Howard Rehs

My journey with ALS

August – 4th week

We stayed in the gallery until around 8:00 and then headed home. When we arrived, Alex helped me get into the house. Then he helped me get into the bed, and I now have a lot of problems. Most of the time, I end up falling face down, and then they need to move me around, which isn’t easy. When they got me on my back (there was a lot of pain in my legs), Alex left for the weekend, and I went to sleep.

On Saturday, we got up, and Amy helped me into the shower, dressed me, and then went to the kitchen. I did my normal routine and then went to the living room (the new chair is great). Later, Kim and Elliot Salta stopped by (family), and Adam, Alyssa, Teddy, and Benny came by. Amy also ordered dinner. I sat in the kitchen, and the family went to the dining room. I had dinner and then some ice cream. When they were leaving, Adam brought Teddy in, and she kissed me! I brushed my teeth and rinsed my sinuses; then we headed to bed. Sadly, I fell face down, and Amy had to move me around, which is not easy for her. She finally got on my back, and I went to sleep.

Sunday, we got up, went to the shower, which is no longer easy, dressed, and I had all the drugs and shakes on my office desk. A short while later, Amy moved me to the living room, and Todd Casey was there. It was a very nice time, and my brother and Michelle came by to use the Corvette (needed about 50 miles for it to be serviced), but it had a clicking sound, and he did not want to use it. We will send it to a service station for inspection. Anyway, Amy brought lunch for her and Todd (a salad), and I had one of my protein shakes. After he left, we had dinner, which Helaina had picked up, Chinese food; I stayed in the kitchen after I had some ice cream and the RSO. Once she left, we went to bed, and once again I fell flat on my face. It took Amy a while to get me on my back after Amy got me the Ravicava for Monday morning. I went to sleep.

These days, I only get about half the food because it falls out of my mouth. In addition, I am constantly biting the inside of my mouth, and at times, there is blood.

Monday, I got up around 7:15 and took the drug. Then I fell asleep. Around 9:00, I went to the shower (which was difficult), got dressed, and then went to the kitchen. Alex showed up. After I finished, we took Amy to the dentist, and Alex went to physical therapy. When we came home, my parents arrived and stayed, while Alex went to the bank, and Amy and Helaina went to Alyssa’s house. I had dinner around 8:00 – Chinese food. I used my food to take the drugs, then had the ice cream and RSO, and finally got to the bedroom. They tried to get me up in a different way, but it did not work. Alex and Amy had to move me around to get me straight; then Amy gathered all the items needed for my early morning Radicava and helped me position the urinal. Then I went to sleep.

Tuesday, I woke up before 7:00 and took the Radicava, then fell back to sleep. A little after 8:00, Alex got me to the shower, dressed, and we went to the kitchen, where Amy was setting everything for me. After that, we headed out to the gallery, arriving around 11:30. Alex helped me get to the bathroom and then escorted me to my office. I stayed there, had lunch, got a nice card from Allison Gee, and Neil gave me some gelato. Then, I had an issue with my nose, which ended up requiring me to use a lot of tissues (Alex helped me). We headed out, and the drive home was a long one. We had dinner (hamburger mixed), drugs, and ice cream with RSO. Then I needed a shower because my use of the urinal failed. The shower is now leaking downstairs. After Alex helped get into bed a little more easily. I finally went to sleep.

Another issue is that I can no longer sit straight, and I make many spelling errors. Additionally, I often use paper towels in my mouth, and when I remove them, I have a big yawn, and the saliva falls out of my mouth. This happens all the time.

On Wednesday, I took Radicava around 5:30 and got up by 8:00. Alex did the shower, got me dressed, and when I arrived in the kitchen, Amy had made everything I needed. We left around 10:30 and didn’t arrive at the gallery until 12:00. When I arrived, Todd Nakano was already there (a past client). He stayed for about 90 minutes, talking with the family and me, then he headed to the airport to go back to California. Then Ryan Lynch came by (a friend of Lance) to give us information about the new ‘drug’ being delivered tomorrow. It is a B12 injection that needs to be done twice a week. It arrives tomorrow and will take the two doses. While having lunch, I needed to use a urinal. Sadly, I made a mess, and Amy needed to buy new pants. We left before five because we had to go to physical therapy; we got there before seven and finished before eight. Made our way home and had dinner, ice cream, RSO, toothbrush, and headed to the bedroom. They tried to have Amy use a new idea to help me get into bed, but it did not work, so Alex got me in. I finally went to sleep.

On Thursday, I took Radicava before 6:00 and got up around 8:30. Alex helped me shower and dress, and then we went to the kitchen for breakfast. So, how long does this take? We arrived at the car around 10:30 – that’s 3 hours! We arrived at the gallery after 12:00. We had lunch at 2:00, and then a box came with the B12. Amy injected one in my right arm, and Alyssa did one in my left arm. Around 4:00, Alex did a massage, then I went to the bathroom, and the urine was red (from the B12). We headed home, and I had spicy Indian food. I finished with ice cream, RSO, brushed my teeth, and went to the bedroom, where they tried another way to get me on the bed; it did not work. Alex laid me down and moved to the top, then Amy helped me move a little to the right.

B12

On Friday, I took Radicava around 6:30 and finally got up after 9:00. Then Alex came in and took me to a shower that was downstairs. Our shower is leaking and has messed up the ceiling in the lower level. After we went upstairs and had breakfast. Then I went to my office to work on part of the newsletter. Had lunch, then dinner, and it is 9:50 and I am still working!

Responses

  1. thoughtfullylady38c3636e7c Avatar
    thoughtfullylady38c3636e7c

    Dear Howard,

    Thank you for sharing your heartfelt updates. I can see how difficult it is for you and Amy when you need to be turned from your stomach to your back or side. In the Netherlands, there is a device called the RollAssist turning system, which makes moving and turning in bed much easier and less heavy for the caregiver.

    Here is a link as an example:
    https://www.youtube.com/watch?v=3j5gi-4rB9M&t=50s

    https://www.specialbeds.nl/zorgbedden/rollassist

    In the Netherlands, this system is sometimes even covered by health insurance. I don’t know if something similar exists in the U.S., but it might be worth asking your insurance provider if such an option is available.

    Hopefully, something like this could give you more comfort and ease the strain on Amy.

    Warm regards,
    Alexandra Klimas

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    1. Howard L. Rehs Avatar

      Thank you. Maybe it will be something I need in the future.

      Like

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Howard Rehs