Published on: March 15, 2012
Our family’s journey through the fog
by Raul Lora-Zamorano for Health Impact News
Catherine and I were married on May 1st, 1988. Prior to our marriage, Catherine was a senior manager in the administrative area of a major retail chain with some 800 stores. I had the responsibility of calling on her direct superior. While she was always a head turner, what really drew me in was her professionalism.
By the second week of October in 1988, I had already resigned my position and had started my own company which we eventually took public. That Tuesday, I received a call from the realtor who had found our home. Catherine had come to their office for other business. When she arrived she was dazed, confused and had difficulty speaking.
I instructed him to call an ambulance and said that she should be transported to the closest hospital. I asked one of my senior managers to drive me to the hospital.
When we arrived I was informed that she had suffered a stroke, she was totally paralyzed and could not speak. She suffered a second stroke the next day. After 2 weeks in the hospital she came home and while she had regained her mobility in full she had residual speech impediments and stuttered. By the end of the following spring she had recovered 100% and anyone that had not known her previously or did not know of the stroke could not tell anything had happened, much less of that level of severity.
In 1990 our daughter Carina was born. At the time we had moved to southern New Hampshire.
Together and with the help of several key members of the company’s management team, we grew and built our business, and in July 1993 we took the company public. At this point Catherine was so in control of her motor skills that she managed all of our SEC filings, interacted with the attorneys and auditors and wrote most of the narratives for our compliance filings. Additionally she managed all of our shareholder relations.
Moving our family to Florida
Seven years later in the year 2000, I had divested our holdings in the business. Catherine had never been thrilled with the harsh New England winters and I had promised that we would move south at the first practicable moment.
We moved first to North Carolina, her home state, then ultimately to the Tampa Bay area in my home state of Florida. We settled into our idyllic waterfront home and lived a lifestyle that while it was not opulent, it was certainly comfortable.
While we had for all intents and purposes retired and had limited business activities, in 2002 I had opened an office and we went there every day except Friday for 3 to 6 hours.
Our lives flourished. We had evolved into recognized members of the community. Catherine had converted to Catholicism in 2003, and we renewed our vows in a church wedding.
The Onset of the Signs of Alzheimer’s at Age 49
While I cannot tell you the exact day or even the month, sometime in 2004 I began to notice changes in Catherine. Simple and routine tasks were becoming frustrating and burdensome. The symptoms persisted and soon the memory issue raised its head. At first it was sporadic, however it began to progress almost in a geometric fashion. Eventually it became a chronic situation that was visibly affecting her personally. She was angry at herself, highly frustrated and was looking for answers.
About a year and a half later the repetitiveness began to emerge, first it was slight, but it also progressed and eventually it too became the norm.
Initially her doctor opined that her situation was stress related. This was understandable, as once again my business had mushroomed, we had 40 employees and it was a full time plus situation. Once again 6 AM to 7 PM days had become the routine. This had happened between 2004 and 2007. So in early 2007 we once again stepped back.
However, after almost 2 years the symptoms had not abated but rather they were now in a rapidly progressing mode. We discussed the issues and decided to get her tested. This was not an easy decision for her to accept. She was a beautiful, extremely fit, vibrant youthful 52 year old woman that was not used to this type of situation.
In late 2008 she underwent extensive testing. After a battery of tests the neurologist opined that it was most likely the after effects of our stress laden lives. He would later share with us that at the time, due to her young age and her physical presentation he never seriously considered Alzheimer’s as the culprit.
Dealing with Advancing Dementia
By 2011 Carina and I had been observing a progressively deteriorating situation. In the prior eighteen months the advancement of her affliction had brought us to the point of an all consuming fear of what might be going on. Twice she had gotten lost driving to nearby and highly familiar places. Simple routine household tasks were becoming extremely difficult and frustrating. Repetition had advanced to such a level that we were privately considering the options. In a span of a minute and often a few seconds she would repeat a comment, an anecdotal reference or a simple question.
On several occasions our daughter Carina and I would have private and quiet conversations wherein she would ask; “Dad what are we going to do?” The only answer I had was my commitment to take care of her mom as best I could for the rest of her life. We had both considered the possibility of dementia, an affliction that I knew a lot about since it had claimed my mother at age 81 and eventually took her life at 98. The last 4 years of her life she had been in a vegetative state.
The Difficult Process of Looking for a Solution
In mid 2011 I had a long discussion with Catherine and we concurred that extensive testing was our next step. That began a quixotic odyssey. At this time our daughter Carina was a junior at Florida State University, living in an apartment in Tallahassee, FL. She was home often but the visits were brief and not the same as living side by side on a daily basis. I advised her of the tests to come and the decision to pursue an aggressive posture.
