We headed home on Friday, and it was another long drive. I will also add that the roads in New York SUCK. There are numerous potholes, and the areas where they cut open are often left rough. The amount of bumps we hit is crazy. Anyway, when we got home, Amy made me some spicy Vitamix blend – it was incredible. I then had banana ice cream and finally got in bed. Amy put ice on my feet for a little while. I took a gummy, and then I went to sleep; woke up twice that night.

Some interesting info. For some reason, I put a folded paper towel in the front of my mouth, and it started absorbing the saliva.

On Saturday, I got out around 8:15, went to the kitchen, and administered all the different medications through the feeding tube. I also had two protein shakes. It is amazing how slowly the protein flows down the syringe compared to the water (you can check my video on Instagram and Facebook). I took a shower, Amy headed out to pick up stuff, and I worked on the computer. When I am working, there are times when I feel normal – nothing is bothering me. Then I try to get up, and reality hits! I then went into the living room and watched some TV. I spent the entire day keeping paper towels in my mouth as well – it seems to stop the saliva! In the late afternoon, Amy went to look at another car that she would be comfortable with – we need to install a special seat and can only have an SUV. My sister, Tom, and Mom came by to see me. They headed out, and we had dinner – Amy took Indian food and blended it for me. It was really good. I went to bed around 11.

Sunday was a long, busy day. I got up, administered all the medications through the feeding tube, had two protein shakes, and did some work. Amy had to pick up some things for the family that was coming over in the afternoon. By 3:30, Alyssa, Adam, Teddy, and Benny arrived. Shortly after, my brother and his family came over. Then, my mom, dad (I cannot remember the late time he was here), and their caregiver. A bit later, Lance, Chloe, and Arthur (one of his oldest and dearest friends) came. Lance handed me a new watch that connects to my cell phone – a gift from Alyssa and Lance. After everyone was here for a little while, my parents left. Amy ordered dinner from Marinana, and the crew ate in the dining room. I sat in the kitchen, and Amy took the chicken parm and used the Vitamix – always nice to eat that. Then they had dessert, and Amy gave Teddy one of my pineapple ice, which she decided not to eat, so I had to suffer eating it!! After I finished, I went into the living room, and everyone left the dining room and came over. Around eight, everyone except Lance, Chloe, and Ben (my brother’s son) left. Then Lance wanted me to try smoking a joint to see if it would help with the saliva. The issue I had was that I couldn’t close my lips to inhale. So Lance inhaled and then had me open my mouth, and he exhaled the smoke in my mouth. I am not a smoker, so it caused me to cough a lot, but it did reduce the saliva for a little while. By nine, they were heading out, but Amy mentioned the need to try and install the toilet rails in the main bathroom. Well, after an hour, they realized it did not work. So she then mentioned that the ones in our bathroom were a little loose. The three of them spent a good hour fixing it. They finally left around 11 pm, and we headed to bed. That night, I woke up four times and used two of the urinals to ensure they wouldn’t leak out – the last wake-up was at 7 am.

On Monday morning, I got up at eight and needed to go to the bathroom. It was only one hour later, but the problem was that when I sat up on the edge of the bed, I had to use one of the urinals, and it did not work well – it made a mess. I finally made it to the bathroom, cleaned up, and went to take my medication, protein shakes, the protocol, etc. I would also like to add that you should avoid coughing or sneezing while using a feeding tube. When that happens, the liquids shoot up and make a mess (image below). After I took a shower, moving around our bathroom got more difficult; I got dressed, and then a gentleman stopped by to give us a quote for a chair lift … it was a lot! After he left, Amy went to buy a new toilet (the one we have is very low) and then headed home. I spent the afternoon working and having one of my medications and two protein shakes. Then I opened some of the mail that showed up. There were several bills and a letter from Columbia. I was shocked to read that my doctor was leaving the hospital at the end of August. Amy texted her, and she said that she was moving to NYU Hospital to head up a new ALS clinic. NYU is a lot closer than Columbia!

