30 Years Ago

Patrick and I were married June 26, 1983, in Reno 30 years ago. We married young (16,19), with a baby on the way, not the best recipe for a successful marriage. If you're reading this and have children, you probably just gasped. Nope, I wouldn't have wanted either of my girls to marry that young and yes, it did occur to me when they were 16, wow I had a family at their age.  

Anyway, somehow or other we've made it work through the years with the good and the not so good  times.  I've been asked on occasion what makes our marriage last, to which, I reply, quite a bit of luck and dedication. 

With "normal" marriages my perspective is that the first few years are the honeymoon years. You don't get irritated by the toothpaste lid being left off and always remember important anniversaries. Our first years weren't like this, instead we were young, struggling and new parents. In our first year, we had a child, moved from Susanville to Sacramento, and worked to finish high school (me) and start CSUS (Patrick). Patrick refers to these years as the "dark years." How it lasted is still a mystery to me, but I think even then we always liked each others company and found the same things funny. 

I wish I could say that everything is 100% wonderful all the time, but that would be a lie. I'd also like to say that we've never fought, disagreed or had issues with one another, but we're as human as the next couple. The truth is there are hard times, crappy times and moments when we haven't really acted our best. However, I will say that through them all I've always felt a strong sense of attachment and being together just felt right. Whatever the reason, I will never regret the decision to marry my first love and my best friend.

Over the years we've had many great moments and good times, traveling, moving, celebrating, and in general goofing around. We have two great kids, three grandkids and some wonderful memories with more to be had. To my husband and friend - Happy 30th Anniversary!

Taken from "You're My Best Friend" by Queen:

You're the best friend that I ever had
I've been with you such a long time
You're my sunshine and I want you to know
That my feelings are true
I really love you
Oh you're my best friend

The Lift

We have struggled the past couple months with the decision of what to do about the stairs in our house. Our house doesn't have a bedroom or full bath downstairs. Now before you get concerned, this is a preemptive decision, Patrick is quite able at this point to go up and down the stairs, albeit a bit slower. One of the things that is pressed upon you at ALS support group is to always stay ahead of the curve when making decisions. You don't want to make decisions after you need something, instead make these in advance so that you are not caught off guard. This comes from folks who know and who've been there.

So, we met with contractors to potentially add a room to the downstairs with full bath, met with a mechanical engineer to consider a lift being installed in the house and looked at various single story homes for sale.  If I'm being honest, none of these options really appeals to Patrick or I, and it's been quite a painful process.

Although, I don't think there is a "right answer," we tried to narrow down the decision based on the emotional, financial and least stressful option. It's interesting the way we look at things now, when we originally purchased our house in Roseville, we assumed we'd sell it and move on within a few years.  Well that was over 13 years ago, and we're still here. Honestly we've put quite a bit of our heart and soul into this home and we have many wonderful memories. 

We did finally come to a decision, I wish we could say that it was clear cut or we feel that it's 100% right, but that's not possible. So, since neither of us could quite see leaving this house, we decided to remodel although it will not be easy. Prior to leaving for Europe, we made plans to install the lift and set a date for June with the engineer. 

It seems June came about quickly and we both realized the lift was scheduled to be installed.  I guess it's like cold feet, but we both agreed we are just not ready to have it installed.  I think the lift is a symbol of so many things, and although we will have to "take the plunge" sooner or later we're going to hold off for the moment.  Luckily, the engineer, Chris McIlwain, is completely understanding and although he couldn't cancel the delivery of the lift, the installation was postponed until we were ready. 

Well, the lift arrived yesterday - it is a big package and in the garage it sits... I'm not sure when we will decide to install the lift and my hope is it won't be needed for a long time to come. But if you journey into our garage, don't trip...

Our Travels in Europe

Dôme des Invalides, Paris

Patrick and I have talked about traveling to Europe for years and our only regret is that we didn't go sooner. It was truly a wonderful trip and we both agreed one of the best we've taken. The days leading up to the trip didn't go well with Patrick getting the stomach flu and I was worried, but most of it ran it's course before we headed out.

