I ended July with a camping trip with dear friends at my favorite campsite in Northern California. I appreciated having the ability to climb up on the big rock and get to one of my happy places.
I went back to work Monday and it was the busy week before school starts and I noticed more difficulty talking, especially on the phone. Someone hung up on me because they couldn’t understand me. This was #whatwouldyougive week and I was fundraising so it was appropriate for me to be giving up my voice. I do not answer phones anymore, and won’t until I am well versed in text to speech. I also had to use my phone text to speech app to order at the grocery store deli this week.
All four of my siblings visited this week, starting with Sue from Houston on Tuesday. Then Catherine and her son Sam came from Portland, Oregon on Wednesday. I was lucky to be able to take Thursday and Friday off from work, thanks to my awesome coworkers who jumped in0 hi guys go on two of the busiest days. On Thursday Beth arrived from the SF Bay Area and Pete from Chicago, and my son Andy came home from Colorado. So there were lots of hugs, lots of shared memories, lots of stories.
At UCSF I was advised to be very conscious of swallowing every time I swallow. I have had a few scary aspirations since this all started, with water or food getting in the entrance to my lungs, and coughing quite a lot. We were sitting around at home before going to the big reunion dinner. I was relaxed sitting on the couch, leaning back enjoying myself when I aspirated water and it was the worst yet and very scary. I ran to the sink and coughed longer and harder than I had before and my eyes watered and my nose got very runny. My siblings got me a chair and Stan brought me a thicker drink, some Ensure. He is such a great husband that he even researched what flavor got the best online reviews and bought it for me. This was the first time I tried it. I had a few sips, which went down fine, and I brought the rest to the restaurant with me to drink instead of water. My voice was significantly worse after this event. My dad had picked up my son Andy at the airport so we were reunited at the restaurant. He had a hard time, thinking that my really bad sounding voice after the aspiration was how much the disease had progressed while he was out of town. We had a lovely dinner and great connection and love.
I have been very conscious of swallowing since then, but occasionally have problems. I do daily breathing therapy with my cough assist machine. It’s scary to think of aspirating when I can’t cough. Hopefully I will be very comfortable with the cough assist machine by then. Or have my feeding tube in place so I can ingest water through that instead of using my scary swallow. It is getting hard to swallow my pills too.
When my mom was sick with ALS my sister Catherine and my brother Pete still lived in Chicago and they did most of the nighttime care for her. Pete shared some memories of scary moments with my mom when she had ALS. There was one time with my brother working in downtown Chicago and calling my mom in Oak Park to check on her throughout the day. He wasn’t getting an answer on the phone so he left work, hopped on the El, then ran up Oak Park Avenue to her condo. She had fallen in the dining room, unable to reach the phone in her walker and crawled to the living room where she was able to reach a pillow and the TV remote and sit leaning against the couch. I can only imagine how scary that would be – having to wait until someone came to help you move.
We ended the busy week taking Andy’s Boy Scout Troop out to Blackrock Desert for a rocket launch event. It was a great opportunity to show some of my siblings another one of my favorite places.
We had more love and connection including a sibling walk in the dark with only the stars for light, but there were plenty of them visible and it was really quite awesome.
Then back to work for the first day of school which was crazy busy. And the second day too. By the third day things slowed down just a little and I was able to practice with my new assistive technology. More on that next post.
Another thing that isn’t scary but is potentially embarrassing and definitely yucky is that I can’t control my saliva at times and I drool like a St. Bernard. No photos necessary – I am sure you get the picture, or if not, check out this drooling St Bernard
Please consider contributing to my #whatwouldyougive campaign to fund ALS research #whatwouldyougive