On Tuesday, I got up just 2 times, and then I did my leg exercises – finished around 7:10. Getting out of bed is more difficult. The problem is that I need to use my elbow to get up, and they sink into the mattress. We need to find a railing that attaches to the bed frame since our new mattresses move (I did find one on Amazon, but it will not arrive until after July 15). I wiggled around and finally got up, went to the bathroom, and then to the kitchen – I had two protein shakes and all the medications. I shaved, showered, and then started having pain in the knees and ankles. Amy helped me get dressed and then gave me some liquid pain relief medication. Our niece, Helaina, was going into the city with us so we headed out … took me a bit of time to get to the car, and Amy had to lift my foot up to get in. The drive was long – over 1.5 hours – and when we got to the gallery, Lance was down to give me the scooter. By the time we got there, there was no more pain. Then Amy and Helaina went to look at an apartment – it was too small and very expensive. When they returned, Amy made me the classic grilled cheese and soup, and when I started eating, an old friend, Michael Richman, came by to spend time. Lance went out and asked him to wait until I finished eating … eating with other people can cause issues. Michael spent a long time with us; they even gave him some gelato, and he will be coming back from time to time. After he left, they made me some ice and gelato – always a nice treat. We headed home around 5:20, and it took a very long time – I arrived home after 7 (I must have yawned 20-30 times during the drive and used a lot of paper towels). When we got in the driveway, Michelle and Helaina pulled up to take the car that Helaina parked in the morning – they did come into the house to give me a hand. The family is amazing. Two handrails arrived today, so we attached them to the outside of the shower. For dinner, I had a protein shake, 2 medications, and a banana ice cream. Then I opened a piece of mail from CIGNA, which showed the cost of the medicines for the first five months — $65,000! Thank goodness I only pay $2,000! The only crazy one is the Radicava. Around 10:00, I headed to the bedroom to hit the hay – but took PainQuil – but then I asked Amy if there were any ‘things’ we could attach to the posts at the end of the bed that might make it easier for me to sit up. She went downstairs and came up with several things. We spent two hours and found something that would work, then went to sleep at midnight.

I decided to conduct a brief search on the cost of Radicava and found this from 2017: Following its approval in 2015, Radicava retails for $35,000 in Japan, where all prescription drug prices are reviewed and potentially reduced each year. The U.S. price is expected to be $145,000 a year, more than four-fold higher. Astonishingly, the U.S. allows such a high price level.

Wednesday, I woke up once – that PainQuil makes you sleep well. I got out of bed at 7:20 and went to the kitchen to have my typical breakfast. I took a shower (definitely getting weaker in the knees), and when I got to the bed, Amy helped getting dressed and then gave me pain medication that I put through the feeding tube. I made my slow walk to the car (Amy had to lift my left foot to get it), and we were off. We stopped by the conservation studio to drop off a Cortes that needed cleaning and got to the gallery before 11! Lance and Neil came down to help and then started working. For lunch, I used the feeding tube – I had two protein shakes. Later that day, I had some ices and ice cream. Around 5, we headed home, and Amy made me some chicken parmesan in the Vitamix and then more ice cream (which made it easier to take my medication). After dinner, Amy opened up a box that contained two alternate urinals. The first, called an ONEDONE, sits on the floor, and you have a little piece you can use on the bed – it includes a 45″ hose. The other was a wearable urinal drainage bag (I had her put that one in the box and tried the other one that evening). Oh, I did take PainQuil again.

Thursday, I woke up twice and used the new urinal; it was fine. When the alarm went off, I got out of bed, but my knees were very weak. I made it to the kitchen and had the protein shakes and all the medication. Then I went to take a shower, and I could not stop bending my knees. I was afraid that I was going to collapse. When I got back to the bedroom, Amy had placed the clothes on the bed and helped me get dressed. I had one of the daily pain medications through the feeding tube, and I made my way to the car. We stopped by the framer and then got to the gallery around 11. Lance and Neil came down to help, and Amy parked the car. Around 1, I had two protein shakes for lunch (via feeding tube), and shortly after, Amy received a call about an apartment we might be interested in in NYC – she went to see it and felt it might be okay. Alyssa came by a couple of times to see if I needed anything, and Lance brought in some paintings so I could color-correct the images. I also answered some emails. During the day, the guys from ArtWay stopped by and delivered a mobile wheelchair that one of our clients from Texas sent me – it is very impressive – thanks, Harry, Todd, and Linda! When it was time to leave, Lance went to get the car. We went outside to wait, and there was a space near the gallery, so I sat in the mobile scooter in the space. Some people wanted to take the space, but they were not going to try and make me move. Lance and Neil helped me get into the car, and off we went. We got home around 7. Amy tried making a couple of dinners for me, but they didn’t work out, so I had a protein shake, some vanilla ice cream, and my medications. By 9:30, I was heading to the bedroom, took the pain medication, did what I could to get into the bed (getting more difficult), and went to sleep.

On Friday, I used the new urinal a couple of times during the night, and when the alarm went off, I had to raise the top of the mattress, then slide my legs to the edge of the bed, and use that item we installed on the bed to help lift me. I got on the walker and went to the kitchen to do my normal feeding tube breakfast. Then Amy came over to tell me that another chair lift guy was coming at 8:30, so I went to the shower – which takes a good deal of time since my knees are constantly weak and buckle – and then sat on the bed while Amy was talking with the chair lift guy. Then she came into the bedroom with the costs. The guy who came in on Monday first quoted $37,000, then offered discounts, and ended up with a price of around $20,500 for just the indoor lift. The gentleman today quoted $12,500 for the inside one and then offered to do one for part of the outdoor steps. The total cost was approximately $17,500 (thankfully, my parents will cover that). We hired him. After he left, we headed to the city and did a little work, had the grilled cheese and soup for lunch (getting more difficult to eat food), and then later had the gelato and ice.