Thursday, February 28, 2008

Notes from Last Night's Meeting

Here are the notes from last night's meeting - this is long, but good! Enjoy!

Peg’s Legs Caregiver Meeting - February 27, 2008

We had a great turnout at last night’s meeting at the Healthcare Alternatives Office. For those of you that were not able to attend, here is some of the important information that we covered. Special thanks to Rhea for her excellent note taking!

First thing we did was read the letter that Peggy had prepared for all of you. I just posted this letter in its entirety in the previous post. I took some time to clarify a few points from Peggy’s letter regarding the ALS drugs that she discusses.

The “Malaria” drug that Peggy refers to is called “Pyrimethamine” and is already approved by the FDA as anti-malaria treatment. Dr. Dale Lange of Mt. Sinai Hospital and ALS TDI (the team that came to present the recent ALS 101 seminar) partnered with ALSGEN, Inc., a privately held drug development company in NJ, to conduct a clinical trial of the drug as a therapy for the familial form of ALS (like Peggy’s) caused in part by the mutation of the SOD1 gene.

Lange and ALSGEN have shown that in controlled high doses the treatment was effective in knocking down SOD1 expression in several patients (thereby stopping or slowing progression). However, the treatment has really only shown benefit to those in the early stages of the illness and many find that they cannot tolerate the treatment due to its toxicity/severe side effects. They are currently working on reducing the toxicity levels in the treatment.

As you read in her letter, Peggy has decided not to take this drug because of its likely side effects. Given that they have not seen the drug benefit someone at Peggy’s stage of the illness, the risks clearly outweigh any advantages to taking the drug.

The other drug treatment that Peggy refers to is the trial led by Dr. Timothy Miller from UCSD. This is a “gene silencing” treatment that in essence would slow or stop progression in as similar way as Pyrimethamine. Like that drug, this treatment (which Dr. Miller’s reports seem to indicate would be injected intraventricularly into the brain) would hopefully stop SODI expression.

Peggy has been in contact with Dr. Miller over the past year and half, following the progress of this trial. This drug is not yet FDA approved and they are still working with the SOD1 rat model trying to complete and report on the toxicology studies so that they may get FDA approval to begin the human trial.

Peggy would like to participate in this trial and Dr. Miller is aware of this. His most recent email to her said that he hopes to begin the human trial this Summer or Fall. He said that he will be in touch with Peggy, but was non-committal about her immediate participation. It should be noted that the FDA typically requires “safety trials” to take place first and ventilator patients do not qualify for these trials.

We took some time to appreciate the effort that it took Peggy to write this letter to the caregivers. It feels so good to hear Peggy’s voice and to hear that she is feeling good about her care. Many of us worry that Peggy gets frustrated with our inability to communicate well at times, but Peggy’s words seem to assure us that she appreciates whatever we are able to give. I think it is safe to say that Peggy gives us all an “A” for effort.

Stephanie cracked us up by saying that sometimes she and Joyce have a hard time communicating on Saturday mornings. She says it is like trying to communicate with a dolphin – “We know she’s trying to tell us something, but we just don’t know what!” But Peggy loves her Saturday morning routine with them and so things run smoothly for the most part. We all agreed that Peggy loves the variety of her care and that we need to focus less on what we’re not able to provide as individuals and more on that fact that together we provide her with the best care that any ALS patient on the planet has even received!

There was a lot of discussion regarding Peggy’s eye care and communication. It is the consensus that Peggy’s ocular movement has declined over the past 6-8 months. Some people have even reported seeing Peggy’s eyes tracking in opposite directions.

People find that Peggy’s left eye tends to get irritated more (some thought it was the right) and doesn’t seem to hold the PM gel as well. Lolo recommended that we don’t wait for Peggy to ask for PM gel and that instead we administer it as often as every 10 minutes if necessary. However, some caregivers report that they find that they don’t need to use the gel quite so frequently and that Peggy’s eyes do fine.

We discussed how expensive the PM gel is and how deeply this frustrates Elroy who is our PM gel supplier. The tubes cost $8 to $12 and Peggy often goes through one a day. We talked with Cory about finding something that is covered by insurance. She will be talking to Dr. Davis about an eye ointment that is often used in children that would be covered.

