of his friends the
following weekend).

The potluck party will be around 5:30...hope you can all join us to help
Elroy celebrate this milestone bday! It is our opportunity to say "thanks"
for all he is and all he does!

Climbing Trees

We had a big weekend. On Saturday, we went to the International Arborist Convention at the UH Manoa campus. They had competitive tree climbing finalists from all around the world competing there. They were actually climbing a bunch of the trees on campus. It was really cool. But the coolest thing was the "Fun Climb" they had set up on one of the monkey pod trees. Indy and Eric got all geared up and got to climb! Indy LOVED it as you can see from her BIG SMILE in the photo above. She was up about 20 feet in the air and wasn't scared at all! Like father like daughter. So awesome.

Last night we had dinner over at Peggy's house with Briar, Makena, Jen, Jade, Cian, and all of us. Marvel was on shift. Briar made fajitas - yum! Peggy had fun watching Makena read to the girls. See other photo above.

At the end of the night I found Cola with her whole head in the sour cream container. In fact, earlier in the evening I found her licking a bowl of potato chips on the porch. I moved it inside and forgot about it. I came out a few minutes later from the kitchen to find Eric eating the chips! He wasn't too pleased when I told him what I knew. And he didn't find it all at funny when I asked if he thought they were "low-sodium" when he was eating them.

I'm home today since Sawyer is a bit sick. He was up with fever all last night. He's doing better, but he's a little opihi. Lehua gave me an update by phone. She said that Cory was there this morning checking the cuff issues. They fixed the port, so now they are doing a 48 hour air leak test. NO ONE is to touch the cuff over the next 48 hours. Dr. Davis will discuss the issue with Peggy at tomorrow's doc visit. As we've said before, he doesn't want to change the trach unnecessarily since it will cause a lot of trauma.

Friday, July 27, 2007

Aloha Friday

Here are some photos from yesterday's Sea Life Park adventure. We had so much fun!

Just got home from Peggy's. We mostly played with Sawyer today. It was a fun day. Betsy McCreary is back - hooray! She read to Peggy from a fabulous book she got her called "Why Cats Paint". So Peggy.

We had a very special visitor this afternoon - Suzanne Maurer! It is always so fun to see her at Peggy's. She got to meet Lehua and Lisa for the first time.

Peggy was having some cuff issues last night. HCA's Eric called it in. Seems the blue stopper at the end of the balloon was stripped, so Cory had him tape it up and Cathy is coming this afternoon to replace it. We're still monitoring the cuff leakage which is a separate issue. Peggy also mentioned that she is still having problems with reflux.

We also were talking about Peggy's spelling and her eyes. We were talking about how it is getting more difficult to tell when she is looking up. Peggy has always looked up for "yes", but more and more she is now spelling out "y-e-s". So we were suggesting to her that from now on, when people ask her a yes or no question, she should look at the 6 for "yes" and the 3 for "no". Peggy was a little concerned that this would be limiting and confusing, but we assured her it was only for yes and no questions. I think she wants to make sure that she is still allowed to fully express herself, so please be sure to let her continue spelling after you get a yes or no. For example, Peggy may spell "no", but she might have more to say about it. In fact, let's face it, in MOST cases Peggy has more to say about it!

Have a great weekend everyone. We're planning to have dinner over at Elroy and Peggy's this coming Sunday night since Briar and Makena are in town (Briar is the wife of Eric's half brother Bruce and their daughter Makena is 12) - they are visiting from Santa Barbara

Thursday, July 26, 2007

Puna Play Day

Brought both kids over yesterday afternoon to play with Peggy. Marvel and Julie got Peggy up in the wheelchair and we spent the afternoon cruising in the living room. Indy even got to go for rides on the "Puna Float" (see photos). Lynn Cook came by to hang out. Julie read all of us one of Lynn's stories from Holoholo magazine and also read a story that Peggy wrote about Jade and Indy on a zoo adventure (see photo). Indy loved it. Our friend Mike dropped by for a visit too. When Elroy came home, he shared some of his homegrown apple bananas with us. They are very good and he is very proud.

