4.19.18 We Have One Month, People

I’m calling today’s conference room meeting to remind everyone that May is ALS Awareness Month and we have lots of fun things going! We are exactly one month away from the greatness that is the 14th Annual Hico Steak Cookoff. Join us in Downtown Hico on May 19th for a day of music, food, and wine tasting! Stick around Hico on the 20th for BBQ as Po Campo is Smok’n ALS for Sunny.

We will be drawing for the Justin Boot on stage during the cookoff. Tickets are $1 each and can be purchased here.

Also, orders for the NEW SunnyStrong shirts are due by MAY 1st so order yours today! We have removed “sucks” so that the shirts are school and work appropriate. You have 3 color combinations and 3 shirt styles to choose from. I promise you are going to love these shirts, and we’ve included a brotank option for summer fun.

Red and Blue shirts are also available in the store along with many other SunnyStrong swag options.

May will be here before we know it, get your SunnyStrong gear ready for a month of awareness, advocacy, and wrecking havoc on ALS!

4,18.18 Just Call Me Killmonger

Did y’all see Black Panther? Remember the cousin, Erik Killmonger, played by Michael B. Jordan? He had the raised scars all over?

Erik Killmonger : I don’t worry about no brand. Check these out. Each one is for a kill.

My scars didn’t come from kills, obviously, but i’m starting my own pattern of skin biopsy dots. I’d show you but it’s still icky. Monday I had a date with your favorite and mine, Nina the Great at UTSW. Apparently there are two ways to store skin biopsies: live cells and not live cells. Whichever one we did last time was wrong for what UCSF needed so we did another punch.

Also knocked out my 18 month appointment for the PGB Create Trial. Crazy that we’re this far along in that study. I was so excited to see Nina, and maybe still under the influence of the Taco and Tequila Festival, that I showed up in Dallas without wearing a bra – no bueno señor. Nina had to do the blood draw in office rather than sending me to the lab because it’s inappropriate to take your shirt off when you’re free hanging and thankfully she hit on the first stick, whoo hoo!

After this appointment we took this hot mess on the road and grabbed lunch before my next hot date with Dr. Riehs. I got a good gum report – which is huge because brushing is hard – got these babies scrubbed and polished and got to watch the Little Mermaid. Yes I’m 31 still going to a pediatric dentist, judge on playa

Dallas survived another visit from Sunny and my two favorite words are now: express lane.

4.13.18 My Grandma Houston

“And I don’t see how you could ever be anything but mine” – Kenny Chesney

 

Well, here we are: day 3 of discussing Saturday’s impact – the highs and lows. We got Sheri and JD married, we showered Amanda and Casey, and now we’re left to talk about the earth shattering reality that my Grandma Houston is no longer here. I’ve written this post in my head half a dozen times, but it’s taking every ounce of strength I possess to put it in writing – almost like writing it out makes it real, final. I’m thankful for the cathartic release of writing, it’s kept me sane over the last 15 months, but today it’s an extremely painful catharsis.

30429825_10101157558361116_1648241940_n

Saturday would have been Grandpa Rusty’s 86th birthday, and I find relief knowing that she joined him in Heaven to celebrate. We would be lucky to love and be loved the way my grandparents loved each other. How poetic. Don’t get me wrong, I’m very much so in a selfish, irrational, “I just want her back” place, but I know she was ready and that gives me peace.

 

There was nothing she loved more than her grand babies, until Peyton came along and stole the show, after that we were lucky to get and keep her attention. Nick was always the favorite, baby of the bunch and only boy, he was a shoo-in for favorite. She loved us fiercely, and made sure we knew it. I’m thankful Peyton got to know her and it hurts to think that she won’t get to meet the other babies that are sure to join us in the future.

 

I can’t think of a time that we weren’t laughing. She was witty, she was quick on her feet, and she was always looking forward to “Time for Scotch”. It was always 4:30 in her kitchen in Houston, which helped with happy hour. She always had ice cream, and on many occasions it served as a complete meal – anything goes at Grandma Houston’s house. We spent a week there every summer, swimming at the club, playing Gin, and sitting as close to her as possible. Even as an adult, I always looked for ways to share her chair, or hold her hand, or just be in her personal space. She taught me how to play solitaire – she dealt herself on the ottoman – and it’s still my go to for idle moments.

