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!