Howard Rehs

My journey with ALS

May – 4th Week

Well, Friday was a very fine day. Alyssa showed up around 3 pm with the grandkids, and they kept me laughing. Around 5 pm, Rob and Lindsay Samuels showed up; they were amazing (they even brought beautiful flowers). Both loved playing with the grandkids and helped me as well. Amy got home around 6:30, and we had ordered dinner… Italian food for everyone but me. I had my grilled cheese and Campbell’s tomato soup; I must say that it is the easiest thing to eat. During dinner, our guests helped with everything: getting the food on the table, working in the kitchen, and even helping clean up. They stayed until about 8:30. Alyssa slept with Teddy downstairs, and Benny slept in one of the bedrooms near us.

Rob, Teddy and Alyssa

Saturday was another long and tiring day for me. Alyssa was heading to Connecticut for a wedding (her husband went the night before). Once she left, Amy had to handle both grandkids; they were very active and made a big mess with all the toys, food, etc. My biggest issue is that Teddy makes me laugh all the time, and because it is so loud and strange, she starts to cry and does not want to be with me. Later in the afternoon, I had to take a nap. I woke up at about 5 pm, and when I sat down in the living room, the doorbell rang, and Rob and Lindsay were back. Amy had ordered food from a Greek restaurant in Oceanside (Gyro Bar –2778 Long Beach Rd, 516-766-9016), and they picked it up (I will add that the owner is someone we have known for a long time, and we love his food … sadly, I cannot eat it anymore). When we were getting ready to eat, Rob went into the kitchen and made my typical meal – it was perfect. I tried to drink my beverage but had some issues. That night, Amy slept with the two kids in one of the rooms, and I slept in our bedroom.

My ability to drink is becoming very difficult. I put a cup with a beverage in my mouth, and my body will not allow me to take the beverage in. I have to try it 8-10 times for it to happen, and many times, I am definitely swallowing the wrong way because I start coughing and choking. These days, I am only using protein shakes with high calories; sometimes, I try to drink two of them. Strangely, if I get the swallowing to work, I have to try and drink the entire cup in one shot. Many times, in the end, I swallow the wrong way. In addition, I am having trouble using my electric toothbrush – something that has started recently. Every time I use it, I am constantly closing my teeth on it and get a crazy vibrating sound on the teeth. Oh well.

Sunday was our 40 Wedding Anniversary. Amy was up early with the kids, but I did not get up until after 9. I left the bedroom and decided to go down to the gym. Well, the walk down the steps was very slow, and I only used the elliptical machine for about 12 minutes and then tried using weights. Before, I used 10 lb dumbbells, but now I can only use 5 lb. I did what I could, went back upstairs, had some food (my typical breakfast), and sat around. Alyssa and Adam came home early, and I went and showered (a very long and slow process). Later that afternoon, Lance and Chloe showed up to celebrate the 40th. They were both so happy to see and play with the children in and out of the house. I had Lance and Adam bring up a nice chair we had downstairs for me to use in the living room, and they went into our bedroom and took apart our bed and were able to drop the mattress down a few inches. It was so much easier for me to get in and out now.

We ordered pizza for dinner, and I had my typical meal. When I walked into the dining room, little Teddy made me laugh uncontrollably. She started crying and wanted to leave. I told Amy I would eat in the kitchen so she and all the other family members could eat together. The laughing makes eating difficult for me (and I already have trouble eating). I could eat all my meals in under 30 minutes (doctors told me that after 30 minutes, I needed to stop eating and wait for an hour to restart). I even had a cup with two protein shakes and could get most of it down! I then returned to the dining room, and Chloe and Lance brought a banana cream pie; I could eat the whipped and banana cream – I had to cut away the crust. It was so good. Shortly after, the crew left. Amy started cleaning up, and I just sat in my new chair!

Banana Cream Pie

Sadly, we told Alyssa and Adam that we could no longer let the kids stay overnight. The problem I have is all the laughing (which is non-stop when they are here) makes me so tired. That, in turn, makes my walking even more difficult. After a week of working, I need a few days to relax. In addition, next week, I will have the feeding tube installed, and I will need at least a week to recover. I was told that for the first two months, I would have a large tube hanging out (not going to be fun). After that, they can change everything so I can use a much smaller one that does not have to be left in all day.

Monday was a typical day. I got to the gallery around 11, and Alyssa was in for the day (no grandkids). I had lunch around 2 pm (Amy made a different grilled cheese with sauce – it was outstanding) and headed home around 5:30. Lance helped me come and go… walking was getting trickier. Had a late dinner and went to bed.

On Tuesday morning, Amy had a Zoom call with an expert about things that would need to be fixed for me to stay in the house. The list was off the chart – bigger doors, ramps, carpet removed, new showers, etc. We figure the cost would be ridiculous. It’s probably time to sell the house, which is very troubling. We then left for the city, and when I got to the gallery, my motorized scooter from my sister-in-law (Sheryl Scheer), who lives in Florida, was there (needed to be charged). Oh, it also came with a half-gallon New York Maple Syrup bottle! Had my typical lunch and did some work. The rest of the evening was typical.

On Wednesday I decided to change my breakfast — had two yogurts and protein shakes. I was really upset with how my face looked eating yogurt, but then I remembered how those little kids’ faces look when they eat stuff! We got in a little late since we had to stop by the conservator’s place to drop off a couple of paintings. Had my grilled cheese and soup a bit early as a couple of clients/friends were flying in from Texas (for the day) to spend the afternoon with us – Harry and Todd Stafford, you guys are part of our extended family!

