A Day in the Life

How do you fill your days? This is a question we receive often. On the spot, we both kind of look at each other and ponder "heck, what do we do??" There is no doubt that life has changed over the past year and Patrick's energy levels are not what they used to be, but the days still seem to be filled with quite a bit of activities. The mobility challenges do lessen what Patrick's able to do and although he doesn't jog every day, he does go out on his scooter with me and Roxie on occasion.  We have to be careful with his energy, it's limited and he doesn't function well if he's tired. Christmas shopping for four hours about did him in this week, but to be fair, it tuckered Caitlin out too.

Here are some of the items that Patrick spends time on these days... (this is an aside from harassing the dog, being a backseat driver and checking out his Facebook page...)

ALS Association Board
Patrick was asked to serve on the Sacramento ALS Association Board in November by the Executive Director, Amy Sugimoto. We are big fans of the association that has proven to be such a resource for us. The association serves ALS patients and their families through support groups, education materials and a loan closet. Surprisingly, this is the first time they've placed patients on the Board of Directors. This decision will add a new perspective to the board and help to keep their focus on the patient. In addition to Patrick, Susan Catlett was asked to serve on the board. You'll remember Susan from past blogs in which I refer to her blog from a patient perspective. With these two new additions, the association will benefit by adding the patient's perspective to their governance.

On a side note... Due to the tremendous mobility issues with ALS, medical supplies such as canes, walkers, wheel chairs etc. are a lifeline for many patients. Unfortunately, it often takes time to get these items through insurance so the association helps fill the void by allowing patients to borrow items from the loan closet. We are currently, borrowing a walker and electric scooter, so we didn't have to purchase these items ourselves. Just one of the tremendous services that the association provides.

Foodie and Pinterest
I'll let in on a little secret, if you are "following Cheryl Timmons" on Pinterest... "I don't Pinterest" instead you are following, Patrick Timmons who is a Pinterest junkie. You'll notice that on "my" Pinterest the vast majority of posts and categories are food related (except for the sock monkey category, which is Patrick's favorite stuft animal). Patrick is definitely a "foodie" as they say, even though he told me for years he doesn't care what he eats, "I'm not as picky as you..." The truth is he loves trying different foods and recipes.

So when he went on disability in October, I gave him the job of figuring out the weekly meals and putting the grocery list together. This is a task I've always disliked and I generally avoid things I don't like doing. Which means, I wound up slapping meals together at the last minute or simply getting take out. For the record I have about five signature meals, so dinner at my house is never very exciting (at least food wise). But with the new meal boss, Patrick, we are enjoying new recipes every week such as Ravioli Bake, Crock Pot Chicken Pot Pie and Meatball Sub Casserole. All of which you can see on "my" Pinterest page.

Sunday Night Dinners, Grand Kids and Family

BFFs!!

The family gets together every Sunday for dinner, we've been doing this for years and it's a nice tradition. The boys are always busy, Christian generally has a good story to tell and one never knows who Anthony will show up as.  I"ll let you in on a little known secret, I'm not a huge baby fan - I mean babies are cute, but I've never been much of a snuggler so although I enjoy seeing Sofia laugh, I probably spend a bit more of my time with the boys. Patrick on the other hand is Mr. Baby Guy, he and Sofia are the best of buddies. They are constantly giggling and smiling at one another as if they have some inside joke going on.

Corrinne asked me to babysit the kids recently, so that she and Justin could attend a Christmas Party. I said "ok," but then promptly asked, "All the kids, Sofia too?" Fortunately, Corrinne is aware of my uncomfortableness with babies so she laughed and told me, don't worry she'll be asleep by 8:15. What Corrinne forgot was that Patrick and Sofia in the same room is not a good mix for sleeping, they just make each other laugh. So finally at about 10:45 Caitlin and I both looked at Patrick and said "Quit it, she needs to sleep." Corrinne forgot that when the BFFs (Best Friends Forever) get together that sleeping is NOT on the agenda.

Fantasy Football

The Football Guys... - (Alegra is taking the picture)

The Fantasy Football playoffs are this weekend and Patrick's team, The Schmoes, is doing well playing for third place against his old friend Dave Schmidt, The Rhino Bunnies. Well, there are only six teams so maybe playing for third isn't the best, but hey he could be doing worse. This year I joined the "boys" in the football league and I'm proud to say that I'm in the "toilet bowl" - yep, I'm competing for last place (the whole thing was rigged I say...)

ALS Research and Clinical Trials
Patrick keeps up to date on ALS research, trends and recent studies in the medical field and through other ALS patients. In recent months he participated in a study on a medication that was being considered for muscle cramping. Unfortunately, Patrick has suffered from muscle cramping since the onset of ALS and at this time there are no drugs on the market for this ailment. It was a short six week study but the drug proved to work for Patrick. The positive outcome from this trial is that the drug is already on the market so since it worked for him he was able to continue using it.