I'm going to be chaperoning Indy's school field trip to Sea Life Park this morning. Or "Seal" Life Park as Indy calls it. Should be an adventure!

Tuesday, July 24, 2007

Goddess Glamour Mouse

Haleiwa Arts Festival was a great success! We did great and Peggy had such a fun time on Sunday at the Festival. People were thrilled to see her there and she was mobbed as usual.

Peggy's doing great today. She had her doctor visit and the only real issue was Peggy's concern about her cuff again. Dr. Davis would like to monitor it over the next week before making any decisions. It was checked last night and today and there was no leakage.

We hope you enjoy this photo of Peggy's doc visit costume. Peggy and Hanna have titled it "Goddess Glamour Mouse". Perfect.

Friday, July 20, 2007

Haleiwa Arts Festival This Weekend!

We're getting ready for Haleiwa today. Peggy will be going on Sunday to the show. Marvel and Lisa will be taking her. The cab comes to pick her up at 12. She can try out one of her new neck braces when she gets up in the chair. Not sure if they will work since we only tried them in bed and it was a bit awkward. We'll see.

Peggy's eyes are red and irritated today. Her theory is that if the eye patches aren't on tight enough on the overnight shift then her eyes open and they get scratched and therefore red/irritated. Hard to say. It is also very windy today - I wonder if things blowing in air get stuck in the PM Gel and irritate her eyes? Just another theory...

Peggy was a little worried about Hurricane/tropical storm weather last night, but Marvel ran the generator and its tank is full, so we're prepared in case of power outage. But all in all Peggy's mood has been great. I think we all agree that last week's meetings really cleared the air and have brought a great sense of relief. Ahhhhh...

Come visit us this weekend at the show! Do some Christmas Shopping!

Thursday, July 19, 2007

Peg's Legs Update: Peggy's Eyes

Here's the general update I sent out to Peggy's BIG email list...did I ever mention that I have around 400 people on the Peg's Legs Update list?!

Aloha Peg's Legs,

Hope everyone is having a great summer! Peggy has been busy (isn't she always!) with lists and projects. If you remember, she was working on a book with Shelly Mecum, well, we are happy to share that "The Watercolor Cat" will be going to press in just a few days and will be available for Christmas! So exciting. Peggy already has other book ideas in mind.

The Father Damien watercolor mosaic is another project on Peggy's mind. We are starting to recruit volunteers for the next stage of this big undertaking - the assembly of all the little bitty squares on the paper. Peggy is working on her detailed instructions and guidance for her assistants.

Peggy got to talk on the phone yesterday with her Dad and Sara who are having a quiet 90th birthday celebration this weekend. Hooray! Happy Birthday Joe and Sara! And speaking of birthdays...we have a couple more very special birthdays coming up...on August 7th Elroy will be turning 80! And on August 25th Sawyer will be turning 1! Yay for the Chun Boys!

It is important for us to let you all know that it is getting more difficult to read Peggy's eyes. As most of you know, she has only her ocular movement left. She is unable to blink her eyes and therefore they often become very dry and irritated making it difficult to use the spellboard with her on some days. She has not been able to use the ERICA computer for the past year because of her dry eyes.

The muscles in Peggy's eyes seem to be weak on some days. We have good days and we have bad days. As you can tell from above, she can communicate well enough to drive us crazy helping her with all her projects! Ha! We don't want to sound dramatic, but we do want to make sure that you understand that we have been talking with Peggy about what her wishes are once she loses her eye movement. No one knows when this will be - it could be weeks, months, or even longer - however, we feel good that we are planning with Peggy now while she can still communicate.

This is probably the hardest part of the journey for all of us. Thankfully, we are blessed with the amazing Peg's Legs caregivers/support team. Eric, Elroy, and I can't find words strong enough to express how deeply grateful we are for the care and love Peggy gets everyday. And not only do the Peg's Legs nurture and support Peggy each day, they nurture and support US and that's why we are still standing strong at year 5 of this journey.

Thank you to all of you for your continued love and support. Peggy sends her love to each and every one of you.