As for traveling with someone with the early stages of ALS, there were challenges, but nothing we couldn't handle. We took things slower than normal, but other than a stumble when getting out of a taxi in London, Patrick managed well, although Europe is not disability friendly, and we avoided some things that had potential difficulties: sky diving, bungee jumping etc.

France: The Mona Lisa, Notre Dame, and Disneyland

We were given the advice to spend the first day in Paris on the Hop Off/On Double Decker Bus.  This proved to be great advice.  The bus allowed us to tour around Paris and make a note of the places we wanted to visit.  On the bus tour you are given headphones and information is provided about the various sites throughout the city. We used these bus systems in all the cities we visited: Paris, London and Edinburgh.



Paris is a beautiful city, with it's architecture, cafes, cathedrals and museums.  We spent time visiting a number of museums, the Eiffel Tower, Notre Dame Cathedral and enjoying the cafes. We stayed at a quaint hotel near the Eiffel Tower which was both lovely and convenient to the bus lines.  Yes, we can now say that we've seen the Mona Lisa at the Louvre with hundreds of our closest friends:). The Mona Lisa is behind glass and about 100 people at the same time all trying to get a glance and photo of the painting.  This was a little over the top crazy for me, as I'm not a great fan of huge crowds.

We also visited the Musée d'Orsay which has some of the most famous impressionist paintings.  During this visit I took a couple of photos of some famous paintings including Whistler's Mother.  Apparently, this is not allowed and I was told to stop by the museum staff - Patrick thought I would be placed in museum custody and ultimately museum jail, so of course he pretended not to know me.  Here are my illegal photos...

Whistler's Mother



I think you are now an accomplice by viewing these...

We took the train to Disneyland which is on the outside of Paris. What I didn't know was that Disneyland Paris is actually two parks: Disneyland and Disney Studios.  We rode a few of the rides: Phantom Manor (Haunted Mansion), Peter Pan and It's a Small World.  I must be honest in saying that although it was fun to see the parks - they are not as nice as our Disney parks.

Any concern I had about not knowing the language was largely unfounded.  We muddled our way, and our experience was that people were kind and provided help if we asked.  

England: The Queen, Underground War Rooms and Bath

London is a busy city, very similar to New York City, with lots of people, traffic and pigeons.

Yes, there were a lot of pigeons, in fact one of the best photos I took, was of Patrick laughing because of a flock of these nasty birds.  We stayed near the Marble Arch at the Marriott Hotel in London.  The hotel staff was nice, but from a mobility perspective it was the most challenging of the hotels we stayed in.  There were a set of marble stairs that you had to climb to get to the elevators as well as a set up stairs in the hall leading to our room.  I suspect these are created by obstacles due to renovating an old building.  This just made things a bit more difficult for our comings and goings.

At the Marble Arch, enjoying the pigeons

The other challenge we found throughout Europe was that bathrooms were often located in basements for restaurants and stores.  So Patrick climbed up and down many stairs over the course of the trip and he managed ok, but it didn't make things easy.

We stopped by Buckingham Palace to visit the Queen, but shockingly she didn't invite us in.  We did however, take a tour of the Mews (horse and carriage area of Buckingham Palace), the Churchill War Rooms, the Tower of London and Westminster Abbey.   As is the case also in France, lots of beheadings took place in these locations.

We highly recommend, the Churchill War Rooms were located underground near Parliament, it is where Churchill lived and worked during WWII.  Within the war rooms there is another museum on the life of Winston Churchill which was quite interesting and interactive.

