Well, Glen cleaned out his office this week, and officially began disability. =-( I have a 45 page booklet to wade through and forms to fill out, but Glen's boss got an email that the disability has been approved. Kevin went and helped him.. not only was there 5 years worth of Lockheed stuff, there was UTC memorabilia, pictures, race medals, coffee mugs. Still haven't found his reading glasses, so they must be around here somewhere.

Started using his BiPAP last night, which provides breathing support especially at night while he's sleeping. He has adjusted to it surprisingly easily. He took it off to make a bathroom run last night, and actually asked me to help him put it back on! The idea is that if his diaphragm gets to rest while he's sleeping, he'll get better sleep and have more energy during the day.

Couple of not so good adventures. Bad choking episode while driving to Lockheed.. I actually had to pull the car over to the side of the freeway to help him clear it. Definitly not fun. Also a bad choke while at the USF basketball scrimmage this afternoon. He also tripped getting to our seats, and really couldn't regain his balance without help from a couple of people. I've an agreement with the USF ticket manager that if at any time Glen can't access our season ticket seats, we'll be moved to someplace he can get to. Signs that he's losing leg strength seem to be occuring more frequently.

In the meantime... Mom is back in her apartment at assisted living, with 24 hour nursing care, plus a family member there most of the time. While my family has been awesome about leaving me and Kevin out of the rotation, I'm still trying to get up there at least every day or two... so if I'm with Mom, Kev's here with Glen. And often, vice versa. Kev & I wave as we pass each other.

Several of you have very kindly offered to spend some time with Glen, which would give me and Kevin a much much needed break. If I have not called back, PLEASE be patient with me... I figure when I stop and take a breath at 11 pm, you probably don't want me calling then! I will indeed be taking you up on your offers.. just need to get pulled together enough to schedule things.

For now.. good night everyone.

Alright, I am going to try to condense an INSANE week into a couple of paragraphs.

Barring further changes (always and ever a possibility) Glen is done working. He will use up his vacation time then either go on short term disability followed by long term, or directly to long term. Gotta talk to the HR people about that one. Another phone call to make! He was just too sick and too out of sorts after the last time he worked. We want him as healthy and happy as possible for as long as possible. We also started looking for a "new" car. In the meantime, Kevin's using the CR-V a lot.. the firebird's windows don't go up all the way, which is tricky when it's raining! The added advantage is that there's no car for Glen to even think about driving.

In the meantime, for those unaware, my mom went into the hospital last week with what we thought was breathing/pain problems from her pre-existing emphysema/COPD. Sadly, it turns out she has aggressive lung cancer. It is inoperable, and she really doesn't want to deal with chemo and radiation given her other illnesses. The doctors have told her maybe 3 months. She is receiving pain medications and we're working on what the plan is from here.

Tonight Glen was supposed to start using a BiPAP machine to assist his breathing while he's sleeping and give his diaphragm some rest. Unfortunately, the machine kept turning itself off, so I took it off him and we'll call the doctor in the morning for help.

And just for good measure Baron - my 20 month old Golden - has an ear infection that requires cleaning and medicating daily.

So bear with me if I am having a little trouble keeping up with the blog, I will definitly give it my best. And... if anyone has a couple free hours that they wouldn't mind spending hanging out with Glen so that I could go see my mom with a little less stress (the ol' we don't want him choking when nobody's here issue) feel free to drop me an e-mail or give me a call.

Thanks and good night all!

Glen decided that he really really wanted to go back to work today. Actually, he wanted to go yesterday, but between the weather and having to go help my sis-in-law get my mother settled in the hospital I said no. So today it was nice out, and we headed out, stopped at Starbucks, then headed up to Sunnyvale. Now.. understand that because Glen works at Lockheed (0perative word LOCK) dropping him off at work is not nearly as easy as it sounds. I actually drop him off at the credit union, which is a couple blocks away, and he walks in to the plant. Then I left and drove to Fremont, met Kathy at the hospital, went and grabbed some breakfast with Kev & Rushi, got back to the hospital just as they were bringing Mom back from her biopsy. Spent some time with her, talked with her doctor and pulmonologist, and it was time to go pick Glen up from work.. but this is about Glen, not me, so I digress.

