Author: Philip Weiss

Moving to Lynden

I’ve mentioned this as a possibility before, but it’s official now. I will be moving to Lynden soon.

My current plan is to retain my condo here in Seattle. I will also get a place in Lynden, where I can be closer to my mom and help her arrange things and communicate. Thursday mornings I will drive to Seattle. I will spend the day here, and the evening mentoring. Then either Friday or Saturday, depending on social activities, I will drive back to Lynden.

I’m not sure what I’m going to do for Guinevere though. I don’t want to transport her back and forth. If she stays here and I get someone to feed her, she’ll be alone most of the week. If I take her to Lynden, I’ll have a harder time finding someone to feed her the couple of days I’m in Seattle since I don’t know as many people there. But there’s a chance I’ll rent a house, so she would be able to go outside again and have more room to roam around inside as well. Not to mention it’ll be fewer days alone. Another option is to find her a new home, whether a temporary foster home or permanent. Really don’t want to do that, as she’s been with me over a decade.

My ballot

Initiative measure 960: requiring 2/3 vote to approve tax increases or a vote.
No. Some things need super-majorities to get by. Normal functioning of the government does not.
Referendum measure 67: setting treble damages for unreasonably denying certain insurance claims.
Approved. I’m not sure this is the best thing actually, but we can repeal or modify it if it doesn’t work. Right now, there’s no penalty if a claim is denied wrongfully. The insurer just pays the claim. Meanwhile the patient is out all the time and expense to force the insurer to pay.
Senate Joint Resolution 8206: 1% rainy day fund
Rejected. I’m in favor of a rainy day fund. I’m not in favor of it being mandated by the state constitution. I’m also not in favor of the kinds of restrictions on it’s use. And since it’s a constitutional amendment, if it doesn’t work as planned it can’t be repealed by the legislature.
Senate Joint Resolution 8212: authorizing inmate labor for private companies
Rejected. I don’t see a driving need for this.
House Joint Resolution 4204: approval of school levies by majority.
Approved. This eliminates super-majority voting requirements for school levies. Right now not only does a levy require a super-majority, but you have to have beat turnout from previous elections. As I noted above, regular functioning of the government shouldn’t be by super-majority. Now, if we could get this to be applied to all levies.
House Joint Resolution 4215: allowing investment of higher education permanent funds
Approved. Not that it will necessarily make the universities a lot of money. I think adequate safeguards against gambling can be written by law or regulation. It’s not necessary to tie the hands via the constitution as currently written.
King County Initiative 25: electing the director of elections
No. This doesn’t make the director of elections elected. This merely puts another item on the ballot next year to make the director of elections an elected position. I’m generally in favor of manager positions like this being appointed. It allows such things as an executive search with multiple candidates.
King County Proposition No. 1: renewal of Medic One property tax levy
Approved. Medic One. ‘Nuff said.
King County Prosecuting Attorney
Bill Sherman. Both have experience. Dan Satterberg though voted to approve Laurie Sotelo’s illegitimate challenges to voters.
King County Assessor
Scott Noble. He’s the incumbent, and I haven’t heard of him. That’s what you want in an incumbent assessor.
King County Council District No. 4
No vote. I don’t vote when someone is running unopposed, unless I’m putting in a write-in for some reason.
Port of Seattle Commissioner Position No. 2
Gael Tarleton.
Port of Seattle Commissioner Position No. 5
Alec Fisken.
Sound Transit and RTID Proposition No. 1
No. I’m torn here. Ultimately though, I think there’s too much emphasis on roads in the package. If that money was spent to repair roads rather than build new ones, perhaps. Also, I’m not a big fan of extending light rail into rural areas since I think that encourages sprawl. It ought to be spread through existing urban locations to encourage even greater density. Places like Ballard, West Seattle, or an I-5 route. Even Bellevue. But not I-90 generally.
Seattle City Council Position No. 1
Jean Godden. She’s turned out to be a decent councilperson.
Seattle City Council Position No. 5
No vote. Tom Rasmussen is unopposed.
Seattle City Council Position No. 3
Venus Velázquez. Don’t know much about either candidate. I like Peter Steinbrueck (the outgoing councilperson) and he’s endorsed Velázquez.
Seattle City Council Position No. 7
Tim Burgess. Burgess is somewhat of an opportunist, disavowing some of his previous work with right-wing causes now that the wind is blowing liberal again. I’ve met him and he’s pretty smart. And really, the opportunity to do a lot of right-wing damage (should he turn out to be a stalking horse) is pretty limited as a councilperson. Meanwhile he’ll be the type that gets into the nitty-gritty of city business.
Seattle City Council Position No. 9
Sally Clark. Haven’t really seen a lot out of Clark, but Fenton is a right-wing gadfly who is running on public morals and says little about day to day things.
Seattle Charter Amendment 17: adds a preamble to the city charter
I don’t care.
Seattle Charter Amendment 18: the mayor’s state of the city address
Yes. This is mostly a pissing match between Mayor Nickels and the City Council. He did his state of the city address to some other group and they got peeved that the official audience (them) didn’t get it in person. I don’t care that much, but it probably should be given to the council at least.
Seattle School District Position No. 1
Peter Maier.
Seattle School District Position No. 2
Darlene Flynn.
Seattle School District Position No. 3
Harium Martin-Morris.

