2.24.17 Pseudobulbar Affect (PBA)

If there’s a silver lining to ALS, easily this is it. According to the Mayo Clinic, 

“This condition is characterized by an involuntary and uncontrollable reaction of laughter or crying that’s disproportionate to an event. The crying or laughing may start as a response to a situation, such as a sad movie, but the feelings are more intense and last longer than expected. They’re difficult or impossible to stop.”

Sounds fun, right? I’ve been giggly my entire life, laughing is something I not only enjoy but I’m really, really good at. So far I haven’t had any crazy episodes, unless you count the day after my last major fall where I was crying and laughing manically,  but I think that was more shock and exhaustion. I’ve been fortunate enough to have a prescription that helps keep it in all in check, sometimes. 

PBA or not, there are 3 girls that can get me to laughing so hard, at completely inappropriate times, and ridiculously disruptive to everyone around us at a record setting speed. Luckily for everyone in the movie theater last night, the four of us were together and at the top of our game. 

I’m sure there were disgruntled patrons behind us, and if you know anyone who was offended by my inappropriate laughter during 50 Shades darker please tell them it’s all Jaci’s fault. She started it. 

Shelby dropped the ENTIRE bag of popcorn, Jaci kept me laughing at all of the quiet parts, and thank goodness Ashley was at the opposite end or we would have been asked to leave. It was a fun, easy night with 3 of my favorite people celebrating a 30-something birthday. God definitely knew what he was doing when he brought these beauties into my life, next time we should probably wait until it comes out on DVD…


This sweet boy was not happy with my late arrival, and he made sure I knew it. 

2.22.17 – Kind Stranger

On Wednesday I attended the State of our city address with Mayor Betsy Price. Easily one of my favorite lunches that the Chamber puts on every year. I am fortunate to live in the greatest city on Earth and immediately following lunch I was reminded why:

I was waiting outside of the convention center for my boss to get the car and pick me up. this cab pulls up and he’s saying “hang on, hang on”, throws it in park and stops all of traffic because he thought i was blind because of my trekking pole and needed help crossing the street 😂😂😂

I apologized, he apologized, and I still haven’t stopped laughing. 

other memorable moments from the lunch:

my Mattie #iHico #HicoILikeO

my Marilyn #goldenbeauties #mymentor #myfriend

2.20.17 Clinical Research Study

It blows my mind that in 2017 we still know very little about ALS or the brain for that matter. When I was first diagnosed, Dr. Phillip said I had 3 things to immediately consider:

  • Did I want a second opinion?
  • Did I want to go on Riluzole? (see Medications)
  • Did I want to participate in clinical trials?

The optimist in me was thankful to have these 3 questions to focus on, rather than the “27 year old with a terminal disease” thing. Of course I wanted a second opinion, so off to UT Southwestern we went to meet Dr. Elliott and eventually Super Nina Gorham the Great. Of course I wanted to take the only FDA approved drug available to slow the progression of ALS. Only extends life by a few months across the ALS population? Optimist Sunny chooses to focus on the operative phrase “extends life” in that statement.

Of course I wanted to participate in clinical trials. Being raised as the first child in our crazy family dynamic, my entire life is one big guinea pig trial. Well she’s still alive, must be doing something right 🙂 I’ve always been open to helping others learn, grow, and practice. Once at WC I agreed to be a phlebotomy student’s first “live stick” outside of her classmates – in return she promised not to wipe off my makeup if I fainted since it took me so long to get ready. Rarely have I been in a situation that the cons outweighed the pros in helping someone else practice a new skill or trade.

During my second opinion appointment at UTSW I met Super Nina Gorham the Great. Seriously, everyone needs a Nina. She got me plugged into the Rasagiline trial and during the 12 months of the trial we became very close. Nina signs off on all ALS related decisions, she talks me off a ledge at least once a month, and can even hit my vein on the first stick – folks, she’s got it all. Now I’m in a different study with Nina, this one doesn’t involve drugs rather it is cataloging Phenotype, Genotype, and Biomarkers in ALS and related disorders (which is also the title of the study).