When we got home, he insisted going out for a run/walk. Tried to convince him he'd already exercised today just getting to and from the office but..... It took him longer than usual, and he was pretty down when he got back. Got him something to drink, and he went and napped for a while before dinner. Kevin made "pastalaya" for dinner for us tonight... he's modified his jambalaya recipe to make it easier for Glen to swallow, and a big change is using pasta instead of rice. It was very yummy.

In my opinion.. Glen totally overdid today, and just for good measure it was hot and humid all afternoon. It was frustrating because he's been so much more relaxed and content the past three weeks.. to see it all evaporate in one day back to work was sad. He just wasn't himself (even his "new self") tonight, and his color wasn't great. So we'll let him go in tomorrow and then reevaluate. If at some point Kevin and I have to step in and say "No.. you're not working any more" we will.. but I want to give him every chance to make his own decisions first.

Trying something new... writing in the morning! Before the coffee wears off!

Very nice weekend, and some good conversation with Glen. Keep in mind that any concession from Glen that something might need to change is a HUGE deal for him.

Had a family meeting about the car situation... Glen admitted it's becoming "a little harder" to steer, and honestly, his days of driving are short lived. Which means we will be a three car family with two drivers,which doesn't make much sense. So we've come up with the plan of trading in the red cars... Glen's CR-V, Kevin's Firebird... for a newer used car that G & Ke will share. After some discussion, they decided they are looking for a 2006 or newer Dodge Charger. Which is what I get for letting them watch NCIS.. they both want a "Gibbs car." So in talking we said to Glen "Do you promise you won't crash the Charger!?" He very carefully managed a shrug and with a huge grin said, "What can I say?"

He keeps going back and forth about what he wants to do about work. We pretty much were in agreement that he would use up his vacation and sick leave, then go on disability... then yesterday he wanted to go to work this morning. Then last night... he decided not to go in, which is good because we're expecting a storm and if I drive him, it's a long walk to his building.

In general, I'd say his mood has improved with the medication change.. his sense of humor is much better, and he's obviously quite proud of himself when he makes everyone laugh. There are definitly some tough decisions to be made in the near future, but with humor, we'll get through.

Short and sweet... Disneyland pictures are posted. Go to: www.picturetrail.com enter username: twoskaters Click on any album you want, but the Disneyland pictures are in the album named (drum roll please!) Disneyland!

Back to reality =-(

I like vacation. I like vacation a lot. I do not like returning from vacation. The things that would normally have been done during vacation sit waiting for you like nasty little gremlins, waiting to erase the relaxation and good feelings. Sigh.

Yesterday Glen had two appointments. The first was with his Occupational/Hand therapist. She's very sweet, and truly wants the best for Glen, but I fear we (meaning me) need to talk to her again about the realities of ALS... Glen is NOT going to get stronger, or rebuild the muscles in his hands. The number of exercises she gives him simply serve to tire him out, and I think are beginning to frustrate him also. I've noticed he doesn't really talk to her but turns to me to answer questions. I asked him this morning if he felt he was getting any benefit from the appointments or if they were just exhausting and he said "they just tire me out." Huge concession, but lets me know what I need to do.

Second appointment was with Belen, the speech/language pathologist. Told her water was a constant issue now and she said we need to be using a thickener, or he needs to be drinking things like smoothies that are naturally thicker. Found Thickit at Walgreen's.. who knew!? Mixed it into his Starbucks Iced Tea, and he actually finished about 2/3 of a venti. With some nagging we might start getting enough fluids into him. She also gave him a nice lecture about pizza... that either he slows down when eating it, or yes.. I am to cut it into little tiny pieces. According to Kevin, Glen ate very slowly and carefully last night. (I was at dog training class, then out to dinner with our trainer. An actual evening off. Ahhhhh.)