When you go to the ALS clinic, one of the staff that you meet with is an expert on clinical trials, Dallas. She keeps abreast of trials going on throughout the country and is a resource for different theories on ALS cures or treatments. There are pros and cons when participating on clinical trials that you have to consider.

Pros...

• You provide valuable information to researchers on various drugs, treatments or information that can be used to help understand the disease, provide symptom treatment or even a potential cure.

Cons...

• Location: Most trials are not in Sacramento, instead you must commit to traveling to San Francisco on a regular basis.
• Time: You are taking time (the value is profound with ALS) for appointments and testing.
• Drug Continuance: Generally, in these trials you are not provided the drug after the trial is finished unless it is already on the market for another use. This is a highly controversial topic in the ALS world, it seems inhumane to not allow a patient that has a positive response to a treatment to continue while the trial is going through the various stages of approval.

Trials go through various stages to be approved by the FDA and sadly because of the amount of time that passes between stages, patients are often not around to benefit from a drug that worked for them.

Patrick is a proponent of clinical trials, his belief is that if he can help find a cure for ALS even if it doesn't benefit him directly than he's making a difference. I respect his beliefs; I've come to realize that the ALS journey is very personal and how one chooses to spend their time is up to them.

At the End of the Day...
The days activities keep us busy with lunch dates with friends, seeing the latest movie and hanging out with the grand kids. Patrick's mobility issues and energy levels do limit how much can be done during the day and he has to be selective. With ALS you must chose how you will spend your day; time is limited, energy can deplete you quickly and mobility creates its challenges, but in a way it makes life richer by forcing you to focus your time doing the things that are most important to you.

However you spend your day today, I hope it's with good friends and family. The best activities are often defined by who we spend them with.

Happy Holidays!

Dad

I started this blog to chronicle our family's journey through the trials of an ALS diagnosis. And secondly, it was to have a record of this period of time for myself. As with all things, ALS encompasses a portion of our lives, but the world continues and joys and sorrows take place as they always do. With that I'm compelled to create this blog to remember and celebrate my father, who passed away this past week and has left a void in my life and the lives of family and friends. 

Dad and I

Yes, I am wallowing a little in self-pity, feeling I've been handed more than my share of sadness these past few years. But honestly, the truth is, part of being human is loss and sadness – it’s a shared experience for all of us.  We all experience loss, love, triumph, pain and great happiness, it is a connection we have to each other as human beings. There is a wonderful line in the Bob Segar, song "No More", that says "no one gets to walk between the rain," so I know I'm not the only one who has experienced sadness- we all have our moments in the rain.

For Dad...

The last couple years have been difficult for Dad; he's struggled with some health issues and mild dementia. However, it didn't seem to reduce the sadness or shock when you hear your father has passed away. With his passing we, my sister Denise, her husband Mike, Patrick and I headed home to help my Mom with arrangements. We traveled over Donner Pass through Reno, past the shoe tree to our hometown, Susanville, CA.


At my parent's 50th: Chris, Me, Mom, Dad and Denise

We met my mother and brother immediately at the funeral home to discuss arrangements. It's a surreal experience to make these decisions for your dad and the pain on my mother's face was difficult to witness. We made funeral plans with the mortician and hopefully these decisions would have been what my father wanted, he never said. 

My sister and I split duties with her putting the funeral program together and I writing the obituary. To gather information for the obituary and program, the family sat down and chronicled his life, hobbies and activities. My mother brought out many personal items, some I’d never seen that were interesting and nostalgic. My father was a rich man, not financially, but in a life well lived. He was intelligent earning his bachelors and masters degrees at UC Berkeley, loved the outdoors and spent hours bird watching, hiking, and walking. He was a walker and loved just getting out to view the day. As a young man he climbed and hiked often and took us kids on a number of outdoor outings.

My father wrote Haiku poetry, collected stamps and was fascinated by Alexander the Great, whom he wrote his thesis. His poetry was published in a variety of publications throughout the years. During my parents early years, my father would write poems for my mother. These two poems my dad wrote to my mom while he was away at boot camp and now seem fitting for the moment. My dad's Haiku's often reflected on a specific moment in time...

The last of the day
Is glowing far away
beyond the clouds

How far I am from
home when daylight
ends beyond the clouds

I spent some hours with all the collected information for Dad's obituary. Although I think the obituary chronicles his life, it still feels not quite representative of the father I knew. But no amount of tweaking will make it better, so “it is what it is.”

Heading home, my sister and I stopped at the shoe tree and added a pair of Dad's shoes to the lower branches. It's a fitting tribute to a man that so loved the outdoors. Here is my attempt at Haiku...

The Shoe Tree - with my father's shoe...

Ownerless shoes in a tree
dangling from a branch
a father missed

Lately, I've reflected on my days with Dad and here is a list of the things he taught me, the things I remember and the gifts I am grateful for...

He taught me..

to play the Chinese game of Go
the importance of appreciating nature and the outdoors
that a formal education is important
that one should never stop learning
that time is the greatest gift you can give someone.... and
to stand up for your beliefs however unpopular

I remember spending time...

hearing bedtime stories including Arabian Nights and Aesop's Fables
collecting stamps
going bird watching.... and
playing chess

I am grateful to a father that always had the time to spend. In today's hurried world, I realize it was such a generous gift.

