Marianne Has ALS

Recently a few people have asked me if I can tell a difference in progression on a daily, weekly, or monthly basis. The answer to all three is…yeah, I can.

Daily: I don’t notice a difference in my body on a daily basis. I do notice a significant change in my energy levels on a daily basis. Some days are great, I work, pick up a bit around the house, have some quality kid time. Some days are less great, I require one or more naps and all my energy is used taking a shower, working, and having an hour of kid time before bed. Also – I’m slower, just everything is slower.

Weekly / Monthly: I do notice changes to my body on a weekly / monthly basis. Usually I notice that I can no longer do a thing. At first I couldn’t do jazz hands with my left hand (yes, I regurarly would do jazz hands – just accept it). A few weeks later I could no longer put my hair in a pony tail (I MISS THIS SO MUCH). Next, buttons – a thing of the past. All of these changes happened slowly over months.

Since my diagnosis – socks and bras are the enemy. My amazing hubby has to help with socks, most days I just don’t wear a bra….not a bad thing but, it’s weird. Sometimes he helps me get dressed, usually with pants. My favorite thermal mugs are super heavy, I can use them but I can see the day when I cannot on the horizon.

My life is a series of slow but steady declines. Right now I am like a very arthritic 80 year old…so, plus side, even though I’m only 42…I still get to experience all phases of life!