 

She always wanted to know how all of you were, whether she knew you or not. Asked about everyone’s babies, couldn’t believe how many weddings we had, and always wanted to see pictures. She loved Ian. She loved what Hico gave us, and loved seeing us in the paper. She made the best chocolate sheet cake, grandma cookies, and grandma rolls. Her shrimp dip on shrimp is to die for. Obviously we never were hungry for long.

 

One of my favorite memories was when I had the chicken pox. I got them when I was older, 6 or 7, and mom sent me to Houston to recover on my own rather than contaminating everyone else. I had Grandma Houston to myself for an entire week, and got every single thing I wanted. We rented movies every day from the grocery store. We played cards, we ate lots of ice cream, and spent the entire week together. I’m sure it was more work than she bargained for, especially since I was trapped inside and she couldn’t escape my non-stop talking by taking me swimming. Y’all think I ramble now? Imagine 6 year old Sunny.

 

Grandma Houston was amazing. She took up golf so she could play in women’s events while Grandpa Rusty worked for Texaco. She hit hole-in-ones, she taught me how to fill divots, and she made sure she brought something to every conversation she found herself in. We shared a love for knickknacks, everything had a story and a place. She loved to celebrate, and I am determined to carry on that quality. One year at Thanksgiving we showed up and everyone had monogrammed towels, color coded by family. The next year we each got monogrammed initial black turtlenecks – I’ll have to find that picture, it’s funny. We got bandannas one year and all looked like gangsters, she had a cup towel with a picture of the Queen for the London Olympics, and at the lake when we celebrated their 50th anniversary she busted out a black trash bag full of stuff and we had a Chinese Christmas in August – the list goes on.

30120833_10101157552128606_338980827_n

I imagine their reunion looked similar to this, a lot has happened in the 3.5 years since we lost Rusty. We’re celebrating her life at the end of April in Norman, complete with a multi-event 3 day agenda, hotel room block, and a cousin van. She would absolutely hate that we’re fussing over her, but I’m looking forward to honoring her in the city that meant so much to her. She was ready to go, she was prepared and had accepted this next step. The logical part of me needs the memorial in order to process everything – Type A for ya; the illogical part of me wants her back, snuggling me on the couch and asking about “What’s his name” – she never could remember Kenneth’s name. I’ve cried, a lot, and I don’t think I’m done but I know she’s happy and healthy again in the arms of the man she loves.

30414777_10101153757303466_1694294100678803456_n

Keep your lap open, Grandma Houston, it’ll be the first thing I look for when we meet again.

4.12.18 Two of a Kind, Working on a Full House

“This time I found a keeper, I’ve made up my mind Lord, the perfect combination is her heart and mine. The sky’s the limit, no hills too steep, we’re playing for fun but we’re playing for keeps.” – Garth Brooks

In case you forgot, I’m getting a sister in September! She’s a yankee, kinda talks funny sometimes but good gracious we love her. Part of the wedding process is a bridal shower and since we have two brides we got to do things a little differently.

We had everything a bride could want: mimosas, whataburger, presents and crazy toddlers running a muck the entire time. We had lots of laughs, good family time and even got to smooch on some faces I haven’t seen in a while.

It was a cold and yucky morning but we showered Casey and Amanda and officially got the wedding festivities started.

The weekend also involved wedding dress shopping and everyone survived to tell about it. From what I was told, Amanda’s experience included tears of joy and emotion as she got the dress she wanted. Anyone who has ever been shopping with Casey for anything knows she was the only one crying because we kept making her try on different things. In the end, Casey also got the perfect dress and the store is still standing after 2.5 hours of hurricane Peyton.