I have a lovely note my dad wrote me 20+ years ago - that thanks me for a gift I made him, in the note he states, "thank you for the horse... and for the countless things I've neglected to thank you for over the years." - So to that Dad, I say "DITTO" and until we meet again.

"There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go" – Author Unknown.

Notes on Life #5

Patrick's 50th Birthday Party

Patrick is 50!

Patrick turned 50 on September 19th and we celebrated the occasion with some good friends and family. We turned the Route 66 into our theme, hired a fantastic local band, Legal Addiction, and enjoyed some delicious BBQ compliments to Dave Schmidt and Pat Kennealy. Patrick's family came out from Denver, and it was a great spending time with them.

The Timmons'/Westerberg Clan (hey, where is Erica?)

Dave

Pat & Jennifer

A Great Band!

A big thanks to Pat and Dave for the great BBQ, Karlin for the fantastic photos Jen, Charlotte & the Timmons'/Westerberg Clan for helping set up and clean up! Such a great night we will always remember the great company!

On a turning 50 note, Patrick was so excited he was turning 50 that he didn't wait for AARP to invite him, he went online and joined. I'm not sure what possessed him, but he has checked out all the AARP discounts and is quite excited. Yeah, I told him, "you are total old man status now."

Girl Scouts, CSAW and Managing Priorities...

I've been active in Girl Scouts for near 20 years, it started when Corrinne was in 1st grade and she came home from school asking to become a Brownie Girl Scout because "I want to wear one of those brown vests with the patches." Yes, my near 20 years of volunteering started because my fashion conscious daughter want to wear the uniform. My suspicion is that you know of my involvement in Girl Scouts either because you too are involved or because in some way I've involved you... often through purchasing cookies.

I've had three troops throughout these 20 years, one with Corrinne, one with Caitlin and my current troop of high school girls of which I have no kids of my own. Caitlin's troop just bridged to adult and all headed off to college in June, it was very bittersweet. There are seven young ladies that stuck with it through high school. At the end of the year the girls sent me an email to say that they wanted all the remaining troop funds donated to the ALS Association to help find a cure. I am still touched by the sentiment.

Throughout the years I've had some great times with the girls. About seven years ago me and a couple dear friends, Jen Kootstra & Amber Palmer started a Girl Scout Weekend for scouts 7 grade and over (now called "CSAW Weekend"). This weekend started with about 25 girls/15 adults, fast forward to today and we now average around 110 girls/50 adults. It is one of my favorite weekends of the year. 

Me & Jen Kootstra

Unfortunately, with all the challenges in our lives, I was not sure how much I could contribute to the weekend or even if I would be able to attend. As a caregiver, I have to make choices on how I spend my time, it’s not as easy to take off as it use to be, so it must be worth the effort. So I gave serious consideration to how important the weekend event was and I realized that although I've had to give up some activities this was one I'd like to continue to attend.

With that in mind, I worked out a plan to attend some of CSAW by driving to and from Camp Bothin each day and not spending the night. Although I missed the campfire Saturday night, this worked out fine, with Patrick joining me Friday night on my drive.

CSAW was wonderful this year and I would be remiss if I didn’t thank Jen Kootstra, because without her it would not have happened. She worked hard and never complained about my flaky involvement. Jen, you are a good friend and IOU much more than I could ever repay...
 

As an added treat this year, two of my former scouts, Amanda Smith & Bianca Canthal, from Troop 1357, now in college, came to the weekend and managed the ever popular cupcake wars. These ladies have attended every CSAW (Cadette, Senior, Ambassador Weekend) since it started.

The ALS Walk

Vaughn, Patrick & Al

The ALS Walk took place on October 5 at Raley Field. It was quite an experience with so many people coming out to support their friends and family impacted by this dreadful disease. It was truly a day of camaraderie and support. 

For those of you who joined us, thanks for coming out and walking for a great cause. For all of you who made donations, thanks for your support. We were so thrilled with the amount of support from everyone.

The association provides a valuable service to ALS patients and their families. You can be confident in knowing that your contribution is well used and that patients and families are directly impacted by your generosity.

For the record... Team Timmons' raised $34,842.47 for the Association and contributed to this being one of the most successful years for the ALS Association. Their goal was $250,000 and they exceeded it by over $30,000.

So, make a note for next year's walk, I hope to see all of you again - we'll have cool new t-shirts, lots of fun fundraising events and the opportunity to put your sneakers on and get some exercise. I'll keep you posted on the date.

Here is a link so you can check out the photos from the walk... walk photos

Little Moments of Late...

Christian & Charlotte

As you know, our grandson, Christian, is quite the Casanova, in fact it's been said that he has a lady in every port. Yes, he's five but already so charming. Well, his worlds collided recently when we were attending his brother Anthony's 9th birthday party and because of the guest list, Christian found himself with many of his closest friends all in one place. He did pretty well with all his lady friends, but there were some tears with one young lady, who cried to her mom, "he doesn't like me and wants to play with someone else." The future will be interesting...