Back to the whole “not knowing much about ALS” thing, this study is helping to compile all kinds of genetic data so that one day there will be a “qualifier” for ALS and eventually a cure. Like I’ve told you before, ALS is a disease of deduction meaning there’s no one test that says “yep, you have this horrible disease that’s going to destroy your life – have fun!” So what happens is that they test you for every other imaginable thing out there, then when the list is done an there’s no culprit, ALS becomes the working diagnosis. And even better, because we don’t know what “causes” ALS, we can only treat the symptoms not the root of the problem. Told you this was fun.

So this appointment is every 3 months, and involves A LOT of questions. It’s great though because I get to hang out with Nina the Great and she sends homework home for my husband as my caretaker. Also, I get paid. Not enough to be a legit side hustle gig, but money is money. Worst part is the blood draw, all 9 tubes of it. I’ve learned the importance of hydrating and Nina the Great hooks me up with Graham Crackers and Ensure afterwards (clinical study also turns you into a 90 year old man). Since there’s no drug trial for me right now, this is a great opportunity to further research in the field of ALS. Hopefully a drug trial will be available soon, and rumor is that there’s a few promising ones on the horizon. Until then I’ll keep peeing in a cup and donating blood by the gallon, all in the name of science.

2.19.17 Tribe Date 

As i’m sure you have figured out, i have many circles of friends that serve different functions in my crazy life. Sometimes the circles over lap and all chaos breaks loose.

Dawn and Jen are affectionately dubbed as “My Tribe”. We have been through hell and back, cancer, loss of parents, marriages, ALS, breakdowns, graduations, children, and lots of other life scenarios that would be unbearable without love. Love wins every single day in our tribe. We choose to celebrate that love as often with we can with dinner, drinks, and massages. I’ve lost count of how many years we’ve been celebrating this way, and i pray we never get too busy to get together and love each other through life.

My Tribe

2.14.17 Trekking Poles

So, I (with persistent encouragement from others) decided to get a walking assist to keep me on my feet and stable. See more about that here: 30. Let Go and Let God

Turns out, cane wasn’t the answer and in swoops God and answers my prayers: trekking poles! I met a guy Saturday in ATX who had been in a motorcycle accident resulting in paralysis from breaking his neck. He was determined to not spend all of his life in a wheelchair, so he busted his tail and regained the ability to walk. He showed me his trekking pole (get your head out of the gutter) and we discussed pros and cons. I ordered my very own trekking poles on Sunday and today they arrived in my office. ALS sucks, but we’re going to have fun with it! He said “there’s worse things than a power wheelchair” and he’s right! 

 

Just call me Phil Dunphy:

2.10.17 Clinic 

ALS sucks, but clinic days at Texas Neurology are wonderful! This trip brought 3 first timers: my Thindy, my Wendy, and my Jimbobble.

MDA clinic takes a multidisciplinary approach to monitoring the progression of my ALS which is not only efficient but really, really fun. My team is amazing and makes this ridiculous disease somewhat bareable. One appointment, every 3 months I have a hot date with Tad my dietician, Heather my speech therapist, Katie and Kristen my OT and PT, Ashley my respiratory therapist, Tom my equipment guy, Sheliah my social worker, Chrystal my nurse, and Dr. Heitzman my neurologist. And the best part is: DONUTS 😬 as far as clinic appointments go, this one is pretty stink’n great.

What I love about this clinic as opposed to the one at UT Southwestern is that all of us meet in an infusion suite and chat between therapists. This is my support group, my people who know 100% how truly sucky this disease is for all involved. We discuss, we troubleshoot, we support and love each other through the progression. The admission price into this club is astronomical but the community is a compassionate, supportive, and strong one and I’m glad to be an active member.
These are from a previous appointment but a great view into the greatness that is clinic:

 

 

 

#alssucks

#SunnyStrong

30. Let Go and Let God

I built this one in as a buffer, a challenge if you will. Unlike most, I appreciate the opportunity to step out of my comfort zone and see what happens. By not setting something specific for this one meant I couldn’t plan, and that in and of itself is out of my realm of comfort. God’s got it, he’s got me. I know that, I have faith in his plan and provisions, and appreciate when he steps in and takes it out of my hands. With that, this one on the list is hard, hard, hard for me.


