Life With ALS: Reality Check

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ALS Awareness Month Day 28: Reality Check Warning - This is a challenging post to write as Linda and I try to put a positive face on everything. Linda didn’t want to share this at all   This isn’t easy or pretty. There’s a fine line between positivity and sugarcoating. This is the reality of ALS for us and other ALS families everywhere  

About 3 months ago, we were faced with the reality that trying to transfer to our downstairs toilet, which was always more dangerous for both of us than we’d admit, was now impossible. Another “new normal” was staring us, unflinchingly in the face.

Because I’m tube fed and my formula is Liquid Hope, a vegan, organic  real food formula, my bathroom visits are at least daily - so we had no time to waste coming up with an alternative. Linda is nothing if not resourceful. It took her minutes to to say “Let’s try this.” And we have - for three months.

The Dining Room where we’ve shared family holidays from Thanksgiving to Christmas and birthdays has become a catch all for over 11 years of insurance paperwork and foundation displays. The room that holds so many memories for our family, the table where our boys left Christmas cookies for Santa, has become what you see pictured below.

The routine: When the need arises, Linda preps the commode chair and wheels it into the Dining Room. She then puts on my AFO’s (leg braces) so I can stand.  I roll into the Dining Room, position my wheelchair facing the side of the staircase. Using the stair balusters as hand grips to lift myself to standing (with help from Linda). I stand,, Linda moves my power chair to one side, grabs the commode chair and rolls it in back of me, locks the wheels and I sit. After clean up, the process reverses. Obviously there is a lot more unsavory  clean up since we don’t just flush the toilet. That’s more on Linda and I’ll leave that to your imagination.. Don’t know how she does it - even though I see it every day.

I’ve said and written many times before, that ALS is a humbling disease. It’s humbling for the patient who, because of ever diminishing motor skills is able to do  less for themselves almost daily. But it’s humbling for the all  too often forgotten caregiver too.  Without getting too graphic,  think about what Linda needs to do clean me. Humbling for her. And for me, while I detest the continued loss of control, it reinforces to me the strength and the love she shows me – Every.   Single. Day. Powerful stuff, not for the faint of heart or the weak of spirit.

If you have relatives, friends, co-workers or even “church friends” you only see on Sundays with ALS, don’t be fooled by their smiles. And don’t be put off if they’re NOT smiling. Life with ALS is a daily reality check.

Want to help us help other Maine ALS families? Go to hope-jg.org& and consider making a one time gift or joining our growing family of Monthly giving partners.