Anthony as Michael Jackson

Our grandson, Anthony, has developed a small obsession for all things Michael Jackson. He's constantly singing his songs, and mimicking his dance moves. He does a pretty good job too. Well for his birthday, mom found a Michael Jackson jacket as well as other items. This is how he showed up for dinner the other night.  It's quite a look...

Caitlin is attending Sierra College and taking the usual GE classes. She decided at the last minute to take Art Sculpture to cover her art requirement. A few details about Caitlin, she is a huge art lover, but had a poor experience with her high school art teacher. Years back we took her to the Metropolitan Museum of Art in New York City and literally we had to drag her out - she was absolutely entranced with everything art.

I was excited that she again was trying her hand at art - although truth be told, you don't have to be a great artist to appreciate art. Patrick and I think she should become a museum curator someday, anyway I digress... She really seems to be enjoying the art sculpture class and came home with "Marty McFly" this week - which she made from wire. Christian was so impressed he told her, "Caitlin you're a real artist..." So here is our latest addition...

"Marty McFly"

Blue Shield Parties, Gifts and Trips

The Blue Shield employees held a nice going away party for Patrick right before his final day. As always it was great to meet some of the folks he worked with for such a long time. They presented Patrick with a goodbye gift that included a couple carebears (which he actually had me place in our bookcase) and American Express gift cards that they asked we use to take our next trip. 

Blue Shield Party Folks

Well, we've decided to use the money to visit an old haunt of ours, the Northern California coast. During our first few years of marriage, we were pretty broke, so vacations were limited to places cheap and nearby. We found this old hotel on the north coast in Gualala, the Gualala Hotel (apparently it is now for sale - it can be yours for 1.8 million). I don't think we'll be staying at the old hotel, but we've located a couple vacation homes to rent for a few days in December. Our plan is to play some Yahtzee, drink a little wine and enjoy the view. Should be wonderful - a huge thanks to all of the Blue Shielders, we'll drink a toast to you.

The Holidays

We received the first ALS diagnosis for Patrick about a week prior to Thanksgiving last year. Yep, Thanksgiving was a bust... Then we received the second opinion a week prior to Christmas. Yep, Christmas was a bust... It was not a great period of time. Now, you have to understand something about me, I absolutely LOVE the holidays, so for me to be bah humbug last year was really out of character but it was definitely a sad time - the shock of the initial diagnosis is awful and my heart goes out to anyone who has gotten such painful news.

 

However, this year I am back in the spirit again (hey, live in the moment). So, while everyone complains that the Christmas decorations are up in a store already in October - I'm saying "Woo Hoo." I know what you're thinking, she's one of "those" people. That's true enough, I confess. Really, I'm a big kid at heart, it's not the gifting part, that's not it. It's just the feel of it. I love all the visuals from Christmas lights on the homes, the religious stories, the music, the decorations, Christmas movies and all the great smells. 

 

Probably one of my favorite things is that acts of charity abound. I don't think that folks are necessarily nicer during the holidays, but I do think it is the time of year when we look beyond ourselves and consider the needs of others. So, we'll be doing our annual charity this year with stockings to the needy.

 

On a separate holiday note, I've been on a quest of late to buy a big blow up turkey for Thanksgiving to put in our yard. Can you believe it, it's November 9th and I haven't been able to locate one and the one's online seem expensive. If you're wondering if Patrick also wants a blow-up turkey in the yard, well let's just say he's spent the better part of 30 years humoring me. So, he's joined me in my quest and I've ignored his comments about how it would only be up for two weeks. In my opinion, that would be more than worth the effort, don't you think?

My forecast is that this is going to be a wonderful holiday, and I know it's early but, Happy Holidays, Merry Christmas, and Happy Hanukkah!
 

Being Thankful
I enjoy Facebook, it's my guilty pleasure, I admit I like seeing all the happenings and photos of everyone's family and the often corny "words of wisdom" that get posted. Best of all, I like seeing my daughter's photos of the grand kids. I've noticed that every year in November people post items they are thankful for on a daily basis. I'll be honest, I've not felt very thankful in the past year. So posting a thankful item each day was not something I really considered, mostly because my thoughts are often riddled with sarcasm and probably wouldn't be appreciated.

 

However, I did have a friend, Charlotte who recently challenged my thoughts of being thankful of late and I've spent the past couple weeks reconciling her words in my head. 

With an ALS diagnosis, "lucky" isn't something I've really considered, instead mostly I think we've been pretty unlucky. Yeah, sometimes I feel "ripped off." So, I was a little surprised when Charlotte, said to me, "I want to thank you for inviting me to Patrick's birthday party, I was thinking if you take "ALS" out of your situation you are truly one of the luckiest people I know." I've thought about her comment a number of times, I don't think I'm "lucky," unlike Lou Gehrig, but I do think I still have much to be thankful for.  So Lord here is my list...

