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

Get Your Kicks on Route 66 - Part I

It's been about a month since my last blog and what a month it's been!. We spent most of August on an amazing journey across the United States and back. We took the world famous Route 66 from Chicago to Santa Monica. This is a trip we've talked about doing for years and it was definitely one I will remember fondly- frankly, there is nothing like a good road trip! Here is the quick and dirty breakdown:



My traveling companions: Patrick & Caitlin

5,231 Total Miles
13 States
3 traveling buddies
1,600,504,211 cows
2 baseball games
1 blue whale
563,231 corn fields
1 bed bug
1,545 windmills
4 muffler men

I'm finding the writing of this blog to go on and on... so I've decided to separate this into two blogs, that way I feel a sense of accomplishment and actually post something today...  So this is Part I of our Route 66 Trip... - I will also be putting the photos on shutterfly - a picture is worth a 1000 words!

The Plan...
Our original plan was to fly to Chicago and rent a car to Sacramento.  It seemed the most logical, saving the driving time from Sacramento to Chicago and putting the least amount of mileage on our vehicle. However, we didn't take into effect the cost of the rental car - which turned out to be more than $5,000... so we then considered the idea of buying a used car in Chicago (hey overall it's cheaper than $5,000) but in the end we decided to extend the length of the trip and use our Ford Explorer. Our son in law, Justin, put steps on the Explorer making it easier to get in and out of, and its fully automated so it really made the trip easier and wound up being the best choice anyway.

The Journey to Chicago, IL
So, the day arrived and in true Timmons fashion we planned to leave about 10am and really wound up leaving at 1pm. So with a full tank of gas, three suitcases, our favorite pillows and a whole lot of snack food, we headed out!  We didn't want to spend too much time getting to Chicago so we put in about 8-10 hours driving each day. We journeyed through Nevada, Utah, Wyoming, Nebraska, Iowa and into Illinois. Patrick & I have been to Nevada, Utah and Wyoming quite a few times so that was not a new trek for us, but neither of us had ventured into Nebraska or Iowa. So these states were new for us to explore.

Iowa - Beautiful Fields of Corn & Farms

 

It's interesting how we get ideas in our heads about states and what they look like - although I've been through a number of states and we lived back east for a time, I'm still amazed by how incorrect these assumptions often are. Yes, Iowa does have quite a bit of corn fields - but there is something wonderfully beautiful about a farm with a windmill next to a green corn field. Truly picturesque... 



At Antique Archaeology, LeClaire, IA

Caitlin & Patrick at Antique Archaeology

We watch Mike, Frank and Danny of American Pickers on TV, so it was a "no brainer" to stop by their shop outside Davenport, Iowa on the eastern edge of Iowa and check out all the cool stuff and purchase a few items. If you like garage sales, old vintage stuff or the open road this is the show to watch, visit Antique Archaeology. Funny, on the show you get the feel that they are located out in the middle of nowhere in a small town, well that's not true. Antique Archeology, is located in LeClaire right next to the  Mississippi River, such a cute town!

 

 

Chicago: Windy, Traffic, Wrigley Field and Deep Dish!

Lou Malnati's in Chicago

It is true that Chicago is the windy city, I think in most of our photos I look like I've got a rats nest building in my hair. But, that's part of it's charm! Chicago is a busy city with traffic, skyscrapers, people and lots to do! We had delicious deep dish pizza at Lou Malnati - you know the pizza is fantastic when folks line up at the door. It was a wait, but absolutely worth it! For dessert we had a cookie pizza, warm with vanilla ice cream - yep, it's worth moving to Chicago just for this dessert (of course, I'd weigh a couple hundred pounds if I did)! 


Wrigley Field!!

We are big baseball fans, so we never miss an opportunity to see a game and seeing a game at the historic Wrigley Field was something I've wanted to do since I was a child. I grew up in Susanville, CA (about 4 hours north of Sacramento) as a child we got 10 cable channels and one was WGN in Chicago (who knows why). I had no idea where Chicago was, but I watched the Cubs play whenever they were on. So, going to the Cubs game was a highlight for me, we had "Chicago dogs" and watched the Reds beat the Cubs. Bummer, I wanted the Cubs to win. -- We ALWAYS - "root, root, root for the home team!"

After a few days in Chicago, we started the Route 66 journey! Route 66 is the old highway that folks took before the Interstates were created. Route 66 is sometimes known as the Mother Road.  The Disney movie "Cars" is based on a fictional town, known as "Radiator Springs."  The movie tells the story of a town being forgotten after the interstate detoured travelers. The movie is pretty accurate, in that many of these little towns closed up or had to find other means of existence.  Radiator Springs was inspired by many of the sights along Route 66.

