May 31 – Love Wins

Welp, here we are: the end of ALS Awareness Month. It’s been fun, but I’m looking forward to more upbeat topics – muscle deterioration, falls, death, etc. aren’t my favorite.

My hope is that you’ve learned something, please tell me you learned SOMETHING, and that you’ll join us at a walk, or at the Rangers game, or in the very least bought a koozie. Your beer wants you to have a SunnyStrong koozie – do it, do it now!

Know that I love you, and that we appreciate the love, hugs, support, and prayers day in and day out. No one is promised tomorrow, or their health and longevity, so my prayer is that we’re all more aware of the love around us, the blessings God has given us, and each of us takes advantage of today.

Thank you for reading, learning more about ALS. Same time next year? Deal! Until then, I’ll keep entertaining you with my ridiculousness, and you keep hugging me every chance you get. Love wins, today and everyday.

Image may contain: 1 person, tree, outdoor, closeup and nature

Join Team SunnyStrong:

SunnyStrong Store

7/5 ALS Awareness Night at the Rangers

9/16 MDA Muscle Walk at Globe Life Park 

11/4 ALSA Walk to Defeat ALS at Trinity Park 

May 30 – Fasciculations

According to MDA:

Fasciculations are a common symptom of ALS. These persistent muscle twitches are generally not painful, but can be annoying or interfere with sleep. They are the result of the ongoing disruption of signals from the nerves to the muscles that occurs in ALS.

We’ve been friends long enough that I can show you the gross stuff, right? Good! So this entire month, knowing that this post was coming, I have been trying to capture my twitches on camera so that I can show you, but when you move they go away, so trying to grab the camera ruins it. They happen all day, but as soon as I started filming my arm to hopefully catch the twitch in action, my leg would start twitching and I couldn’t get any of it. Sorry, Charlie! What I can show you is the fasciculations in my tongue, which is constant and easy to capture. Don’t watch this video if you are grossed out by peppermint coated tongues – deal?


Slooooooooow moooootion

​​

Join Team SunnyStrong:

SunnyStrong Store

7/5 ALS Awareness Night at the Rangers

9/16 MDA Muscle Walk at Globe Life Park 

11/4 ALSA Walk to Defeat ALS at Trinity Park 

May 29 – Mobility

You know Phil, right? Have you kept up with his journeys?

img_7495

Phil is a conversation starter, people are curious about his purpose, and once someone thought I was blind – hysterical. Anyway, Phil is named after my favorite TV Character: Phil Dunphy from Modern Family.

Image result for phil dunphy

The best thing about Phil is that he is very mobile, can go anywhere with me, doesn’t leave a mark when I smack Kenneth or the cat, and is lightweight. When walking with Phil, my center of gravity is back which means when I stumble (happens every day) I’m able to right myself before full body contact occurs. Did you know Phil has an identical twin, Larry, named after Larry the Murderer on Trial and Error?

larry

Problem with walking with both Phil and Larry is that we live in a world of doors, and neither is very comfortable to sit on. When my sweet Great Aunt Mary passed earlier this month I inherited her rollator. His name is now Merle after the late, great Mr. Haggard and he hasn’t gotten much travel time, yet, but it’s coming.

 

Tom the great got me this bad boy for the weekend, and man did it save my life at cookoff. I didn’t name him in effort to not become too attached since he is just a loaner. Shoutout to my personal pit crew, Tyson Kash, for keeping me up and running this weekend!

Image may contain: people sitting

Once I get back from Mexico, Tom is setting me up with a SWEEEEET three wheeler. I got to test drive it, even though he kept turning me down in fear of “wall damage”, it was awesome. I’m excited to have it in the family, and haven’t come up with a name yet – suggestions?

Image may contain: 1 person, sitting and indoor

Join Team SunnyStrong:

SunnyStrong Store

7/5 ALS Awareness Night at the Rangers

9/16 MDA Muscle Walk at Globe Life Park 

11/4 ALSA Walk to Defeat ALS at Trinity Park 

May 28 – Falls

Falls suck, period. Self rhinoplasty is no fun for anyone, ever. Trust me:

img_7213

I’ve had some pretty gnarly falls, resulting in LOTS of tears, a broken nose, a concussion, sore muscles, ginormous ankle (that was everclears fault) and zero remaining dignity. But, I have my teeth! Have to stay positive, right? The problem when I fall (other than the obvious act of falling) is that even through I get my hands up to “catch” myself, most of my weakness is in my upper arms therefore they crumble on impact and I use my Big ol’ Brous lips to break my fall.

Image may contain: 2 people, closeup

Image may contain: 1 person

Image may contain: 2 people, people smiling

ALS causes falls in a number of ways. Leg weakness can lead to foot drop and tripping. Arm or neck weakness can cause balance problems.

Pray for my poor, sweet husband. You know me, you know how hardheaded I am, and you know I’m not slowing down anytime soon. He catches me, thank goodness, washes my hair when it hurts to lift my hands over my head, and tells me to slow down – but honestly, where’s the fun in that?

Join Team SunnyStrong:

SunnyStrong Store

7/5 ALS Awareness Night at the Rangers

9/16 MDA Muscle Walk at Globe Life Park 

11/4 ALSA Walk to Defeat ALS at Trinity Park 

May 27 – Community

The ALS community is one of hope, support, compassion, and encouragement. The entry fee is astronomical, and any of us would forfeit our membership for a cure, but if we have to be here at least we’re here together. 

I have met some of the most amazing people through this diagnosis that I would never know otherwise. The love and hugs that pour from families that know exactly what we’re going through is what keeps us afloat. If I could be the loan ALS patient in order to spare the others, I would do it in a minute. This disease is unforgiving, unfair and underfunded. 

As we near the end of ALS Awareness Month, my prayer is for the countless families in the community of this disease. I hope that you’ve learned something through these daily posts. I invite you to join our family and the other families in this community as we work together to raise awareness, to find a cure, and to love each other through this. 

A Life Story Foundation 

Join Team SunnyStrong:

SunnyStrong Store

7/5 ALS Awareness Night at the Rangers

9/16 MDA Muscle Walk at Globe Life Park 

11/4 ALSA Walk to Defeat ALS at Trinity Park 

May 25 – Just For Me

On 10.10.15 I went and got something that was just for me, with three of my favorite people on the planet. 


I got this as a physical reminder of everything I have overcome through my ALS journey. through good days and bad, frustrations and triumphs, laughter and tears I can look down and remember that I’m stronger than I feel, I am blessed beyond belief, and I will stay forever young. 


These are my people, my sanity, and my lifelines. Testing to get to my diagnosis was painful and exhausting physically, mentally, emotionally. The tattoo is mine and seeing it everyday gives me motivation. 

Join Team SunnyStrong:

SunnyStrong Store

7/5 ALS Awareness Night at the Rangers

9/16 MDA Muscle Walk at Globe Life Park 

11/4 ALSA Walk to Defeat ALS at Trinity Park