Lolo says that if her eyes are getting irritated, we should clear out eye by blinking, put Tobradex (Cory noted that we should really only be using the Tobradex in case of acute infection/irritation), close eye firmly, place a damp cosmetic round folded in half, then cover it with gauze and tape. Just make sure that her eye is firmly closed before you do this. We talked about how it is easier to read Peggy’s eyes when her eyes are taped up, but that this may be counter productive, since exposing her eye more leads to more dryness. Cory stressed that with all this touching of the eye area, it is critical that we all wash our hands well and often. Keep in mind that using the alcohol hand sanitizer and then touching Peggy’s eyes could irritate her eyes/dry them out if the alcohol has not totally evaporated.

Cory suggested taking photographs of routines such as patching Peggy’s eyes so that we have a visual reference for her care. She also suggested that we could use sterile saline eye flush (available at Longs) instead of Refresh liquid-gel to flush Peggy’s eyes. This would be cheaper and probably more effective.

We talked about ERICA. Peggy cannot use the PM Gel when she wants to go on ERICA since the ointment interferes with the infrared technology. We have had some minimal success with ERICA, but we are working on it and we are determined. The support guys at ERICA feel confident that someone even at Peggy’s stage of paralysis should be able to use the system with the right settings and enough practice.

Regarding communication, we talked about the need for a larger spellboard. This is something that I need to nag – oops, I mean ask – Eric about. We will be working on this. There was a lot of talk about how physically difficult it is to spell for long periods of time. People are developing sore backs, rotator cuff injuries, and more. There was understandably frustration and yet everyone wants Peggy to understand that no one is trying to stifle her. I think we are all aware that this is the only way for Peggy to communicate and express herself, and yet, there was a consensus that it would be helpful if Peggy could try to use more concise language and stick to “yes or no” responses when time is of the essence or her eyes are not working well.

One such time is the doctor visit. Cathy feels that if Peggy could be more prepared for her and for the doctor visit and use more concise language during this time it would be very helpful. Dr. Davis is beginning to have concerns about the time it takes to do these weekly visits, so we need to be more sensitive to their time. We came up with the idea of having a weekly form that Peggy can work on for the doc visits. This way, she doesn’t have to create a new list for him on scratch paper every time. There will certain questions on a form that she should answer every week – should save time and energy for all. I’ll be working on that.

We all talked about how important it is that we express our limitations to Peggy. If your back is hurting and you can’t spell, please let Peggy know this. She is a nurturer and so understanding. It is important that you set your boundaries so that you don’t burn out.

We discussed the current financial situation and fundraising. As you know, we have only enough in Peggy’s medical fund for 4 to 6 months of care and the business has not been doing as well as we would like. As we’ve talked about before, Peggy really won’t ever qualify for Medicaid/Medicare. Even if we stripped her of her assets and she divorced from Elroy, there is a waiting period of 5 to 7 years before she would qualify. We’ve checked with her attorney and CPA regarding this issue and they feel that this is not really an option for Peggy. There is no home that we could put Peggy in that would save us money. There really is no “plan B”. We fundraise or we fundraise.

You’ve all heard about the big plan for the art and yard sale. We all agreed that we’re going to need lots of man/womanpower to pull this off – getting things sorted next week and also manning the sale. Since this is a public sale, we need to make sure we have lots of people keeping an eye on things in the house. Andy suggested that we don’t allow bargaining, at least for the little stuff – if something is 25 cents, then that’s the price, end of story – it’s a fundraising sale for goodness sake!

I talked briefly about the email newsletter that we’ll be doing, the donation button/page that we are putting on our website. There were some other business/fundraising ideas thrown around like Rhea’s idea of having a coupon form at our craft shows similar to the ones at the grocery store checkout (“would you like to donate $1 to Peggy’s care) and also the idea of putting another call out for lost Peggy original artwork that has never been scanned on the website.

Lynn Cook filled us in on an exciting donation opportunity. Some of you know that recently Peggy designed a necklace for a jewelry maker named Stacey. Stacey, who is just amazing, wanted Peggy to design something that could be auctioned off at the Heart Ball. The Father Damien mosaic and the “Starry Night” sky inspired Peggy’s design for the necklace. Stacey brought the finished piece over to show Peggy and it was so gorgeous. Peggy named it “Magdalena”.

Well, they ended up not using the necklace for the Heart Ball so it could be used to raise money for Peggy’s care. How wonderful is that?! So, we are planning a raffle, a.k.a. “donation opportunity”! There was also the idea of auctioning it off on EBay. We will keep you all posted as this comes together.

This also gave us the idea that perhaps we could get the money together to manufacture bracelets or earrings that people can buy to support Peggy – similar to the Swarovski crystal Relay for Life bracelets.