Most of the touring we did was unscheduled and we just selected what looked interesting from the bus or recommendations from others.  We did, however, preschedule a bus tour to Bath and Stonehenge while we stayed in London. It's a few hours to Bath and we enjoyed the country side as we traveled. Bath is wonderful and definitely worth the journey.  We found a cute fudge shop in Bath and sat outside to try some carmel fudge, it was good, we did laugh though because as we looked at the bag it read "A San Francisco Fudge Company" and here we thought we were enjoying local confectionery fudge:) 

Animals in War Memorial

The French, British and Scotch all love their monuments and we saw tributes to everything including War Animals and Bobby the Scottish Dog. At the Animal in War Memorial there were many wreaths and flowers for fallen animals.  I'm afraid, although I am an animal lover, it seemed a bit over the top.  I suspect Roxie would have appreciated it though.

Scotland: Haggis, Desmond, Cloud Atlas

We ate at a number of pubs in England and Scotland.  I enjoyed the pubs both for the atmosphere and surprisingly the good food. We had steak and ale, meat pie, roast and mac n cheese at the various pubs and the food was wonderful.  I'm a true "comfort" food person and the pub menu is full of these types of items. The only pub food that was a let down was the burgers, frankly they burn them to a crisp. It happened a couple of times and I finally asked one of the waiters why they over cook the meat.  Apparently, because of the mad cow outbreak a few years back there are strict standards on cooking beef.  So, don't eat burgers in Europe unless you like them burnt.

A Pub in Scotland - Great Meat Pie!

After hearing what haggis and black pudding were made of we opted not to try these foods. This is also true of the snails, steak tar tar and baby calf brains in France.  I think these items are best for the true British, Scotch and French.  We did, however buy haggis stuft animals for Anthony and Christian.

We enjoyed all the countries, sights and cities along the trip. I must say I was quite taken with Edinburgh it is such a charming old world city.  We stayed on the "Royal Mile" which is the road to Edinburgh Castle.  My suspicion is that if someone who lived 100's of years ago visited the city now, there would still be much that is the same.  Edinburgh was/is the home of Sean Connery, and JK Rowling. In fact, Harry Potter was written in Edinburgh at a local pub.

If you've seen Cloud Atlas, then you know that a few of the story lines are in Edinburgh, Scotland.  If you look at our pictures you'll find some photos of these locations and the monument to Sir Walter Scott.  We both watched Cloud Atlas on the plane ride home and saw the Edinburgh scenes.  Yep, it made us smile...

Patrick's friend, Desmond, and his parents met us in Edinburgh for lunch and tea.  It was quite enjoyable to spend time with his family and gain a different perspective of Scottish government and customs.  We also spent time with Desmond in Glasgow, visiting the Glasgow Museum, local Pub and yes, the famous Indian Restaurant.

So, I know you're dying to know if the best Indian food is found in Glasgow, Scotland.  Well, Patrick is more the connoisseur so I asked him his opinion and he didn't fully commit to "the best in the world," but he did say that it is some of the best he's had.  Personally, I consider myself a naan expert and YES, it was the best I've had! If you're in Glasgow stop in at Assam's Restaurant you won't be disappointed.

Patrick and Desmond at the best Indian restaurant, Assam's

Planes, Trains and Automobiles

We traveled from Paris to London, London to Edinburgh and Edinburgh to Glasgow by train.  I can not say enough about the train system.  It's quite comfortable, efficient and relaxing to travel this way. It was definitely a highlight of the trip and I'm glad we opted for train versus plane.  On the flip side, the plane rides between Paris and San Francisco were quite brutal physically for Patrick and myself. I can see why people spend the money to fly business or first class, it is just not comfortable to sit in a small confined space for over 10 hours.

If you are considering Air France for your travel abroad, I recommend that you select another airline.  Although, we had assigned seating they bumped us into open seating on our return flight from Paris to San Francisco. We explained to the boarding staff the need for us to sit together due to Patrick's disability and they still didn't get us seats together.  We were fortunate that people sitting around us on the plane were willing to change seats. I was surprised by their lack of concern when someone says they have a disability, you'd think they would be much more accommodating.  Ah, well if I've learned anything in the last six months it's that there are really wonderful people that will go out of their way to help someone in need and then there are others... Fortunately most people are the first group.

Thanks to Navjot, Denise, Lourdes & Corrinne... They feed, checked on and gave rides to Caitlin who opted for staying home while we were in Europe. 
 

