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I am Elizabeth Gage

living with ALS

Washington


I’m sad, scared, and angry. I’m sure I’m not telling you anything you don’t already know. I think the anger was slow to develop, because in the beginning I had the fantasy that if was a good sport about the changes, I could keep the worst of the ravages at bay.

I am a person living with ALS. But I have another chronic disease: myelodysplastic syndrome. There are many varieties. The one I have causes anemia. We manage it with monthly shots of a blood booster. Typically it will eventually get worse, necessitating transfusions and possibly a bone marrow transplant. Then it kills you.

So I figured my future was pretty well mapped out.

Then in February of 2021 I noticed my speech was slurred. My PCP sent me to a neurologist and we started testing, chasing myasthenia gravis for awhile.

By May I was telling people that something funny was going on with my speech.

On July 4th I fell and hit my head and got 6 stitches.

In August I started using trekking poles to stabilize my walking.

In September I retired, because I could no longer answer the phone intelligibly.

In November I started using a walker.

In December I was diagnosed with PLS, supposedly a slower-progressing variant of ALS, but my symptoms (weakness, spasticity, slurred speech) have been lurching forward, sometimes apparent from one day to the next. Only the pseudobulbar affect, laughing, which was boosting my morale, has diminished.

I live alone so I’m about to move to an assisted living facility because I can no longer cook or clean or do laundry.

My sisters have been wonderful, driving me to appointments and errands.

I’m tired all the time, so I don’t enjoy the errands.

I’m sad, scared, and angry. I’m sure I’m not telling you anything you don’t already know. I think the anger was slow to develop, because in the beginning I had the fantasy that if was a good sport about the changes, I could keep the worst of the ravages at bay.

I guess the anger is good, because I’m newly ready to fight.

Thank you for the opportunity to tell my story.


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