As you can see, it was a meeting jam-packed with lots of great ideas and enthusiasm. I know that I haven’t covered everything, but I think I’ve hit the most important points. The most important thing that I want everyone to know is how much the Chun family appreciates each and every one of you. I feel so blessed to be a part of such a remarkable group of people. I am in awe; not only of the way you nurture and support Peggy and the Chun family, but most importantly the way you nurture and support each other. That is the miracle of the Peg’s Legs and I am so proud to be a part of it. We love you all. Thank you.

Letter to Caregivers from Peggy

February 26, 2008

Dear loving family and friends,

I am delighted to tell you that I am almost up to par with ERICA again. It’s been a long time—almost a year and a half. I have learned how to apply eye drops in a way that allows the glint to stay in my eye. You all know the importance of the glint! Also, it costs about $10,000 a month for my care after insurance. This is why we fundraise. So we are planning several fundraising events. Look for details on the blog at Bookmark the address—it’s a hot one. It’s a hoot!

Let me tell you how I survive a day at a time happily. It’s you! How many people do you know who get to spend quality time with their best friends everyday? I have that privilege everyday. I actually get to know my friends and enjoy them. I am never bored or lonely. Even when I have a lot of things to do I find that giving in and participating in the conversation is so much fun. At 61, I am finally learning to relax thanks to you. I am awed by the power of your love.

I am happy. However, to think that I am a “Pollyanna” would be totally unrealistic. My mood most days is cheerful. I am passionate about my family, especially my grandchildren and grandnieces/nephews. I am constantly thinking about color and my head is swimming with ideas. I can hope because of you, my family, and treasured friends. I find that my greatest source of hope is faith in The Creator.

I realize that many of you feel frustrated because of the difficulty in reading my eyes. First, I can remind you that I am looking at the box that has the letter I am looking for. Then I look at another box—that box simply shows you the number for the letter I want in the first box. Sometimes I will look at a box for quite awhile it can mean that I either want the letter and number in the same box, or I am stuck. The above mentioned letters with the twin numbers are 1-1 (A), 2-2 (F), 3-3 (K), 4-4 (P), 6-6 (Z). If you’re not sure if I am stuck, just ask for example “is F correct”? I know how hard this seems, but I enjoy talking to each of you. I think you could learn a few basic words such as: yes, no, pm, gel (refresh liquid gel), hi, yankauer, suction, I love you, kisses. Cold (more blankets), hot (ask if I want you to pull all blankets off or just pull down to legs), cuff (ask if tubes need to be pulled off and put back on because of gurgling and tubes may possibly be twisted). Be sure to put the yellow sponge back after pulling the tubes off.

Know that I do not get frustrated when you can’t read my eyes. It is different for me because I feel so desperate to communicate. Each letter is a tiny victory.

I know that you all have questions for me, but I also know that many of you are afraid to ask. Questions such as: issues dealing with end of life, what it’s like to be locked in and my choice to use new ALS drugs. I would be happy to talk about any subject matter you choose. By the way, I have chosen not to take the malaria drug. The side effects would kill me. It would be as if I were taking heavy chemo. The side effects include nausea, diarrhea, skin lesions and mouth sores. I hope you will understand my reasons for this decision. However, I have been following the work of Dr. Timothy Miller since early 2004. I have great faith in him. His protocol stops ALS by eliminating the gene. I got a great response from Dr. Miller. I get to start by summer. I don’t have to take a placebo. If you want to go to his website, google him at “Dr. Timothy Miller UCSD ALS”. I love all of you. Thank you all for being my hands, eyes, voice, and Legs!



Tuesday, February 26, 2008

Big Art & Yard Sale!

Aloha All,

Please help us raise money for Peggy's medical care and business! We are having a HUGE art and yard sale on Saturday & Sunday, March 8th and 9th from 10am to 5pm.

Please share this to everyone you know! We are accepting donations for the yard sale - anything you want to get rid of, we'll take and sell to raise money for Peggy's medical care! We'll be accepting donations up until Thursday, March 6th - just call or email us to arrange drop off at Peggy's. If you have large items that need to be picked up, we can try to arrange for that as well.

Here's the sale info:


Saturday & Sunday
March 8th & 9th, 2008
10am to 5pm

Peggy’s home studio & gallery
3115 Alika Avenue Honolulu, HI 96817

Tons of discounted artwork by Peggy and other talented artists
Framed and matted prints, calendars, cards, and “The Watercolor Cat” book by Shelly Mecum & Peggy Chun – Shelly and Peggy will be signing/stamping books on Saturday!

Yard Sale will include items from Peggy’s personal collection
As well as donated items from multiple families to help raise funds
For Peggy’s medical care

Come support Peggy! There will be an opportunity to WIN A SIGNED PEGGY CHUN LIMITED EDITION GICLEE!

