Saturday night was a little different than Friday night. Usually, I wake up once or twice to use the bathroom; on Friday, I slept the entire night because of PainQuil. On Saturday, I took PainQuil and woke up 7 times! I have a feeling that using the feeding tube with a lot of water may have created an issue. I decided that in the future, I would scale down the amount of water I use. I took my Doxy early and headed back to bed. Finally, I got up around 10, ate, showered, and went into the living room. Around 1:30, Dodi Cardile stopped by to spend a little time with us (I learned that her mother was diagnosed with ALS around the same time as I was). A short while later, her husband Mike came over; it was great to see them. After they left, Amy headed out to buy a new mattress (Robin Hoorwitz went with her) and check out a few cars – she needed to find one she was comfortable driving. I figured she would tell me she needed a Bentley (LOL), but she seemed to like an affordable Cadillac. Oh, and she bought Tempur-Pedic mattresses that were not only adjustable but also vibrated. That evening, Randi & David Rosen came over for dinner. I ate before they got here and then sat at the dining table with them. After dinner, they wanted to play Scrabble – Randi won! By 8:30, I headed to the bedroom, and they hung out with Amy in the living room. It’s great to have good friends.

Sunday night was much better than Saturday night! I took my Doxy around 8, and we stayed in bed until 10:30. I Got up, had some French Toast and lots of syrup, took my medications, showered, got dressed (which took a long time), and answered a few emails and many texts. I went back to the kitchen to have one of those Nestle through the feeding tube. We ended up watching a movie in the afternoon and then had dinner – classic grilled cheese and soup. I took the rest of the medications and then used the feeding tube to take the protocol – I am not sure how I will do tonight because I need to use a bit of water – and I must take the PainQuil, which also requires water before and after.

Unfortunately, I have several nurses coming in this week, so I won’t be able to go to the gallery this week.

On a happy note, Alyssa started a 60-mile Challenge – walking 60 miles during June to raise money for the ALS Association. She first set a goal of $2,500, but that was hit very quickly, so she raised it to $5,000, and that was hit very quickly as well, so now she has placed the goal at $10,000 and almost 80 people have donated over $8,200 … and there are still 3 weeks left.

Monday, I had all my medications – I started at 5 am (which is when I first woke up) and was finally sitting in the living room by 11. Amy took the train to New York City for an appointment with her retina specialist. So, for most of the day, I was working on the computer (in the house all by myself). She returned around 3:15 (thank you, David Rosen, for taking and picking her up at the train station). Around 4:30, a physical therapist arrived and spent a considerable amount of time with us, suggesting ways I could help maintain my body’s function. She gave me a series of exercises to do while lying down: Ankle Pumps, Quad Set, Straight Leg Raise, and Hip Outward and Inward. I need to do each one 10 times in sets of 3 (so, basically, 30 times) and do one in the morning and one in the afternoon. We had dinner and relaxed.

On Tuesday, I started a little later – at 6 am- and by 11, the first of two nurses came by. She was a speech and swallowing therapist who spent a considerable amount of time addressing the swallowing issues I have. She was a very nice person (all the visitors were great) and will be coming back each week for June to make sure I am doing it right. Then, a social worker stopped by and spent a bit of time. After the two left we had lunch – I ate waffles and had a few swallowing issues. Then a gentleman arrived with a BiPap machine – I hope I never have to use it! After he left, Amy headed out to return some things and get some new stuff – including a Vitamix blender (something the speech and swallowing person suggested). Supposedly, with that machine, you can make almost everything smooth and easier to eat. We will try it on Wednesday.

Wednesday was up around 4:15, and I decided to take the Radicava. Then I waited an hour (working on the computer) to take the Doxy, waited 40 minutes, and then went back to sleep. I had to be up at a reasonable time since the new mattresses Amy had ordered were arriving. When they arrived, the process was seamless. They removed the old mattress and then installed the two adjustable bed frames at a lower level, placed the two 12″ mattresses, and it was so much easier to get in and out of the bed. For dinner, Amy tried using the Vitamix for the first time, and it took a few times to get it right. I did have chicken and mashed potatoes, which was nice. Something different!

Thursday, I was up at 6, started my medication, and by 10, I was ready to go to my office (the one at home). Amy had a doctor’s appointment, so I was here by myself. I had some business matters to attend to. By 11:30, I noticed an email from Network Solutions that one of our URLs was going to expire in a couple of months, so I messaged them. The individual was not very helpful – he was giving me ridiculous quotes — $40 per year when I paid about $15 per year last time – 9 years would cost $360. I decided to check GoDaddy and finally messaged them and their price for 9 years was under $190. The process of transferring my 34 URLs (some of which were active until 2031) from Network Solutions to GoDaddy was unbelievable. It took over 7 hours to complete. The GoDaddy representative I was messaging was very helpful (of course, because I was paying them a substantial amount of money to let them manage the URLs). Most of the individuals at Network Solutions were not so good.  Over the day, I messaged three different people and finally got someone who was able to take care of it. I should add that GoDaddy not only gave me better prices but also agreed to add free years for the ones that expired between 2026 and 2031 (so the one that expired in 2031 was 9 years plus 6 free years). I should add that Amy came home around 2:30 (even stopped to look at another car) and insisted that I use one of the protein shakes since I hadn’t had lunch. One of the nurses came over around 4:30 … she had to check on me while I was on the computer messaging both companies. It seems she has done that before with other patients.

That evening, Amy used the Vitamix blender to make me dinner and dessert – it was amazing. She blended Clam Chowder with a liquid, and I was able to eat the entire bowl. Then she blended bananas with some ice she had made the day before for a delicious dessert. I took some medication at 9:15 pm, laid in bed doing my leg exercises, and went to sleep.

Friday, I woke up twice – the first time was about 2:30, and the second time was around 5:15, so I went to the kitchen and started my medications. By 8:00, I went back to bed to do my leg exercises and then decided to eat some waffles, which I drowned in syrup. I took all the other medications, showered, and then Amy left to pick up our granddaughter (she is keeping her here until tomorrow since she has not seen her in 3 weeks). I guess I am going to have a laughing day! Amy and Teddy came back around 12:30, and the little one went to sleep. Then the physical therapist came by and had me put on some shoes, use the walker to head towards the step, then held on to me as I walked down (holding on to the railing with both hands), then moved the walker to the front door level, had me used the walker till I got to the front steps of the house, then walked down and then had me use the walker to walk to my neighbor’s house and back into my home. This is the first time I have done that! After she left, I had lunch – a protein shake through the feeding tube, the protocol, and a yogurt.

I thought that using the feeding tube would make things much easier. While it does make the use of some medication much easier to administer, the real problem arises when you put the protein shake through it; there are issues in the throat, filled with phlegm. It isn’t easy to get it out! Gotta love the human body.