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.