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.

Been a busy week or so. Saw Dr. North November 20. Physical progression not terribly fast but noticeable, most especially the swallowing issues. Doctor gently presented the reality of there being cognitive issues to Glen, that it happens in about 10% of cases, etc. [For those of you keeping score.. that means in the entire country there are about 3,000 cases of ALS with FTD] I'm not sure Glen really understood it all, but at least it was coming from the doctor. We increased his Celexa, his liver numbers are good enough to stay on the Rilutek for now, and his other meds remain the same. Doctor North is also trying to find a Kaiser psychiatrist with an interest or background in neurology to add to the team. We will see Dr North again in about 10 weeks.

Same afternoon, we saw Shannon, the respiratory therapist. Trial 3 with the BiPAP. This one seems to be going well but that's what I thought the first time. We'll bring the machine back in the morning. Even if they DID get good data readings this time, we have to order the machine so who knows how long until he actually gets it.

Monday we saw Belen, the speech pathologist. No real changes there, just reminders to eat and drink slowly. She also brought up the feeding tube... an idea Glen is absolutely against. He was strongly opposed even when he was more present mentally, so we'll wait and see but at this point I'm guessing it won't happen.

Spent Thanksgiving at Glen's mom's house. He was wearing a bulky sweater so the weight loss wasn't terribly obvious, and he pretty much sat on the couch quietly. When there's lots of activity swirling around him he tends to become more quiet (unless it involves South Park or Loony Toons... or Disneyland of course.) And I made a point of cutting his food extra small with lots of gravy so swallowing wasn't an issue. I think there are some people out there that think I'm exaggerating about the progression of Glen's symptoms. Wish I was.

Last night we had "2nd Thanksgiving" with Sharon & Kev & Rushi & Rush's brother Akshay. Turkey, dressing, cranberry sauce.. the whole 9 yards. Very yummy, and official holiday leftovers for dinner tonight. Thought it was going to be a little crazy with all 4 dogs in the house (my two and Sharon's two schnauzers) but they were GREAT. They played all day, and even the two puppies (Baron at 20 months and BeBe at 6 months) were surprisingly careful around Glen.

Hope you all had a wonderful Thanksgiving, and now.. onward to Christmas!!

Wow.. is it Thursday already? Week has gone by fast. Some demonstrations of Glen's tendency towards poor judgement made it a long week. Because he can't sequence he very much wants what he wants when he wants it.. which is usually NOW. It's hard for him to grasp that I can't stop in the middle of stir-frying to get him down pills that he doesn't need until bedtime, for example. And then there's the tendency to want to talk to every dog and/or small child he meets... all his good "doggie manners" about asking before approaching are gone. Going to get him either bit, or in trouble with some baby's parent, if Kev and I don't remain extremely vigilant. And the eternal vigilance is what is so energy draining... vigilant that he doesn't choke, vigilant that he doesn't frighten a child, vigilant that he doesn't approach the wrong dog.

Kev and I realized tonight that we don't get any quality time to just talk things through, because life is spent trading off. So I think some time in the future we will call on a nearby friend (yes, John S., that means you!) to come down and hang out with him for a bit so Kevin and I can reconnect.

Appointment with Doctor North tomorrow. Last one was 3 months ago... Glen was driving, running, riding his bike, going to work. Wow. Sometimes at night when I know nobody's there, I'll call Glen's work number because for some reason, they've left his voicemail message on there. It's startling how much his voice has changed.. but I call just to hear his voice.

Kind of an up and down day. Started off being awakened by my dogs, who were telling me "Dad's locked himself out!" Good dogs... Glen was in the garage, and the door to the house was locked. Then followed a conversation about him driving himself to church. It's a little frustrating.. he had the realization himself that he was unable to drive... but now he's forgotten that. Reinforces the need to keep the keys out of sight, and basically, need to keep somebody with him.

Then I had a little difference of opinion with our choir director. I've always felt he kind of brushed me off when I explained that Glen was sick. Today, in the middle of Mass, he was trying to rush Glen through some rather complicated harmony he somehow thought Glen was going to be able to do. Sent him an e-mail with some appropriate reading material. Grrrr. He responded with an apology, and the comment that he had no idea how far Glen's illness had progressed. Well gee, fella, you only see him EVERY WEEK. [alright. taking deep breath now]

So, ok, fast forward to this afternoon. Kev & Rushi were here, we were doing chores (including Glen). Then Kevin remembered there was a Loony Toons marathon on Cartoon Network!! So... lonnnnng break from cleaning. Time spent as a family watching cartoons and LAUGHING!! It was obvious Rushi hadn't seen a lot of them, which made it even more fun, and it was apparent that slapstick humor still has huge appeal for Glen! We even skipped some of the football in order to watch cartoons. Great fun.

And so ends our week off of doctor appointments. Physical therapy tomorrow, Dr North on Friday, as well as attempt number 3 with the BiPAP breathing apparatus. They say third time's the charm, so keep your fingers crossed!

Happy Wednesday. Busy past couple of days, trying to catch up with the things that decided to break while I was sitting with Mom or planning and attending her funeral. Garage guy is amazing.. second time we've had him out. He was here for about twenty minutes.... mayyyybe half an hour... fixed the opener, adjusted the springs (which he'd installed about 6 months ago), programmed the opener built into my Pilot, showed me how to program remote openers myself, and where to buy replacements the cheapest. (Home Depot)

Today, handyman came... fixed the door frame around Kevin's door (which Kev & Glen managed to break when the doorknob got stuck), replaced said doorknob, and installed a new deadbolt on my front door. Work was good, he went out and got the hardware so I didn't have to, prices were good. Yay. Kev & Rushi got the rest of the stuff from Mom's place out of my car, so tomorrow it can go in for its oil change while we go out to breakfast. Now all I need to do is get the heater fixed.

