Marianne Has ALS

I don’t think I have done a general status update in a while, so here it is:

• My legs have decided walking is overrated.
• My arms, in solidarity, no longer raise above my shoulder.
• My hands saw this and said “hold my beer…cause we no longer hold anything!!”
• Eating is tiring, but not difficult. Talking is both tiring and difficult. Breathing is fine.
• Either I have the world’s biggest brain, or my neck muscles are starting to go.

And that friends is the GOOD news…the bad – I no longer sleep through the night / pain levels are increasing. I’m worried the interrupted sleep / pain are signs that this is the beginning of the end…I’m more worried how the new changes will impact my relationships. An external catheter, long straw, and hoyer lift are all tools to help improve my quality of life…but all require a helper. My care is a full-time, physically demanding, and emotionally draining job…throw in sleep deprivation and its a recipe for burnout. We have family, friends, and caregivers helping several hours / day, and the help is a blessing……I’m still worried for Jacob (who is amazing).

Clinic is next week – I’m hoping they will have some solutions.

Speaking of hope, it’s getting harder to hope there will be a cure, reversal, or plateau…but life isn’t bad. Quite the opposite. I’m surrounded by love.