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The day after Thanksgiving the year before my mom was diagnosed, we were shopping for Christmas trees. As a side note, she said to me, “By the way, if I die today, tell the doctor I had a floppy foot!” And we laughed.
I wish I hadn’t.
–Tricia
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My legs are not weight-bearing legs, I am not earthquake approved, and a county inspector will probably not sign me off. In October 2010, my ALS symptoms first appeared with a slight drop foot, now, I can no longer walk and completely rely on wheels to get me from point A to point B.
I am thankful I can still stand and transition with great caution from one seat to another (is that too much information?). There is always the question, is my ALS progressing fast or slow? Nobody knows. Each person’s disease works differently. I am very thankful I have upper body strength (yea, for grab bars), my diaphragm looks great, I can breathe and swallow, and best of all, I can still talk, just in case you need my advice.
Cliff is most likely having a more difficult time than I am. He desperately wants to protect, care for, and comfort me. When you call and ask Cliff how I am, I can hear him tell you I am doing well because I have asked him to give positive reports. Poor guy, I am sure I cause him much frustration and grief. Call him when you don’t think I am around. He will probably be more honest. Oops, small problem, I am always around.
On a Positive Note…
We both enjoy and appreciate your care, concern, and positive words. One of the reasons we have a personal caregiver for me is for Cliff’s sanity as much as it is for mine: he can leave me at home and not worry about me as he continues having breakfasts and coffee times with good friends.
There are some good things happening: Anna, my personal caregiver, is awesome; my new wheelchair has been ordered, and new ramps are coming so I can get into my backyard. Accessing my backyard is the best, especially since the days are getting longer, and summer is almost here. Come and sit with us in the backyard and enjoy a glass of iced tea. Cliff will fix it.
–Susan
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