Got into a "disagreement" with Glen today about chips. They were making him choke.. he was continuing to eat them. Asked him if it was really worth it to eat the chips. He said yes. Sigh. He is adamant about not wanting a feeding tube, so really not much I can do except be ready with advice to put his chin down when he swallows, and a good heimlich at the ready. (OK, it's a lousy heimlich but it does the job.)

His "run" took him over an hour yesterday to do a route that normally takes 45 minutes. Turns out he was looking for someone in the park... not anyone he would really have expected to be in the park. Scared the daylights out of me but he's ok. Going to limit "runs" to mornings when his head is usually clearer, and see how it goes. Again that tightrope between his safety and his independence.

Physically, his arms are markedly weaker. He can no longer put on or take off his own jacket or bathrobe.. things that open in the front. Oversized, over-the-head shirts and sweatshirts he seems able to handle. Need to start looking online for elastic waist pants ... seen some that are still nice looking, but easier to get on and off. He's speaking less... hard to tell if it's because it's more difficult physically or if he's withdrawing more. Probably a little of both. Gait is more halting, and he's starting to trip a little more easily.

He doesn't like to talk about future issues, but when we were clearing out Mom's apartment, he suggested we keep the walker and the cane as well as the wheel chair. Not sure if he'll actually be able to use the walker, but use it or not, any equipment can then be donated to the ALS Association loaner closet so it's ok.

Guess that's about it for now. Take care all.

Not even sure where to start. Got through the rosary and funeral pretty well. It was stressful for all, more so for Glen of course. His "schedule" was turned upside down, and he couldn't keep track of me, Kevin and Sharon, to say nothing of being in strange places and eating at strange times. He was a trooper but it definitly took its toll.

For most of us, the rosary/wake went especially well.. Uncle Rich was in great story-telling form, which would set off a wave of associated stories.. good times. Don made a dvd of photos from Mom's life which was amazing. Sharon read her 3 am summation of Mom.. it was perfect. Afterwards, Glen went home with Kevin while I joined Sharon, Mike and others for dinner and a lot of laughter at Chili's.

Funeral (um) was (uh) nice. (Sorry.. kind of an in joke.. there were a few more um's and er's than there should have been). Instead of a limo, we had a party bus big enough for siblings, cousins, spouses, significant others. Twas a touch drizzly in Colma... which means by anyone else's standards, it was raining. Figures that the one time we request graveside instead of chapel at Holy Cross it's freakin' WET! Told Glen it was ok if he wanted to wait in the bus... did NOT have to bring it up twice, which was good. Don't need him catching a cold. Then it was off to Molloy's.. pizza, chocolate cake, beer, Irish whiskey, pool, singing... doesn't get much better.. mom would have been thrilled. When we got there, Don bought Mom a Manhatten and set it on the table. Last thing as we left, Shar and I split the maraschino cherry. Twas fitting!

Glen's obviously tired today. He was going to go to the Y for a bike ride... didn't take a lot to talk him out of it. He's pretty quiet and had one choking incident this morning.. happens more easily when his muscles are fatigued. Mostly spent the day watching football while Kev and I excavated for the kitchen, with some success I must say! Tomorrow, will work on finding more of the house.. luckily, lots of football on!

Is it really only Tuesday? We lost Mom early Sunday afternoon. The past couple of days are a kind of a blur. Funeral plans, cleaning out the apartment, trying to catch some sleep. Unfortunately missed a couple of Glen's appointments, but they're rescheduled for later dates.

Glen continues to take it hard. Even after mom died, while we were waiting for the mortuary to come pick her up, he came in a couple more times to kiss the top of her head. Tonight we were meeting with the priest who will be doing the Mass on Friday. Kev had to work, so Glen had to come with me. He was sitting behind me, and at one point I looked over and he was just sitting there crying quietly.

Tomorrow we have no appointments, no meetings, everything we needed to take out of the apartment is in my car (the garage door broke yesterday as Sharon and I were leaving for the meeting with the mortuary. cars currently have to live in the driveway. My Pilot's an amazingly tough car!). Barring any surprises maybe everyone can sleep in?

Wow.. long week with no end in sight. Not much new to report on how Glen's doing. His legs are a little weaker, and his lack of attention span has made it harder to work out the logistics with Mom but otherwise he's doing fine.

My mom is basically comatose, non-responsive. She's in her apartment, in a hospital bed, with round the clock hospice nursing and lots of pain meds and anxiety meds. One of us is here all the time. Niece Danielle has been able to take a lot of the night shifts, which is good because she is an RN. Long shifts make one truly appreciate ones own bed and shower!!

If Glen is here with me, he gets agitated after a fairly short amount of time.. will check the halls for Sharon or Kevin or whomever is not here that is on his mind. We have it set up so he can watch TV in the other room but he comes out about every 10 minutes, kisses gramma on the head, then goes back in the room.

It's hard on him when he demands to go home and I have to make him wait. It's hard on me when he demands to go home and I take him but I don't want to leave. Kevin's been amazing but he has school and work and I don't want him letting any of it slide. Going to contact his doc tomorrow and see if we can raise his anxiety medication at least while this is going on.

We've all said our goodbyes (more than once.) We've had it quiet, noisy, musical, tv on, tv off, buzzing with activity or quietly reflective. It's brought out the best and the not quite so best in many people.

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!

Glen was a much happier camper today. After we forced fluids on him yesterday (not sure he'll ever eat another popsicle!) he had a better night's sleep last night. Took him to Starbucks for breakfast, which also made him happy. Reinforces that rest and hydration will be keys to a happy vacation!