I am thankful for my husband and the moments we've shared and continue to share;

I am thankful that the disease moves slowly in Patrick and that we have this time to be together;

I am thankful for two wonderful daughters that make our lives richer and fuller;

I am thankful for grandchildren that fill our lives full of wonder and laughter;

I am thankful for family, good friends and our fellow ALS patients that remind us that we are not alone and touch us with their strength and kindnesses; and finally

I am thankful for the day, and that within it we can find the beauty and joy in the moment.

Enjoy the holidays my friends and keep a look out for a giant blow-up turkey (it's what everyone needs and if you find it cheap, drop me a note.)

Things to look forward to...

November, Polar Express Ride (annual tradition with the grandkids)
November, Thanksgiving

December, North Coast Trip

December, Christmas

January, Disneyland Vacation with family

Adapting to Change

There are few things in life that are certain, but it is certain that all things change. I'm not someone that has spent my life embracing change (Patrick, I know you're chuckling), but I do recognize the inevitability of change. The constant changes that force us to learn how to adapt. So, I'm sharing some lessons I've learned recently:

Falling Down and Getting Up
Patrick had a nasty fall in early September. We were in the backyard and while I had my back turned (cleaning up dog poo, nonetheless) he caught his foot on the brick and down he went. Falling for ALS patients is common, the balance is off, muscles are not working quite right and small obstacles become huge when you have to maneuver around them. We spent about six hours in the emergency room while they ran a variety of tests to make sure that his ribs, head etc. were not broken or worse.  In the end he came out of it with some pretty bruised ribs, a black eye and an extremely sore/tender arm on which he fell. (The ego was a little bruised up too...)

So, this is what I learned:

Falling hurts... For all of us, falling down hurts - the body is sore, stiff and generally scraped up because we put our hands out to brace ourselves. For an ALS patient ,they have all these things, but are further compounded by the fact that they can't move as easily. Additionally, he couldn't get his hands out to brace himself, so... he hit the ground hard.  Again falling hurts.

The ER is an interesting place... I think I've been to the ER four or five times in my life and frankly I could live the rest of my life happily without visiting one again. It is a sad place where you spend a great deal of time waiting.

I can't pick Patrick up... When Patrick fell, Caitlin and I tried to get him up, but with no success. I wound up running to the neighbor who came over and helped me get him inside to the couch. Thank you Jim! Anyway, I realize that there would be great challenges ahead and that I needed to learn to manage these crisis's better. As fate would have it, I read a blog of another ALS patient (Susan's Steps, www.susansteps.com) that week and she had also taken a fall and her husband called 911 - the fire department came over and lifted her up. It never occurred to me to call 911 but apparently it is common for them to come out in these situations. I used to have a boss that called these learning moments "ah ha" moments - I'd say this was a little of an "ah ha" and "duh" moment for me...

Installation of the Lift

The lift was installed in early September, it took about two weeks for the job to be completed. The house was tore up for quite a while, which is not one of my favorite things. It was also during the time of Patrick's fall and started immediately upon our return from our Route 66 trip.  It was a bit overwhelming for a while. The dust has settled now and the lift is in our entry way, with a door added upstairs into our bathroom to allow for getting into the upstairs. It works pretty well and it's always a curiosity for folks when they come over. 

So, this is what I learned...

Fast Enough... You just can't get these things done fast enough, I really struggled with the torn up house for two weeks.

When it Rains it Pours... I think I reached my max with the installation, Patrick falling and trying to make arrangements for Patrick's 50th Birthday.  Overwhelmed is an accurate description.

Lifts are S...L...O...W... Our nephew, Don, recommended that we have appropriate elevator music playing while Patrick uses it. Our sister-in-law, Debbie, calls it the "Pat in a Box." Just for translation - Pat=Patrick (only his family calls him Pat). Pat Kennealy offered to put a Bimford 3000 on it to speed it up - intriguing but I'll have to say no...

Cleaning Out the Work Office
Patrick took a leave of disability from Blue Shield the first week of October. My perception of Patrick, the worker, was pretty limited and frankly I never really gave it much thought. He kept his work at work and didn't bring it home with him. He has talked of people at work that he obviously liked, but my interaction with anything work related over the past 30 years has been minimal - except for a brief stint where we worked at the same place (that was a very LONG time ago.) So, we set out the Saturday before his final day to clear out his office.

I've been to his office maybe a total of three times over his 11 years with Blue Shield and they were brief in nature. With two empty bags we headed into Patrick's office to clean it out. We started with his drawers, where I cleared out the personal items and threw away paperwork. I found this tremendously moving; I rifled through his desk and cabinets removing the usual work stuff, as well as his awards, certifications, notes, and cards. On his monitor was a well wish from Vaughn and Tina - his co-workers. Although, he didn't say it, I know that it must have been difficult for him to close this chapter in his life.

So, this is what I learned...

Work... Patrick had a work life outside of the Timmons' household that was rich with friends and co-workers. It's not that I didn't know that, but this activity really brought this home for me.