That afternoon, another wheelchair arrived. It’s a lightweight one that can fold easily; it’s nice to sit in it and have someone push me around!!

Wheelchair

Thursday was a busy one (had the yogurt again for breakfast). I will say this again, congestion pricing is a bunch of bull shit! Getting into the city daily takes us at least 1 Β½ hours. Lance and I had appointments with an ophthalmologist on Park Avenue and 61st Street at 1 o’clock. He ordered an Uber, and we used the new wheelchair. The driver was nice since he came out and put the wheelchair in the back. We got to the office, and they had to open an outside door so we could roll in. I thought all the drugs I was taking were causing issues with my vision, but it seems I just needed slightly stronger lenses. What was very nice was that the doctor’s office also had an eyeglass section. I ordered some new glasses that will have in 2 weeks. When we left, another Uber driver came by and was helpful. When we got to the gallery, he helped me get out of his car. When we got to the gallery, I tried using the motor scooter, but it was not working well. My brother-in-law decided to open the battery part. It was filled with water, and the batteries were swollen – Amy ordered new ones!! The day was done, and we headed home — over 1 Β½ hours.

Friday started with a trip to the framer and conservator. We got in, and there were a few boxes on my desk. The first one I opened was a gift from our Canadian artist, Gail Descoeurs … a very nice set of syrups. We have enjoyed working with Gail for a few years and look forward to many more. The other box contained an assortment of things from Scott Diament and the group from the Palm Beach Show … a show we have done for about 20 years! Lunch today will be a little different; Amy went to Dunkin (got an egg and cheese croissant and a donut)!! Alyssa is working on Saturday’s email, I am working on my blog post (LOL), and later today (around 6 pm), Lance will be working with our photographer. Right now, Lance, Alyssa, and Amy are talking with Tim Jahn – who stopped by.

Responses

  1. Jeffrey Rosenzweig Avatar
    Jeffrey Rosenzweig

    A very busy week for you. It is wonderful that your family and friends have been so helpful. I agree with you the congestion tax is bullshit if it takes 1 and 1/2 hours to get to the city no matter what time you leave. I would send you maple syrup but it sounds like you have more then you need. Once again happy anniversary to you and Amy

    Jeffrey and Amy

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    1. Howard L. Rehs Avatar

      Thank you for reading the posts. Family and friends are so special. After Wednesday I won’t be eating much through the mouth, but I think we can still put the waffles in a blender with the syrup. Problem is, no taste!! LOL!! Guess now I can eat all the things I did not like.

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      1. Jeffrey rosenzweig Avatar
        Jeffrey rosenzweig

        good to see you haven’t lost your sense of humor

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      2. Howard L. Rehs Avatar

        Always laughing!

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  2. hideoutfadinge355c1dcab Avatar
    hideoutfadinge355c1dcab

    Thanks for the update Howard. I hope the feeding tube placement and recovery goes well for you. xo Carrie

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    1. Howard L. Rehs Avatar

      Thank you. I hope so as well! Eating is getting very difficult. Tried a donut today and was only able to take 4 small bite. This issue SUCKS! I love donuts!

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  3. thoughtfullylady38c3636e7c Avatar
    thoughtfullylady38c3636e7c

    Dear Howard,

    Thank you for once again sharing your week with such honesty and warmth. It’s always touching to read how you continue to face each day with humor, love, and strength. It’s clear how much support and joy your family and friends bring you, and how important those moments are.

    What you wrote about the challenges with eating and drinking sounds incredibly difficult. You handle it all with such courage, and I can only imagine how exhausting it must be at times. I don’t know if this is a helpful suggestion, but I was wondering if you’ve ever considered making fresh vegetable or fruit juices with a juicer (only if it wouldn’t be too taxing, of course)? It might be a gentle way to get some extra nutrients in, or perhaps even as a base for a homemade vegetable soup (but only if it feels right for you and works with what your body can manage).

    In any case, I hope you continue to feel surrounded by love, support, and that beautiful sense of humor – even when it wears you out a bit. Your updates remain truly inspiring. Wishing you all the best with the feeding tube procedure next week, I hope it will ultimately bring you some relief.

    Warmest regards,
    Alexandra Klimas

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    1. Howard L. Rehs Avatar

      That was very kind of you. I have tried different types of drinks but if they have tiny pieces in them it causes an issue. Once the feeding tube is in, it should make it easier .. especially taking the medications. Having family, friends and artists who care is so helpful.

      Wishing you a great weekend

      Howard

      Liked by 1 person

  4. Stu Avatar
    Stu

    Howard

    Thank you so much for your updates! They keep our connection going, which I truly appreciate. I’ve always valued your suggestions for subject matter, even the crazy ones. Mary and I think of you every day. Stu Dunkel

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    1. Howard L. Rehs Avatar

      Stu .. thanks. We will keep giving you crazy ideas. And I think of you every day as well — have so many of your paintings in our house! LOL!!! We love them.

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  5. Debbie Stein Waxler Avatar
    Debbie Stein Waxler

    you’re never too old to Rock n Roll πŸ’ͺ🏻πŸ’ͺ🏻πŸ’ͺ🏻❀️😎

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    1. Howard L. Rehs Avatar

      Thanks! But rolling on the bed is very difficult! LOL!!

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      1. Debbie Avatar
        Debbie

        I’m sure. But hopefully laughing as you try makes it easier XO

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      2. Howard L. Rehs Avatar

        I laugh so much already!

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Howard Rehs