He was watching TV while I was writing out packing and shopping lists. He asked if I'd noticed what shirt he was wearing, and I said yes.. he wears it a lot. His response: "I reallllllly like this shirt. It says [he pointed to each word as he slowly read it] Gears for Glen." He went on to say he really likes what the back says too. I asked if he meant where it said Defeat ALS and he gave me a big grin and a thumbs up.

Got a brand shiny new camera for the Disney trip. My last camera gave up the ghost in Vegas. Don Bear may have done something to it.. who knows. But it's amazing how much more camera one can get for how much less money than when I bought the old one 5 years ago! So I should have lots and lots of pictures to share with y'all.

Started a new prescription today.. it should help with both the sleep problems and the anxiety. THAT would be awesome, especially heading to a new place and new adventures.

Past few days have been busy, but really pretty uneventful. Glen's anxiety level remains improved with not working, but he's still struggling with sleep, so hopefully we'll be able to get the sleeping meds from the doctor before vacation starts.

I also have a hunch the heat is causing some dehydration problems again,as last night he was having a few more difficulties with confusion. So today I said no gym and I've set a timer and once every 45 minutes, he has his choice of jello, watermelon or popsicle. So far popsicle is the winner every time. Of course... the no gym/lots of fluids ruling earned me "the look" but.. heck, I think I'm becoming immune to it!

Disneyland is this week, so Kev & I have lots to do to get ready... getting excited though!

One more mission accomplished: Glen called his boss and told him he'd be taking vacation from now through the Friday after Disneyland. His boss was fine with that. Glen must have commented at least 3 0r 4 times how relieved he felt that he didn't have to worry about going to work. I'm pretty sure he won't be returning to work full time. Whether he wants to go back at all we'll discuss after vacation. For now.. he can be more relaxed going to sleep knowing he won't have to get up at any particular time.

Glen decided we should go out to dinner last night, so when John came over we went to MegaByte.. Glen's favorite eat there pizza place. Wonderful visit, great pizza, one pretty bad choking incident (sorry John.. hope we didn't traumatize you TOO much!) Stopped on the way home for hot chocolates all around, and Glen managed to stay up and visit until almost 10! He was actually reasonably engaged in what we were talking about which was nice to see, and told John about his upcoming birthday breakfast with Goofy.

Today Kim from the ALS Association came for a visit. It was lovely to meet her in person. I can see she's going to be a great source of practical, solid answer information! She told us the MDA has a Loaner Closet where we can borrow equipment the doctor has okayed, until we can facilitate getting our own. (Sometimes the need for something sneaks up on us quickly.) And yes.. that's the Muscular Dystrophy Association. Glen is registered with them as well as ALSA and gets quite a kick out of being "one of Jerry's Kids".

Among Kim's suggestions was that we seriously consider hiring some help with the yard and housework so that Kevin and I don't totally burn ourselves out. Again... when we get back I will try to look into it. Sharon's been after me for probably two months now to do exactly that. Now.. after surrounding myself with smart people I must learn to take their advice. Kim also made a comment that I believe was the highlight of Glen and Kevin's day... we were talking about Glen having to learn that he cannot work out to the point of exhaustion, because if he damages muscle, it won't recover. Kim commented that it sounds so easy.... then turned to me and said, "but ... it would be like someone telling you you can only spend seven minutes a day organizing." I said, "But... but... I'd end up eating the sofa pillow!!" She smiled and said, "Exactly." I tried the innocent, Scarlett O'Hara "whatever do you mean!?" face... but nobody was buying it and the men in the family had a good chuckle. Kim also thinks the BiPAP machine is going to help Glen feel much better.. we have respiratory therapist appointments mid-October.

After Kim left, Kevin and I were actually able to go get some lunch and do the grocery shopping. Glen took a nap while we were gone which was excellent... he was relaxed enough he actually slept, and because he slept he wasn't sitting here worrying about why we were still gone. I called once while we were out (woke him up.. oops) to make sure he was ok. He went back to sleep and didn't wake up until we got home.

I don't think we have any big plans for tomorrow... wouldn't that be nice? I probably shouldn't get my hopes up though!!

Well this is different... writing in the morning instead of at midnight. We'll see if it helps my spelling. I have my doubts.

So what's new. Went for an "assesment drive" Sunday afternoon to see how I felt about Glen continuing to drive. I will admit... I was really surprised. If anything, Glen's driving has improved! He's much more cautious and far less agressive than he used to be. Of course... that was Sunday, and he hasn't wanted to drive since! He's talking about going to the Y today.. but that's only a couple of miles down the hill.

Went to the attorney's office yesterday and got everything signed: Living Trust, Wills, Power of Attorney, Advanced Directive. Just knowing that's all in place is a huge relief. Still need to get copies sent to various "powers that be" like Kaiser and the Lockheed and UTC benefits people but that's the easy part.

Glen's energy level seems to still be way down. He took Monday off, worked half a day yesterday, is taking today off. I've asked him to find out from his boss or the benefits office exactly how much sick leave he has coming. I know where to find the info on his vacation time. Since we're going on vacation next week any way, I may try to talk him into just planning on taking the next 2 weeks off. It really is time to start transitioning him to disability. It's a scary transition.. but one we need to face.

John Chickosky is joining us for dinner tonight... further inspiration to remove the top layer of retriever hair from the carpet! Had planned on spending the day cleaning house and grocery shopping... now I need to add in making sure Glen's ok, and probably a call to the doctor. Hope John's up for pizza!

OK, guess I'd better get to it.

Gears for Glen Rides!