Today was physical therapy. Laura "gets it." She spent the full hour stretching out his shoulders and hips. I mentioned to her that while we were at Disney, we felt there was a change in his gait. She checked his hips and both were stiff, one noticeably stiffer and tighter than the other. She said some of it might be just overuse issues from vacation, but that it would be a while before we could tell if it was that or progression of symptoms.. it's probably a bit of both.

Managed to not schedule any appointments for a couple of weeks. Next set will be with the respiratory therapist to see if some breathing assistance during the night might help Glen's sleep and therefor help increase his energy during the day.

Oh, and while we were gone the letter from UCSF came confirming the ALS with FTD diagnosis. No big surprise there.

Guessing y'all are wondering about those pictures huh? I need to pay bills this weekend but will try to get to work on the photos also.

And now for your homework assignment.. an article from "Neurology Now." Yes. I read articles ALS friends send me from Neurology Now. Weird, I realize. I used to read beading magazines. Anyway: Fight Smart, Not Just Hard Short read, but very worthwhile.

Yayy!! My DSL issue was indeed the wireless router. After many phone calls to two continents, I finally got the right guy in St Louis, who dispatched someone within an hour who had the whole thing installed and working in 20 minutes. Hooray!!

So I guess y'all want to know about vacation. We pretty much let Glen pace the trip.. if he wanted to go on something that's where we went, if he was hungry (like, when isn't he??) we ate. When it seemed he was getting tired, we'd go back to the hotel and let him sleep until dinner.

First day we took the Monorail to the park (after a little glitch but that's a whole nother story). Glen had said he wanted to go on Space Mountain first, but the train dropped us off by the submarines and so that's what he wanted to do first. Have to say the subs have been upgraded with the Finding Nemo theme and are a lot more fun! Then the men folk went on Space Mountain, followed by Star Tours, which got me and Glen both a little queasy! He actually did surprisingly well with the queasy thing given he has less upper body strength to stabilize himself.

Second day was Pirates of the Carribean, Jungle Cruise, Enchanted Tiki Room.. good stuff. Don Bear, Rushi and I all got Mardi Gras beads while watching a concert in New Orleans square.

Glen's birthday was Sunday... started with a character breakfast a Goofy's Buffet. Great Great time! Glen got his picture taken with Goofy, Pluto and Princess Jasmine. Don Bear got his picture taken with Jasmine also, who then pulled up a chair and chatted while turning Don Bear's Mardi Gras beads into a star pendant! Kev & Rushi went off to the park while Glen, Sharon and I took the afternoon off... went to the open air sports bar, had lunch and drinks, watched football and played with the remote control boats.. Glen was best at it. After Glen's nap we headed back to the park... our plan was to take the train to New Orleans square, have dinner and watch Fantasmic, go on Haunted Mansion then watch the fireworks. That's what we get for having a plan... or not sticking to it! Got on the train, went to New Orleans square, figured we had lots of time, and would ride the train all the way around the park. Next station, train stopped. Waited a couple minutes, train moved forward to Tomorrowland.. where it broke down for good and we had to get off exactly opposite of where we wanted to be. By the time we walked back, having not had dinner, it was almost time for fireworks. Found a place to sit at a refreshment center, but all they had for dinner was hot dogs, chili dogs and pretzels with cheese sauce. But the fireworks were amazing!! Plan then was to go to Haunted Mansion after.. unfortunately, Glen totally ran out of steam and wanted to go back to the hotel. On the way back, his leg threatened to buckle on him and it was a very slow walk. This was the most obvious his leg involvement has been, and is fairly new. He had a fairly rough night.. lots of leg twitches, which are painless, but interrupted sleep for both of us.

Monday was Sharon's birthday... she and the kids went off to the park while we stayed behind and had a very pleasant visit with long time friend Steve Shea. Then we all went off to Medieval Times, where I surprised everyone by having reserved front row seats. The show was great.. Don Bear was of course smitten by the Princess... who dropped a flower to a knight who then threw it to DB. He has decided that Princesses are better than wenches. Such a fickle bear.