Yard sales items include…
Computers and equipment
Baby & Kids Clothes & Toys
Jewelry & Accessories
Clothes & Shoes
Household items & Kitchenware
And more wacky and wonderful stuff!

For more info call 595-8434

Monday, February 25, 2008

Exciting Times

I have been trying to find a moment to blog this all weekend, but it just didn't happen. So here we are on Monday and Sawyer is finally taking a nap on Peggy's bed so now is the time!

Last Friday was a very productive day. It just so happened that we had a bunch of Legs all here at the same time - private hires, As, and Bs - so I took advantage of the big group to throw some ideas around and get some feedback.

First of all, let me just be frank with you all. We need money. The business has not been doing as well as we had hoped this past year. Even with all the wonderful press from The Watercolor Cat, sales have been down. This is true everywhere, all of our wholesale customers tell us that their sales are down. I've been wanting to do an email newsletter for Peggy's art business for sometime and so what better time than the present to get this started. You can all help by signing up for the newsletter (as many of you have) and also by spreading the word to everyone you know - we love grassroots marketing!

Back to our financial situation. We also need money for Peggy's care. We are running low on Peggy's medical funds and only have enough for possibly 4 to 6 more months of care. We need to fundraise.

So, we need money for the business and money for Peggy's medical care. I presented these facts to Friday's little group along with our first big idea - turning the March 8th art sale into a BIG Peggy Chun Art and Yard Sale on Saturday and Sunday. Our idea is that we ask friends and family (and anyone else) to donate items that they want to get rid of to help raise funds for Peggy's care. We can also do a mini raffle - oops, make that "donation opportunity" for a framed giclee with $20 tickets as we have done in the past. We're thinking that this will help raise some quick cash to buy us time as we think about and plan other ways to raise funds.

This idea was well received and so we will be going ahead with this sale March 8th and 9th. I will be working on an email requesting donations for the sale that we hope you all can send out to friends as well as info about the sale. We plan to post it on Craigslist and the newspaper. Of course, this a huge undertaking and we can also use any help with sorting, pricing, setting up, and selling.

The group also had other fabulous ideas for raising money. Through some creative brainstorming, we came up with a few more ideas that we will be implementing. Lisa told us about a girl that paid her credit card bills by "cyber-begging" which is essentially asking strangers online to donate bits of money for a cause. She raised over $13,000 by asking people for just a few dollars at a time. This gave us the idea to try this for Peggy's medical expenses. I am currently adding to our website a place where you can donate money to go towards Peg's care, totally secure via Pay Pal. If we can spread the word out to a large enough network, even little donations can add up.

This led to discussion about how to spread the word out about Peggy. The idea came up that Peggy should have a MySpace page! So Kelly set this up for us. This is a HUGE networking system for us to utilize. So check out Peggy's MySpace page at!

I really feel so grateful for everyone's enthusiasm and creative ideas. Managing Peggy's business, finances, and medical care can get so overwhelming, but after talking with Friday's group, I feel energized and hopeful. Thank you, Legs.

So that's where we're at and now you know what will be taking up our next few weeks! Peggy is working hard on her letter to all of you. She will have these words that she has been writing ready for Wednesday's meeting. I can't wait to share it with you all. I know that sometimes communication with Peg is challenging and leaves us feeling disconnected and unsure of how she is feeling. We are really working on new ways for Peggy to communicate her thoughts (not just medical needs) to everyone so that all of you (near and far) can feel more connected.

Friday, February 22, 2008

Happy Anniversary, Lolo!!!

Lolo subtly reminded us today (by bringing huge cupcakes and loudly signing "Happy Anniversary to Me") that this is her 3rd anniversary as a caregiver for Peggy. Happy Anniversary, Lolo! We love ya!

Doc Visit Report

Here is the doc visit report from yesterday as reported by Ms. Lolo. This is a photo of Peggy's cute outfit for Dr. Davis:

Had a good report on Peggy for her video visit. Everything A-ok - skin
looks good - no breakdown or rashes, eyes look good (considering), feet
look good. We forgot to discuss the G-tube leakage, but the dressing
remained dry today. Peggy says the hallucinations happen about 2x day,
mostly in the afternoon. They do not scare her. She experiences acid
reflux after getting her night meds, if she is too flat. Kathy put a
note in the HCA book for them not to lay her flat. They talked about
going on a bolus feeding schedule. Dr. Davis suggested
a nutritionist named Scott Carter, which Kathy will call to set up an
appointment with Peggy to discuss the feeding schedule and what's best
to do. Kathy also called in refills for Zyrtec and Nexium. Longs
later called to say that the Zyrtec prescription is expired, but is
available over the counter. The Nexium is too soon to refill. I left
a message for Kathy to call me, but so far she hasn't returned my call.