So I guess you're all wondering how the ride went huh?

Well... let's see what I can do to catch you up! Friday was a crazed day of laundry, packing, making sure treats were in the freezer for the dogs, note was on the back door for dog sitter, etc etc. And still we made it out by around 1:30... not too bad. Mandatory Starbucks stop and we were on our way. Traffic was bad, but not hideous. The car behaved beautifully... triple digit heat, stop and go traffic, air conditioner running and it never skipped a beat. I love my car. We have the first 4 Beatles cd's Starbucks is carrying, so we did a lot of singing on the way to Fairfield!

Stopped once for milkshakes... Kevin and I have to be careful.. this keeping weight on Glen thing could be dangerous! Got check into the hotel. Took a rest.. went to dinner. One minor choking incident at dinner but otherwise uneventful, and the food was really good. Back to the hotel where dear friend Lisa and her two girls stopped by to wish us luck. Lisa's eldest, Heather, is now entering training for her Navy career, so it was a good chance to see her off too!

Up WAY earlier than we wanted to on Sunday. Kev went and got coffee and breakfast and brought it to the room. What great kid!! Packed up and headed to Yountville, and once again the GPS in the car was flawless. Met up with the Garrett clan, along with our nephew Brian. Gave everyone their Gears for Glen shirts... Sue Goelple of Saggittarius Screen Prints, a dear dear friend dating back to homeschool days, did an AMAZING job. Everyone loved them, and looked awesome. (team photo coming soon... need to get Kevin's camera so I can get the rest of the pictures.)

So... off went the Garretts on the 25 mile ride, then half an hour later, the Campagnas were ready to go. Glen had trouble getting started... there was a slight downhill, and he was struggling with the toe clips as well. Just really couldn't get the bike moving. With some patient help from Brian and Kevin, he got started and off they went... Brian leading the way, Kevin bringing up the lead, Glen tucked safely in between. Once they got going, they really didn't want to risk another start up issue, so they did the entire route without stopping, and Glen made it all the way. According to Kev's trip computer, it was closer to 13+ miles than it was to 10.

While they were out, Sharon and her schnauzer puppy BeBe were there to keep me company, as well as getting a chance to chat with other ALS families and hear their stories. A little over an hour later, the Campagna contingent returned triumphant, having completed the entire route! (Yes.. I know I already said they made it all the way. I'll say it again: Glen rode his bike over 10 miles! With no stops. It's amazing!) The overcast managed to keep the weather relatively comfortable for most of the morning, so while people were tired and thirsty, we had no dehydration problems. However, Glen's legs were tired enough he couldn't get off the bike. Again.. Bri & Kevin demonstrated the kind of creativity ALS tends to inspire, and without batting an eye... the took the seat off the bike,and rolled it out from under Glen like it was the most normal thing in the world. Did I mention how great they are!?

Soon after Brian left to take care of his own wonderful family, the Garretts made it back from their ride and about the same time... lunch was ready! This made Kevin a much happier camper.. and me rather uncomfortable because it turns out the Veterans Home in Yountville has a yellow jacket problem, and as soon as Kev brought his plate back, he got swarmed. He didn't seem to mind much, but I'm allergic to the little beasts, and I really didn't want Glen to have to deal with them! Interestingly, we moved to a table much closer to one of the many yellow jacket traps, and they left us totally alone!

After lunch, it was over to Penngrove for a visit with cousins we hadn't seen in ages, at Chuck & Karen Campagna's home. Gave Glen & Kevin a chance to shower, and Glen a chance to get in some more groceries! Food and friendship were both wonderful, and all too soon, it was time to head back to San Jose.

Got home to find that my dogs had been PERFECT, thanks to a wonderful dog sitter and a couple of really good dogs. This morning everyone slept in.. yayyy!!

I've posted the first of the pictures at www.picturetrails.com The username is twoskaters, and the ride pictures are in the Glen album. There are more pictures, but I need to get Kev's camera from him so I can upload them. For some reason, the pictures from my iPhone didn't come out great on picture trails. I'll try to tweak them this week.. in the meantime, if you have a Facebook account you can see them in my album there.

I don't have a final fundraising amount yet, but it is over $5,500 for the team. You're all the best... thank you!

And as always, nothing is ever quite what it seems. Glen had what he called an "excellent" night's sleep last night. Decided he was ok to drive to work... phoned me when he got there safely. When he got home he had his Ensure snack, then went on a "very good" bike ride. I think he just needed the rest day yesterday! Nice to see him perky.

T-shirts came for the Gears for Glen team today... they are AWESOME!! Sue at Saggittarius Screen Print designed them for us... she was one of the first people I met when we were considering homeschool, and she's very very talented. And speaking of Gears for Glen: totals right now Kevin: $5195 Team total: $5455 When we first started this project, the suggested $1500 goal seemed outside the realm of possibility... little did we know what wonderfully generous family and friends we have.

Tomorrow is hand therapy, then a visit with the dog sitter who's taking the critters when we're in Disneyland.

Very pleasant day, even if it got off to a bit of a weird start.

Woke up about 6:30, and realized Glen hadn't left for work yet. He was on his way out the door, but said he hadn't slept well at all. Not terribly surprising after the long, busy couple of days he'd had, and for some reason his cough was bad last night.

