ALS Clinic: April

 Another clinic in the books. What a great team. Bottom line, steady state, no perceived decline. All good news! Pretty tiring .More tomorrow.

So, about yesterday. The research study I’m participating in asked I arrive early to my appointment to contribute bodily fluids. Yesterday was a beautiful sunny day and late morning traffic wasn’t too bad. Approaching the hospital always has heavy traffic of every sort; cars, bicycles, pedestrians, and now construction trucks and workers. A real mess. Ingrid did a fine job getting through it all.

The clinic was as usual. Everyone seemed a bit more cheerful and upbeat with the bright sunshine and greening of the landscape. All specialists reported no decline in my functionality and were encouraging. Each had suggestions for continuing to maintain.

The neutronist and respiratory people were pleased that I was losing weight at a slow rate but were concerned about my nausea and lack of eating. They encouraged me to contact my primary doctor to discuss medication dosage. In process today.

The physical therapist was very pleased with my upper body strength and encouraged me to continue with a physical trainer. First meeting was today, first session tomorrow.

Then came the big summary and wrap up with my favorite neurologist. Same news; all pretty steady. Concerning the feeding tube surgery, he would prefer it be asap before anything deteriorates. He’s writing a note to the surgeon so requesting. See what response this generate. Amazing all the specialists and their movements as a team. I told him I was feeling quite well and even thinking of my condition as a handicap rather than a nasty progressive disease. He smiled, tapped his head, and said that kind of attitude was very important and contributed to my status.

Monday we leave for our happy place up at the lake. Aides are arranged and dock scheduled for installation!

Comments

  1. Eric SendelbachMay 1, 2025 at 9:31 AM

    Great news! Steady state is what we're all hoping for!

    ReplyDelete
  2. Sara HarwoodMay 1, 2025 at 6:08 PM

    Couldn’t really ask for a better clinic visit than that. Great news all around. Keep doing all the things you’re doing Dad, you continue to control the controllable and focus on that!

    ReplyDelete

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