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!