Me ke aloha,

The Chun Ohana

Meeting Recap

Thank you to all of you who attended last night's Peg's Legs Meeting. For those of you who missed the meeting, here is what was covered:

After we all chatted for a bit and ate some food, Cory and Cathy began the meeting with a very interesting exercise. Cory had us all tape our mouths shut with masking tape, then she taped a feather to each of our faces. Next, she taped us to our chairs in awkward positions. She asked us all not to talk and to really get into the moment of the exercise. Then Cory made up a shocking lie about Peggy - no one was sure what was going on - was she telling the truth? As we sat there unable to talk, Cory asked Cathy to walk around and poke us lightly with a pin. We all wanted to talk and ask questions and figure out what was going on...we were uncomfortable, the feather was irritating -- well, that was the point Cory was trying to make.

Cory instructed us to take off all the tape. She told us that she made up the things she said to shock us as part of the exercise. She asked us - did you want to scream out, were you uncomfortable? Well, this just gives you a little taste of what Peggy lives everyday. The reason Cory did this exercise is that she wants everyone to understand Peggy's wishes once she loses the ability to communicate with her eyes and becomes "locked-in". I will now explain that further. To do that, I will share a clinical synopsis from our meeting with Peggy last Saturday. This is all documented and will be added as an addendum to Peggy's current Advance Care Directive:

June 14th
Purpose of Meeting: To discuss with Peggy the fact that communication is becoming more difficult as she continues to lose the ability of using her eyes for communication and is becoming closer to being "locked in" as a result and to discuss her options and end-of-life wishes

Peggy was allowed total freedom to explain her wishes, ask questions, participate in the dialogue of defining elements of her end-of-life care plan, and freely made her own choices regarding the issues discussed. As a result, the following changes have been implemented and an end-of-life plan put into place.

1 - Code Status changed from FULL CODE to NO CODE (Do Not Resuscitate). Eric Chun to sign the NO CODE/DNR order as the MPOA/Health Care Proxy

2 - Peggy does NOT want to live and continue life support once she is locked-in and has no way of communicating and interacting with the world. She explained that she has experienced moments of feeling this and described it as "being buried alive waiting to die". She also stated that "The thought of being locked in is terrifying. I think about it constantly"

3 - Locked-in is defined by Peggy as NOT having any eye movement whatsoever and therefore having no way of interacting with her world or communicating her pain, discomforts, fears, and anxiety

4 - The core group for validating locked-in is Dr. Davis, 2 family members (one MUST be Eric Chun as the MPOA/Health Care Proxy), 2 RNs from Health Care Alternatives, and 2 Peg's Legs Private Hire/A Caregivers

5 - Once it is suspected that Peggy is locked-in, the core group will assess and validate. Once the group unanimously agrees that Peggy is locked-in, steps will then be taken to make her comfortable adn there will be NO aggressive medical intervention or treatment for infections. Dr. Davis described that Peggy will most likely become heavily sedated as there is no way of identifying pain or discomfort and she will be slowly weaned from her mechanical life support.

6 - Peggy does not wish to be locked-in for a prolonged period of time. At the time she becomes locked-in, Dr. Davis will make the actual time determination which will probably be several days and NOT weeks or months of being in the locked-in state.

7 - Peggy does NOT want her model of care to change from the medical model to a comfort care model UNTIL SHE IS LOCKED-IN. Until then, she wants agressive medical intervention and treatment for ALL infections. The only exception is CPR.

8 - Peggy has agreed to the Hospice referral "providing Clarence Liu can be a part of it". Clarence Liu, Chaplain agred to be directly involved in addition to Hospice staff.


Obviously, these are some very serious, sensitive issues that we wanted to share at the meeting and here on the blog as well. But we feel that it is very important that all of you - Peggy's extended family - understand what is going on with her and her care. We also want to share this information because we respect everyone's end-of-life philosophies and belief systems and if anyone feels conflicted about Peggy's choices and unable to support her choices, we want them to feel free to "opt out" now.

Most of the rest of our meeting was spent discussing details of Peggy's care and understanding the decisions above. To be clear, nothing is really changing with her care until Peggy's eyes become locked-in with the exception of her code status. This just means that if Peggy has a heart attack, she does not want CPR. It is VERY unlikely that Peggy will have a heart attack. If any other medical emergency occurs, you will still call Healthcare and/or 911.

