A year after starting coconut oil, Steve still seemed to be heading in the right direction with continued gradual improvements, especially in his short-term and recent memory. He found work that was quite meaningful to him as a volunteer two days a week in the warehouse at Spring Hill Regional Hospital.
We were, however, about to enter a period of ups and downs.
Just when everything was going very well, I came down with bronchitis in June 2009, and, as hard as I tried not to pass it on, Steve caught it from me. Neither of us had had any significant cold or flu for several years up to that point, which I attributed to our healthy diet.
Steve was sick with constant coughing for several weeks. He took a product to suppress it that was a concentrated form of dextromethorphan, one of the active ingredients in many over-the-counter cold and cough medicines. Normally, I give him all his medications, but one day when I was working, he filled a 2-ounce cup, normally used for Nyquil, with this other product, instead of the two-teaspoon recommended dose. It was hours later before I knew he had taken it and discovered it when I noticed that a newly opened bottle was more than half gone. He then told me what he had done, but he seemed fine, so I didn’t worry too much about it. I did tell him that he better not give himself any medication, but he should leave that up to me or our daughter.
A few weeks after the bronchitis, Steve had an outbreak of fever blisters on his lip that took more than a month to disappear, in spite of all the coconut oil he was consuming. In the previous year, he’d had a tiny blister for a few days just twice, a major improvement from the nearly constant battle he’d had for many years before starting coconut oil. On the day the blister showed up, he said he’d felt a sharp, stabbing pain on the scalp over the right side of his head.
During his illness, Steve told me at one point that he felt like he had “lost something,” but couldn’t explain what. He got up more often at night and became confused about where the bathroom was. He started putting some of his clothes on backwards, a problem that he didn’t have before. We went to a Fourth of July dance, and he couldn’t remember what to do with his arms and hands when we tried to dance. He started wearing just one shoe or sock again.
On the other hand, Steve was still able to do volunteer work and use the tractor to cut the grass, and his short-term memory still seemed improved over a year earlier. But needless to say, his negative changes worried me a great deal. I wondered if he was going to be able to recover from this setback. It was a very slow process, but he did recover almost completely.
In December 2009, Steve was able to dance at holiday parties, the shoes stayed on both feet, and his conversation flowed considerably better once again. He remained physically strong, with no hint of the tremor, visual disturbance, or slow gait that he’d had two years ago. In some ways, by January 2010, he seemed even better than before the illness. Here are some journal entries from that time:
January 13
“Steve is doing much better, is happy again and seems very much like Steve ten years ago with regard to his personality and interaction with me, although he still has a problem with ‘doing things.’ He surprised me last evening when we saw a classic film clip featuring Meg Ryan and Billy Crystal in a deli; he filled in the next line spoken by a lady at a nearby table, ‘I’ll have what she’s having!’”
February 26
“On Joanna’s birthday we ate at a Japanese restaurant and, much to our surprise, Steve picked up chopsticks and ate perfectly with them. Most people can’t do this at all. Today, when we went to the hair salon, he said hello to our hairdresser Jackie by name and asked how her little boy was doing. Also, when Joanna told us she was going to see Avatar, he told her how wonderful it was and how the movie is ‘in your face’ [3-D].”
February 8 (Steve’s Sixtieth Birthday)
“Steve is no longer depressed and usually bright and cheerful. He continues to volunteer in the hospital warehouse twice a week and wants to do more. It has been a long time since he has inexplicably taken something apart or lost his keys in the garage or done anything ‘stupid,’ as he says. He takes care of the yard and vacuums on his own.
“Steve recently told me that he feels like his accounting skills are still there, but can’t access them. He can’t use a calculator and can’t even perform simple math. He can read short snippets, but can’t stay with a novel. He has trouble keeping track of the day and the date. He doesn’t drive and we seriously doubt that he ever will again. He needs reminders of how to do some very simple things and still needs a lot of help in that respect. It took many years for these skills to erode, and if those pathways in his brain have died, he will never get them back, unless he can learn these simple things from the beginning once again. His MRI in spring of 2008 showed considerable atrophy (shrinkage) of the brain, so there will be major limits on how much recovery we can expect, even if he is fortunate enough to take Dr. Veech’s ketone ester at some point in the future.
“But, in spite of these persisting problems, the best part of his recovery is that ‘Steve’ is back. The personality and sense of humor that make Steve ‘Steve’ resurfaced in May 2008. My husband came back to me and he has not left. These aspects of Steve are stronger than they have been for many years. There are hours on any given day when everything is normal in our connection and interaction with each other. Not only are we husband and wife, but also we are good friends. This makes it easier for both of us to deal with the problems that persist. Steve has always been very aware of his memory issues and his limitations, and this makes it possible for us to talk openly about these problems. This goes a long way toward helping both of us cope with the nightmare that is Alzheimer’s.”