After dinner tonight I will start working on the pictures. We have hand therapy and speech therapy in the morning, so the pictures will probably get up in the afternoon sometime? Oh, and the dogs are now home safe and sound.

Just a quick note... we're home safe. Drive was long and we're all tired. Glen seems to have had a great time. He was a little grumpy when we got home, but again, we're all pooped!! Then I get home to find out we'd had a power outage and apparently my modem got fried, so I'm on the wi-fi card. Added together that means Katie's going to go watch the end of Dancing with the Stars and work on blog and photo posts tomorrow... after I bring home my puppers!!!!

DISNEYLAND!

Sorry.. it's been crazy, and I just now got the computer unpacked! So, where to start...

Drive down was great! I took the first and last shifts, Kevin took the middle. Glen handled the ride very well. We stopped every 90 minutes or so so he could get out and stretch and walk around. Got here and got checked in.. I mentioned to the girl at the front desk why we were doing this particular vacation. Not 5 minutes after we found our room, a tray shows up with strawberries, brown sugar, whipped cream, and sparkling cider.

We have two rooms for 5 people.. one is a one bedroom suite. Both have a view of the fireworks at night,and the fireworks music is broadcast on the tv. First night, we had dinner at the Jazz Club in Downtown Disney. Music was great, except for one hideous moment of extremely painful feedback!

Next morning, there was a slight glitch.. girl at check in said she couldn't get my tickets for me. When we tried to get on the monorail they said we needed tickets, or we could "just" walk to the front gate, which would have added extra walking that Glen really did not need. So.. I left everyone there drinking their coffee and marched back to the hotel front desk (which my hip is still reminding me of but oh well.) Once there, I told the person helping me my whole sad story, complete with a few angry tears. They really don't like it when one of the cast members makes someone cry at the Happiest Place on Earth. Left the hotel with all 5 park hopper passes in my hand.

Glen enjoyed the park.. after the Finding Nemo submarines, Space Mountain, Star Tours, some shopping, lunch and the Matterhorn, he was ready for a rest so we came back to the hotel. Sharon and I got in a swim, Kev & Rushi did some shopping. Later on we ordered room service for dinner.

This morning, we almost had a crisis.. Sharon couldn't find her wallet with her room key, park pass and id. ACK!! Eventually she found the wallet... crisis averted and we were off to the park, though later than we'd planned which meant Glen got his breakfast late. Headed to Main Street where we wanted to have breakfast.. except as we got to the back of the line the nice lady said "I'm sorry, these are the last people for breakfast...." OK, I admit it... I swore in Disneyland. Not AT anyone, not even loudly, just a mutter under my breath and turned to go. As Glen & I were heading out, she called us back, and snuck us into the back of the line! Breakfast was awesome. Then we got our picture taken in front of a giant Mickey Mouse pumpkin, got on the Disneyland train (yes... it's tacky... I LOVE it!) and headed to New Orleans Square. Line for Pirates (which just reopened today) moved very quickly. Kev & Rushi got the front of the boat.. but ducked enough that those in Row 2 got wet too!! Boat 2 ahead of us got stuck a couple of times which was interesting. Johnny Depp... er.. CAPTAIN Jack Sparrow makes not one but 3 appearances.. gotta love THAT!

Next stop was the Jungle Cruise, always a good time. Then off to the Tiki Room.. those of you who follow Don Bear's adventures will have to check out the Picture Trail album in a couple of days. DB and his new wingman bonded with the line guy outside, and we got a couple of great photos. By then Glen was pretty tired, so we trudged on over to the monorail and headed back. Stopped for a late lunch at ESPN Zone.. great fun. Kevin thought he'd simply died and gone to heaven. Glen & Kev had to go check out the men's room.. where there's a TV over each urinal! Not to be outdone.. the ladies room has a tv in each stall!!

So now we're back at the hotel.. Glen & Sharon are asleep, I believe Rushi's asleep, Kevin's gone for coffee and I finally got the computer unpacked and a chance to catch up a little. Then it's Advil and some ice for my back, and maybe a nap for Katie too!