No one knows how much time we have with Peggy. No one knows how long we have until her eyes become locked-in. It could be days, it could be months, maybe longer. The point is that we need to plan and we need to support Peggy and each other through this stage of the journey. Please feel free to ask me any questions you have about all of this and please communicate with each other as well - if you didn't attend the meeting, please talk with someone who did. It is more important than ever for our team to all be on the same page.

I feel like there is so much to say, but this is a lot to process as it is, so I will leave you with Peggy's words instead. I asked Peggy to write something for me to read out loud at the meeting. Here is her letter to all of you:

Dictated by Peggy on July 17, 2007

Dearest friends and caregivers:

I went to Catholic school for 16 years where I was taught the blessing of a fine handwriting skill; however, having lost that ability to communicate gives me absolutely no excuse for dereliction of another virtue--hello and thank you letters. Fortunately I see many of you on a consistent basis which allows me the illusion of having written every one of you at least once in the past year so accept my overwhelming gratitude and apologies for not writing more often.

At this stage of ALS I've come to realize that I've been so preoccupied with my own fears that I have excluded you, my caregivers. Recently it took a huge awakening about how I take even my hardest working and most loving caretakers for granted. Thank you Lolo, Kelly, Dr. Davis, Clarence, Cory, Cathy, Eric, and Kimi for being loving enough to have the courage to confront me with the truth of what I knew at a deeper level.

I have so much to say but my spelling slaves are exhausted!

We are working on a list of caregiver tips to use when I am locked in. I want you to know that we are bringing in Hospice and I have changed my ER status to NO Code. This is not as dramatic as it sounds. It simply means that I will have more opportunities to see Clarence. The No Code means that I won't be resuscitated in case of any heart related issues. I'm sure I don't need the additional neurological damage from a heart attack. God will let me know when it's time.

Know that the purpose of this letter and the meeting on the 18th is to prepare all of us for the likely case that I may become locked in.

Finally, do you realize what you have given me? An additional 5 years of a full life, not a stagnant life. I got to see my loving son wed our beloved Kimi, got to be here for the birth of Indy & Sawyer. And the birth of my twin sister's two granddaughters, Jade & Cian. How can I ever thank you for all you have done for me and continue to do for me everyday?

I love you all,

Tuesday, July 17, 2007

Remember - Meeting Tomorrow Night!

There was no doctor visit today since Dr. Davis just saw Peggy on Saturday. Peggy's eyes have been great today. She is busy working on projects and lists. We've been working on helping Peggy get her projects/lists more organized so that she can get the help that she needs. More on this later.

In our meeting last Saturday we talked about trying to do some time logging to see what we do in a day at Peggy's. The hope is that we can get some type of schedule created so that in the event that Peggy loses the ability to communicate, we will have an idea of what we do in a day. We can create a care schedule based on what we do now.

So I created some log sheets in 15 minute increments. I had Lolo and Ann start today at 2pm logging everything that they do - medical stuff and non-medical too - it is not easy to remember to write it all down! But hopefully after a few days, we'll see some type of pattern/schedule emerge. I'm hoping to have a sample of what we've logged so far typed up for tomorrow's meeting.

Speaking of the meeting - DON'T FORGET! Our Peg's Legs Meeting is tomorrow (Wednesday) night at Healthcare Alternatives. Look's like we're going to have a good turn out. We'll be providing food and drinks.

Remember - if you have any questions or issues you would like addressed at tomorrow's meeting, please let me know ASAP!

Monday, July 16, 2007

Is it Monday Already?!

It has been a long weekend and last week felt pretty long too. But now we're here on Monday with fresh new start and some important updates for everyone.

First of all, we had a meeting with Peggy on Saturday afternoon. It was Eric, myself, Dr. Davis, Cory, Cathy, Elroy, and Hanna who was our amazing speller for the meeting. As you know, it has been getting more and more difficult to read Peggy's eyes. We have good days and bad days and Dr. Davis is concerned that she is losing her ocular movement. She has definitely lost some range of motion in her ocular movement and so the smart thing to do is to start planning for the time when she can no longer communicate at all.

