ALS is a relentless disease - but there are times when things stay stable. This week was calm and quiet, with no new symptoms or indications of decline. Jeremy is pretty accepting of his “new normal” and he spent quite a bit of time today watching football with the whole family.
Yay for calm and normalcy and football! The little things absolutely matter.
My husband and I just returned from a week-long cruise in the Caribbean. It was lovely and sunny and decadent, as might be expected. Our son flew to Dallas to help with Jeremy, which was a blessing on many different fronts. He and Jess were not the best of friends when they were little. But it’s amazing to see them as adults supporting and loving each other. They are accomplished, high-achieving, compassionate people and I’m just a little proud of them.
Sometimes ALS progresses slowly - and sometimes a week can make a big difference. Jeremy lost 4 pounds while we were gone. He admitted that eating is difficult and tube feeding is easier. He went to work one final time, knowing that his boss had packed up his desk. He looks, more and more, like someone who is seriously ill.
Over the last couple of days, it quickly became apparent that lurching down the hallway was not going to be sustainable. The hospice nurse ...