By the end of January 2010, Steve had been enrolled in the Eli Lilly semagacestat study for eighteen months. This was a crossover study, meaning that any time after twelve to fourteen months people who were on the placebo would be switched to the study medication. The drug is known to cause certain side effects, and a peculiar one is hair color change. But Steve did not develop the mysterious change until the beginning of February 2010, when we began to notice that his hair was coming in white at the roots.
Steve also developed several other possible side effects. He had an abrasion on his shin at the beginning of February that had not healed by March 1. When he nicked himself while shaving, the spots would open up and bleed while he was sleeping for up to five days. He had a strange episode where he nearly fainted and had an elevated CPK (creatine phosphokinase), an enzyme that increases as a result of damage to skeletal muscle, heart muscle, or brain. Since the drug is known to cause possible cardiac effects, this was of great concern. Fortunately, a repeat test at our local emergency room showed the elevation was related to skeletal muscle, but why this enzyme increased to very abnormal levels was a mystery.
We were scheduled to attend the Alzheimer’s Disease International (ADI) Conference in Thessaloniki, Greece, March 10–13 (discussed in Chapter 11), and I had to decide whether to continue the study and risk possibly more serious side effects or discontinue the study. Considering that we might not have access to the kind of medical care we are accustomed to, we decided to withdraw Steve from the study. The apparent side effects disappeared, and he had a half-inch white band of white hair slowly work its way out as normal color hair began to grow in at the roots once again. Even though we could not be completely certain Steve was on the placebo for the first part of the study, all signs pointed in that direction.
Just a few weeks after Steve dropped out of the Eli Lilly study, his eighty-seven-year-old father lost his battle with diabetes and heart disease on March 23. Understandably, this triggered a new bout of depression that has not completely subsided more than a year later, as Steve deals on a daily basis with the many feelings and memories stirred up by the loss of a parent. A visit to Cincinnati to visit his mother a couple weeks after his father’s passing found Steve more withdrawn and confused than usual. He called his mother “Grandma” and thought at times that his brothers had also died.
Steve began spending time talking to himself in the mirror as if he was talking to, and about, his father, and even named the image in the mirror “Paul,” his father’s name. These conversations were usually pleasant. On the other hand, he began seeing “Paul” in darkened windows in the evening and was often quite upset and confused by these images. I did not attempt to cover the bathroom mirrors, since I believed this was a therapeutic process for him, but I did hang curtains on the doors and windows that faced the courtyard to make the evenings more pleasant for him. Talking to oneself in the mirror is a common symptom as Alzheimer’s disease progresses, so this was a disturbing setback for Steve. At the very beginning he told me that the image in the mirror looked like Steve from the neck down but like his father from the neck up (Steve looks more and more like his father as he ages). He also tells me at times that I look older than he expects when we look in the mirror together.
Steve also began having trouble finding certain rooms right around bedtime, and for a while I even had trouble convincing him to come to bed, since he seemed unsure that this was his bedroom.
Several weeks after we returned from Cincinnati, the pendulum seemed to swing back in a more positive direction. On April 25, I wrote, “[Steve] is better than he has been for a couple of months. He got the John Deere [tractor] out and cut the grass. He remembered how to operate it right away. He still does a good job vacuuming and worked in the warehouse [at the hospital] without a hitch. We saw in the news that there was a volcanic eruption in Iceland that stopped air traffic in Europe. A few days later he pointed up to our sky at sunset and said he thought the effects in our sky might be from the volcano.”
But by the same token, Steve sometimes told me that he was going to go up the road to visit his mother and brothers, though they lived about 700 miles away in Cincinnati. A reminder of this was enough to keep him from wandering away. But fearful that he would follow through, our daughter Joanna made it her job to stay home with him whenever I was working. Caregiving has become part of her life as well—sad for one as young as she. She often said she believed she was doing this for a reason, and I cannot thank her enough for helping us this way.
On April 28, Steve had an MRI at the same facility at the University of South Florida where the previous MRI was performed in June 2008. We patiently waited for the written report to arrive at his physician’s office. About ten days later, we received some amazing news. The bottom line of the report read: “Stable MRI brain in comparison to prior examination dated 6/16/2008.” I called the radiologist who read the MRI, and he confirmed that he was sticking by this assessment.
Considering that Steve’s MRI had deteriorated so much from normal to marked atrophy (shrinkage) between 2004 and 2008, this was quite surprising. It is much more likely that the atrophy would have continued to progress over the next two years. This appears to be further confirmation that medium-chain fatty acids and ketones are keeping his brain alive.
The first year after Steve started coconut oil and MCT oil was a year of substantial improvement. The disease process seemed to reverse a couple of years in some areas and even more in others. Overall, most of the second year was one of relative stability, even though there were ups and downs.