No one knows when this will be, but we all know that Peggy needs to use this time when she can communicate to express her desires should she get "locked in". I'm not going to go into the details of her decisions in this post - we will be discusssing all of this in detail at Wednesday's Peg's Legs Meeting. For those of you who can't attend, we'll be filling you all in after.

This is obviously a very emotional and intense subject for Peggy and for all of us. And yet, it would be foolish not to plan now when Peggy can still communicate. Peggy is a strong and couragous person, an inspiration to so many, but she is still human and has fears like the rest of us. She needs our compassion and our understanding as she faces her fears.

We all feel such a sense of relief after Saturday's meeting. It was sort of like finally dealing with the "elephant in the room". I think we've all been avoiding talking about the possibility of Peggy's eyes losing strength and what we will do if that happens. We all had the chance to say things that we've been wanting to for a long time and what a relief that is.

So here we are on this bright happy Monday - the first day of the rest of our journey! Please take a moment today to give yourself a hug and really feel our appreciation for each and every one of you. Thank you for all that you do and for your dedication and LOVE! XOXOXO

Tuesday, July 10, 2007

Doc Visit Report!

Peggy had a telemed doc visit today - yay! Here she is as Lady Liberty. Not much to report. We let Dr. Davis know the usual issues and he gave us the usual suggestions.

Kosuke came by and prayed today. Then we got a visit from our long lost friend - Mata! So great to see her. Hanna taped up Peggy's eyelids today to help keep her tired eyes open and bright, not droopy. She also used her artistic talents to give Peggy some very glam eyebrows which she drew on the tape. Peggy is looking very alert and exotic.

Have a great day! And mark your calendars - Peggy Chun Gallery will be selling stuff at the Haleiwa Arts Festival Saturday the 21st and Sunday the 22nd. Come visit us there! Peggy will be attending Sunday afternoon...

Peggy's Speech from 2006

Annie Likos had a great idea to put this speech that Peggy wrote last year up on the blog. Since we're training a couple new folks, this is great info about Peggy's care straight from Peggy...It is also interesting to flash back to May 2006. Enjoy!

"Living with ALS"
Written by Peggy Chun for the MDA ALS Seminar in Honolulu, HI
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

Monday, July 9, 2007

Head and Neck Support, Dental Guard, Cuff and Reflux

I'm here with Kelly today in the office. Marvel is with Peggy today. Eric has Sawyer so I've gotten more done today than I have in weeks! Kelly is working with Peggy on getting her more support while in the wheelchair. Peggy feels nervous when she gets in the wheelchair that her head and neck will flop around. We've been trying to work on this issue for a while. The problem is that we can't have anything too rigid because it will be uncomfortable, but anything too soft won't give enough support. Kelly has ordered a few different (and very affordable) neck braces that we are going to try. She's working next on some type of head support.

Peggy now has her customized dental guard to use to help when we roll her, transfer her, or put her in the wheelchair. It protects her teeth from clenching together and prevents her from biting down on the sides of her cheeks. Be sure to use this if and when you move her.

Peggy's been doing pretty good over the past few days. She has been periodically complaining about the cuff giving her trouble and some reflux issues. When Kelly was on last night she called in the cuff complaints. HCA had her take out the air and put it back in and she got 15ccs out and put 15 back in. Remember that if Peggy complains of reflux, take her off the tube feeding and sit her up. You should check to see if she has residuals in her stomach and if there is you can remove up to 40 ccs and put in 20 ccs of Mylanta.

That's about it. Peggy's eyes look great today! Yay!

Friday, July 6, 2007

Caregiver Meeting Info

Please join us for a

Peg's Legs Caregiver Meeting

Wednesday, July 18th from 6pm to 8pm

At the Healthcare Alternatives Office
156-A Mokauea Street 96819
Office number is 845-5700

We will be providing food and drinks.

Please RSVP to Kimi by email or by phone 561-1864

We strongly urge you to attend this meeting. We will be going over Peggy's care, communication, and more. This a great opportunity to be able to ask medical questions to HCA.

Please email or call Kimi if you would like any specific topics, questions, or concerns addressed in the meeting.

