We headed out of the gallery and got home around 7. There were many items delivered that day, including two walkers. Amy decided to go to Carvel to get me some ice cream. We had dinner (and medication), and I had to finish our Comments on the Art Market email. I was working late, and Amy came in with some ice cream (which included a tiny drop of something Lance got me to help sleep). She also came in with one of the new walkers that she built. The problem was that the arms were too low (needed to be returned). I got to bed a bit late, and Amy massaged my legs and feet (with something Lance had given me) – I got to sleep well after midnight. It appears that the compression socks help alleviate the swelling somewhat.

On Saturday, I woke up a couple of times, and then at 7, our alarm went off. I ended up going back to sleep until about 9. I took a shower and went to the kitchen for breakfast – I only used one protein shake since it took so long for it to get absorbed. Amy had to return and buy some things and wanted to check a few additional cars. I stayed home, answered several emails, and then watched some TV. Amy got back around five, and by seven, we had dinner – mine was a mixed steak and peppers, along with a bowl of blended mashed potatoes. By 9, I had some ice cream and a drop of that thing Lance got. I got my massage and went to bed.

On Sunday, I woke up several times, and then the alarm went off at 7:00 (I need to remember to shut that off on weekends). We stayed in bed for a few more hours, and then I showered and waited for Amy to come in to get my clothes. I will add that I lifted the lower part of the mattress to keep my feet elevated, and it helped. While getting dressed, Rob Samuels called Amy to tell her that he and his wife were in town. They plan on coming to our house tomorrow, and on Tuesday, they want to have dinner with us to celebrate my birthday – July 1 – 66 years of age. I made it to the kitchen and finished everything by 12:00! Now, that was a late breakfast. We had several things delivered that day (compression socks, Coloplast, etc.), and Amy need to move some bags from the downstairs (guess the chairlift we helpful). I had a few things to do on the computer, and by 3:00, I headed to the living room to watch some TV. For dinner, we both had Chicken Carne Asada; mine was pureed. Then, I went to bed.

On Monday, I got up at about 7, as I had to take Radicava, and our friends Rob and Lindsay Samuels were coming over. I had Amy buy a mirror that I could put in the shower to shave, as standing is becoming more difficult, and my hands are shaking. I had my typical breakfast, showered, and shaved. The time in the bathroom was over 1 hour – shaving took a bit of time. I had protein shakes for lunch, and around 2:30, Rob & Lindsay showed up. They hung out until about 4, and I went to take a nap. They assisted Amy in loading things into the car and returning them. I woke up, and it took a while to get out of bed. By the time I got up, I couldn’t reach the bathroom and made a mess. I quickly (well, not so quickly) grabbed another pair of pants and underwear, went to the bathroom, and cleaned myself up. I put on the new things and threw the wet ones in the shower. I then made my way to the kitchen and got a text from Amy that they were getting Chinese food. It took a bit of time until they got back. I sat in the kitchen and had my protein shakes while the three of them had a good time eating and talking in the dining room. Once I finished, I made my way into the dining room, and we hung out there until close to 9 pm.

After they left, I told Amy what happened, and I needed to take another shower. After I was done, I got into bed, had a massage, rolled over (which is not easy either), and went to sleep.

I want to add that in June, Alyssa did a 60-mile Challenge to Fight ALS – in honor of My Dad, Howard Rehs. She went 60 miles over the month and initially set her amount to $1,000. Over the 30 days, she raised over $15,000, making her the top fundraiser of the month.

Tuesday was my birthday – 66 years old- and I got up 14 times that night to use the urinal (my birthday present?). I have never woken up so many times; I guess I need to reduce the amount of protein shakes and water I use during the day. By 6:30, I was in the kitchen doing my typical drugs and protein. On the way to the gallery, I had Amy stop on the street and used a bottle she bought because I needed to pee. I arrived at the gallery around 11:30, and the crew came down to help me get into the gallery. When we got upstairs, Neil gave me a bowl of ALS wristbands! For lunch, I had two protein shakes. Then, a couple of hours later, all the people in the gallery came into my office to wish me a Happy Birthday and gave me a treat: Magnolia’s Banana Crème Pudding, which Alyssa had mixed with a little bit of my vanilla protein shake – it was so good! By 4:00, we left to get home for dinner with Rob & Lindsay.

