#7 My ALS Journey—Getting Up and Moving Over

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“Crying is all right in its way while it lasts. But you have to stop sooner or later, and then you still have to decide what to do.”― C.S. Lewis, The Silver Chair

When I was a child and feeling low, my mother would tell me I could go into my room, feel sorry for myself for 10 minutes, then come out and move along. When I was mildly sick, she would say, “Well, you won’t get any better staying home!”

My mother was proactive in living with ALS. She tried hard to imagine the next hard thing and plan for it beforehand. All her energy went into showing up for her own party or getting my dad to his.

My mom might ask you, “What’s keeping you from your party today, and what are you going to do about it?”

–Tricia

Where to sit? This is the question of the week/day/hour/minute. Will I be able to get up? It is getting more difficult to turn over in bed or get up from a chair. The strength in my legs is slowly diminishing. This past week I had to give up using my walker and now fully rely on my “Go Chair.” This causes some mixed feelings since it means giving up a major source of independence, walking. However, using the scooter does provide some freedom that the walker did not. Since I don’t get as tired as I did with the walker, I am not as hesitant to get up and move. I can travel with ease around my house or, most important, all over the mall. Shoppers, watch out. Here I come. Whether with the walker or the scooter, I have to count the cost, preserve my energy, and realize each step in life is precious.

Today, I need to concentrate on safely getting on and off the scooter, in and out of the shower, and in and out of bed, all of which take leg strength. I wonder how long I can do those things without assistance. Speaking of assistance, another new step this week: yesterday, I interviewed two different In-Home Care agencies that provide home care services. Having someone help me with the morning routine of showering and dressing will be a great relief for both Cliff and me. He loves his morning coffee with his buddies and can continue that ritual without worrying about me.

Another blessing today was we had a taller toilet put in our bathroom (is that too much information). Again, it is about counting the cost, preserving energy, and the preciousness of life.

I am very thankful for every day, every step, and every relationship; each day brings new challenges, and when I keep my senses alert and don’t let myself get bogged down with the negatives, I find new joys.

God is good.

–Susan

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