ALS sucks, I say it every day, we have it on shirts, hashtag our activities on social media, see it’s torturous, ugly head creeping into all areas of our life. I always reveled in the secrecy of my diagnosis, being able to tell strangers and acquaintances that “My hands don’t work very well” like it wasn’t obvious, like it was my equivalent to a pregnancy announcement but without the excitement. Today, ALS was given a physical, tangible representation. I’m marked, obvious decline, noticeable difference. I don’t consider myself to be vain, but definitely conscious of my outward appearance and it’s reception by others. This addition is a blow to my image, my pride, my essence.

Of course I’m being somewhat facetious, I mean it’s a stupid cane not the plague or Ebola. Still, I’ll be 30 on Saturday and now walking with a cane, can’t no body tell me that was how you pictured life in your 30s. I am grateful for a simple fix for my balance issues, that this process is coming in phases rather than over night. I am grateful that my disease is progressing slowly, as I’ve met so many that haven’t been afforded that luxury. I am grateful for sweet friends who are ready to bling, bedazzle, decorate this cane to be reflective of my personality.

Life as we know it is ever evolving, changing. Kenneth is my rock, and can talk me off any ledge I find myself running towards. I am nervous about the looks. I am nervous about the questions. I am nervous about the undeniable reality this cane brings into my continual processing of having a terminal disease. I, Sunny Brous Erasmus, have a disease for which there is no cure, a disease that is going to get worse, much worse, before it gets better, and a disease that is going to kill me.

On the bright side, maybe I won’t fall as often (my teeth appreciate that). I have a cane that will soon be decorated with colors, sparkle, and rumor is a horn. I now have something to whack people or the cat with. I am stronger than the blow this cane is having on me emotionally, I have the tattoo on my foot to prove it. Remind me of that when I forget, I’m sure there will be many days that I’ll need it 🙂

10. Happiness Project…Change of Plans

Care to read with me?

“There is no duty we so much underrate as the duty of being happy. —ROBERT LOUIS STEVENSON”

“During my study of happiness, I noticed something that surprised me: I often learn more from one person’s highly idiosyncratic experiences than I do from sources that detail universal principles or cite up-to-date studies. I find greater value in what specific individuals tell me worked for them than in any other kind of argument—and that’s true even when we seem to have nothing in common.”

“I wasn’t depressed and I wasn’t having a midlife crisis, but I was suffering from midlife malaise—a recurrent sense of discontent and almost a feeling of disbelief.”

“I grasped two things: I wasn’t as happy as I could be, and my life wasn’t going to change unless I made it change. In that single moment, with that realization, I decided to dedicate a year to trying to be happier.”

“They say that people teach what they need to learn. By adopting the role of happiness teacher, if only for myself, I was trying to find the method to conquer my particular faults and limitations.”

“People are more likely to make progress on goals that are broken into concrete, measurable actions, with some kind of structured accountability and positive reinforcement.”

“I had my own idiosyncratic priorities, with many items included on the list that other people would have omitted and many items omitted from the list that other people would have included.”

“According to Aristotle, “Happiness is the meaning and the purpose of life, the whole aim and end of human existence.” Epicurus wrote, “We must exercise ourselves in the things which bring happiness, since, if that be present, we have everything, and, if that be absent, all our actions are directed toward attaining it.””

2.1.17 Modification: this is a great book, her methodical approach to such an abstract concept is admirable to my OCD, Type A, Control freak tendencies. I am leaving this in my cue to complete, but now is not the right time to fully appreciate her work.

After finishing Dark Places and Year of Yes, my soul is craving dark and twisty, mixed with humor. My heart isn’t in the right place for self exploration, and dangit it’s my list and modifications are allowed. I will finish Happiness Project this year, it just won’t be now. I’ve decided to shift to two other reads that are more what I’m in the mood for:

      

Feel free to read with me 🙂 I’m starting with Janet Evanovich and will post my favorite quotes like I’ve done with the other books.

Tricky Twenty-Two – started 2.1 finished 2.5

Sharp Objects – started 2.6 finished