I asked if he was ok to drive, and he said "I think so." Wellllll... "I think so" wasn't going to cut it, so I asked if he wanted me to drive him to work. He took me up on it, so I went and threw on some sweats. When I came out, he was sitting looking very tired... I suggested he might want to call in and take an actual "sick day"! He did.. and we both went back and got another 2 hours of sleep! Then we went out to Starbucks for breakfast... I had my reduced fat breakfast sandwich and non-fat quad latte. Glen had: a sausage/egg/cheese breakfast sandwich, a pumpkin cream cheese muffin, and what Kevin calls the "Dad Mocha":a 1/2-caf grande mocha made with breve (half & half), with extra cream, whipped cream and chocolate drizzle. Came home and he relaxed while I worked on paper work including entering the most recent ALSA Ride checks. After Kev got home, we played Beatles Rockband. Glen chose to sing... the man may not remember what he had for lunch, but he remembers Beatles lyrics that I swear I've never even heard! The game is great... the background graphics are so trippy... one has to remember to not look at the backgrounds... they're really distracting!

So I believe tomorrow I am indeed driving Glen in... the agreement being we don't leave until after Starbucks is open!! I'm not driving to Sunnyvale and back without caffeine! He actually admitted to me that driving is getting more difficult. Not surprising, as he's definitly lost more function in his left shoulder.

And tonight's post ends on a very positive note: As of today, Kevin reached his goals for both personal and team fundraising for the ALSA bike ride! He has already raised more than triple what his original goal was. Anyone who would still like to donate can go to his web page: Curbstomp ALS!!!

Happy Monday.

Wedding last night was delightful. Danielle was a breathtaking bride. Michael was beaming happiness. The duck quacking after every line of Michael's vows gave the appropriate amount of humor. And the fact that 2 generations of my family can think the same line from Princess Bride at the exact same moment let us chuckle together without seeming to be inappropriate. All in all a good time!

Glen did well... got a little edgy when I was out of sight for too long, and we had to leave long before Aunt Katie wanted to (ok, I missed my brother and sister dancing! I want pictures!!) but he seemed to have a good time.

Now in order to describe my morning, you are about to get the Reader's Digest abridged class on breathing machines. There is a CPAP machine.. it is used to help people with sleep apnea. It uses a constant stream of pressure to maintain the airway at the back of the throat... throat doesn't close, no apnea, person feels better. The person with ALS has a weakened diaphragm. Makes it difficult to exhale against the pressure of the CPAP. There is another machine.. called a BiPap. Pressure is lowered during exhalation. Person with ALS maintains an open airway... sleeps better [or depending on progression of disease, breathes better during the day] feels better. Not really rocket science, but does require the ability of the prescribing powers that be to read a fricking chart.

So... we get a card saying Glen - based on the at home sleep test we did twice - has mild sleep apnea and has been assigned to this CPAP class. To three different people I say "But...he has ALS.. CPAP?" and am told no, we need to go to this class. So we get to the 9 am class, listen to a 2 hour lecture (which actually was at least interesting, the Doc did a good presentation). She asks for questions.. I raise my hand, nod towards Glen, and say "He has ALS.." and before I could say another word she says, "Oh! He needs BiPap.. in fact.. this isn't even the right class for.. just talk to me after" Managed to not swear out loud. So after the class, when everyone else is making appointments to get their CPAP machines, they write a note next to Glen's name saying "needs BiPAP" and the respiratory therapist is supposed to call with an appointment. Another two hours of our lives we'll never get back.

Have I mentioned Glen's time management skills are.. to be nice.. not what they used to be? So we get home at 11:30. We have to back at Kaiser (1/2 hour away) for a 1:30 appointment. He decides he needs to go for a "run", take a shower and eat lunch before we can leave. Made it back there at 1:28. Then, after a run AND physical therapy today, he says he's going down to the Y. I finally just said no... no you're not. Your doctor told you NOT to fatigue yourself!!!

Made chicken soup, and we're all flaked out watching football. Oh. Wait a minute... ok, we WERE all flaked out watching football. Now Kevin and I are watching the Raiders, Glen is walking the dogs. And with that... g'nite all!

Wow! Over 400 hits! My faithful readers are.. well.. faithful!!

It occurs to me that some of you might be interested in learning more about ALS. So I submit the following as my recommended reading list:

(recommended by Dr North's office): National Institute of Health ALS fact sheet

(Handout from UCSF): ALS and Cognitive Changes: a guide for patients and families

(From WebMD): Dementia in Amyotrophic Lateral Sclerosis

So, the UCSF folks suggested a vitamin regimen including Vitamin E, C and beta carotene. Anybody ever seen the size of a Vitamin E capsule!?!? Now.. think about trying to swallow that when you choke on water. Yipes! An internet search today yielded powdered versions of E, C, beta carotene, his multivitamin AND glucosamine!! In fact, the C and glucosamine are in the same drink powder.. one less thing to take!! The other powders can be mixed with a bit of ice cream or applesauce for much easier consumption. Let's hear it for the web!!!

Going to my nephew Michael's wedding tomorrow. (That's the McLaughlin Michael, not to be confused with the Campagna Michael or even the Marziano Michael whose birthday is today!) Hopefully it will be a fun outing.

Have a nice weekend all.

Good evening good people! Been a long day (and I fear I may be a little under the weather.. hopefully just fatigue!) but let's see if I can catch you up.

We met with Dr Loemen-Hoerth at UCSF today. What a very nice lady. She looked over Glen's records, did some testing of her own, talked with both of us. Nothing surprising in her conclusion that yes it's ALS. She did address the cognitive issues more than anyone before her, and again pretty much confirmed what we already knew, that there is in fact cognitive involvement/impairment. She sent us home with a lot of literature to go through... Glen was reading one of the items on the way home and said, "This says I need to drink more liquids." Slapping myself aside the head I gasped "Wow! I should have thought of that!" Yes.. I do occasionally resort to sarcasm. Go figure.