There is also some confusion regarding the meds and the med schedule. As Lolo suggested, we'll cover all of this at the Peg's Legs Meeting next week. For those that can't attend, we'll spread the word to everyone via the blog and/or post it in Peg's room. Speaking of meds, we are still out of Ferrous Sulfate, but Elroy is working on getting it - they were out of it at the pharmacy yesterday.

Thursday, February 21, 2008

Keiki Day at Peggy's!

Today I had Indy and Sawyer with me. Then Karen picked up her granddaughter Alayna who is Indy's age. Pretty soon they are going to go get Kala'i (age 6) too! They have been having a blast running around the house, dancing, laughing...Peggy's eyes haven't been great today, but I know she must be enjoying hearing the pitter-patter of little feet all over the house.

I'm happy to share the plumber finally installed the new water heater so now we have hot water again on the office/Peggy room side of the house. The landlord has been helping us with lots of things at the house lately. He just finished redoing the torn screens in the attic and the broken window glass. Soon, they are going to be redoing the kitchen cupboards and flooring! Yay!

Thank you to all of you who have been signing up for our Peggy Chun Art Studio & Gallery Newsletter. I am so excited about this new software. And Peggy is too. I showed Peggy how it all works yesterday and she got so excited. She wrote up a list of things that she wants to include on the newsletters. This is going to be a lot of fun for her.

So keep your eyes open for the first newsletter in early March. I will be including on it an announcement about our Spring Clearance Sale at the house on March 8th, so consider this a "save the date" notice for that!

Peggy's doctor visit is scheduled for today at 5pm. And remember, it is our favorite night - "Lost" night!

Wednesday, February 20, 2008

Help Us Test Our New Software!

Aloha Everyone. We are testing out some new software that will help us send out email newsletters from Peggy Chun Art Studio & Gallery letting people know about sales, shows, special events, and more. You can help us by signing up (see top left of this page). Once I have a few emails, I'll send out our first test email newsletter! We're hoping this will help us keep track of Peggy fans and offer them special deals as well as keep everyone in the loop about what's happening with projects like Father Damien, the Watercolor Cat, etc. Thanks all!

Tuesday, February 19, 2008

Tuesday Update

Hope everyone had a great long weekend. Doc visit is scheduled for Thursday this week. Today the office girls had lunch in Peggy's room just to catch up. I got Peggy on ERICA and had some success. We are definitely having some technical difficulties with it, so I'm waiting for the tech guys to call me back.

If anyone has any job leads, our amazing Karen is looking for part-time just can't interfere with this job (we need her!) but she's a workaholic and wants to be busy nights and weekends on top of everything she does here - she's crazy! She's very talented and detailed oriented as you know - she likes to keep busy, not stuck behind a desk. So let her know if you have any leads.

We are talking about starting up painting lessons again and would like to know if we would have a good turnout. See the new poll at left.

Please remember to RSVP for the Peg's Legs Meeting that is next Wednesday!

One last thing - is anyone reading "A New Earth" by Eckhart Tolle and participating in Oprah's online class on this book. Check it out on'm halfway through the book and it is wonderful, very thought provoking. I'm thinking of starting a study group for the book...anyone interested? Email me if you are!

Friday, February 15, 2008


I'm just about to head home but I had to share quickly that this afternoon we got Peggy on ERICA and she was able to type! She wasn't able to type much and she will need to practice, but at least she was able to control it a little bit. Imagine how amazing it must feel for her to control something for the first time in so long (besides us, I mean! Ha!). Anyway, she got to the phrases section and was able to click the buttons that said, "I love you" and "Thank you". She is having fun and will keep practicing tonight I'm sure! Yay! Keep praying for her and ERICA, guys!

Just to Clarify

FYI - I thought that Peggy had an actual doc visit on Wednesday, but actually she just got her questions/issues ready for Dr. Davis, but he was not able to make it via telemed. However, Cathy was here and went over all of Peggy's issues with her and will address them with Dr. Davis.

Hope everyone had a lovely Valentine's Day. Ours was great. Eric and I had a friend watch the kids while we went to the gym, then we picked up food from Foodland and went home. We made a nice dinner, put the kids to bed, ate and drank wine and watched Lost!!!

