Howard Rehs

My journey with ALS

April 2025 – 1st Week

I’ve been having more issues with swallowing, and my speaking is basically gone. So strange that I can think of what I want to say but cannot say it. I must stop eating certain foods. Anything that breaks up while chewing can cause a problem.

On Tuesday, we went to Columbia for a blood and skin biopsy. The people there were great, and it was an easy procedure. Then Dr. Andrews met with us … I am telling you all doctors should be like her. She spent a good hour going over things I should consider. First, because I am still laughing (Neudextra has not really helped), she suggested taking a third pill each day. I started that on April 2nd. She then discussed that I consider having a feeding tube. Her feelings are that it will make it much easier to keep my weight up. What? Keep my weight up? I want to get rid of the big belly I now have due to this medical issue (muscle issue).  What I need to keep in mind is that if my breathing gets very difficult, there will be no way that the hospital can insert a feeding tube. The procedure is outpatient, but recovery will take 7-10 days. Since we will be participating in The Philadelphia Show at the end of April, I told her we will discuss it further in May. I also have another EMG test in May to see my muscle strength; I need that done first.

Skin Biopsy
Skin Biopsy

On Wednesday, things were good. There were not too many issues with eating, etc. That afternoon, Amy & I had a Zoom call with Debra Zeitlin from Bridging Voice. Debra was so nice, and she set me up with ElevenLabs (Generative Voice AI — Generate lifelike spoken audio with AI tools).

Thursday has been a reasonable day (a little coughing and choking, but not too bad) … started at 5:45 am with the drugs and working out. Amy & I got to the gallery around 10:30, and I was hard at work.

On Friday I started my day at 5:15 am (was hoping to leave in time to make the upper roadway of the 59th street bridge … made it by 4 minutes!). Looking forward to the weekend since I do not have to take the Radicava, so I get to sleep a little later!

Had to add one thing that showed in the afternoon My Boogie Board – http://www.myboogieboard.com. Allows you to write and then you push the button on top and it erases all the text!

My Boogie Board
My Boogie Board

Wishing everyone a relaxing weekend.

Responses

  1. frankimbur Avatar
    frankimbur

    Stay strong, Howard.

    Like you have a choice!!!

    Like

    1. Howard L. Rehs Avatar

      Will do my best!

      Like

  2. anthony42guide Avatar

    We’re thinking of you often and will be following this blog religiously. Much love from your friends and colleagues here in PA!

    Like

    1. Howard L. Rehs Avatar

      Greatly appreciated … and thanks for the LOVE!

      Like

  3. Gail Descoeurs Avatar

    You are strong and your strength is very admirable.
    Always in our thoughts and prayers. 🙏🏻🙏🏻

    Like

    1. Howard L. Rehs Avatar

      I am trying to keep it going. Thank you very much.

      Like

  4. Anna Kutishcheva Avatar
    Anna Kutishcheva

    Love and healing, Howard.

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    1. Howard L. Rehs Avatar

      Thank you Anna

      Like

  5. Gerald Eskilsen Avatar

    Like

  6. Linda Stafford Avatar
    Linda Stafford

    stay strong! You and your family are in our prayers!

    Like

    1. Howard L. Rehs Avatar

      Linda … thank you.

      Like

  7. MarkDalyArt Avatar
    MarkDalyArt

    Glad you have Dr. Andrews. We continue to pray for healing and strength.

    Like

    1. Howard L. Rehs Avatar

      Mark … thanks!

      Like

  8. delicious8dd9c89769 Avatar
    delicious8dd9c89769

    Keep going strong my friend! I’m appreciative to be able to follow this blog and your journey.

    Ken

    Like

    1. Howard L. Rehs Avatar

      Ken … I will do my best!

      Like

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Howard Rehs