This began a whole new life for us. It was a frenzied period. We were in a series of doctor’s offices, clinic and testing labs that had become so persistent that there came a time that neither I and much less Catherine, could tell you what doctor we had seen on any particular week or what was coming up the following week.
She was examined, tested, evaluated by her doctors. She underwent every possible test, re-test, diagnostic procedures as well as repetitions of many of the tests that she had undergone in 2008. While this was going on, I began doing extensive online research. Many nights I was reading and researching from the time Catherine would go to sleep, to the following morning. I read about the procedures, the tests and the conditions they were designed to diagnose.
The Reality of Alzheimer’s Disease at Age 56
Sometime in the early fall of 2011 I had come to an epiphany. I realized that Alzheimer’s was the suspect and her doctors were trying to see if there might be a mimic condition that was causing the symptoms. I shared my fears with 2 very close friends. I did not dare say anything to Catherine or Carina, but in my heart I knew.
Finally after what seemed like an incessant barrage of tests, doctors and evaluations in October of 2011, her neurologist broke the news. While a definitive diagnosis was impossible, the suspected culprit was Early Onset Alzheimer’s. He was wonderfully compassionate in the delivery of the horrifying news but was at the same time very direct and definitive.
In his words “This is a hard diagnosis to deliver to a patient, particularly one as young and vibrant as Catherine”. While Catherine had been progressively descending into a withdrawn, almost non-responsive state for some time, she was absolutely quiet and non responsive to the news. Her lack of a reaction was stunning. The doctor continued through a very methodical description of what he felt was a proper course of therapy and lifestyle modifications as well as a series of caveats regarding her activities, etc. As a result of my research, I had been expecting the diagnosis, and by now I had advanced my thoughts to Carina. Both of us feared how she might react if in fact the diagnosis was as I feared.
Immediately after leaving the neurologist office I called Carina and expressed via a pre determined code what the diagnosis was. She had demanded to know immediately, which I agreed with, but we didn’t want Catherine to know what we were saying.
That afternoon, I began notifying family, friends and neighbors. The reactions varied from outright denial to condolences to offers of help and assistance.
Learning to Live with Progressing Alzheimer’s
I was concerned with her routine walks, could she get lost? Should she drive, if so, how much and where to? Her doctors had opined that she should no longer drive, however the reaction from her family and the reality of the emotionally devastating impact of losing what has become a primal ritual in our society forced me to look for a compromise solution.
Immediately we began to transition our lifestyle. Her 5 days a week Jazzercise schedule was backed down to 3. She was over tired and it was obvious that what should be a good healthy practice was taking a toll.
I took over the cooking, grocery shopping on a full time basis. I had been gradually heading that way but it became an instantaneous full transition to a transfer of those responsibilities.
The following week Catherine took a trip to South Carolina where her family is based. She had made this trip several times a year for at least 10 years. This time was going to be different. I dropped her off at the airport just like I had done so many times and as recently as 6 months earlier. It was 8AM and her flight was at about 9:15AM.
At 10AM my phone rang, I was already back at home, it was Catherine’s cell phone calling. I immediately assumed there was a problem with her flight, a delay or a cancellation. Boy was I wrong! It was Catherine, she was not sure why she was at the airport, she was lost, she was crying and she had obviously missed her flight.
I immediately realized how badly I had managed this trip. I had failed to think ahead and temper the familiarity of the routine with our new reality. I asked her to look for anyone with a uniform and put them on the phone. A very kind and understanding gentleman came on the phone. I explained in much more detail than was probably necessary, the situation, her affliction and what I was hoping we could do.
He was more than kind and understanding. He walked her to a gate where they re-booked her on the next flight. Meanwhile I called the airline and advised them of what had transpired and what the underlying issues were. They made arrangements to have her greeted at her connecting city and escorted to the connecting flight. Additionally similar arrangements were made for her return flights. We still had issues of her wandering off all of the remaining and return flights even though she had been told that she would be met at the door of the plane, and the awaiting agents never thought that this young beautiful woman was the Alzheimer’s patient, but all of those incidents were resolved quickly as they were on the lookout.
The first week of December 2011 on a Thursday, her parents flew down to spend an extended weekend with us. Everyone at this point had accepted the fact that she could no longer fly alone. The weekend was wonderful, we were able to go out and have dinners. I had some support with dealing with all of the stuff. She was engaged, happy and entertained with the change of scenery and being with her mom, herself a beautiful and very young looking woman. Aaah genetics. I missed that bus.
While the visit was great, on multiple occasions I could see tears in her mother’s eyes when Catherine would struggle with a word, repeat herself over and over and forget what she was doing from one moment to the next.
They flew out that Sunday night. Catherine was exhausted; she had been more active than she had in months. By 8PM she was fast asleep. As I sat and thought about the impact of the visit, her mother’s sorrow and our new reality let alone our likely evolution at the hands of this insidious disease, an intuitive reaction triggered within me. We were not going to take this lying down and we were going to fight whoever, whatever, wherever to find a way to overcome this challenge.