More Photos...

Patrick and I had such a great time in Europe, I wish I could write about all the different things we saw, but a picture is worth a thousand words, so if you are interested, you can view our photos at the following link: timmonseuropetrip2013.shutterfly.com/

Bonjour, Cheers and Au Revior,  

A word of advice from the Underground in London... While you're out in the world "Mind the Gap."

Just a Song Before We Go...

We are heading out on Friday for our trip to France, England and Scotland.  Neither of us have been out of the USA except for Mexico, so we are excited for the journey.  My hope is that we've remembered everything and that the ten hours on the plane will go quickly.  You see I've never been a huge fan of planes, so... wish me luck!

Trip Planning
Patrick is a good planner, he has the patience to read books, websites and forums to figure out what needs to be done for the trip.  I wish I was more help, sometimes I think I'm ADD because looking at various options of tours, hotels or websites just grows tedious. Now don't get me wrong I appreciate a good plan for travel I just tend to like the go with the flow feeling, however I think in going to Europe we probably should do a little planning.

The Best Indian Restaurant is in Scotland
We are both looking forward to various tours and sites: Stonehenge, Lourve, etc.  Patrick's friend from work, Desmond, just coincidentally is in Scotland visiting his family during this time and offered to spend a couple days with us showing us around Scotland.  This will likely be the highlight of the trip.  One of Desmond's promised destinations is the "best indian restaurant" -- "better than anything in the states."  Yep, we're heading to Scotland to try the best Indian food...

Update - Well this blog has been sitting in the unfinished posts for the week... so, it's Friday and we're sitting in the Air France Terminal waiting to board.  I thought I'd just tag this on with the previous blog since I haven't posted it yet. As we sit here there is a little girl across from us, my guess is she's about 2 years old, she is watching the Disney movie, Ratatouille, apparently she is getting ready for France. Airports are interesting places and the people watching opportunities are endless.

Speaking the Language...
My greatest anxiety of traveling overseas has always been the language difference..  I know about three words in French: Bonjour, Merci and Oui - likely all of these I mispronounce.  Our daughter, Caitlin took three years of French and our hope was that she would teach us a few words... well, she tried, but quickly seemed to lose patience with our attempts.  So, we're sitting in the terminal listening to many conversations being spoken in French and not understanding a bit.  My goal, is to double my knowledge of the French language - yeah, I know that brings my total to 6 words.

The Stomach Flu is Not Fun...
Patrick came down with a stomach virus yesterday - yeah, great timing.  He seems to be recouping but it was a dreadful illness and hard on someone with ALS.  I guess, on the up side, it's better he got it the day before the trip than during it.  A 10 hour plane trip can feel like an eternity when you're not feeling well.

The Journey... to see the Mouse?
I suspect I'll do a whole blog on our adventures in Europe.  So, yes, I'll bore you with our family photos.  My goal is to get all the tacky tourist photos we can, the Eiffel Tower, Big Ben, Stonehenge etc.  Oh, and if we're lucky we'll get over to see the French Mickey Mouse.  Yes, we are traveling 10 hours on a plane so we can see Disneyland Paris. Just for the record the most popular items that friends asked us to bring them are from Disneyland Paris.  So, perhaps we're part of the in crowd or maybe our friends are just as silly as us.

I'll keep you posted on our travels - hope all is well with you and yours.

Notes on Life #3

Well, as many of you know March and April are the busiest time of the year for a tax accountant - so although I do write blogs in my mind - they don't quite make it to "paper." The tax season brings its usual craziness with tons of work and a short time to get it all done.  I'd be lying if my perspective was "business as usual", the strain of the hours and being away from family was tough. But, its April 16th, Accountant's Day Off, and I'm glad that life has returned to "normal."

Baby Sofia!

