One of the first questions I always get when people find out I have ALS is: how did I get here?
Well, it’s not an exciting story, sorry. In April 2013 I was playing intramural softball with a staff team at WC and while warming up with a friend my glove kept falling off. Since I was on the lineup to play first base, this wasn’t a good sign. Most teams prefer that their first baseman be able to catch. I can remember looking down at my left hand thinking “this isn’t right”, but I didn’t do anything because it didn’t hurt. Can’t be serious if there’s no pain – right?
You know your own body better than anyone.
Flash forward 7 months, I was going up the hill to teach tennis at WC and started having massive back spasms. Funny side note: I was teaching a college level tennis PE class for actual college credit, and I had never played tennis before in my life. We had fun, that’s all that matters. Anyway, massive back spasms, those are no picnic. If you’ve had one before then you know what kind of pain I was in. Thankfully Cupcake (Jeff Kahlden) was close by and carried me to my apartment.
I made an appointment the next day because that hurt. Pain has always been a major motivator for me, you see, I fall in the category of “big weenie” when it comes to pain. During this appointment, the doctor evaluated me then prompted me twice if anything else was going on. This is what is commonly known as a “God smacking me over the back of my head with rolled up newspaper” moment which usually results in absolute clarity. I showed her my ring finger that was twitching and was commonly referred to as my “party trick”. This revelation led to MRI to rule out MS – my first of a year’s worth of appointments with specialists.
ALS Fact: there is no single qualifier to determine ALS. We had to rule out all other scenarios or ideas to get to my ALS diagnosis.
In June 2014 I landed in a pain management doctor’s office. It was a hot day, I had driven all over town to get scans that weren’t where they were supposed to be, and I was not a happy camper. The age old question: on a scale of 1 to 10, how would you rate your current pain level? My answer: “3, and you’re 2.5 of it because your office isn’t where Google Maps said it was.” Y’all, that doctor looked me dead in the eye and said “Then why are you here for cortisone injections in your spine?”
Game Changer. You have to be your best advocate.
It was in that moment that I learned I was in charge of my treatment from here forward. I could not rely solely on my Doctor’s advice, I had to be part of all conversations, always asking questions, and being involved in every decision. So we switched gears and eventually met Dr. Phillip at Texas Neurology.
I walked into her office on January 20, 2015 expecting to be referred elsewhere. I was by myself, and dressed to go into work after the appointment. She told me I need strong support system, I assured her that I had one. She told me I fell into the “probable” category of ALS, and to not overwhelm myself with too much internet reading because it was going to be terrifying.
She told me to think about three things:
- Did I want a second opinion? She encouraged it, so she referred me to Dr. Elliott at UT Southwestern
- Was I interested in clinical trials? She gave me info about them, and I completed my first drug trial in August 2016, currently enrolled in a research study.
- Ask if I wanted to try Riluzole? At the time it was only FDA approved drug to slow progression.
- I asked her the pros v cons, only con was expensive med, many choose to just take money and use for a big trip.
- I decided to try a month of meds, see how it went, how expensive it was etc. I dropped prescription off at Walgreens and they didn’t have it in stock. I know I scared that poor pharm tech, I cried in line because the reason it wasn’t stocked was because it isn’t common. Tears and tears of relief flowed over me. Biggest Blessing: the ‘script was $10 with insurance
LOTS of tears have been shed in the days since January 20, 2015. I choose to celebrate that day rather than hide from it.
ALS is just part of my story, it doesn’t define me. We have learned so much since that day.
Needless to say, I did not go back to work that day. I drove home and My Soul Sister, Dawn, came over with whip cream and a cheese ball. We laughed, we cried, and we censored each other from what each of us read about this horrible disease. The next day at work, my JA Family showered me with my favorites: fresh flowers.
Another question that frequently comes up is “what is the best way to handle news when your or loved one is diagnosed with terminal disease?”
Everyone is different, and you have to meet them where they are. You can’t jump into treatments if the person is still grasping the aftershock of the news. Unfortunately, most people look for common ground “my so and so had ALS” and like everyone knows, ALS stories end tragically. Most of us don’t mean it to be malicious or cruel, but when talking to someone who is processing a terminal diagnosis, let’s stay away from death stories – deal?
Something that still comforts me is when the person takes the time to educate themselves on the disease and ask questions about my ALS. I provided a list of sites to family and friends as a resource for our conversations. I am adamant about only sharing credible information, and even though I was diagnosed in January and confirmed in April I did not publicly announce my diagnosis until May. This was mainly because it was very overwhelming when people offered forty things to try to cure my ALS. Again, at the end of the day, I still find comfort in people educating themselves and asking about MY ALS.
Lastly, the question that always comes us is how they can help. My answer today is the same that it was 2.5 years ago:
Hug me as soon as you can and Love me through it
Join Team SunnyStrong:
7/5 ALS Awareness Night at the Rangers
9/16 MDA Muscle Walk at Globe Life Park
One thought on “May 21 – Diagnosis”
Beautifully written! Having lived with a neuromuscular disease my whole life it is absolutely necessary for us to learn all we can and let others help us as our types of diseases progress. I’m always grateful for the “down-time” inbetween the stages where I can find rest and enjoyment in my life before the next advancement. I pray for slow progression of these diseases for both of us!