Some of Route 66 is no longer drivable, so its not possible to take Route 66 for the entire 2,448 mile journey. This caused us to move between the Interstate and Route 66 and the difference between the two is profound. The route really gives you a feeling of going back to a simpler time when you took life slower and enjoyed the sights. You miss so much when you just take the Interstate, if I have one recommendation when you're out on the road, stop in at some of the little towns along the way and enjoy a few detours from the main highway, there is so much to see and do, as well as wonderful folks to meet!

Route 66... To Be Continued... (I know the anticipation is tough!)

How is Patrick Doing? #2

I've struggled this month with an update on "How Patrick is Doing."  I think for me these are the hardest to write, hence I've only posted one - back in March... There are a number of reasons I struggle with it.  Primarily, I don't really know what it's like, I'm merely the sad daily observer to his changing issues and challenges.  I am by definition a caregiver so my perception is perhaps different and jaded by the role in which I play.

So, as you read this blog, I ask you dear reader to remember that this is coming from a caregiver's perspective not the PALS (Person with ALS).

Generally, if someone asks me "how is Patrick doing," I say he's progressing and follow it up with ALS is a degenerative disease, so you are always better yesterday than today. The nitty gritty detail of ALS is not kind, pretty or enjoyable to share and discuss.  It's similar to when your child asks you "where do babies come from..." - they want the truth, but you have to consider how much detail in that moment is appropriate.

So my second struggle is how much do I post on this blog... My feeling at this moment, is to share some things to give you an idea of the challenges, but stay away from the gory details.  There is a blog done by an ALS patient, Susan, in our support group and she writes from a patient perspective - I think she does a great job talking about the daily struggles.  Here is a link to her blog:

http://www.susanssteps.com/

The journey with ALS is extremely individual based on many factors, including, but not limited to, the initial affected area, and the rate it progresses. In Susan's case the ALS started in her legs, so, that is her most challenging area. This differs from Patrick who's initial area was his right hand.

Ok, here is "how is Patrick doing update"... basically he's progressing...

The fasciculations that started in his right hand and arm have progressed to his left hand and arm as well as his legs.  He still has strength in his legs although reduced. His balance is off and he's had a couple falls and a few close calls. The lift we've put off is scheduled for end of August, beginning of September time frame. The stairs are becoming difficult due to his balance issues.

Fatigue is a constant issue which is typical with ALS patients. The simple tasks such as the morning ritual of bathing, dressing, teeth brushing takes longer and is tiring. Initially, Patrick suffered fatigue generally in the late afternoon, but now it tends to be connected to performing various tasks. Conserving strength is important, so that energy is spent on more important activities than the daily tasks.

Patrick continues to work at Blue Shield although he now works at home three days a week. The three days at home are much easier than the two in the office  The mobility challenges and fatigue make those days in the office difficult. We are starting to discuss the time frame for Patrick to go onto disability, this day is approaching.

The continual loss of mobility is difficult to watch, especially with the understanding that you don't get it back. I know that when I started putting on and taking off his shoes that he would never again do this task. There is a sadness whenever these changes take place - I feel it, so I can only assume he does too. I'm learning patience as I watch him struggle with some tasks, I know the importance of maintaining independence as long as possible.

If you are interested in the disease, ALS, there is a YouTube video that was created by Forbes Norris ALS Clinic that does a good job of explaining the disease and the progression process. It's titled, "The ABC's of ALS," if you're interested in the disease in general I recommend you view it.  Here is the link:

http://www.youtube.com/watch?v=0tS4oTKRYfA

There are three parts - the first does a good job explaining the disease. Dallas, the presenter, is the research nurse that we've met a few times at the Forbes Norris Clinic. She keeps us up to date on research, potential upcoming studies and new things happening in the ALS world.

We continue to work through the changes and find alternatives to managing daily activities. We are fortunate to have a strong group of family and friends that help out with various items. Thanks to all you unsung heroes that provide assistance when needed.

Seize the day my friends...

Notes on Life #4

The past month has been a whirlwind of activities with Europe, Caitlin's Graduation, end of year activities and family visits. As wonderful as it all is, I must say it's taken its toll on me and I was glad to head back to work and get a little bit back to "normal," whatever that means these days... So much to recap I hope I don't miss anything...

 

Traveling with Superman and Visiting Shoe Trees

Superman and the Shoe Tree

My parents are at a stage where driving down to Sacramento from Susanville is just too much for them. For them to attend Caitlin's graduation I decided to drive and pick them up.   Susanville is about four hours north of here and it makes for a long 8-9 hour day. Patrick was busy working and Caitlin was in school so I decided to make the journey solo.  Well the week prior to leaving the grandsons were over and I thought, why don't I take Christian on my Susanville trip, he is out of school and just a little bit bored. 

 

So Christian and I headed out on our adventure to Susanville. Our first stop, Starbucks, I gifted him with a Superman cape and hot chocolate - so we started the journey off right. Christian is an easy traveling companion and other than a few stops to run around the car with his cape flying in the wind, he was good to go.