Lolo, Peggy, and I have already been discussing last night's awesome episode! I also got all the ERICA parts back from the mainland and got the ERICA camera working again. Now, we are just waiting for Peggy's eyes to clear up a bit so that we can test it. Hope it works - keeps your fingers crossed.

Thursday, February 14, 2008

Doc Visit Report

Peggy had a doctor visit yesterday. Here is the report:

Peggy was concerned about the G-tube, she says that it has been constantly leaking. Cathy thought that this might be due to the way we push Peggy's bladder (to release urine). She wants us to push down in a pattern always pushing down, not straight in.

Peggy's says that her trach has been more sore than usual. She says that there hasn't been bleeding, but that it has been sore on the inside.

Peggy reports that her hallucinations are down to one time a day, usually in afternoon. They are random things, not terrifying but they make Peggy somewhat nervous.

Peggy has no skin breakdown.

Peg has been requesting that the private hires decrease her tube feeding from 45 ml per hour to 35 ml per hour. She said it helps her to avoid reflux. Cathy reminded Peggy that HCA workers are not allowed to change any part of the feeding tube routine without authorization from HCA. She will suggest that Dr. Davis refer us to a nutritionist to see if we could decrease feedings but still meet Peg's nutritional needs.

Peg says that she feels bloated all the time and feels that she has gained weight. Cathy thinks that she will talk with Dr. Davis about going from on-going tube feeding to bolus feeding (this was also suggested by Cory and Mary Beth Geise). This would give Peggy's stomach a break in between feedings.

Peggy's toes and fingernails look fine - yay! And Peggy reports that her mood has been relatively good.

Peggy's eyes have been pretty good, although I think we all are finding that spelling is getting more challenging. Not even so much because of redness or irritation, but just telling where she is looking. We can discuss this further in the meeting and try to come up with ways to improve communication. We are open to ideas, suggestions, thoughts on please share!

Happy Valentine's Day, Y'all!

You All Are Winners!

The website has an annual Caregiver of the Year award. This year, Sheila Warnock, author of Share the Care, nominated me and I was selected as one of the winners! I was interviewed by Denise Brown, who runs and also operates The Center for Family Caregivers and owns and operates Tad Publishing Co.

As I told Denise, I really don't consider myself to be Peggy's primary caregiver. I think that you are all the REAL Caregivers of the Year Winners! So check out my profile on and thank you for all that each of you do...I could never do what I do without you. Congratulations to all of you!

Click Here Meet a Recipient of the 2007 Caregiver of the Year Award

Wednesday, February 13, 2008

Peg's Legs Meeting Confirmed

We have confirmed the Peg's Legs Meeting for

Wednesday, February 27th from 5:30 to 8pm (official meeting will commence at 6pm, but refreshments and socializing will start at 5:30!)

At The Healthcare Alternatives Office
156 A Mokauea Street Honolulu, HI 96819
Tel: 808-845-5700

We will be providing food and refreshments for the meeting...however, feel free to contact me if you would like to contribute some munchies...we'd love and appreciate any help :)

Here's some of what we will be discussing:

Peggy's current care
Communication and Care tip exchange
How Peggy's feeling (Peg is preparing some words for us to read at the meeting)
ALS Research 101 recap

Please let me know if there are other things that you would like discussed at the meeting. As usual, this meeting is for the caregivers. Peggy WILL NOT be attending.

PLEASE RSVP (preferably by email to so that we have an idea of who will be attending.

Thank you!

Monday, February 11, 2008

Peg's Legs Meeting - What Do You Think?

We are planning a Peg's Legs Meeting since it has been a while that we have all gotten together. We will be covering Peggy's current care, sharing some words from Peggy (she's working on this now), share what we learned at the ALS seminar and well as eating and gabbing (the usual!). I would like to poll everyone to see what day works best (see poll at left - how cool is that?!). Please take a moment to answer the poll and then I will make an executive decision and let everyone know when the official meeting time is. Please note, you can choose more than one answer if more than one date works for you.

The meeting will begin at 6pm, but this time I'm going to make the suggestion that people come early (5:30 or so) if possible so we can have extra time to eat, chat, and connect before hand. Please also take a few minutes to send me any questions or issues you would like addressed in the meeting or any questions that you have for Peggy.

Thursday, February 7, 2008

Kung Hee Fat Choy!!!

We did it! Yesterday we bombed Peggy's room and gave it a thorough cleaning. I would like to send a BIG thank you to Julie Percell, whose OCD rivals mine. She was on her knees wiping down baseboards and scrubbing every nook and cranny. Julie, you are the BEST!