Not Giving Up: Searching for a Solution and Finding Coconut Oil
I opened my laptop and started to think. I remembered a friend commenting several years back that his father-in-law who suffered from Alzheimer’s had benefitted from some sort of oil. I opened Google search, typed in Alzheimer’s, oil. That was it.
What followed was a genuine “Eureka!” moment. Up came a literal Tsunami of search results. At first I was bewildered: which should I look at first? Everywhere I looked the words “coconut oil” were staring me in the face. To this day I cannot tell you where I read first. Suffice to say that when I looked up it was 6AM. I had read hundreds of articles and anecdotal references but most intriguing was an article by Dr. Mary Newport titled “Alzheimer’s, What If There Was A Cure and Nobody Knew”. I must have read that article 3 or 4 times.
It is now Monday the 5th of December. I am pacing around, hoping she will get up early. Finally she emerged from our bedroom at about 8:30 AM. I immediately bombarded her with a whirlwind of commentary about what I had been reading, what I had found and what we were going to do right then and there. Within 30 minutes we were in the car headed to a health food store; a type of establishment that I am not known for patronizing.
I should mention that earlier (very early) that morning I had called Carina and sent her a series of links to what I was reading and seeing. We had a rather lengthy series of text messages. While we are in the car she writes me a text message that basically asked “dad when are you getting the coconut oil?!” I responded that we were just pulling up to the store.
How Coconut Oil Changed our Lives
I bought a jar of the coconut oil. We returned to the house where I immediately prepared a concoction of coconut oil and artificial sweetener. This is probably a good time to mention that as long as I had known her, while I loved anything coconut, Catherine absolutely detested everything coconut. She hated the taste, the texture and the aroma. Now I, her sadistic husband, was making her eat coconut oil which she described as lard like. That day she had two more doses.
The following day, December 6th, was going to be a busy day. She had both a neurologist and a primary care appointment. At about 7:30AM she appears from the bedroom. I was shocked; she NEVER got up that early. I prepared her morning dose of the hated coconut oil. She gagged, made some sort of tortured expression with her face but ate the mixture.
About an hour later I looked at her and realized that she somehow looked different. She simply seemed more alert. I asked how she felt and she replied “fine”. As we are getting ready for the day and the doctors’ visits, I asked her if she knew who the governor of Florida was. Keeping in mind that every time she was given the “Who is?” test she never got beyond the President Barack Obama. To my amazement she responded “Rick…hmmmm Baker (a former mayor who I had actively supported) or is it Scott? I was blown away, I asked who was the Vice President, without hesitation she said “Joe Biden”. I asked a few more and she nailed them all.
Even though much of what I had read spoke of rapid results, I never anticipated this. While she was not the Catherine of 10 years ago, she was more confident than I had seen her in a few years.
While she was getting dressed for the doctor visits I called Carina and told her what had just happened. She burst into tears and was beside herself. At this point she too was online devouring information.
At 10AM we arrived for her neurology appointment. I discreetly asked the receptionist to make sure I got a minute alone with the doctor before he saw us. A few minutes later he appeared at the door to the waiting area, caught my eye and waved me to come in. I asked Catherine to wait a minute and I would be right back. In what was probably the fastest presentation I have ever given, in 30 seconds I told him what was happening. He replied that he had heard of the coconut oil therapy but it was pretty new and he did not know much about it.
He then asks Catherine to come in and we proceeded to the examination room. He begins by telling her that I had shared the scenario with him. He asks her a few questions about it and then said, “OK let’s see how you are doing”. Many of you have been exposed to the memory test wherein the doctor or clinician tells them that they are going to give the patient 3 words, they need to remember and will be asked to recall those 3 words later on. They are always very simple, often monosyllabic words.
The doctor gave her the 3 words; Tree, Ball and Flag. He then went on to a lengthy conversation about coconut oil, other therapies and so on. It is important to note that Catherine had been tested by this doctor and other professionals in this way, well over a dozen times. On a few occasions, with a lot of struggle and difficulty she managed to remember 1 word. She often had forgotten that she was supposed to remember three words. Never had she remembered 2 much less 3 words.
After what seemed like a lifetime to me, but was actually about 6 or 7 minutes, the doctor asked if she remembered the 3 words……I held my breath, Catherine had an expression that I would categorize as nervous surprise, but she immediately fired back in quick succession and somewhat matter of factly; “Tree, Ball, Flag”. I literally gasped, the doctors eyes opened wide (real wide) and Catherine was cool as a cucumber. After a few seconds the doctor said “wow, that’s impressive”. We proceeded to discuss the therapy, dosing and her overall appearance.
