Marianne Has ALS

Note: This post is inspired by (and in part draws from) the book ALS Saved My Life Until It Didn’t by Dr. Jenni Kleinman Berebitsky

People are very curious to know how my ALS started and how it’s currently going. I don’t mind these conversations – it’s always a benefit to try and understand how another person is feeling. But talking doesn’t really convey what ALS feels like. So, to help you understand how my body feels, how my emotions are impacted…I encourage you to try a few of the exercises below:

Body

• Attach a 15 pound weight to your left leg only. Go for a walk.
• Put a resistance band around your chest / arms. Pull the band to your elbows. Hang up your clothes in the closet.
• Fold your fingers down on your left or right hand (both if you’re feeling lucky), wrap a a few rubber bands around your fingers so that they are bound to your palm. Now drink a mug of tea.
• Wear thick winter gloves while completing a puzzle.
• Wrap duck tape, or rope, or resistance bands around yourself so that your arms are pinned down. Roll over in bed.

Emotions (Shame, Guilt, Sadness)

• Have a loved one shower you while you sit on a shower chair. Don’t move.
• Have a loved one wipe your bum while you brace against the wall so you won’t fall down. Do this in a public restroom.
• Use a cane, walker, or wheelchair in public.
• Put those winter gloves back on. Respond to a group text. Try to keep your comments relevant to the ongoing conversation.

The above gives you a feel for where I am at the moment. It’s not all doom and gloom. Having a loved one care for you is bittersweet. I’m lucky to have a husband who infuses humor into all of the hard stuff. I’m blessed with amazing friends, extended family, and Jacob’s family – all of whom help out, love me, and take care of me.