It's Aloha Friday...

Aloha Friday, Everyone! Cathy the HCA nurse stopped in to check on Peg this morning. No big news to report. Peggy's doing well. Her eyes were great today. Today we had Lisa training with Hanna from 10 to 2. Indy is back in school today. She was very excited to go back and see all of her friends.

We will be meeting a new nurse from Nurse Finders next Monday. FYI, Marvin is back from the Philipenes and will be taking Sunday nights 10 to 6am. Christie and Cathy will continue to take the 6 to 10am shift.

And please save the date...I'll be sending out a more formal email, but I wanted to give everyone a heads up that we are planning a caregiver meeting at the HCA office on Wednesday July 18 at 6pm. We haven't had a meeting in a long time and I we're due for one! I hope everyone will be able to make it to the meeting. These meetings are very important - they get everyone on the same page and also provide an opportunity to present medical questions to HCA. So keep an eye out for that email and save the date on your calendars!

Tuesday, July 3, 2007

No Doc Visit Again?!

Peggy was supposed to have her doc visit, but we got stood up again! Not sure what happened, but we left a message for HCA, so Catherine should be touching base this afternoon.

I got Peggy some new swim goggles at Walmart today. They are kids' swim goggles and they seem to be working well, though I think that we may need to cushion them a bit. Hanna took the googles off and has one eye taped right now. We'll see if the goggles work out. I got these since we decided that we are not going to use those eye bubbles since a pack of 10 costs $50! Yikes!

We have a possible new private hire named "Lisa". She is originally from Louisiana but moved here from Virginia a few months ago. Her boyfriend works with Rhea's husband KC. She checked this out today and is going to be training on a trial basis this Friday from 12 to 4pm.

We had some excitement today...Cola was snooping around in the kitchen while we were eating lunch and she got one front and one back foot stuck on a rat glue trap. She totally freaked out and went blazing around the house with the trap stuck to her paws. Poor thing was so scared. We caught her and dipped her paws in canola oil which seemed to get most of the glue off. She was a bit traumatized. Jack watched us intently trying to figure out what the heck was going on.

Last but not least - we restocked the caregiver fuel basket with yummy grinds, so dig in!

Oh, and Happy 4th of July, Everyone!

Monday, July 2, 2007

Happy July!

Indy and I popped in to the house to say hi to Peggy and get a few things done. Cathy was still there since she, Misty, and Christie from HCA will be covering that Sunday night shift that Helena used to have. She filled me in on a few things...

She noticed that some people have been soaking the yankaurs and reusing them which is not necessary since we get a supply of them each month. They are disposable and we really should be replacing them every week or so rather than trying to reuse old ones.

Cathy also noticed some heat rash on Peggy's thighs which is not surprising since it has been pretty hot and muggy this summer. We should just keep an eye on it. There was also a "funky" smell that seemed to be coming from under Peggy's fingernails and toenails. It didn't seem to be too bad on the foot that had the toe probs, most likely because we have been soaking that foot in salt water. She directed Hanna to give Peggy's hand and other foot a good soaking and see if that helps.

We really need to clip Peggy's fingernails - while they are gorgeous (Flo Jo would be proud) they are getting too long for the PulseOx and we might be dealing with a hygiene issue. If anyone is up for clipping her nails - go for it! Lehua has been our resident manicurist, but she is still out of commission this week.

In fact, we just spoke with Lehua today and she will still be out all week. Thankfully, Hanna has picked up a ton of shifts - thank you, Hanna - she will, in fact, be at Peggy's everyday this week which is why we've officially declared this "Hanna Week"...check your local paper for Hanna Week events and parade details.

Cathy also checked the cuff when she was there. She found 3 CCs missing and so inflated the cuff again. Just a friendly reminder - only HCA staff is authorized to touch the cuff.

Peggy's eyes were red and irritated today when we visited, but I don't think she had a very good night's sleep which always adversely affects her eyes. She did, however, look very sassy with her new summer hair cut from Joy who came by this past Saturday. Thanks, Joy!

That's it for now...I'd like to say WELCOME BACK to Suzanne Maurer - phew! So good to have you back!