Baby Sofia

The big news of the month - Sofia Rose Carrabello was born on April 4th, weighing 6 lbs, 10 ounces.  She is a quiet baby, with a face of cute expressions and a head full of brown hair. Seems like with all things these days, everything in our lives has some drama and Sofia's birth was no exception.  Corrinne was in the midst of labor at Mercy San Juan when a fire broke out and she had to be evacuated to the other side of the hospital. Fortunately, no one was hurt but it did interrupt quite a few moms in labor including Corrinne.

Apparently, Corrinne and Sofia have opposite blood types which can cause jaundice so they put Sofia in a cooker... I'm not kidding have you ever seen these things it's like a roaster.  Patrick says its a tanning booth, but nah, it's a cooker.

Sofia getting her first tan

Anyway, no worries, mother and baby are fine and Sofia was cooked to perfection so she's out of the oven..

Who Said Life is Fair?

A personal complaint on fairness...  it seems to me if you are given a diagnosis such as ALS you should be given an "out" on other health issues.  Apparently, regardless of what I believe is "fair" that is not the case.  Patrick's blood pressure went up over the past month and Dr. Fujikawa has been running tests to determine what the cause is in the dramatic increase. This added stress is not helpful, and completely contrary to managing high blood pressure.  Patrick started medication so we are working to get this under control.

I didn't get a reprieve either this past month, I came down with strep throat with all the wonderful trimmings; fever, chills and sore throat.  You know an accountant is sick when they miss two days of work during the tax season. Penicillin is a miracle drug though and within 24 hours I was already feeling better.  Wish they had a similar pill for ALS...

Beware of Dogs "Look'n Cute"

Look'n Cute!

Patrick took a slip on the stairs this past month.  Just so you don't worry, he's a little bruised (ego and butt) but fine.  No, he didn't slip because of ALS... he slipped because he was standing at the top of the stairs teasing Roxie, the dog, at the bottom of the stairs.  He got a little to close to the edge of the first step and down he went.  I was in the other room and found him on the stairs after I heard the fall.  He was laying on the stairs when I arrived, he struggled a little to get up, but he managed.  Later, when I questioned him on what happened, in classic Timmons fashion he said "it was Roxie's fault, she was look'n cute." So, we are trying to be extra careful around the dog when she's "look'n cute." I advise you also if you come to visit the Timmons' House - beware of the dog, look'n cute, it can cause falls...

Let's Go to... Detroit?

Patrick and Caitlin are headed on a road trip this summer.  When Patrick asked Caitlin where she wanted to go, she exclaimed "Detroit."  We thought that was an interesting choice of destinations, not exactly Hawaii or New Orleans but hey, it use to be quite the "motor city."  Nah, I doubt they'll actually head to Detroit, but the discussion is on with Caitlin getting the final word on where they are headed... I'll keep you posted.

 ALS Walk

We are thrilled that Mindy Bergstrom & her family and Jennifer Barron are joining us for the October 5th Walk to Defeat ALS.  Also, a big shout out to Jen Kootstra who sponsored our grandsons, Anthony and Christian on the walk and Joan Komaromi, my old college friend, who made a donation! 

I hope to see all of you at the walk, it's for a great cause.  If you can't make it, donations are always appreciated!   You can sign up, make a donation or get more information at Walk to Defeat ALS.

Sign up under Team Timmons!

Things to look forward to...

MAY: England/Scotland Trip
MAY: Caitlin's High School Graduation, Family Coming to Celebrate
JUNE: Visit Patrick's family in Denver
JUNE: Patrick and Cheryl's 30th wedding anniversary!
JULY: Caitlin and Dad Roadtrip
SEPT: Patrick's 50th Birthday!
SOGP meeting ETW - you ladies are the best!

Hope this blog, finds you happy and well!

How is Patrick Doing? #1

The question is often asked, "how is Patrick doing."  So, we've decided to write occasional blogs that answer this question...

For background, Patrick's first symptom was feeling fasciculations or twitching in his right hand in May 2012.  By September, weakness in his right hand set in that prevented him from doing the simple task of squeezing finger nail clippers.

