Terminal illness is terrible.  Not only for the morbidly obvious reason, but the route there is riddled with unpleasantness when you’re inflicted with an illness like ALS.

If you’re not familiar with ALS, please read my other post ALS Sucks.

ALS takes over any and all voluntary motor abilities the patient has.  Therefore, as the illness progresses and abilities are lost, they are in need of tools to help.  Anyone with ALS should have a referral for an occupational therapist as well as a physical therapist.  These professionals can help teach how to adapt to life with ALS.  Much of their suggestions include tools to use in the home.

As my mom progresses there are always new tools (known as orthotic devices) coming into the house to help her.  Often once we have a new device for her we wonder why we didn’t have it sooner or even know about it to have on hand when the time came.  That’s why I created this post.  Hopefully it has some helpful suggestions you may not have thought of that can help if you or someone you love is in need:

Utensil Handle Grips–for when the strength to hold fine items such as forks and pens is lost

More Utensil Handles.–pictured with the pencil above

Shower Chair–using these will preserve their strength instead of using it up standing in the shower

Shower Handle

Raised Toilet Seat–getting up from a seated position can become quite the challenge, so don’t overlook the most important seat in the house to give them help in getting up.  The several extra inches helps give their bottom a much needed boost.

Bath Tub Chair Seat Lift

Swivel Seat Cushion–most useful for the car

Car Handle Bar–this tool amazed me the most, it is universal and I think they could be helpful for children getting in and out oif the car as well

Bedside Commode

Electric Toothbrush–much easier to hold and let it do all the work instead of trying to do the brushing motions

Lap Desk

Faucet Extender

Wash Tray

Furniture Sliders–my Dad was rather impressed with himself when he thought to use these for my mom’s chair at the kitchen table.  It takes the effort out of sliding her in and out from the table.

Carpet Protector–Probably the most unusual product on this list, but important because while bladder muscles are not affected by ALS, the time it takes to get to the bathroom is, so accidents may happen.  This will allow for easy cleanup; you know what they say, better safe than sorry.  My husband thought of this and lined the bedroom and pathways to the bathroom with it.  My mom even says it was easier for her walker to glide over it so that was a bonus!

Walker

Walker Glide Skis–reduced friction from those darn rubber stopper things they come with

Wheelchair

Wheelchair Seat Cushion–if they spend enough time in the seat, make it comfortable at least

Hand Splint

Drinking Cup with straw and grip–the rubber grip is easier to hold than the usual slick side of a cup

The #1 thing my mom uses more than anything is her lift chair.  She has a Zero Gravity Lift Chair from the Relax The Back store.  It comes with a hefty price tag, but my Aunt was able to find it for her at a super deal.  The functions of it help her to stand and the zero gravity feature relieves the pressure on her tailbone allowing more comfort at the touch of a button.

Terminal illness is terrible.  Sometimes dealing with the endless doctor appointments and insurance policies can be just as terrible too.  For more support I encourage you, pALS* and their caretakers alike to seek local support.  The ALS foundation has chapters everywhere offering support groups and other helpful resources.

Lou Gehrig brought a grace to this sad disease that has made him a legend beyond the baseball diamond.  He considered himself, “The luckiest man on the face of the earth [who] may have had a bad break, but…[has] an awful lot to live for.”**  With the right tools, information and helping hands for the pALS out there, perhaps they can adopt his pleasantly timeless optimism as well.

If there are any other tools and tricks you know post below, sometimes the best suggestions are from one another.

Thank you, and cheers to your health.

 

*pALS=Patients of Amyotrophic Lateral Sclerosis

**Lou Gehrig in his iconic speech July 4, 1939