So, she will be asking Kaiser for the result of his sleep test so her respiratory therapist can review it; sending some recommendations to the neurologist regarding changes in medication/dosage to help address the anxiety; and suggesting a few more tests. She also was interested in Glen taking part in a medicine study but wanted all three of us to look it over and decide because it involves the placement of a catheter in his neck, and weekly trips to UCSF. At first glance, there's also some concern for me because the medication they are studying can have adverse effect on the kidneys, and he does have a family history of kidney disease. So.. lots to talk about, lots to think about.

In the meantime, we had a somewhat more serious issue with choking at dinner tonight.. I really need to watch what size bites he takes more carefully. Which he resents. And around we go.

But I will finish this post on a good note... when we got home from the City, Glen was really tired and actually listened to my suggestion that he take a nap. When he got up, he had a snack of Ensure. After his nap & snack, he took his bike ride and came home with a HUGE HUGE grin on his face.. he said it felt REALLY good. So... apparently the whole rest and hydration thing works?
Love y'all.... g'nite!

First things first... need to keep this at the top of the blog:

Curbstomp ALS!!

We're getting really close to the team goal of $5000, and to Kev's personal goal of $4000 All the little bits add together to one big bit... and thank you SO much to those who have already donated. If you haven't had a chance yet, please take a moment to visit Kevin's page!

So today was a day of ups and downs. Conversations were less than clear, time sequencing was a real challenge.. leading to a frustrating morning for everyone. Went to the Labor Day block party, which was fun. Glen mostly sat with his plate of chips and only talked to me, but seemed to have a reasonable time.

On a better note, we got his bike tire fixed yesterday, on the condition that the first time he rode, he would go with Kevin so Kev could do a safety check. They made it about four miles. Kevin said that hills were really difficult for Glen, but his hands seemed to have the strength to manage the gears and brakes. So he's cleared to ride for now... especially if he rides near his office, which has a lot of flat, away from traffic bike routes. He has his Levi Leipheimer RoadID bracelet with not only the home phone, but also both my cell number and Kevin's. And he takes his cell phone with him in case of a problem.

Tomorrow we'll finish gathering the information for UCSF, and be there bright and early on Wednesday morning.

Sunday night... Glen's asleep... dogs are asleep... cat is asleep... Kevin's at Rushi's... nice! So what's new.

Met with the physical therapist for the first time on Friday. Again, very nice. She's an athlete (big surprise), has done a couple triathlons. Worked a lot on stretching Glen's shoulders so they don't lock up, and on trying to strengthen as much as possible the small muscles in his upper back. A lot of the "homework" exercises are similar to those from the hand therapist, so we should be able to get everything in within a reasonable amount of time... meaning, before we've exceeded Glen's attention span.

I went out for dinner Friday evening with Sharon. Kevin and Rushi came down and had pizza with Glen. They left before I got home (actually saw each other at Starbucks). Glen was probably on his own for no more than 20 - 25 minutes. As Sharon and I were pulling into the driveway, the garage door opened.. Glen was heading out to go look for me because he was worried. He'd tried to call my cell, but I'd been on the phone (with Kevin, go figure, we were on the phone for literally 2 minutes) and the voice mail didn't come through. This happened once before when Kevin was the one that got home later than Glen thought he should and Glen went looking for him. His anxiety level is increasingly an issue, especially at night... something I'm going to have to talk to his doctors about.

Today was reasonably uneventful... maybe we can string a couple of those together!

I know I owe you all an update.. but tonight my brain is just plain weary... will post tomorrow after hopefully a good night's sleep!

Finally got to meet Belen, the speech pathologist, yesterday! It was she who finally said Glen needed to see a neurologist. The road that sent us down may not have been a happy one... but at least now we have a road map and access to a GPS, rather than wandering aimlessly.

So, she felt Glen's swallowing was a little weaker than the last time he saw her. We talked about eating slowly, skipping the squirt bottles and ordering thin crust pizza. He doesn't seem to swallow thick liquids any more easily than water so she said not to worry about that for right now.

The biggest concern right now is keeping his weight up. He likes to keep track of the calories he burns on the elliptical... so I've suggested we use that as a guide: if you burn 200 calories, you have to ADD that many calories to what you would normally have eaten that day. Boost, Ensure, mayonnaise, whole milk... as I keep saying, demonstrating again God's twisted sense of humor: Kev & I just take everything we've learned at Weight Watchers, and reverse it!!

Ahhhhhhhh. 10:15, Glen's asleep, dogs are asleep, Kev's at Rushi's... and I have a wee bit of down time! Yay!

Hand therapy went well today. She's pleased with the strength he's maintaining. Made a couple of suggestions on how to make things better at work.. he demonstrated his typing technique, and there's a chance he's tightening his shoulders to get his hands to an angle where he can type... fatiguing muscles that he doesn't need to fatigue. He's going to talk to his boss about either raising his chair, or getting a desk with a dropped keyboard. Kathlyn (the therapist) had me taking copious notes (which I still need to transcribe of course) and we left with some new exercises and a new list of equipment Kev & I need to figure out how to make. At least my creative side is getting SOME kind of workout!

Tomorrow is the speech pathologist. This lady is my hero and I am DYING to meet her... after 3 years of trying to get some kind of answers, it was the speech pathologist who finally saw that yes, there was something going on, and it wasn't just my imagination! I will be forever grateful to her!

We talked about Michael & Danielle's wedding... I offered Glen a couple of options to the standard suit & tie, but that's what he really really wants. So he agreed that he would use the button hook and let Kevin tie the tie, and he will be simply dashing for the wedding! Now I just have to figure out what Kevin's going to wear!