After a fall, while kneeling in front the house, Patrick and I decided that he should see his doctor.  After a visit, the doctor referred Patrick to a neurologist.  After an initial visit with the neurologist in October, Patrick had an EMG, nerve conduction test and an MRI of his cervical spine.  In a follow up visit with the neurologist in November, the neurologist gave a probable cause as ALS and referred Patrick to the Forbes Norris ALS Clinic in San Francisco for a second opinion.  In December, the neurologist in San Francisco confirmed our worst fear. 

An ALS patient's most difficult area is where their first shows symptoms appear.  For Patrick this is his right hand, and by far this is his most challenging area.  He has lost strength, has limited fine motor skills and cramping in this hand.  The only positive thing is that Patrick is left-handed which we've heard is often the case, it affects the less dominate hand first.  It's interesting the things they know like patterns and yet so much that they don't know.

Fine motor tasks like buttoning your shirt, turning the key in the ignition, or opening a water bottle are difficult or no longer possible.  Fortunately, we purchased a new vehicle last year that has a push button ignition, voice activated navigation and phone, and has an easy shift to put it into gear.

Since driving the new vehicle doesn't require fine motor skills he still drives without problem, although getting in and out must be done with care. Sadly, the Corvette with its key ignition and 5-speed gear shift along with sitting low to the ground has made driving the Corvette for Patrick nearly impossible. This saddens both of us since he's always been such a classic car guy and drove it every Friday, affectionately called "Corvette Friday."  As I've said, ALS is a series of losses...

One of the consistent symptoms of ALS are the constant fasciculations, starting first in Patrick's right hand, they have progressed to his right arm and shoulder and now to his left side.  These make it difficult for him to sleep and he'll often tuck in his arms in an effort to limit them, since it makes sleeping uncomfortable.

Another of the symptoms of ALS is a heightened sense of nerves and reflexes.  We've all been startled or jumpy - this is increased with ALS and I've startled him a few times over the past month.  I patted his arm at one point and he said it create an unpleasant jolt in him.  At Christian's birthday party at John's Incredible Pizza Place all the flashing lights and sounds in the amusement area, were overwhelming to him and he couldn't spend a lot of time in that area.

Patrick continues to be the fastest walker in the household and at Disneyland we continued to struggle to keep up with his walking.  Occasionally his balance will be a little off and he does drift to the side sometimes but I doubt you'd notice much other than a little stiffness in his walking.  It's difficult for him to stand in one place for any period of time, staying in motion is easier.

With the loss of motor control, Patrick has to pay greater attention to his movements, complicated motions that require multiple muscles are difficult.   By thinking about the motions necessary and moving slower he has less balance issues and is less likely to fall.  At this point, he's only fallen a couple times over the past few months and it was when he was squatting down to do something.

With ALS, the body is continually working, which causes fatigue and burns a lot of calories. One of the first things they tell you, is don't go on a diet, an ALS patient shouldn't lose weight. Patrick gets a lull and his energy level dips dramatically in the late afternoon each day.  We are trying to recognize this period and adjust activities accordingly.

Based on the discussions with the doctor, Patrick is considered a slow progressor and will likely go beyond the usual 2-5 year life expectancy.  Since he first noticed symptoms back in May, 2012 he has seen changes throughout the year, but it does appear to be progressing slowly.  At this point there are no changes in his breathing or swallowing which are the life threatening aspects of the disease.

I wish this post were more uplifting but frankly ALS is an awful disease and the constant series of losses and challenges are difficult.  Patrick continues to amaze me with his attitude and spirit - you can't choose what is thrown at you, but you can control how you manage it. 

A huge thanks to those of you who help deliver Girl Scout cookies, open water bottles or doing small acts when you see a need.  It uplifts the spirit!

Join Team Timmons

The ALS Association is holding it's annual walk on Saturday, October 5th at Raley's Field.  Mark your calendar and join Team Timmons for the Walk to Defeat ALS.  Here is a link to the sign-up page where you can be part of TEAM TIMMONS!!

Walk to Defeat ALS

Support a great cause!