Walk to D’Feet A.L.S.

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.

Hands

From mom:

I had trouble Thurs. opening the rotary cutter. I had to use two hands to push the spring loaded button. I have had trouble pushing the button on the Sonicare but I thought that was because mine is old and the contacts might be a problem on that button. Andy’s gave up the ghost so we got him a new one. Anyway my typing days might be much less in number than I am hoping. See you Monday.

Need help

So my mother has a problem. And while talking with the respiratory therapist with her today, it occurred to me that someone in my crowd might be able to help in a way that won’t occur to the therapist. When I ran the idea past him, he said to go for it because he’s into territory that he hasn’t covered before.

Here’s the problem: my mom can’t close her mouth or lips. In order for her CPAP machine to work, either she needs to use a full face mask or be able to keep her mouth closed. The full face mask isn’t working for other reasons, for which we’re looking for solutions.

But in the other case, I was wondering if anyone in this crowd would have any experience making rubber or latex face masks that could be altered to keep her moth closed? Or if there’s anyone who has experience with breathe play that could have other suggestions? Any solution would be run by and approved by her doctors, so please don’t hold back responding because you are afraid that it might be dangerous. Anything we finally decide on will be doctor-approved before put into use.

If you know of someone who might have such expertise, I love to be put into contact with them.

What I did today, by Philip Weiss

Drove to Lynden
Hung out with my mother.
Chatted with Angie.
Called places for mom.
Played gin rummy and won.
Drove home.
Hung out at the pool with Daniel, Amy, Keenrad, and was surprised by getting Melissa and Levi to come by from Helena, Montana.
Went to the Zoo. It was closed.
Went to the Roanoke. It was open.
Came home.

Conclusion: Melissa is the cutest thing and has awesome tattoos. But I knew this before.

Gin rummy

I beat my mom in two games of gin rummy today, even though I think it’s the first time I’ve ever played.

You might think that it’s cruel to win at cards against a dying person. To you who think that, I say nyah nyah nyah! You are dying too!

Home from Ocean Shores

I am home. I am drinking a cold Coca-Cola. Ocean Shores was pretty decent, considering hanging out with 7 to 10 other people is not exactly my bag. I spent some quality time with the family. We didn’t kill anyone, particularly me. My family likes Erin. I like Erin too. I got some sun. And I got 5 books read.

Oh, and I didn’t get sunburned yesterday.

Now, what to do for the rest of my birthday.

Ocean shores day 5

I sat out on the beach in the sun for about 2 hours today without a
shirt. Can you guess what happened?

I got a few pictures of a bald eagle though no closeups cause a gull
started dive bombing him before I got near and he flew off to save his
neck.

Made chicken adobo for dinner. Decent, but too salty and I
overcompensated for my undercooked chicken from a couple of nights
ago.

Heading home tomorrow. Should be back in the afternoon.

Ocean shores day 4

The weather continues to be mostly dry and cloudy. Last night I was
nailed by a good allergy attack, but the loratadine seems to be
working. Joe wants to rent scooters but the idea of riding scooters
up and down a flat beach on a scooter doesn’t appeal to me. I do want
to explore the nearby state park and recreation area. Yesterday I
drove my mom and Erin to the beach for them to fly kites. I did as
well for a bit but there was little breeze so I sat back and watched.
Got a few pictures of Erin being cute blowing bubbles. She looks
particularly fetching today.

I’ve started on “the coroner’s lunch”. I’m really liking it. Gonna
try to finish it and get a good ways into “the vengeful virgin” today.
After that it’ll be only the thick slow books.

Ocean shores day 2

About half our troop is off on a guided horse ride down the beach.
Not my thing, so I’m sitting on the dunes reading “walla walla suite”.
I took a few photos as they began their journey. Jason and Joe decided
to be the coolest and wear helmets. This part of the beach saddens
me. I can see more vehicles than people, though a bit to the south a
moderate number of kites dot the sky. To me a beach is little fun if
it resembles a parking lot.

The go-karts earlier were fun. Erin got some good photos of me and
Jason. He’s got the dale earnhardt sunglasses look going on though
not really the killer instinct. Amanda had that.

Joe wants to ride scooters on the beach but that looks pretty
uninteresting to me. I do want to do some canoeing though. Waiting
for a sunny day for that.

Jason was unable to find a strip club.

Ocean shores day 1

Today is overcast, chilly and a bit breezy. Still it’s relaxing
weather. I’m sitting on the back porch about to read Jhumpa Lahiri’s
“the namesake”.

The deer ate most of the leaves from the bush we chopped down. It was
blocking the dock. Three baby deer (fawns?) And two adults.

Relations with the family have been good. Usually things can get
testy and there is still time. But we’ve stuck to making fun of each
other and they’ve let me mostly hang back. I mostly want to relax
while they are the types to want to do things. I do love them and
this is a nice place to hang.

Jason and Amanda get here tonight. Tomorrow will be a day of doing
stuff I’m sure. He’s better at getting me interested iin
non-relaxing things.

Not reading LJ (this is posted via email) but I am checking the email
and text messages.