Greetings to all. I hope you all had a lovely Christmas. Ours was nice, though of course not without its ups and downs. Knew we were having people over for the holidays, and I was accused by some of having an advanced case of HPS... "Holiday Perfection Syndrome" Wanted the house as nice as it can be until we get the repairs etc done. Needed to get the shopping done.. which was far more challenging than I had even planned on: not only did all the shopping fall to Kevin and myself, but one of us had to be home with Glen, so we couldn't go out and "double team" ... kinda weird. We did sneak out together once or twice briefly when Glen was napping (he knew where we were and had our cell numbers.)

Couldn't find the holiday decorations under the archeological striations of Kevin apartment, Mom & Dad house, Glen office, Mom apartment that make up my garage. Yikes! Those of you who knew my Mom know that Christmas was HUGE at our house.. lights, decorations, etc in every corner inside and out. Christmas without any kind of decor would be unheard of! So... thanks to some extra money from mom's estate, Kev, Glen, Rushi and I went to Target and I told the three of them to pick out whatever they wanted... we ended up with items ranging from Glen's "Jimmy Buffet" tree ornament (a shark wearing sunglasses and a hula skirt) to the baby moose and the tutu-wearing hippo on my front porch! Fun stuff, and when we DO find the other stuff, the new ones will fit right in!

Of course, there were the sad moments... at one point it dawned on me that not only had Glen not talked to Kevin about helping get me a gift... the mere concept of getting me a gift was lost on him. And while we'd talked about getting him a new computer and setting it up for him, there was no reaction when he did get it and it sits untouched thus far. That's the hardest part of this.. the physical losses are scary and all, but it's much harder missing the sweet thoughtful husband and father that used to be here and rarely shows up any more.

Christmas eve morning my family came over... we had a great time, if we overlook the little incident with the bagel that somebody snuck into the living room to eat so I wouldn't grumble.. and ended up choking on. That afternoon, we went up to visit Glen's mom. Christmas morning was Mass and then coffee at Starbucks (that was exciting.. first time someone's actually offered to help with a heimlich.. thanks ma'am, but you gotta do that MUCH more strongly!!), then dinner with Sharon, Rushi and her brother Akshay. We opened gifts right before dinner, and Glen went to bed right after. Sadly, Kev & I paid for all the activity with a very cranky, agitated Glen for a couple of days after. But we know that's a pattern and know to expect it.

As far as medical updates: Glen is sleeping a lot... usually 12 hours a night plus a 2 or more hour nap in the afternoon. His gait is off, he coughs frequently and he's less responsive to us. It's hard to tell at times if he's not feeling well and doesn't want to tell us, or if he's simply not present with us.

So we'll leave the new laptop on his table and maybe sometime he'll decide he wants to use it. And we'll take him on outings and hope he enjoys them, knowing he'll be agitated afterword but also knowing he needs the mental stimulation. Oh, he LOVED Avatar... now, he was up at 4 am the next morning checking the front porch for imagined injured people, but oh well, he had the time during the movie where he was enjoying it.

And I shall continue to find time to take care of Glen, miss him, miss my Mom and maybe once in a while take care of me. Hopefully in a few days I'll be able to start filling you in on some upgrades around here! Till then, hugs to you all!

Thank you.

I was just looking through the ALS Forums message board. There were a couple of very sad posts, one from someone who has become a really good friend as her husband has the same FTD variation that Glen has. Both of these ladies were musing about the fact that friends.. sometimes close ones.. don't call because they don't know what to say. Don't ask "How are you" because they fear the answers. It pointed out to me just how blessed I am to have you all! Because, not only have I not lost friends, we have reestablished contact with people that maybe we'd lost touch with over the years. Or maybe if we have lost friends over this.. they weren't really friends anyway and thus aren't really missed?