Seattle School District Position No. 6
Steve Sundquist.

A.L.S. clinic at Virginia Mason, visit the second

Today I, along with my dad and brother, accompanied my mom to the Virginia Mason A.L.S. clinic. The idea behind the clinic is that you go to one place and sit, and all the A.L.S. specialists in various disciplines come to you. There was a nurse, the A.L.S.A. patient care coordinator, two respiratory therapists, a speech therapist, a nutritionist, two occupational/physical therapists and a student P.T., a psychiatrist, a doctor specializing in A.L.S., and a neurologist who specializes in A.L.S.

In theory it’s awesome. In practice there’s one huge drawback. Because there are so many people to see, they don’t share notes until the end of the day. Which means they all ask the same questions, since the disciplines with regard to A.L.S. overlap. Here’s an example:

My mom can’t swallow. That obviously impacts her eating, and she has a feeding tube that allows her to get her caloric needs met. But after that, her mouth is still producing saliva which she can’t get rid of. She can choke to death or drown in her own fluids. There are basically two solutions: medication or a suction device. Medication dries the saliva production, but it also dries your eyes. My mom doesn’t want to do this because of previous eye disease that could return if her eyes dry out which they have a tendency to do as a result of that disease. She uses eye drops. The suction device she had but returned after three or four weeks because it is not portable. The doctors have basically said, “put it by your favorite chair and then don’t move.” So her solution has been to carry a handkerchief and dawb the saliva away. It’s portable and doesn’t dry her eyes.

Anyway, about 5 of the folks we met with wanted to put her on medication to stop the saliva. So she’d tell them she didn’t want to do that. The doctors (term used generically, they aren’t all doctors) wouldn’t just say okay, moving on to the next item. There’s good reason for that. They want to make sure she’s not rejecting medication out of hand simply because she has some sort of fear of medication or other irrational belief that prevents her from enjoying the remaining time she has. But since there isn’t a common chart, and even if there was there wouldn’t be time to share the information between each specialist, we have to go through the whole explanation from the previous paragraph every time.

That’s really tough for someone who can’t talk, and who has to type up the reasons and responses on a speech device. What I can explain in about 30 seconds will take her 4 or 5 minutes. Now, actually a few times I did step in and explain this, after asking mom if I could do the explanation. But it still takes a lot out of her, and there’s always a slightly differently worded well, could you consider it this way thing from the doctors that my mom needs to answer.

By and large, I’m really impressed with the A.L.S. clinic. Having access to people who know the latest and greatest with regard to A.L.S. treatment is wonderful, even if there’s not a lot of practical results. And it sure beats having to make two trips or worse nine trips to each kind of specialist. But it’s tough on my mom. A.L.S. often causes exaggerated emotional responses, particular laughing and crying, clinically. Add that on top of dealing with a fatal illness that requires major life changes. She’s fatigued and tired and emotionally raw. That’s the base. Then 9 visits one after the other with many of them very pressure filled. It’s been a rough day for my mom.

Watching that is pretty rough for me too. Participating in it takes a huge emotional toll. My mom being unwilling to let me help more is hard. I have some skills as a former manager that could make a lot of her daily life less stressful, without her losing any independence. It would mean living nearer to her most days. She has told me not to do this though. She doesn’t want me to distance myself from my friends, and she wants me in Seattle to take care of my grandparents. Plus, there are other family things tied in to this that make it even more troubling for me.

