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.