Saturday was a whirlwind of emotions, from highest highs to lowest lows. Starting the events leading up to Casey and Amanda’s big day was definitely the highlight of a tough weekend. Seeing my sister, and best friend, love and be loved is everything I have prayed for my entire life. I wish I had the picture of Casey sitting in a dress we had her try on, just sitting and thinking. My heart was ready to burst in that moment of pride and confident beauty radiating from my sweet sister. Amanda is a wonderful addition to our crazy family.

The shower may have been for Casey and Amanda but these silly cousins stole the show.

4.11.18 Sheri Found a Foster Home

“Now I’m on a roll and I swear in my soul tonight I’m gonna paint this town. So bring me two Piña Coladas I gotta have one for each hand. Let’s set sail with Captain Morgan, and never leave dry land. Any troubles I forgot’em I buried’em in the sand. So bring me two Piña Coladas and say hello to her good timin’ man” -Garth Brooks

Saturday was a big day in my little world, with each contributing event deserving of its own acknowledgment. Never have I had such a dynamic range of emotions, from the highest high to the lowest low. It’s now Wednesday and I still cannot fully process the enormity of the days events, so please stay with me as I work through the hardest, most beautiful 24 hours to date.

We got this sweet couple married off Saturday night in Eastland. You’ll recognize the cute blonde in the middle, that’s my Jaci. JD and Sheri, or “Jeri” as the preacher dubbed them, are the epitome of perseverance and commitment to loving someone more than yourself. When I acquired Jaci in college, her mom took in all of us, even when it was snowing and she didn’t want us at her house. In true “Sunny” fashion, JD also came to us connected through my Aunt Kelly and Ricochet Fuel.

The wedding was gorgeous, the cake delicious and my dates were perfect. It was a beautiful wedding.

Kenneth and I were able to add to the Erasmus Family Funny Farm as Sheri chose her husband over his allergen. Dawg is settling into the chaos and has even ventured out of the shadows and into the living room. Big Step! We have some work to do to get our 3 fur babies comfortable with each other but so far it’s going well.

Had to steal a picture from Sheri as Dawg has yet to be available for photographs. He’ll come around, Ian and Baloo will make sure of it. If you recall, Ian is my first baby and he was adopted from Jaci in the fall of 2015. Together we fell in love and married Kenneth, bought a house, and added Baloo Bear. Team Erasmus is one big happy and extremely sleepy family!

4.4.18 Good Ride Cowboy

“He sang life’s a highway there’s only one way you’re gonna get through it.” – Garth Brooks

How cool is this? The amazing crew out at Lilly G Riding Club are hosting a Trailride for ALS on Saturday, April 14th.

Event Info:

  • Dublin City Park to Hico City Park. 7a.m. breakfast. 8 a.m. registration, 9 a.m. ride out. Travel along scenic Hwy 6.
  • $25 includes 3 meals. Deadline for entry April 10th. Awards and more. Negative Coggins Required.
  • Hamburger supper at City Park in Hico. $5 per person. 7 p.m. Benefiting ALS.
  • FMI msg or call 254 459 0141

This is the first event of many in a new campaign we’re calling “Adventures for SunnyStrong”. We are excited to raise awareness and dollars for ALS by utilizing the various hobbies and abilities of our SunnyStrong team members. Each opportunity will give you a chance to meet a team member who is sharing their passion in honor of SunnyStrong, and you can sponsor and promote their commitment to our cause through social media, donations, personal fundraisers, etc. We are in the process of recruiting and scheduling events throughout 2018. Currently we have marathon runners, steak cookers, and endurance runners on board. Know someone who likes to compete and is willing to help SunnyStrong in the process? Send them our way!

4.2.18 Reblog of What Makes Me, Me?

Make You Feel my Love

“The winds of change are blowing wild and free, You ain’t seen nothing like me yet” – Garth Brooks

I recently read ALS: A Respiratory Perspective by Kipling A. Jackson and I recommend adding it to your to do list. I sent copies to a few people with the hopes that they will send me their thoughts on the topic. Kip tells it how it is, complete honesty and the numbers behind certain options concerning care. It’s a first hand look at what it means to have a tracheostomy, not just for himself but for his wife, his caregiver (who is also his wife), and for everyone they encounter.

