Howard Rehs

My journey with ALS

October – 1st Week

On Saturday, Alex arrived a little late, so I went to the bathroom around 11:30 and then showered with Amy. Afterward, I got dressed with Alex. Then I went to the kitchen for breakfast. After I went to the office to do some work, Alex took me to the bathroom around 2:40. Once I was finished, they drove me to Resorts World New York City, a casino. When we arrived, Lance and Chloe arrived, and we went in. We spent about 90 minutes, and I lost. Thankfully, Lance and Alex were successful. We got home, had dinner, and then I went to bed.

Sunday was an early one. Amy had to get her hair done, so she got up around 8:30 and showered. After she got dressed, Alex came in to help me get ready for the shower, and Amy took care of me. Then Alex dressed me, and Amy left. I moved to the kitchen and had my breakfast – so many drugs! When I was finished, Alex took me to the office. Around 11:30, Amy returned, and then she left to visit Alyssa. Around 5:30, Donald and Hildy stopped by for dinner, and it was good to see them. After we ate, they wanted to play Scrabble, and Amy won, I came in second, and the friends came in third and fourth. After they left, Amy gave me some of the drugs I couldn’t use in the food, brushed my teeth, and we went to the bedroom so Alex could put me in the bed.

On Monday, we woke up around 8:00, and Alex helped me to the shower; then Amy took care of it. Then she moved me to the bedroom, and Alex dressed me. When I was done, I asked Alex how he was feeling (he had a cold). We decided to stay home, and Amy went to the train. I finished my breakfast and went first to the bathroom and then to the office. Kathy came by around 1:00, and I had lunch at 2:00. I finally went to the living room around 5:00. I had dinner, which wasn’t great, had my medication, Amy brushed my teeth, and I went to bed. My problem is that I wake up at night, find it hard to go back to sleep, and there is pain in my feet.

Tuesday was a lot. We got up around 9:30, and I showered and got dressed. I then had breakfast and went to the bathroom. When I finished, a gentleman was in the living room; his specialty was electric wheelchairs. We had another gentleman on the phone asking a crucial question about my issue. Then a woman was on the phone, staying informed about the problems. When we were done, I went to the backyard, and he brought one of the wheelchairs; it was impressive. Then, about 30 minutes later, another gentleman came up to show us a speech device. After he left, I had lunch and sat in the living room chair until the therapist arrived. He worked with me for about 30 minutes. Then the people came to take the Jeep to figure out why the chair was not working well. A little while later, we had dinner, and I could not eat. I told Amy we will use shakes for dinner. She took care of my drugs, gave me an ice cream that I could not eat, and then I went to bed. I woke up several times as well.

On Wednesday, we got up really early, and I went to the shower. After Alex helped me get dressed, I went to the kitchen and sat there. Meanwhile, Amy was heading to the gallery, and Alex took her to the train. When he got back, he gave me breakfast. Then I went to the bathroom, and on the way, the shakes were causing problems, interfering with my throat. I was able to deal with it. Alex then took me to the office. At 1:00, he gave me one protein shake, and at 2:00, he gave me the other. At 4:00, he moved me to the living room. Amy went to the people who added the chair in the Jeep and drove it home. We had dinner, which I could not eat, and then we had some ice cream (again, there was a problem eating it). Guess I need to have protein shakes for dinner now. After Amy brushed my teeth and gave me drugs and gave PainQuil, then I went to bed.

Thursday, we got up at 8:00, I showered with Amy, and then Alex got me dressed, and we went to the kitchen for breakfast. Then we went to the car and headed to the gallery. Got there at 12:00, went to the bathroom, and then to my office. At 2:30, Alex gave one shake and then another at 4:30. A little after 5:00, we left. Got home after 7:00, and Amy went to Angela and David Henchel (whose son passed away). Alex helped me with the feeding tube, and then I went to bed. Amy showed up after I got to bed, and she had dinner with Alex. During the night, I woke up a few times.

On Friday, we got up at 8:00, took a shower, and got dressed. Then I ate breakfast with Alex, and Amy brushed my teeth. After we got into the car and headed to the city. When I got to the gallery, Steve Hill was there. It was great to see him. Once he left for his home in Texas, I got to my office and worked. Alex gave me a shake around 2:30.

Responses

  1. Scott Causey Avatar

    Please know how much I love you and I pray for your comfort as much as it can be possible. I also think of your family, you are so very blessed to have them and my heart is with you all. Give each and every one of them a big hug and kiss for me and my family.

    Like

    1. Howard L. Rehs Avatar

      Thank you Scott. I love you to.

      Like

  2. usuallyzealous49f547c1e5 Avatar
    usuallyzealous49f547c1e5

    Looks like you guys really enjoyed the casino. Thoughts are with you.

    Like

    1. Howard L. Rehs Avatar

      It was a nice casino … wish I made some money!

      Liked by 1 person

  3. Flora Avatar
    Flora

    Howard, I read your blog each week

    you are amazing and so is your family and friends and Alex

    Happy to see you got to the casino

    seems like you lost

    I hope you didn’t deposit too much ! 😂

    Sending best wishes to you and your “team”

    💪

    Like

    1. Howard L. Rehs Avatar

      Flora

      Thank you for reading my blog.

      Howard

      Like

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Howard Rehs