At the close of the visits he was very positive. He stated that he would be discussing it with his colleagues, and he asked that I forward all the links I could. He told us directly and explicitly not to stop the therapy. His comment was “this is a natural food product consumed by tens of million of people all over the world. This cannot hurt you unless you have an unknown allergy”.
It goes without saying that we left that consult giddy with joy and walking on a cloud. I immediately texted Carina, who was in a class at this time. She called me right back in tears of pure joy. I put her mom on the phone with her. They had the most coherent conversation they had shared in a couple of years. When I got back on the phone with Carina she was crying happily and proclaimed “Dad! We have her back!”
I then shared the preliminary news with her mom, and other members of our respective families by forwarding a text message to everyone I could think of. My cell immediately blew up with an avalanche of calls. I answered as many as I could and told everyone that I would call them later that day. We returned home, had a quick lunch and headed to the 1PM appointment with her primary care physician.
When we arrived at the office we were immediately directed to an exam room and thus I never could pre warn the doctor as I had done with the neurologist. After a few minutes the doctor walked in, said hello to us both and looked at Catherine. The doctor cocked her head side ways, much like a dog might when something unusual catches their attention. She immediately said “You look different”.
I explained what was going on, the visit to the neurologist and my observations. She then engaged Catherine in a conversation, then she began the “Who is who” questions. Catherine knew them all. She knew what day of the week it was. She knew what she had eaten for lunch.
The last time (3 weeks prior) that we had been to see her, the appointment was at 1:30PM. At that consult, she had asked Catherine if she remembered what she had had for lunch. Catherine said she had not had lunch. I then shared that she had lunch 45 minutes earlier and she had had a Lean Cuisine. The doctor was somewhat taken aback by that and was obviously alarmed.
At the end of the visit her doctor was very happy. She also said that we should continue, asked that I send her the links and gave Catherine a huge hug.
Coconut Oil: Catherine’s “Best Friend”
That was pretty much the beginning of a renaissance of sorts. Since that time coconut oil has in Catherine’s words “Become her best friend”. She is once again driving on a limited basis. She is much more active. She is heavily engaged in her gardening. She now does some occasional cooking. In 2010 she spent 2 weeks trying to do our Christmas cards and finally gave up. This past Christmas, she sat down to do our Christmas cards and knocked them out in less than an hour.
These days Catherine rarely repeats herself. Her mom came for a visit in late January and was thrilled with what she experienced and did not shed a tear. Her brother also came for a visit in early January and in his words, if he had not seen her in October of 2011, he would have never guessed anything was wrong.
Our life has now pivoted to planning our next adventure. We are looking at relocating to Myrtle Beach so she can enjoy her family and they can enjoy her. For the first time in 4 years we are planning a family vacation at the end of April so we can celebrate our 24th anniversary on a cruise.
Last week Carina became engaged to a wonderful young man that we have known for about 8 years. They plan a spring 2013 wedding. Hopefully her fiancé can join us on the cruise.
She has completed her Economics degree and will complete her second degree in History this fall. She will graduate in 4 ½ years with two degrees. Her mom will be able to enjoy these events. She will be able to help plan her wedding and they will both share a joy that I had actually thought would never happen.
I must be candid and say that things are not perfect. She sometimes suffers minor relapses. We believe the ketones that the coconut oil provides are the key to feeding the brain. However, they are transient, and unless she maintains a strict dosage schedule the effects of missing a dose or delaying a dose are evident.
If asked Catherine readily tells anyone that she feels as though she has been driving in a thick fog and all of a sudden someone wiped the windshield clear. She no longer feels that she cannot participate in a conversation. She no longer struggles to find the words she wants to use to express herself.
She is alive again. She sees a future for us. She participates in our planning and enjoys getting out to dinner, lunch or whatever we choose to do. As Carina has said multiple times, we have her back, and it is a wonderful miracle that we cherish every day. My beautiful wife with the immense heart and a passion for all things living is back.
As of this writing I am dedicating my time to bringing this message to as many people as possible. While it may not be the solution for others, it has been for our family, it needs to be shared. We firmly believe that there is hope, and that there is a new way to fight this disease. Our family fell into a dark and terrorizing tunnel, and we have now seen the light at the other end, and we are seeing a beautiful bright day with blooming flowers and birds singing.
In closing; coconut oil offers so much promise, that our not doing something to advance this would in my mind be tantamount to a crime. This is the future of our family. We will proselytize the mission to everyone we can, everywhere we can.
Health Impact News Editor Comment: I asked Raul how much coconut oil Catherine eats, as I know others would be interested in this information, and here is what he said: “She takes 2 tablespoons 4 times per day. We have tried several dosing regimens this seems to be what works the best. Important to take her first dose soon after waking up since it seems to take 60 to 90 minutes to metabolize.”
Although it’s great to celebrate the big achievements, it’s also important to celebrate the small wins.
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