Been pondering the changes we've already seen in our lives. Being aware of Glen's moods before we go out... is he hydrated, rested? If not he'll often get agitated or withdrawn.. making the outing more stressful for everyone. Planning around doctor appointments (we have three this week, and an all-day one next week). Just doing research.. making sure I'm as knowledgable as possible about this stupid disease so that I know what questions to ask, etc. Lawyers, financial advisors, on and on. All the while having a house and yard to keep up, pets to care for (Baron's only 18 months old... bless his heart, I think he's an old soul in a new body but still, his training is nowhere near where it should be by now) We are very blessed to have some amazing support people.

Interesting yesterday.. just to give me a break, Kevin took over the "insist glen stays hydrated" for the afternoon. Wrote out ahead of time that Glen was to finish three glasses of water before dinner. Normally, I would get an argument, but for some reason the note from Kevin worked... and Glen was much clearer in the evening. Kind of validates our belief that he's not taking in enough fluids.

He had a bit of an accident Saturday. Given the triple digit heat, I didn't think a run/walk outside was a good idea so suggested he go to the Y instead (air conditioning goooood). Even he acknowledged later, his "denial" got in the way, and when he went down there, he chose to do the treadmill and set it at a rate he could have done a year ago. Unfortunately he couldn't keep up and took a bit of a spill. He's fine.. skinned knee and bruised hip. Since then he's used the elliptical machine instead and seems to be enjoying that. Going to try to get him to use the pool too... he may be surprised at how easily he can "run" in the water!

Finally got our referral to UCSF! We have an appointment on September 9 at 8 in the morning (Ugh!! I thought my days of driving to San Francisco before dawn were done!!) They will do a full bank of tests and evaluations and then recommend treatments and therapies accordingly. They too think Dr North and his staff are wonderful! Nice to know they work well together!

Little bit of a scary moment this morning... Glen got disoriented leaving before sunrise (he always leaves before sunrise, but there were no lights on anywhere this am)... ended up trying to get to the garage through the bedroom wall. We got it all straightened out though.

Had our first support group meeting with Dr North tonight. Very nice group of people. Of the 5 people with ALS there, no two had the same group of symptoms. They ranged in age from 30-something to a very active, vital 81. Mobile to wheel-chair bound. One lady was there alone, as her mom is in hospice now. One gentleman is going to do the ALS Walk the same day Kevin does his bike ride. Talk ranged from PEGs (feeding tubes) to drug studies to how to support caregivers. And Dr North is quite simply the best.

And the donations for Kev's bike ride keep coming in! You guys are the best too!

According to Glen he "slept great!" last night, so we'll try the melatonin and warm milk again tonight ... maybe we can string two good nights together.

He actually seems to be making some quick progress with the hand therapy. Even though the ALS general rule is once muscle is lost it's lost, the therapist said she thought she could get some use of the small hand muscles back. The first day we started the exercises it took the full 10 minutes to get through 1 1/2 sets, with great difficulty. Tonight, he did two full sets with relative ease, and didn't need a rest break. It was good to see.

A friend from UTC has joined the Gears for Glen ride team along with his wife and daughter! Glen's nephew Brian is also going to try to join the ride. This is really shaping up to be a fun event, and the fund raising continues as well. At last check, Kev's personal fund raising was a little over $2600, and the team total was over $2800. Kev has raised his goal again, to $3000.

Went to Mill Valley yesterday for the wedding celebration party for Glen's brother Mark and new wife Joan. (Nice party guys... those mushrooms were amazing!!!)

Glen seemed to have a good time. He was pretty tired by the time we got home... the good news being after his therapy exercises, some warm milk and a melatonin tablet, he said he actually slept pretty well.

I would like to see him take a little more responsibility for decisions, therapy, etc... he's a little too willing to let me do it. Being passive is not something you want to do with this disease.. you need to fight it every step of the way. I've told him I would like to see him work a little harder focusing on what he still CAN do, rather than dwelling so much on what he can't... he can still work, still drive, still walk, still breathe! These are very good things!

Not much coming up this week.. pick up the equipment for the sleep test, support group meeting on Tuesday. No doctor appointments that I know of. Ordered some adaptive items last week.. I think the long handled comb he's gonna like!

So we started the actual hand therapy exercises yesterday. Kevin and I went to Target and bought two bins and a bunch of objects... fuzzy tennis balls, raquet ball balls, a large resin cow, a not so large resin pig, a softball, a baseball, a couple of Aloha print nerf footballs, and the best.. a Hot Wheels bright yellow Ferrari. The goal is to move the items from one bin to the other by actually grasping and lifting them. When she told us 10 minutes a day, it sounded like an awful lot of time for a simple task. Shows what I know!

Since Glen's right hand is weaker than his left, we're supposed to focus primarily on the right. So with Kevin as our timekeeper, Glen began moving items. Well let me tell you... the man CHEATS!! Wanted to use both hands, or press the object up against the side of the bin and roll it into the other one! Harumph! I moved the bins further apart, and if he used two hands, he had to put it back and start again! And in that way, he moved all the items with his right hand, then back to the first bin with his left hand, then again with the right. He needed a break after each hand, and it was obviously a LOT of work... but he was a real trooper, and the three of us were able to keep it fairly light and laugh a lot. After the three sets... the timer went off! wow.

He seems to be having trouble sleeping again... sometimes because of anxiety (he doesn't like it if one of us is out when he goes to bed.. lays awake listening for the garage door). Changing the times of medications seemed to help for a while, but now he's struggling again. May need a different bed, or different pillows, or some actual sleep meds... if it keeps up I will call the neurologist's nurse, a wonderful lady named Robyn, and find out if she has any suggestions.