People have gone out of there way to come help with a project, or just hang out with Glen for a while. I'm not always good about asking for help, even when I want to... seems like just making the plans can be another "job." But to have Steve take time out from a visit with his grandson to take Glen to get a haircut, or John & Barb arrange their family visit time so that they can spend time here too is just amazing. A day doesn't pass without someone checking in to see if we're ok... and of course there's still that weird mind meld where Don (not my brother) somehow KNOWS when he needs to call me at 11:30 at night just to say "Are you ok?" [the answer that night was.. no. But he already knew that] That means so much... all of the literature begins with the statement "ALS is a family disease." It is so true, and that card or phone call or Facebook contact means the world. Kev's friends have also been amazing.. especially his "big brother" Ben who's been a confidant and shoulder to cry on when Kev feels he shouldn't be leaning on me (he can but I understand.)

Having now received some funding from my mom's estate.. we are excited about doing some much needed repairs around here. Maybe this will be followed by a thank-you party. In the meantime.. anyone who thinks those little (and sometimes BIG) acts of kindness may go unnoticed.. they do not. You are a very special, very appreciated group of people!

So, I've been rather neglectful of my posts. Bad Katie!! Not much going on really. Had a physical therapy appointment yesterday. I mentioned to Laura that Glen's ankles appear to be rolling out slightly, which she saw also. Checked foot and ankle strength and they seem ok. Her best guess is that the gait change is causing his shoes to wear strangely. She suggested new shoes that aren't running shoes. So it looks like a shopping trip is in order.

Parking placard came, and that is making life much easier.. and will make me less opposed to hitting the mall to shop for new Glen shoes!

Picked up the new BiPAP today, will have him start using that tomorrow night. Found out part of the problem we'd had was that we'd been given a mask 2 sizes to large... no wonder it was leaking!

Tomorrow Steve Shea and his grandson are coming by for a visit. Kevin will be home too.. so I'm heading off to a jewelry party that Kev's boss invited me too. Unfortunately I won't have a designated driver, so no mojitos for me, but at least it will be a change of scenery for a couple of hours. Yay!! And I think Saturday we'll go to the lot down the road and look for a Christmas tree!

Good evening wonderful readers. Bit of a long and tiring day for Glen especially. Met with our financial advisor today... about a 40 minute car ride, which he handles pretty well. But then there were discussions of things Glen preferred to not talk about when he was healthy, let alone now! Bottom line though is that financially short term, we will be fine, and long term I will fine. Not really a surprise, but good to have confirmed.

Interesting day yesterday.. Dr North wants Glen to be seen by a psychiatrist, see what's going on with the FTD. So preferably someone with an interest in neuropsychiatry. I told him we had been referred once before and were never able to get past the "moat and dragon" Kaiser uses to surround their specialists. Instead, Glen had a couple of appointments with a therapist that referred us to a couples communication class and told Glen he didn't need to come back. Doctor said he'd give us some help getting past the fortifications. So yesterday.. we get a call from Kaiser Santa Teresa starting the whole intake process all over again... and asking if we wanted to see Glen's previous therapist again!!! Um.. no? She totally missed that there was anything going on, why would we want that again? Plus, she can't do anything about medication tweaking anyway! Mentioned ALS at least 3 times.. woman on phone didn't care. Got mad at Glen when he didn't respond to questions on the phone.. hello, ALS, doesn't talk much. I was upset when I got off the phone, and Kev suggested I e-mail Robyn, Dr North's wonderful nurse. I did, got an answer within 1/2 an hour saying how sorry she was this had happened and that she'd pass the info on to the Doc. Phone rang as I was getting dinner into the oven... it was Doctor North! Can you imagine having a doctor that cares so much about your personal situation that he phones!! Last doctor I knew like that was the one taking care of my grandma.. 30 years ago!

So... he said not to worry, he was going to find someone for us and get it set up. And I somehow believe he'll find a way to make it happen. He and Robyn are very protective of their ALS families. It's very reassuring.