Humility... Patrick is a humble man, he took a few items that had some meaning for him, but left the rest. I wanted to keep some stuff (yeah, I snuck some stuff) but he said let it go, it's time to move on.

The roles we play... It was a reminder to me that as well as you know people, they have other roles they play; we are mothers, fathers, sisters, brothers, but also friends, co-workers, bosses, subordinates and so many other identities.  We are so much more than one role, instead we are multi-faceted human beings playing a variety of roles.

Neurons and Pathways

The Brain

Christian started kindergarten this year and we've enjoyed hearing about school life from his perspective. His teacher has a degree in science, therefore many of the class lessons are scientific which appears to be absolutely fascinating to Christian. He has very animated discussions about neurons and pathways in the brain. Apparently the science lesson he is most intrigued with is about what happens to the brain as a child learns and grows. A quote from my scientific grandson - "As I learn new things in school, the neurons come together and create new pathways." (this is done with some pretty impressive hand gestures). These discussions can continue for quite a while and he seems to have a real interest in how the brain works.


So, this is what I've learned...

Simplicity... From our discussions with Christian, the brain seems so simple, but in reality we know so little about the brain and how it works. However, I think sometimes we make things more complex than they need to be - which leads me to my next thought...



Neurons Together

Neurons Apart

Hope for the Future... There is hope in and with the next generation.  With youthful curiosity, someday ALS will be cured - this I believe. I love the thought that Christian may turn his scientific interest and curiosity into knowledge and work to help find a cure. The future is full of endless possibilities. 
 
And so...
Life is changing in our house, we don't have much choice in the matter. We work to find the peace, humor and joy in the day and do our best to adapt to the changes. I tire of life's lessons, but recognize their importance. Although I'm hopeful for the future, I think the next generation just may find that ALS cure.
I hope life's changes are manageable and that you are enjoying this lovely fall weather.

Route 66 - Part III - End of the Trail

Desert Route 66 Signage

The final four states on our journey were Texas, New Mexico, Arizona and California. Some of the weirdest stops we made were in these states, there was everything from dinosaurs eating mannequins to Cadillac's half-way buried in the ground.

The landscape changed throughout the trip and each state had it's own charm. From the lush green states of Illinois, Missouri and Kansas; we entered the plains of Texas, deserts of New Mexico, red rock of Arizona and ultimately the Southern California desert and beaches. All had their own beauty and it would be difficult to pick the best state on the route.

After leaving Oklahoma and the Big Blue Whale we headed into Texas...
 
Texas: Cadillac Ranch, The Route Midpoint, and Bates Motel Signs
Texans most certainly have a sense of humor; we found giant roosters, Bates Hotel signs, and a "ranch" full of Cadillacs buried half way up in the ground. Shamrock, is the first town you enter when you cross the border from Oklahoma. Shamrock is the home of a restored Conoco Gas Station, this station was the inspiration for Ramone's Body Shop in the movie "Cars". It has a great art deco look and is now home to the Shamrock Chamber of Commerce. 

Patrick and I at Cadillac Ranch

Cadillac Ranch is located outside Amarillo, where it has a number of Cadillacs buried half way in the ground. Visitors are encouraged to spray paint the cars so they are continually painted and repainted. The area is a sea of empty spray cans and wet paint, the amateur artists don't always keep to the buried Cadillacs, so if you ever go, be careful of the fence, gate and trash cans, nothing is off limits to the painters.  Cadillac Ranch also provide the inspiration to the Cadillac Range backdrop to Radiator Springs in the movie "Cars".

Adrian, Texas is the midpoint of the route. We stopped in hopes of having some pie at the Midpoint Diner and meeting Fran, the inspiration for Flo in the movie "Cars", but they were not open. They did have an old truck you can sign, although there isn't much room for new signatures.

New Mexico: Capitol Building, Neon Signs, Giant Dream Catchers, Desert Sunsets
On the route there are a few sections that branch off and you can take a couple different routes. In New Mexico the older portion of Route 66 travels through the state capitol, Santa Fe. This route was removed early in the life of Route 66 and diverted for a more direct route through New Mexico. We opted to include this section because Santa Fe looked like such an interesting place to visit and is home to one of the oldest buildings in America (500 years old). 

A dear friend of mine went on countless family road trips with her dad who took his family on a journey to visit every state capitol in America. I can't say that I've visited every capitol, but I have visited a number of them and I must say that the Santa Fe Capitol building is incredibly beautiful and unique. It is built true to the state architecture in adobe style. The building is circular and we were able to walk completely around. The grounds are green and lush with Native American artwork placed throughout. Just seeing the capitol building and local adobe architecture made the detour worthwhile.

Tucumcari Classic Neon

We spent the night in Tucumcari which is a town that is working to revitalize their main street. The Blue Swallow Motel with its murals and striking neon sign were a memorial to years gone by. That night we cruised the main street, had a wonderful dinner at Del's Restaurant and watched the Disney "Cars" movie in our motel room. I must say it is moving how breathtaking the New Mexico desert is at sunset. 