And... he has to do the sleep study again. They didn't tell us why. Could be the equipment wasn't on properly, or he just didn't get 4 hours of sleep that night, or... well, who knows. So he has an appointment next week to get the equipment to try again.

Later same day: This was posted by the alsa.org Facebook page. Nice perspective: http://www.latimes.com/news/opinion/la-oe-welsh26-2009jul26,0,5173890.story

Occupational Therapy

First, wanted to move this to the top: Curbstomp ALS!!

Now.. on to occupational therapy:

No.. it does not mean talking about the stresses of your job!! Actually, we met with a "hand therapist" in the occupational therapy department. She did considerable testing on range of motion in Glen's wrists and shoulders, pinching ability, grasp strength, etc. We were there for quite a while and left with a 4 part homework assignment. (Good thing I bring notebooks everywhere!)

Step 1: Spend 10 minutes 2x a day moving articles of varying sizes from one container to another... golf size whiffle ball, baseball, fuzzy stress ball.. whatever things of various shapes and sizes we put together.

Step 2: Stretching. Lots of stretching... especially back neck and shoulders. He has a page of exercises to do. I learned them too.. my neck feels better than it has in ages!

Step 3: "Work conservation" The idea here is to avoid working to exhaustion in any activity. Plan a run or bike ride so that it doesn't totally use up your energy. Don't stand if you can sit. Don't lift if you can push or slide. That kind of thing. This one's going to be a challenge.. totally goes against Glen's nature!

Step 4: Kathlyn (the therapist) sent us home with a catalog of "adaptive equipment"... all kinds of nifty gadgets to help with buttons, holding a fork or toothbrush, make it easier to comb his hair... all those little things the rest of us take for granted that will help Glen maintain independence. Now... Kevin & I are the gadget junkies... we're going through it "oh, that's cool! Hey, we could MAKE that!" But again... Glen would have to admit he's having an issue with something before actually asking. So Kev and I keep ours eyes open to what seem to be issues, then make or order appropriate "toys" and leave them available.

We will see Kathlyn again in about 2 weeks.

Followed up with Kaiser about the UCSF referral. Robin at Dr North's office is as nice as advertised. She admitted things were running a little slow (down one nurse due to swine flu!) but assured me that the referral and the all important authorization have now been forwarded to UCSF and the appointment information should be forthcoming fairly soon! I'm thinking about booking a hotel the City the night of the intake tests.. a little r&r might be good for both of us!

Heading to Mark & Joan's reception this weekend... again, getting out might be good for all.

Still having problems with keeping Glen hydrated after runs (actually run-walks now). I'm thinking some of it might be psychological... because he's walking as much or more than running, he doesn't acknowledge he's working just as hard and need to be hydrating!!

Switching to a glass with a straw for the gatorade helped some, but he still didn't seem to be taking in enough. Went to the store and got Superhero Popsicles!! Two Incredible Hulk pops later, and he seemed much perkier!

Hot weather again today, and again Glen had to walk part of his run route. It seems like hot weather is going to be an issue for him.

On a brighter note, fund raising for Kev's bike ride is going very well. He's almost halfway to his goal already... and is even considering raising his goal! It's very exciting and speaks to what wonderful friends and family we have.

Physical therapy starts next week.

Glen & Kevin to do ALS Ride together!

Kevin saw the announcement for the Ride to Defeat ALS and immediately decided he was going to do it. This year he's going to do the 10 mile ride so his dad can do it with him! Glen's having some difficulty exercising in the heat, but can still do 8 miles on his bike comfortably, so the 10 miler should be ok. We'll double check with Dr North but his mantra seems to be if you can do it, go for it!

While we are still working on e-mailing everyone to invite them to make a donation, or just follow along, here's a link to Kevin's page for the ride, including donation information:

Curbstomp ALS!!!

For those familiar with video games, yes.. it's a Gears of War reference. And the team name is Gears for Glen.

Appointment with the throat doctor today. While we're all getting pretty matter of fact about swallowing issues, it would be nice if the doc and speech therapist can give a little more help to avoid "food getting stuck."

Funny how perception can change... I was thinking things should be pretty calm this week. Kev's basketball game tonight, support group meeting tomorrow, ENT appointment for Glen Wednesday plus appointments need to be made with speech therapist, physical therapist and accupuncturist. But everything can be timed for after work for Glen, so yeah.. a little slower than the past few weeks.
Speech therapy is an important one.. she works with Glen on breathing well and swallowing safely. Physical therapy is to help with range of motion.. especially in his hands and shoulders right now. Dr Wang, the accupuncture genius, has worked with Glen and Kevin both on sports injuries. Not really sure exactly what he can do.. .but we're going to ask!!

Just thought I'd let you know.. it's Sunday and I DID get the dogs groomed! And Glen managed a pretty good run, but said he walked a good part of it.. no big surprise.. it's over 90 out there! He is still able to run 3+ miles or ride his bike about 8 miles daily.

The Journey Begins

If you're reading this, you probably already know the start... On Wednesday, July 15, Glen was diagnosed with ALS, or Lou Gehrig's disease. I've been looking for a way to keep our friends and family updated ... I love you all, but well.. if I tried to call each and every one individually I'd never get the dishes done or the dogs groomed!!

I will try to be consistent with posting.. bear with me if I sometimes don't. I do get a little whelmed over once in a while. I will also try to share more than just medical updates! In September Kevin and Glen and perhaps a couple of friends are going to do the ALS ride in Napa! (Yup, you'll all be hearing about fundraising!) In October, we'll be going to Disneyland to celebrate Glen & Sharon's birthdays. There is plenty of joy in our future and lots of good memories yet to be made. So... come share the journey with us!