I really need to see a counselor.

I also need an emotional refuge, and I don’t have it. I’ve got some pieces of it, but not everything. Mentoring is my lifeline. Jason gets my mind off my troubles. And a small group of friends has gone above and beyond to prop me up. But what I don’t have is a tight-knit group of friends who yell out “Norm!” as I go to a familiar place every day. No June Cleaver waiting to hang up my coat either. I know, having such things isn’t actually that common. T.V. isn’t reality. But goddamn it sure is attractive, and I wish I had it right now.

Fuck. I really am a wreck tonight.

Walk

I got up early yesterday to drive up to Bellingham for the A.L.S. walk. Erin rode up with me, and we picked up my grandparents as well. I know I write about my mom a bunch, but I should mention my grandparents more too. My grandfather is my hero. He’s pretty much the coolest guy I know. He was a firefighter for Seattle for years.

Anyway, when we got to to walk site, I pulled in to the lot, coincidentally right next to where Erik, Amanda, and Jason had locked themselves out of their car. My mom was trying to herd cats at the starting line. She’s never been very good at it, and being unable to speak frustrated her. But she did have red visors (my head was too big for it though) and I Support Dorinda stickers for everyone.

She was selected to cut the ribbon. I was trying to take photos of the start, but my mom and the people with her walked off like it was a race. It may seem like an easy job, but y’all should give some props to the sports photographers out there. My shots at the start sucked.

I walked with Gramps. He’s got a bad ticker, and not a lot of strength. We trailed most folks, and had to turn around well before the end. I got some decent photos while sitting at the spot we turned around at. On the way back, there was a fire truck parked for a local boat race. Some sort of medical assistance call. He went over to see if he knew any of the men, and I headed all the way back.

I took a few photos of my mom dancing in celebration. I don’t know if I’ve mentioned it here before, but one of my favorite experiences was living in Boise when my parents came to visit. I took them to a German association Octoberfest, and they danced to the polka. They were way better than anyone else dancing, and that included some people who looked like they competed. My mom’s team won the top spot for most donations collected, and my mom should have one for most collected by an individual, but we think they messed up.

Afterward, we all headed to my mom’s place in Lynden for obligatory food! Joe did most of the food planning. Ask him his secret meatball recipe sometime. Also, his grill is very important to him. As soon as the last food is off the grill, he’s cleaning it. Then he eats.

Then we messed around with the cornfield for a bit.

I got home and nearly went to bed then. But Jason got me to go drag Keenan to the hospital. By the time that was over, I really was tired, so I went to bed.

Last chance: Walk to D’Feet ALS

Reposting as the walk is this Saturday. If you were thinking about donating, now’s the time to step up to the plate. If you weren’t, well, use the scroll bar.

As most of you know, my mom was diagnosed with amyotrophic lateral sclerosis (A.L.S.) this spring. This is the same disease that Stephen Hawking has. Only not everyone has his notoriety. A.L.S. is a progressive condition where the nerves that carry messages to the muscles slowly stop working. It’s not pretty and it results in near paralysis.

The A.L.S. Association of America, Evergreen Chapter (you know, the local western washington chapter) is holding a fundraiser September 22nd, the Walk to D’Feet A.L.S. The money goes to support the equipment loan locker program, support groups, patient services and programs designed to provide information, nationally accredited research, and the certified A.L.S. Clinic at Virginia Mason in Seattle.

Other than the nationally accredited research, these are all things that my mom has used directly. And the research certainly holds out the hope that something will be found to help her. The loan locker provided her a wheelchair when she wanted to go to an event but couldn’t stand for the entire occasion. The support group has provided valuable advice and a kind soul there gave her an $8,000 speech computer that is one of the few ways she can talk. The A.L.S. clinic puts together all the specialists that she needs in one place: speech therapists, respiratory therapists, doctors, neurologists, nurses, occupational therapists, and more. All who know the ins and outs of A.L.S. They know way more than the folks doing such things in their own offices. I’ve seen it.

My mom has a team walking in this fundraiser. It would mean a lot to me, and to her, if you would sponsor her team. In other words, donate some money. $5. $10. Or even $100. It goes to support things that she uses.

http://web.alsa.org/goto/philipweiss

And I’ll make the same offer I made last year with regard to Darfur. If anyone on my friends list donates money and forwards me the receipt you get via email, I’ll match the donation.