June 3, 2024

Imagine, if you will, a 40-year-old man who has spent the day hiking and rock climbing.  He is covered in sweat.  His muscles are sore, but in that refreshing way from having used them well.  He’s tired from a long day of physical exertion, and he is looking forward to taking a shower, getting something good to eat, and sitting down.  He walks through the door, and his foot catches on the door mat.  Down he goes, landing with a thud in his doorway.  He’s a bit dazed, but otherwise he seems unhurt.  He gets up, wondering briefly why he tripped over the mat that has been there for years, shrugs it off as being overly tired, and goes about his night.

The next day, as he is walking down the few steps into the garage, he loses his balance and as he is falling he frantically reaches out for something to grab onto.  Without anything to stabilize him, he finds himself on the floor for the second time in two days.

During the next months, he continues to struggle with motor disturbances.  At first he tries to write off the symptoms, attributing them to being overly tired, bad luck, or general clumsiness.  But as the symptoms worsen he can no longer deny that something is wrong, and to make matters worse his family has noticed changes in his walking and coordination.  He finally decides to go to the doctor, and his whole life changes in an instant when the doctor tells him, “You’ve got a neurological disease.”  What follows is a complete disruption to his life and to the lives of his family members as they step in to help him cope with his worsening symptoms and loss of independence.

Perhaps this story feels familiar to you.  Whether you have experienced this scenario yourself or as a participant walking alongside your loved one, you know the vast life changes that must follow such a diagnosis.  

June is National Safety Month, and if you’re reading this, you know that ALPS symptoms pose a real threat to the safety of the one suffering with ALSP.  Sisters’ Hope Foundation has created and curated safety resources that we will be sharing throughout the month of June that we hope you find helpful as you navigate the ups and downs of ALSP.

In many patients just like the man described in the story, motor disturbances such as gait changes, poor coordination, and tremors can make simple, everyday tasks fraught with peril.  Take for example that unassuming, beautiful, decorative rug that adorns the living room floor.  For years it has tied the room decor together and brought a splash of color and character to the living room.  But now, when you look at it, you can only see danger.  It is now the possible instigator of an in home fall.  Your loved one, who is struggling to walk and to lift their feet, could easily catch a shoe or a toe on the rug and hit the ground.  The rug must go.

Other ALSP patients suffer from cognitive and behavioral changes that leave them with poor judgment and decision making skills, forgetfulness, confusion, apathy, and lack of self-awareness.  These symptoms pose their own set of safety concerns.  Will they wander away?  Will they leave the stove on inadvertently?  Will they give out private information to a scam website or caller?  Can they call for help in an emergency?

There are other obvious and less obvious changes that need to be made to a home in which a person with a neurological illness lives.  In some ways it’s almost like having a young child in the house again.  You have to be hyper aware of any possible danger and work to eliminate any hazardous situations.

This can be an overwhelming task because every room, every object, every scenario must be looked at with a critical eye.  Things often get overlooked or, even more commonly, ignored because all the other tasks and concerns of caregiving take up all the mental energy that can be spared.

There are resources readily available online that give complete lists of safety concerns in the home and suggestions on how to make the home safer.  One that Sisters’ Hope likes and would recommend is from Home Instead.  Find it here: Home Safety and Security