Picture1

Obviously this is a decision Kenneth and I will make together. Obviously this isn’t a decision that will be made lightly or without extensive research and conversation. Obviously this isn’t an easy topic to fathom much less discuss. Obviously this is terrifying.

As I said Friday, communication is a two way street. I come to you today with the hopes that you’ll read my post below, read Kips book – I read it one sitting, won’t take long – and give me your honest feedback – What did you find most interesting? What did you learn? Any takeaways?

PS I’m not asking what would you do, promise.

Original post from 3.20.17:

Friday I posted a blog about ALS and how it doesn’t make sense. It’s pretty sappy and depressing, so read at your own risk.

That post has infiltrated all of my thoughts and has manifested itself into this rambling. Enjoy!

According to MDA, “In ALS, nerve cells that control muscle cells gradually die. In most cases, the cause is unknown. As these motor neurons die, the muscles they control become weak and then nonfunctional. Eventually, the person with ALS may become paralyzed.

Without assistive technologies such as mechanical ventilation and feeding tubes, the average life expectancy is three to five years after an ALS diagnosis…Modern technology has allowed people with ALS to compensate to some degree for almost every loss of function, making it possible even for those with almost no muscle function to continue to breathe, communicate, eat, travel and use a computer…

Roughly half of all people with ALS exhibit some symptoms of cognitive impairment at some stage in their disease. Often, these cognitive changes are mild and include experiences like difficulty paying attention in conversations, trouble concentrating or finding words, and difficulty shifting attention from one thing to another.”

To sum it up: I’m going to lose all ability to do anything for myself, including breathing, and I’m going to maintain most if not all of my cognitive function with a front row seat to my physical depreciation. One would think that if you did have to sit and watch yourself deteriorate, losing your mental capacity might be preferable.

So what makes you, you? Or me, me? I doubt anyone would write home about my handwriting or how I hold a toothbrush, but I feel fairly certain that my love for traveling and the ability to do so are part of my being. I can’t imagine anyone would miss my snoring, but breathing on my own is something I’ve done for 30 years and if no one else missed it, I definitely would. I am certain that you could find plenty of others to join your crusade to reduce the amount of words that flow freely from my mouth on a daily basis, but surely that over abundance of words is part of my Sunny-ness.

So who am I if I can’t travel? Or breathe on my own? Or talk? None of these abilities are the first thing that I use to describe myself to others- Hi, I’m Sunny and I can breathe all by myself! Can you imagine interchanging fun description words like loud, giggly, and full of life with descriptions like breathing by ventilation, feeding by tube, or communication through computer?

If I consider breathing on my own, chewing my food, and using my mouth to speak all parts of what makes me, me then does the loss of these abilities make me not me? Is that how one determines their personal definition of quality of life? Is that where one draws the line of extrodinary measures? Do extenuating circumstances only apply to death bed situations or do they come into play when your death is long and drawn out?

Is it like a buffet? I’ll go for the feeding tube but ventilator life is out of the question? As I’ve mentioned before, and what point does your options shift from quantity (years) to quality (machine controlled living)? And is it okay to inflict that level of decision making on someone else i.e. my husband? Ultimately, is this even really my decision? Should I get a say in how much pain and agony I inflict on those around me in the form of constant care because I chose quantity over quality? Shouldn’t it be up to Kenneth how long we want to prolong the inevitable? Isn’t this exactly like putting the family dog to sleep because of old age, pain, and to be put out of his misery?

Why is it common practice to have these discussions and make these decisions for our family dog out of mercy but not our wife? Does that even make sense? If what makes me, me is gone, can we move into a conversation of mercy? If not for my sake, then for the sake of my husband? Or our marriage? Or my family?

Until we get to that point in this fun game called ALS, I’m going to enjoy the Sunny days as me, Sunny Brous Erasmus.

Reblog: 3 ALS News Items to Note: Exercise, a Documentary, and a Love Story

 

shutterstock_362066123-1048x480

I don’t know about your email inbox, but mine often overflows with news alerts. I can usually buzz through them fairly quickly, but last week, three items caught my eye and had me clicking through to learn more.