Thank you to Marvel for getting Peggy up in the chair and working on her many many MANY sorting projects out in the living room. And we couldn't have done any of this without the Amazing Karen - who helped get Peggy up and watched the kids while we cleaned out the room as she simultaneously did about a million other things. She is the master multitasking wonder woman.

And thanks to Magda who set up her sorting party/Father Damien project out in the living room. This helped make the time Peggy had to be out of her room fun and productive. Magda's friend entertained us with beautiful original guitar and vocals while we sorted, drank wine, ate Chinese food, and cleaned.

We had some great company in the house throughout the afternoon/evening - Rhea, Lynn, Ty, Kelsey (who even stayed to give Marv a ride at 10 so she wouldn't have to catch the bus!). Jason brought the two girls by in the evening - so all the kids had fun running around like crazy monkeys. The weather was pretty miserable outside, but it was cozy and fun inside.

So I feel like our mission was accomplished. I feel like we're ready for the Year of the Rat! We even have a new toilet to start the Lunar Year off! Check out our new white toilet in the office bathroom. I know you will all miss the ancient blue one.

And we have another surprise for Elroy when he gets back. I got Eric to take Elroy's secret refrigerator out of Elroy's room outside to empty it and clean it. The smell was horrible - there was tons of rotting meat in there. He's going to flip out when he comes home, but that's when I can say, "I didn't do it - it was Eric!"

Lolo is still sick and so Andy, Lisa, and Hanna are covering today and tomorrow for us. Thanks, guys. Hope you feel better soon Lolo!

I spoke to Kelly this morning (who is also feeling under the weather - ugh) and she told me she heard that there was a sewage spill in the Nuuanu Stream yesterday and some warnings not to go in it until it clears. I researched it a bit more to see if we needed to worry about the awai (stream) in the front of Peggy's house. So, here's the scoop...

It looks like while the awai system is water from Nuuanu Stream, the spill seems to be downstream from Peggy's house, closer to Wylie Street, so with the direction of the flow, it shouldn't be of concern. Still, with the rainy weather we've been having, the awai is pretty nasty, so don't go wading around in it or drinking from it. I'm keeping Maka Boy home today for sure - we don't need his muddy paws on our newly cleaned floors anyway!

Have a great Chinese New Year's Day today! Remember - no cleaning today - you'll sweep out all your good luck for the new year! What a great excuse to relax :)

Tuesday, February 5, 2008

Wash Your Hands and Get Your Rest

So, Lolo is sick. Rhea is sick. Lisa was sick. Marvel is still sick. Karen got sick twice on her vacation. What the heck is going on?! All I'm going to say is, wash your hands, get your rest, eat your veggies! I'm glad we're giving Peggy's room a good scrubbing tomorrow.

Speaking of cleaning...Karen, Magda, and I did the kitchen yesterday. We cleaned out the entire refrigerator and freezer. I even cleared the counters a bit. Elroy is going to flip out when he comes home and sees that I have dumped all of his rotten food. You all better back me up. I'm going to tell him that I did it to appease the Chinese Kitchen Gods before the New Year so that wealth and good fortune can flow in. We'll see if he buys it.

Ann Weers is here today and she graciously volunteered to take Cola to her vet for a steroid shot for the itching. Poor bald kitty. We'll also bomb the room as planned and continue to treat her for fleas.

Good news - the repairman came yesterday to replace the water heater, so it is all taken care of.

Also, remember in a previous post I mentioned the movie, "Diving Bell & The Butterfly" - it is now playing at Dole Cannery Theater. "Maria Rose" Ching went to see it and said that we should ALL go. She says it is a beautiful film - you'll laugh, you'll cry :)

I have one more thing to share - my Dad is in Chicago getting his 2 year post-cancer check up and he just called to let me know that everything came back clear! He doesn't have to get another check up for 8 months! Hooray!

Hope to see you all tomorrow for all the FUN!

Monday, February 4, 2008

Karen's Back! We're Having a Party!

Karen's back! Hooray! We're so happy to have her back, we feel like celebrating! So here's the scoop:

We have made a last minute decision to have a Chinese New Year’s Party this coming Wednesday, Feb 5th. Here’s the scoop – Peggy’s room is in desperate need of a good cleaning and a bug bombing (there have been flea and ant reports). In order to really clean and bomb her room, we need to get Peggy up in the wheelchair and out into the living room. We thought, what better way to lure Peggy out than a party and what better time to clean than before the start of the Lunar New Year (Chinese New Year is Thursday, Feb 7 – Year of the Rat!).