As we approached the house, Amy ordered Italian food, and it arrived about two minutes before our guests arrived. Rob & Lindsay came into the kitchen with cards, and balloons, and dessert (Banana Cream Pie). Amy made me a mixed chicken parm, which I ate in the kitchen; the rest had dinner in the dining room. After I made my way into the dining room and, Rob had a pie in front of my seat with candles on it. I could not blow them out, so Rob did! I did eat part of the pie – just not the crust. Afterward, Amy gave me a little cup of ice cream with the RSO (Rick Simpson Oil). By 8:30, they ordered an Uber, but the first driver never showed up, so they did not head out until about 9. I went to the bedroom, brushed my teeth, and got into bed (which is not an easy thing to do), and then Amy massaged my legs. I got back out of bed (it took a bit of time) and then got back in so I could lay on my left side; the process is very annoying.

That day, I started a fundraiser for Project ALS. I start at $1,000 and am now over $4,000. I hope people will continue to donate.

Wednesday, I woke up once during the night – hooray! At 6:30, I headed to the kitchen and did something different. I took the Radicava, then 30 minutes later, I took the Doxy. Then, 30 minutes later, I took all the other medications. After the Doxy was in for 60 minutes, I took a protein shake. I headed to the shower, and then Amy helped me get dressed – her biggest issue was putting on my compression socks since they are so tight – and then we headed out. We got to the gallery before 11 am! For lunch, I had two protein shakes, answered several emails, and colored corrected a few images. The rest of the crew was preparing for the upcoming shows. A gift came in from Jacob Kodner – food! We headed out by five and got home a bit before 7. We ended up having dinner after 8, and I had a great one: she mixed Lo Mein and Hot & Sour soup. Then Amy cleaned up, and I went to get ready for bed (it takes me a good amount of time). I had a nice foot massage and went to sleep.

Thursday, I woke up three times, and by 6:30, I was off to the kitchen. By the time I was in the car, it was 10:15. Almost 4 hours to eat, take drugs, and get ready. We arrived at the gallery before 11:30, but the fire department was on our block, so Neil and Alyssa had to come to 5th Avenue to pick me up. Around 12:00, my good friend Larry Steigrad (who specializes in Old Master art) came by to spend a little time with me. After he left, I had lunch – two protein shakes. Around 4 o’clock, Rob Porell stopped by to see me. It is very nice to have visitors during the day. We headed out at 5:20.

When we were on the Van Wyck, Alyssa called telling us that Teddy had a seizure and was being taken to the hospital. Amy was going to drive us to the hospital, but I wanted to go home since I was not comfortable heading to the hospital when I have a lot of issues walking, etc. She took me home and then headed to see Teddy. My sister-in-law, Michelle, and her daughter, Helaina, were going to Alyssa’s house to watch Benny so her husband, Adam, could go to the hospital. Several people were texting me to see if I needed help, and I told them no. The problem I have is that when people tell me they are coming over and I don’t want them, it makes me laugh – and not a fun laugh, but one that makes me cough, choke, bite the inside of my mouth, and walking is even more difficult. I sat in the kitchen and had yogurt so I could take the medication without more liquids. At one point, I needed to use the bathroom but was worried about walking, so I used a sturdy paper cup. A little while later, I was able to get up and got rid of everything. Oh, and most importantly, Teddy, who had a Febrile Seizure with a temperature of nearly 105, was okay – she went home that night. Thank goodness!

While Amy was at the hospital, she texted Dr. Andrews to see if I could use Xanax to help stop the laughing (I am already taking Nuedexta and Sertraline, but they are not working). She wrote back saying yes. My brother picked it up and waited in our driveway until Amy got home. When Amy got in the house, I was sitting on the edge of our bed, and she brought in the feeding tube, water, pill crusher, and Xanax. We put it in, and within 10 minutes, my legs became so weak that I slid down the side to the bed, landed on the floor, and could not get up (no injuries). She gave me a pillow, and called my brother to come over (he brought Helaina’s boyfriend), and they were able to pick me up and put me on the bed. It didn’t take long for me to fall asleep.

Friday, I woke up 3 times, and by 8:30, I needed to get to the kitchen. The issue was that getting out of bed is even more difficult now, especially after taking that new drug. Amy helped me sit on the edge, and it took me a bit of time to get up on the walker. Then, it was very slow to get to the kitchen. I took my medication over two and a half hours, and then before I used the protein shakes, I had Amy bring in the urinal (I ended up having Amy change my underpants). I took the protein shakes and made my way back to the bathroom to shower and get dressed – it was difficult to move around; my legs were so weak. I had Amy put on the compression socks, which I hope will help. I finished around 12:30, and by 2:00, Amy had some things to attend to, so I updated my blog. Around 4:00 my mother came by to see us.