I made Christian a promise that on our trip we would stop at the infamous "shoe tree" and make a donation of a pair of his old shoes. He was a little distressed to part with the "one" shoe with a hole in the toe, but he was anxious to throw the shoes up into the tree. I'm not really sure about shoe tree edict, but we made a wish when the shoe was placed in the tree. I've stopped at the shoe tree quite a few times over the years, I find it a good place to reflect and the shoes always make me smile. If you're ever on the rode to Susanville (HWY 395), take an old pair with you and enjoy the view.  Yes, shoes do grow on trees or perhaps what I should say is "yes, there is a shoe heaven!"

 

Caitlin's Graduation

The big celebration this past month was Caitlin's graduation from Woodcreek High School. It was a bitter sweet moment watching my youngest child graduate. Sweet to see her graduate and know that she is on her way to college and the beginning of adulthood.  Bitter to think that there are no more children at home and Caitlin will be heading to Sierra College.  

 



Me & Sofia (Peanut), Caitlin the Graduate, Proud Dad & Sister

Always a wonderful moment to see your children achieve these milestones. My sister Denise and her boyfriend Mike came out from Arizona for the event and we had a wonderful celebration with Caitlin's friends. The big news is that Denise and Mike are getting married, which is cause for celebration!

 

Support Group

The ALS Association provides a monthly support group for PALS (People with Amyotrophic Lateral Sclerosis) and CALS (Caregivers of ALS patients).  We've attended some of these meetings over the past few months. I've never been to any type of support group meeting before so the experience is new to me. At the meetings they separate the PALS from the CALS so I can only attest to the caregiver side of the equation.  On the caregiver side each person introduces themselves and talks about how ALS has affected them and the challenges they are currently facing. You can share as little or as much as you like. The caregiver side of the group is diverse ranging from current immediate caregivers, individuals that have a more distant connection like a family member that doesn't live locally to people who lost relatives to the disease either recently or years ago.

There are things that I've noticed and are difficult for me at the meetings. Firstly,Patrick & I are younger than most other participants. When there are 40 somethings in the group generally, its because they are the child of an ALS patient not the spouse. At the first group meeting this made me feel sad and more than a little "ripped off," but we don't get to chose these types of things so I try not to dwell on it.  The other thing that makes the meetings tough - at least on the caregiver side, is there is always someone who comes to announce that their spouse, father, or friend died.  They come with photos and many of the other caregivers know them from previous groups.

So, you're asking, why do you attend these meetings... well, I've considered this myself and I think its because there are so few people who understand the challenges with the progression of the disease.  It's really not like other diseases, and it's helpful to hear how others are managing things as the disease progresses. In fact, the contractor who we purchased the lift from was a referral from another support group member. So the information is truly invaluable. 

 The other reason is that there is comfort in knowing that PALS and their caregivers still lead quality lives and do remarkable things, even with such a degrading disease. I find many of the caregivers to be inspiring and I enjoy hearing the stories they tell about their PALS. I can't speak to why Patrick attends and it has to be difficult seeing people at various stages of the disease, but he seems to get something out of it too.

My hope is that someday there will be a cure and there will not be a need for support groups, but for now it does provide an invaluable service to all that attend.

Did Someone Say Road Trip?  "Get Your Kicks on Route 66"

Patrick and I have talked about taking the old Route 66 from Chicago to Santa Monica over the years. It's a long trek, 2,448 miles, and we estimate it will take about two weeks to drive and enjoy all the sights along the way. Over the years Patrick and I have done many road trips, even traveling at one time from Sacramento to Harrisburg, PA. There is nothing like the open road and I don't think there is anything more traditionally American than taking a road trip on Route 66.

 

The dates are still being considered, but it looks like August/September time frame at this point. Although the traveling is slowly getting more challenging we both value the time we spend together and the sights along the way.

Odds and Ends..

Pretty Feet

The girls took Patrick to the nail shop for Father's Day to get his first pedicure. I rarely do this, I find it strange to have someone "working" on my feet and it scares me that they have clippers. Yep, not my favorite thing.  For Caitlin, Corrinne and Patrick though, they had a great time.  If you're wondering... no he didn't get his toe nails painted although we tried to encourage it:)

 We are in the midst of planning Patrick's 50th birthday in September. Should be lots of fun. I want to say thank you to Pat Kennealy, for your email it was really sweet. If you don't know Pat, he is an old friend of Patrick's dating back to his EDS days. Pat does some of the best BBQ we've ever had and has agreed to help with the birthday party food. Patrick is lucky to have such a good friend.

Hope all is well with you and these hot days find you inside with a cold drink!

Things to Look Forward to...

 

July Denise & Mike's Wedding in Sedona, AZ

July Visit with Timmons' Family in Littleton, CO

August, Hot August Nights, Reno

September, Route 66 Trip

September Patrick's 50th Birthday

October 5 - ALS Walk, Sacramento CA

November - Anthony's 9th Birthday