Tag Archives: ALS

Love

It feels like the end is getting closer. Connected full time to morphine pump, but pain is still unrelenting, especially in shoulder. Breathing harder. All water and nutrition now through gravity bags — drip, drip, drip. Need assistance for every … Continue reading

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Now Comes the Pain

Up to now I have been fortunate that my symptoms have not included much pain – just occasional twinges. But over the last week or so the pain level has gone up dramatically, especially in my neck and back as … Continue reading

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Getting Organized

Lately I have been almost obsessed with getting organized. Cleaning off my desk and editing file drawers. Sorting my closet to give away suits that no longer fit – either my body or lifestyle. Cancelling credit cards we no longer … Continue reading

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Bah Humbug

  I find these days that my mind is racing far ahead of my body.   Objectively my condition has declined but not dramatically.  I can still walk, unassisted in the house and with a cane for short walks out.  I … Continue reading

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FALL

FALL Not the time of year, but the adventure of tumbling to the ground unceremoniously. Falling has become a new part of my daily struggle with ALS. Fortunately no really serious consequences so far – no broken bones, just a … Continue reading

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Thanksgiving

  Thanksgiving has always been one of the most important annual dates for our family.  Since Roz and I first celebrated with graduate school friends as newlyweds 47 years ago, the fourth Thursday in November has meant big gatherings of … Continue reading

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Discouragement

Feeling discouraged is pretty much a “normal” state of affairs for me these days.  Much of that discouragement arises from spending too much time looking back at what I used to be able to do before my ALS and projecting … Continue reading

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Laughter

I had the opportunity this week to attend a meeting sponsored by the local MDA chapter that featured a speaker on common ALS symptoms of speech loss, swallowing difficulties and other bulbar disasters.   Two other PALS (persons with ALS) were … Continue reading

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Control

ALS has meant learning to give up control of my body.  My arms and legs no longer respond smoothly as I attempt to control movement.  My mouth and throat muscles no longer respond to my desires to speak, chew or … Continue reading

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The ALS Walk

This past Sunday was the Washington DC ALS Walk – a major get together and fundraiser here in the nation’s capital. After a great deal of uncertainty about the walk’s location because the government shut down closed the Washington Monument … Continue reading

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