Tag: a.l.s.

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.

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.

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.