Exercise is safe for ALS patients

Until my ALS diagnosis in 2010, regular daily exercise was an integral part of my wellness program. So, it surprised me to learn that researchers debated the role of exercise for ALS patients. Imagine my disappointment to read that some medical professionals even advised against exercise altogether.

Nevertheless, I put my trust in my years of fitness training, followed my gut instincts, and continued to perform a modified version of my previous workout. Exercising made me feel better and sleep better, plus it helped me adjust to my body’s new limited way of moving.

Meanwhile, I kept a watchful eye on emerging research. Initially, studies looked at and confirmed the benefits of simple range-of-motion exercises. Then studies examined the intensity of exercise, recommending ALS patients work out at a moderate level.

Recently, the results of a six-month study comparing three different types of exercise or modalities shared more. I’ll admit to being a little more than pleased to read that resistance, endurance, and stretching/range-of-motion exercises are all well-tolerated by ALS patients. Furthermore, there was a trend toward fewer falls in the resistance and endurance exercise groups.

In a webinar scheduled for April 3, the physicians and staff at Johns Hopkins University will discuss the research results in more detail. You can bet I’ll be listening!

The Augie movie

Another interesting item in last week’s news was the March 20 release of the documentary movie “Augie” — the life story of Augie Nieto.

Back in 2005, while working as a wellness director, I came across the announcement in a fitness journal that Augie, the man behind Life Fitness and the Lifecyclewas diagnosed with ALS. In fact, that was the very first time I had even heard of ALS. I remember wondering briefly what exactly ALS was. Little did I know that only five years later, I would receive the very same diagnosis!

Since then, I’ve tracked Augie’s life journey with ALS. As his symptoms progressed, he embraced technology and various augmentative devices to continue his quest to create foundationsfundraising campaigns, and research institutes to find a cure for ALS.

And now, he has managed to bring ALS awareness to a whole new platform: mainstream motion pictures! Congratulations, Augie! I will certainly add your film to my “must see” list.

‘Rachel’s love story: Living with ALS’

Finally, another type of film made its way through the ALS community, this one a beautiful and moving video profile of my co-writer right here at ALS News Today — Rachel Lynn Doboga.

At the age of only 28, a little over two years ago, Rachel’s life took an abrupt turn when she was diagnosed with ALS. But thanks to her inner strength and positive attitude, she has persevered. A loving husband, family members, and many friends are certainly keys to her ability to adapt and live with her ALS symptoms.

Readers of Rachel’s The Mighty Mind column on ALS News Today should appreciate the fact that Rachel uses rapid eye movement software to compose and type her many articles and blog posts. Each word is painstakingly created by her eyes picking out letters on a computer screen.

It is an honor to write alongside Rachel and share our individual patient perspectives. I encourage you to watch “Rachel’s love story: Living with ALS.

It’s often been said, “With ALS, we are in it together.” But we also know that, together, we can raise awareness and, together, we can find the cure.

3.30.18 Dr. Pepper

“There’s a light in your soul, that says you’re one of a kind, don’t ever let go. Be original, an individual, like Dr. Pepper. Be you, do what you do, Dr. Pepper” – Garth Brooks

There is nothing I love more than Dr. Pepper, ask anyone, so hearing Garth Brooks sing about Dr. Pepper is heaven. Hopefully this flashback makes you smile because it’s a Good Friday to have a Good Friday!

I have loved sharing Garth with you this week and well, we may just continue it next week, too! We have so much to be grateful for this Easter, Kenneth and I are blessed to have each of you in our lives, sharing in our fight, and loving us through this disease. Monday I’m going to reblog an old post and ask for your input if you’re willing to share it with us. Communication is a two way street after all.

We failed miserably on our Lent plans, thankfully God loves us anyway. I hope that y’all have an egg-cellent Easter weekend and please use this as my official “dibs” on all of the Tootsie Rolls.

29745993_10101147069730416_699797656_n