Howard Rehs

My journey with ALS

September – 3rd Week

On Saturday, I woke up a bit late, and Alex took me to the kitchen for breakfast. Then I went to the living room and spent a good deal of time. I had lunch there, and around 5:30, Alex took me downstairs for a long shower. We returned to the living room, and I fell asleep. I woke up around 8:00 and went to the kitchen. I had a steak (mixed), ice cream, and RSO, brushed my teeth, and then went to bed.

Sunday was also a bit late, but Alex got me to the kitchen, and Amy took care of the food and drugs. Then I went downstairs for a fast shower, got dressed, and went to the living room to wait for the grandkids to arrive. Before they showed up, a new table for the kitchen arrived. Amy and Alex put it together, removed the old glass table, and installed the new one. By 3:40, they were here. It was great to have them here. Amy ordered dinner, and it showed up about 5:30 (Italian food). I sat in the kitchen, and Alyssa, Adam, Teddy, Benny, Amy, and Alex were in the dining room. After the little ones had a bath, they went home. I had the ice cream and RSO, then went to bed.

Monday was an early day. First, I had to take the Radicava. Then I had to get up because the guys were coming in to do the bathroom remodeling, so I went to the living room for about one hour. After, I went to the kitchen for my breakfast and all the drugs, Alex helped me. After working at the office until 12:00, Alex took me downstairs for a shower, got me dressed, and we headed to the physical therapy place. When we were done, we headed home. A little later, Amy found that the car had damage. It appears that someone in the parking lot hit our car – bastered! Amy went back to the lot to check for cameras, but couldn’t see any. At 7:00, Helaina showed up with Italian food, and she, Amy, and Alex had dinner in the dining room. I was in the kitchen. Once I finished, we took me to the bedroom and I relaxed. I ended up going to sleep around 11:00.

On Tuesday, I woke up around 8:20, took the Radicava, and then headed to the office since the guys were coming to work on the bathroom. A little while later, I went to the kitchen and had my breakfast. Took a shower with help from Alex, got dressed, and went upstairs. Ended up going to the bathroom and then to the office. Amy and Alex left with both cars. Our Jeep was going to get a transfer seat, and Kathy showed up here to clean the house and to help me. Amy was going to the place where it was going to be installed, and Alex was first going to his mom’s house. They returned around 3:00 and showed me a few scooters available from the company installing the new chair for the Jeep. Later, we had dinner, and then I went to sleep.

My life is getting more difficult. My right arm can barely touch my head, and the left arm is a bit better. Standing is a serious problem; thankfully, Alex helps me. I continue to bite the inside of my mouth, and it bleeds. My left leg, left neck, and right shoulder are at times painful. Getting in the car isn’t good, so the new chair should make it better. I am coughing more now.

Wednesday was again an early time. First, I took the Radicava (Amy has helped every day). After I took a shower downstairs, had breakfast, and the guys showed up to , Alex and I headed to the city around 11:50 for my 1:00 meeting with Dr. Chio (arrived in under an hour). When we arrived, Lance was there to help me. We spent about 2 hours at the hospital (they tried to give me a breathing test, but I was not able to do it). It then took them about 30 minutes to bring the car. After that, Lance went back to the gallery, and we headed home — it took about 90 minutes. Along the way, Alex wanted to stop by McDonald’s and got me two cheeseburgers for Amy to mix, which we had for dinner; they were good. Then I had some ice cream, RSO, brushed my teeth (which is getting difficult), got to the bathroom, and then to bed. Alex left for the evening.

On Thursday, Amy got me up, massaged my legs (something she does most days), and waited for Alex to show up, about 8:30. We got up, went to the shower, he cut my nails, got dressed, and then went to the kitchen. The guys renovating the bathroom also showed up at 8:30. After I had breakfast, I went to the main bathroom (it was successful) and then to the office to work. About 2:00, Alex brought me my lunch, and at 3:00, Bill, from a physical therapy clinic, showed up. At about 3:20, Amy left with David and Randi Rosen to get the Jeep with the new lifting chair. After Bill left, I went back to my office, and at 5:50, Alex went to the physical therapist. Amy got back around 6:30 with the car (I haven’t seen it yet), and Alex showed up before 7:00. We had dinner (drugs, etc.), brushed my teeth (which is getting more difficult), and went to bed.

Friday, I woke up at 8:30 (the guys were working on the bathroom), went to the main bathroom (had success), and then headed downstairs for a shower – Alex is amazing! He got me dressed, and went upstairs where Amy did my drugs and shakes. Then I headed to my office and got to work. Around 1:20, the guys came into my office with the new sink to figure out the right height, then Amy & Alex left. Kathy showed up a short while later, and Amy and Alex returned about 3:30. Then Amy put my B12 in my arms and by 5:00 the left.

Responses

  1. Stu and mary Avatar
    Stu and mary

    you are an inspiration for me!

    Like

    1. Howard L. Rehs Avatar

      thanks, and you are one best artists

      Like

  2. xiliary twil Avatar
    xiliary twil

    Howard, yes you truly are an inspiration. Thank you for your bold gesture in sharing your path will all of us. Your new bathroom. Amazing. So simple yet elegant. Enjoy the ease and beauty. I admire your attitude and fortitude. Keep it up. We are all thinking of you!!!! Warmly, xiliary twil

    Like

    1. Howard L. Rehs Avatar

      That is so kind of you. Wish I could get to California to see you.

      Like

  3. computersoftly7f1f30c294 Avatar
    computersoftly7f1f30c294

    Thinking of you & admire you for your strength and resilience ❣️

    Like

    1. Howard L. Rehs Avatar

      Very kind of you!

      Like

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Howard Rehs