Arizona: Oatman Burros, Bed Bugs, Dinosaurs, Mannequins
The Arizona portion of the route is alive with funky towns, Burma shave signs, giant dinosaurs and wild burros. Again we opted to take an older route through the Black Mountains that started in Kingman and ended in the old town of Oatman. Patrick definitely talked me into taking this road, it's a narrow road with a shear drop off, not my favorite type of road, but I must say we were rewarded by some amazing views. Additionally, on this stretch we saw a giant tiki head, an old ghost town and a family of wild burros wandering the freeway outside of town.

We had our first (and hopefully last) experience with bed bugs in Flagstaff. When we arrived at the Holiday Inn Express, Patrick sat down on the bed only to notice a strange bug on his pillow. After we caught the bug in a Ziploc bag and searched the Internet, we confirmed that the bug was indeed a bed bug. This was a first for us, and I'm grateful that Patrick saw it immediately upon entering the room. We quickly "bugged" out and headed over to another hotel. I did take a picture, but I won't post this to the blog - because they're yucky.

Patrick & Caitlin at Snow Cap Drive In

Probably one of the most famous towns on the route is Seligman, Arizona. Seligman has the famous Snow Cap Drive-In with its funky artwork - toilets with flowers, a vintage car decorated for Christmas with the top down and Santa riding in it, and  a number of vintage automobiles. We loved it all!

Yes, we did stand on a corner in Winslow, Arizona, just like the old Eagles song "Take it Easy." They have a guy with a guitar statue and a flatbed Ford. Eagles music plays from the gift shop on the opposite corner and t-shirts, signs and trinkets are available for sale.
 

The London Bridge, Lake Havasu

We took a side trip from Route 66 to visit the London Bridge. Yep, the real London Bridge can be found at Lake Havasu, Arizona. It was sold in 1967 to Robert P. McCulloch for approximately $2.5 million and he brought it over piece by piece. We heard in London that it was in Arizona, so we drove off the route to check it out - an interesting landmark in the desert of Arizona.

California: Bottle Art, McDonald's Museum, Wigwams, End of the Trail 

Our Wigwam, San Bernardino

We spent the initial leg in California traveling through the Mojave Desert. There are interesting man made items in the desert including shoe bushes, rocks shaped into names and old gas stations. Probably the most intriguing is "bottle ranch" which is the home of the artist, Elmer. He created bottle trees all over his property, each pays tribute to a variety of themes. I can't even imagine the hours he spent to creating his art.

After the journey through the desert we stayed in San Bernardino at the Wigwam Motel. We enjoyed our stay at the motel which was a group of tee pees. The decor inside the tee pees was western with stagecoach wheel headboards. The next day we headed over to the McDonald's museum before making our final trek to the Santa Monica Pier.

You travel through some of the most beautiful southern California towns on the route including Pasadena, Beverly Hills and Santa Monica. In true Southern California fashion, we spent quite a bit of time in traffic. We found the End of the Trail sign at the pier, visited the Route 66 shop and enjoyed the amazing beach scenery. 

Closing

Santa Monica Pier!

We ate at some fantastic restaurants, met some wonderful people, and saw some beautiful country. An interesting fact is that the majority of the Route 66 travelers are foreigners. Apparently it is very popular to come to America and journey the route. Not something I would've expected, but at various times through our trip we found ourselves surrounded by foreign travelers. 

They come from all over the globe, in Seligman a bus pulled up and a group of 30+ folks got out all speaking French, in the Mojave Desert at a little diner, we counted five different languages being spoken at the various tables (none were English) and upon arriving at that diner we had to navigate through a biker group from Brazil. Such a funny fact that just added to the richness of the trip!

It is too bad that Americans don't travel the route more and I encourage anyone that finds themselves in Route 66 area to take the slower route, even only for a portion of the journey - you won't be disappointed.  While there are a number of good books on taking the route, our recommendation is "Route 66: EZ66 Guide For Travelers" by Jerry McClanahan.  Done in a triptych style and very easy to follow and find all those cool sites.

You can find our photos from Texas to California along the route here: Final Photos.

So as quickly as it started, our journey along Route 66 came to an end... but oh what a journey it was and one we won't soon forget.

Route 66 - Part II - The First Leg of the Journey

Start of Route 66, Chicago IL

Well, finally I’m getting to Part II of our Route 66 trip (crazy month, crazy life). 

Anyway, after a few days in Chicago, we fought the morning traffic and headed downtown to find the beginning Route 66 sign. Thus our Route 66 Trip officially started…

Illinois: Land of Lincoln, Gemini Giant and Cozy Dogs…
Our first stop and overnight on the route was Springfield, Illinois. Springfield is the home of Cozy Dogs, the Bearded Muffler Man, and Abraham Lincoln. Absolutely, the pride of Illinois is our 16th President, Abraham Lincoln. There are statues, towns, monuments, museums and constant signs stating "Land of Lincoln" throughout the state. We visited the Lincoln Museum and Presidential Library in Springfield. This is a fascinating place that chronicles Lincoln’s life from childhood, to the Civil War to his tragic death. The museum is a tribute to a remarkable life and man. I can’t say enough about the museum – worth a stop if you're ever in the area.