Marvel will be getting Peggy up in the chair at 2pm, so we hope to start cleaning at 2:30 or 3pm. We are looking for folks to clean, hang out with Peggy, and celebrate the New Year! We’re doing potluck style grinds – we’ll be providing some good luck Chinese noodles, dim sum, etc.

Magda will also be working on sorting mosaic pieces for the Father Damien project. So have some noodles, a glass of wine, hang out and we can sort while we party!

We appreciate any and all help and to show our gratitude, all Peggy Chun Peg’s Legs purchases will be 50% off for the day! You can pick up something nice for a loved one for Valentine’s Day. And great news – we got the second printing of Watercolor Cat books in.

SO, to sum it all up, please join us for a Chinese New Year/Cleaning Peggy’s Room/Bug Bombing/Sorting Father Damien Mosaic Pieces/Super One Day Sale at the Chun House. It all starts at 2:30pm and ends whenever the fleas and wine are gone and the mosaic pieces are all sorted!

And Peggy always appreciates a great costume, so don’t be shy – come dressed in your Chinese best or even as your Zodiac Animal! Elroy and I are rabbits, Peggy and Sawyer are dogs, Eric’s a boar, Indy’s a Sheep – what are you?

Hope to see you on Wednesday!!!!! Any questions – call or email me!

Sunday, February 3, 2008


Peggy watched the "Lost" Premiere last night! The party ended up being smaller than expected (Peggy, Hanna, and Pat Lokatos!) since I was feeling a little under the weather. Indy really wanted to go to Punahou Carnival, so I dropped Indy and Eric off (since parking was a nightmare) and they got to ride some rides, eat some corn and cotton candy, and pick up some awesome avocados at the farmer's market stand.

But I talked with Pat, Hanna, and Peggy last night and Peggy loved the season premiere. I have now seen it as well and I am SO excited for Lost to be back on! All you Lost fans - this is a great thing to talk with Peggy about! She loves Lost and with a fresh new season of mysteries, Peggy would love to hear your Lost theories!

So for those that know what I'm talking about...did you see the guy in the rocking chair in Jacob's cabin when Hurley is looking in? Many fans that have slowed down the shot to get a better look claim that it is Christian Sheppard (Jack's Dad) in the rocking chair. Remember how Jack saw him on the island way back when...And then when Hurley sees the eye in the window of Jacob's cabin - was that Locke or was it supposed to be someone else? And didn't the "Oceanic" guy that came to see Hurley in the mental institution look like Mr. Echo's brother? It must not be...but they sure do look alike.
OK, I'll stop now :)

Friday, February 1, 2008

It's Aloha Friday...

Thank you to all of you who attended last night's ALS 101 Seminar. It was very informative and very promising. For those of you who were not able to attend, we highly recommend going online and seeing what ALS TDI is working in this battle against ALS. Their website is

Our dinner the night before with the team was wonderful. Mike, Nancy, Mary Beth, John, and Sean are all such great people with a lot of passion for what they do. We learned so much from them. Mary Beth, who is an expert in ALS care, gave us a lot of tips and information about Peggy's current care. She gave us a lot of ideas of things we could try. I put her in contact with Dr. Davis last night. He was very excited to talk with someone with experience in advanced ALS care. Mary Beth's website is

Peggy had her doc visit yesterday. Dr. Davis is aware of all the issues she is currently dealing with. One of the things that has returned is Peggy's hallucinations. She is having visual hallucinations quite frequently. We're still not sure what the cause is. Again as a reminder, if you notice Peggy having a hallucination or if she mentions it, please log it. Please include if she had just had meds or any other clues as to why they might be occurring.

Tonight we are going to First Friday/Chinese New Year celebration in Chinatown. Indy is very excited! And then tomorrow, we will be bringing "Lost" over so that Peggy can finally watch it!!! The long awaited Season Premiere that we missed last night! Don't tell us ANYTHING if you've already watched it!

This weekend is also Punahou Carnival (that's why it is raining!). If you go, please check out Peggy's Nose Paintings in the art gallery.

We have some type of problem with our electricity. Our HECO bill has been going up and up and up. While it is already high due to the use of the ventilator (a vent can add hundreds of dollars to your monthly bill), this is a bizarre increase over the past few months that may be due to a hot water leak. We have alerted the landlord, who is looking into it. Until we resolve this, can you please help us out by being extra conservative with electricity - turn off the lights when you leave a room, don't leave the hot water running, etc. etc. This will help balance out the increase on our bill until the problem is resolved.

Have a great weekend everyone! Alooooooooha!