October 8, 2024

It was the end of a long day, and I was ready to wind down and head to bed.  My sister, who suffers from ALSP, and I were relaxing on the couch, finishing watching a familiar comedy.  Out of the corner of my eye, I saw her reach up and start rubbing her eyes.  “She must be really exhausted,” I thought to myself.  Out loud, I said, “When this show is finished, we’ll get you ready for bed.”  She didn’t respond.  She just kept rubbing her eyes.  So, I asked, “Are your eyes bothering you?”  No response.  

I decided she was tapped out for the day.  She gets tired easily, and words are more difficult for her to find when she’s worn out.  I turned off the tv, transferred her to her wheelchair, and started getting her ready for bed.  She was continuing to rub her eyes and not really respond to my quiet banter.  Suddenly, her head turned to the left and her entire body went rigid, board straight and unmoving.

Fear encompassed me.  Panic set it.  Frantic thoughts invaded as I was attempting to assess the situation.  Is she having a stroke?  Is she having a seizure?  What do I do first?  Move her?  Call 911?  Call a neighbor?

Thankfully, I had the wherewithal to call 911.  I gave the appropriate information and explained the situation.  As I was on the phone her condition continued to deteriorate.  Her breathing was becoming labored.  She was still rigid but had started shaking with tremors.  The EMS stayed with me on the phone, calming me, advising me on steps to take, and assuring me that help was on the way.

EMS arrived.  It was obvious to them that my sister was in need of immediate care, but they couldn’t easily move her.  It took multiple grown men to lift her tense and rigid body to a stretcher.  It was painful and frightening to watch.  They whisked her out of the house and advised me to follow the ambulance to the hospital, which I did.

Once I arrived at the hospital, I wasn’t allowed back with her.  They were attempting to get her stabilized and running test to determine what was happening.  Blood was taken.  MRIs were ordered.  And a whole other slew of tests were requested, most of which I didn’t understand.  Then came the waiting.  As every test came back in, the picture grew clearer.  It was ultimately determined that my sister had suffered a clonic-tonic seizure, formally known as a grand-mal seizure.  

Research and experience show us that seizures are common in ALSP patients due to structural change in the brain.  We also know that in ALSP, seizures are unpredictable and hard to control.  It’s a sobering and terrifying reality.  Watching someone you love endure a seizure is overwhelming, panic inducing, and heartbreaking.  

If and when your loved one suffers a seizure you will feel helpless.  You will feel scared.  You may panic.  You may feel paralyzed to act.  These responses will be similar with any recurring seizures as well.

After my sister’s first big seizure, she has endured what are known as focal seizures.  They are not as dramatic, but they are disturbing in their own way.  During the focal seizures she does not lose consciousness, but again, her head turns to the side, tremors wrack her body, limbs move uncontrollably.  Sometimes these seizures last a few minutes.  Other times they last for hours.  

As in all traumatic situations, you learn some coping mechanisms.  When I realized this was going to be a part of our ALSP journey, I put some action items in place to make it easier for me to deal with the unexpected seizures and to keep my sister as safe as possible when they hit.

First, I have an emergency file, complete with a summary of her medical history, her current list of medications, and her living will, stuck to the refrigerator for quick access.  If and when EMS is called, I can hand them the file and they will have a picture of her medical needs.

Also included in the emergency file is a Seizure Action Plan.  It is for my use and for the EMS.  It provides important information for me, including reminders on how to respond during a seizure – what steps to take, what information to record, etc.  It also provides necessary information to the EMTs.  It lists her medications and special instructions.

Secondly, I am obsessive about keeping her medication intake on a tight schedule.  Knowing that she always has the right medication in her system is a small comfort.  I know it won’t necessarily keep all seizures at bay, but it is something I can do that will help control what I can.  

Thirdly, I keep her emergency medication on hand at all times.  When I see a seizure is beginning, I know how to act quickly in hopes of stopping it from worsening.   I have made sure her daily caregivers know how to administer it, too.

Finally, I attempt to stay on top of and prevent any potential triggers.  Common triggers include dehydration, fatigue, alcohol use, missed medications, flashing lights, other illnesses or infections, and excess stress.  I control the triggers that I can, knowing that even if these are controlled, seizures are still possible.

Seizures are just one of the disturbing symptoms of ALSP.  With proper planning you can mitigate some of the feelings of helplessness and fear.  In the midst of a seizure, remember: try to stay calm, speak soothingly to your loved one, follow the action plan, call EMS, and know that you are doing everything in your power to give your loved one the best care.