Giant Catsup Bottle, Collinsville, IL

Route 66 is a piece of American history and a bit of a scavenger hunt. Part of the fun on the route was finding the various icons, “giants” and signs. In Illinois we found the Gemini Giant, the world's largest catsup bottle, a pink elephant drinking a martini and Betty Boop.

The best corn dog I’ve ever eaten was at the Cozy Dog Drive In in Springfield, Illinois. A Route 66 favorite and part of the inspiration for the Disney movie “Cars.” They claim that they created the original corn dog – not sure if this is true, but they have certainly mastered the recipe. The Cozy Dog opened in 1946 and has moved a couple of times, but now sits squarely on Route 66. They even serve Route 66 Soda!

After finding the giant catsup bottle in Collinsville we took the bridge over the Mississippi River into St. Louis.

Missouri: the Arch, Largest Rocking Chair, the Cardinals and Mini Stonehenge…
As you head over the bridge to St. Louis, you are greeted by the Gateway Arch. The arch is a beautiful piece of American engineering. Years ago we traveled through St. Louis and I was impressed by the arch and it was just as wonderful the second time around. Time and perhaps where you are in the moment makes you forget some past experiences. One thing I didn't remember was the amount of stairs inside the arch which was challenging. However, I’ve found

The Gateway Arch, St. Louis

throughout our travels people generally try to accommodate us when they understand Patrick’s mobility issues. So we were able to make the journey to the top without event.

We caught a St. Louis Cardinals baseball game at Busch Stadium. The stadium has the Arch as a backdrop, definitely one of my favorite baseball stadiums. I made the mistake of wearing my Wrigley Field shirt to the game and garnered a couple comments - apparently the Cubs are not loved in St. Louis. Ah, nothing like a good baseball rivalry.

Missouri is a lush green state and Route 66 wanders through some beautiful scenery. We continued our scavenger hunt with a mini Stonehenge on the campus of University of Missouri in Rollo, the world's largest rocking chair and a Hubble telescope replica, in Edwin Hubble's hometown of Marshfield.

Kansas: 11 miles of Route 66, Disney Inspiration, Tow-Tator, the Rainbow Bridge...
The state with the shortest road on Route 66 is Kansas - a total of 11 miles runs through it. The Kansas folks are a friendly group and we spent quite a bit of time on this short strip of the route. There are murals, signs, gift shops and information stops throughout Kansas. The scenery is not what you expect - it is very picturesque with a river and tons of greenery.

Rainbow Bridge, Outside Galena KS

We met some of the inspirations for Disney's "Cars" movie in Kansas. The story was told that Tow-Mater was actually a beat up old tow truck that the kids in Galena nicknamed Tow-Tator. We met, Melba Rigg, at the "Cars on the Route" gift shop. Melba is a quite a character herself – she proudly proclaims that no one can talk as much or as fast as her.  I don’t think I can argue against this claim. She was interviewed by Disney for the "Cars" movie and her half hour interview went three hours and the Disney folks missed their airline flights (she was quite proud of this). She is featured on the "Cars 2" movie blu-ray edition discussing Route 66 and impact on the local towns along the route.

There is a lovely bridge outside Galena, KS named the Rainbow Bridge. The locals believe it is the inspiration for the bridge that Lightning McQueen and Sally raced along in the original "Cars" movie. True or not it was a beautiful spot to stop and enjoy!

Oklahoma: the Blue Whale, a Memorial, Route 66 Museums...

Oklahoma City Memorial at Sunset

The route traverses through much of Oklahoma and includes Tulsa, Oklahoma City and Clinton. We were fortunate to arrive in Oklahoma City at sunset and spent time at the Oklahoma City Memorial - which was absolutely moving and we got some amazing photos of the memorial at sunset. It's worth a stop if you're ever in the area.

The scavenger hunt continued in Oklahoma and we found the Blue Whale in Catoosa, OK which was part of an old swimming hole. This was an anniversary gift to Hugh Davis’ wife, Zelta, built back in the 1970s. Pretty awesome gift, in my opinion, beats jewelry any day! This was a busy route attraction and there were plenty of folks fishing, taking pictures and walking through Big Blue.  Additionally, we found an old Conoco Station, the Kuku Bird and A Soda Pop Statue in Oklahoma.

There are eight states on Route 66– Illinois, Missouri, Kansas, Oklahoma, Texas, New Mexico, Arizona and California.  My original plan was not to write on all eight states, but I loved this trip, and I want the written memories… so I’ve decided to do a part III which should be out sooner than this one…(the next final four states: Texas, New Mexico, Arizona & California).

Check out the photos...
In the meantime, I’ve uploaded photos of our trip through Oklahoma… A picture in this case is absolutely worth a thousand words: Route 66 - Part I Photos