One on One with Sara Bennett, Diagnosed with ALS at Age 36
LahSET is fortunate to have had the opportunity to ask Sara some questions and learn more about ALS. We hope that this interview is informative, raises awareness, and encourages everyone to help one another.
When did your symptoms start?
March 2022, I had pinch and grip strength issues in my right/dominant hand.
What were your initial symptoms and how have they progressed?
As a high school educator, I first noticed having difficulties pinching binder clips.
I also had trouble picking up my right foot - it felt like it was rolling over flip flops. There were issues with balance, and I was experiencing a ton of fatigue - more than just a tired, working mom fatigue. I felt like I could collapse at any time and was extremely exhausted. My symptoms continue to progress…there are days when I realize I can no longer do a task I could do the day before - like spray my dry shampoo in my hair or put my hair up in a bun.
What are your current symptoms?
I have almost every single symptom aside from issues related to swallowing and breathing. I have muscle weakness and atrophy in both legs and arms, shoulders and trunk. My right hand is mostly paralyzed. I have a lot of spasticity and tremors and fasciculations along with extremely stiff muscles, muscle spasms and hyper-reflexia (over reactive reflexes). When I’m tired, my speech gets slurred and quiet, especially if I feel like I’m running out of air. I have a ton of difficulty falling and staying asleep.
Describe your healthcare journey that led to a diagnosis:
When I was having issues with my hand, I thought I had a pinched nerve. I couldnt get into neurologist for 2 months. When I finally did, I saw a PA at Ohio State who said this is definitely a neurological issue. From there I had 100s of tests to rule things in or out, blood draws, MRIs, EMGs, and lumbar punctures. I saw multiple neuro muscular and neuro inflammatory specialists and first heard the words motor neuron disease in August of 2022. However, I was told I do NOT have ALS 2 different times, but unfortunately with the nature of this disease, it usually takes over a year to be diagnosed because physicians have to see progressive degeneration. I ended up having cervical spinal surgery (acdf) in October 2022 hoping to alleviate symptoms. However, I continued to get worse and in March of 2023, I was finally diagnosed at University of Cincinnati with ALS
How would you describe your emotions when you were diagnosed?
I was absolutely devastated, but I also felt relief because we finally had an answer for why I was getting worse. This allowed me to plan, communicate and take proper steps for my family.
In your opinion, what could be improved upon in the healthcare system?
The cost of everything is crippling. The time between appointments to see specialists is torturous. Neurologists (certainly not all, but many I saw) seem to have a lot of brain, but less heart. My Doctor at UC (Dr. Neel) is an angel and I feel lucky to have him on my team.
How has your everyday life changed since being diagnosed with ALS? How has family life been impacted?
My every day life is completely upside down. The only thing that remains the same is the love and support that I have, and give to family and friends. I would say the biggest change is just my loss of independence - I basically need an extra set of hands wherever I go, especially with my kids which makes me feel like I have a chaperone, but it’s totally necessary for me to continue attending events, and being a part of their lives.
Do you get any financial help for adaptive tools? Does insurance cover them?
The ALS Association in Columbus, OH will reimburse up to $2k per year for adaptive tools for people like me. Insurance covers none of this stuff, (except my big wheelchair). I made an adaptive wishlist on Amazon and my family and friends have helped meet some of these needs. However, it should not be this way.
While experiencing daily symptoms, how do you strive to keep joy and hope in your life?
You’re catching me at a hard time to ask a question like this, because the FDA advisory committee just voted down a drug called Nurown in September 2023 that I was absolutely betting on to help me plateau. I would say joy is easier than hope. I try to still laugh and stay focused on being present, it’s really hard when your function is so impacted it has infiltrated all the parts of my life, but I don’t think I have any other choice but to focus on the good and on the present.
How has your mental health been after being diagnosed with ALS?
Well I never had depression before this, however while going through the diagnostic process and losing so much including my job, my function, and independence, it was clear I was experiencing depression. I mean - this is depressing shit; this would make anyone depressed. I was already medicated for anxiety and was in therapy, but since then I’ve had to go on additional medication to help with mood. You can’t drug yourself and to not being aware of what’s going on here though, it’s not a magic pill. I try to make a routine for myself including being outdoors, connecting with people (even if it’s hard for me) and re-watching shows that I’ve already seen in binge doses.
What are you hopeful for in the next year?
Ideally, I’d like the FDA to approve Nurown for emergency purposes, even though the advisory committee voted against it. I hope that they can listen to the human stories and rethink the broken system that we are “scored by” and trials, and in life with this disease. I am hopeful for continued research that coincides with support from lawmakers and the medical community.
What is the best way for someone to help you or anyone else who has been diagnosed with a chronic or life-threatening illness?
Don’t ask, “how can I help”, instead, just do. Drop off a meal, return my Amazon orders, take my dog for a walk, hang out with my kids. I think the most helpful thing that people have done is to be persistent and consistent. Sometimes I don’t have the energy or emotional wherewithal to talk on the phone, but I can text. If I don’t answer your call, follow up with a text! Sometimes I need to lay down for two days in my bed and I will communicate with you later lol - I appreciate the understanding and patience that people have shown me. I also love when people can do things for my kids, trying to keep life as normal as possible is huge - whether you take them to the trampoline park or to putt putt, but just that special time developing those relationships matters to me.
Something that’s helpful is perspective taking. I think trying to sit for a minute in my shoes and thinking about what I’m not able to do and taking the initiative to go ahead and do that for me. It sounds funny, but bringing me a drink with a straw or unwrapping my uncrustable goes a long way as my mobility and functionality declines.
If you could say one thing to encourage others who have been diagnosed with ALS, what would you say?
I don’t know about encourage…there are very few diseases like this that are a known death sentence in the way that ALS is. There’s a level of inevitability that makes me pause when I think about being “encouraging“. I’ve heard people say, “just focus on the things that you can do and be grateful”, but it’s hard when you’re losing so much every day. The most helpful advice I was given was to join a support group of young women who have been diagnosed, and that is what I have continued to tell other people who are in my position messaging me on Instagram or through text. Find people like you and latch on. This is not a typical diagnosis, and it’s important to recognize that.
Is there anything else you'd like for people to know about you or ALS?
Yes, ALS is not just an older male disease - there are lots of misconceptions about this and I want to encourage people to ask questions, continue to learn, lean into the hard stuff. No question is off limits! I think people tend to avoid, and I’d rather people not ignore the elephant in the room that is my reality.