Please Share: Someone, you may know, with Younger-Onset Alzheimer's

Please Share

Someone, you may know, with Younger-Onset Alzheimer's

It was in 2011 and 2012 that I began to notice. I can't give an exact date since, unlike other ailments, there is no specific time to pinpoint; no doctor visit where you hear the dreaded word ”cancer” or, like me, “heart murmur.” In those years, I would talk for hours about work, running, or our travel plans, and I started to notice that, from time to time, Catherine would ask me a question that seemed a bit odd. I just chalked it up to my big mouth: there I go running off at the mouth and all she was hearing was blah, blah, blah. But that was the first clue. 

I had taken a job that now required me to travel more than usual, so when we were together, I felt compelled to bring her up to date on all that went on while we were apart. She would  listen, but more and more, she would ask questions to which I was sure she knew the answer. As time progressed, I started to make comments to her about asking the same question twice, though it was not all the time and it was never more than a few times on a specific topic.

Just prior to my heart valve surgery, Catherine had gotten a new boss who was a very shake-things-up type of guy. Her routine was her cornerstone, so stress at work went way up. Over time, we became increasingly convinced that she might lose her job, since her boss had now put her on probation and entered her into an employee improvement program. 

That is when we started actually going to doctors to try to figure out what was going on. Some test were done to rule out other possibilities. After a cognitive test that lasted several hours we were now starting to put the pieces to the puzzle together. 

While in the hospital for my surgery I really started to notice something serious: Catherine was staying at a nearby hotel, sometimes she would forget to call me when she arrived at the hotel or would take several hours to get back to the hospital.  Catherine can always recall things in the past way better than I, but it was what happened yesterday or earlier that day that was unavailable for instant recall.

After my surgery, it slowly became a reality that Catherine was going to lose her job one way or another, and we now had quite a bit of documentation concerning her condition. The diagnosis given, since she was 53 at the time, was Younger-Onset Alzheimer’s.

I am sure that some of you are very surprised to learn this, which is why we think it’s so important to share: in other words, there might be folks around you that you would never know that they have this condition, especially in the early stages. Our hopes are that our story will find its way to someone that would find this information useful since we strongly believe that the sooner the better is the best policy.

Now I must make a disclaimer. Neither of us are experts on this subject and I do not plan on giving a lot of facts and figures. This is about what we feel to be true: 

The Importance of Social Engagement

As time goes on people with this condition have a tendency to withdraw socially but we have found that it is very important to keep engaged. The social interaction helps to make stronger  connections, and, in turn, stronger memories. She might seem a bit aloof, at first, but her smile is captivating, she knows no strangers, and as a pet and baby lover she is very easy to talk to.  She loves telling others about our adventures, and I fill in the details when asked questions to which she may not know the answer. It’s important to note, though, large groups can be problematic since multiple conversation can come in as simply white noise.

The Importance of Early Detection

I cannot stress enough the importance of early detection.  It is not very obvious at first, but if you suspect that someone close to you is struggling, get the testing done. As in Catherine’s case, documentation can protect one from losing their job.  Like many others disabilities, there are benefits available, but first you have to prove that such a disability exists.

Treatment plans are based on getting them started as early as possible since there is presently no cure. Such treatments don’t restore the damage already done but simply reduce the symptoms of Dementia.  

Presently Catherine is taking the following:

Escitalopram, 20MG

Donepezil (more commonly known as Aricept), 10mg 

In addition to pharmaceutical remedies, there are all sorts of supplements on the market to increase brain function and we have tried most of them, including vitamin B-12, C, D3 and E; turmeric; resveratrol, coconut oil, peppermint oil, and probiotics.

Some of you might have heard Catherine talk about a book called The Grain Brain: The Surprising Truth about Wheat, Carbs and Sugar—Your Brain’s Silent Killers.  The premise is that there is a connection between your gut and your brain, and that Wheat/Gluten can cause an array of cognitive issues.  It is one of the reasons that she is gluten-free and the book in general, is a great read. 

The Importance of Having Fun

You read all the time about the benefits of red wine, but some studies even suggest a shot of whiskey has benefits for the brain.  Moderation is the best course of action, though, as the more you drink the more you forget.

We are also firm believers in the benefits of travel, as we feel that exciting new experiences go into the long term memory unaffected by the condition. When an individual sees the same thing everyday, these experience go into the short term memory part of the brain and there it disappears.  Their partner comes home and asks, “What did you do today?” and the answer is, “I can’t remember.”  The frustration begins for both and the spiral downward is reinforced.  

Don’t get me wrong, I am not suggesting that the answer is to Run All Over The World. It can simply be a 5K in a nearby city and a visit to a monument or museum, but the premise is that exercise coupled with a memorable experience is the key. 

The Importance of Dedicated Support

Support might be the most difficult for me, as you have to be all in and realize that you probably will be together 24/7. I am not the type of person that rushes to others for aid. However, leaving the affected person home alone only accelerates the progression of the disease, and in such cases, you won’t be there to see the signs until it is too late.  Additionally, the affected person may need assistance financially, with work, and with medication: I have seen there is a difference when Catherine misses a dose or two of her medication, and this is when the partner needs to take an active role. Furthermore, it is good to have someone to encourage social involvement when the affected person wants to withdraw.  

Much has been said about support groups, too.  I have gone online several times looking for support groups, but frankly, we have been too busy enjoying life to take advantage of them, so here I will just say that it is very important to support loved ones with this condition.

Sleep and Exercise

The last two are critical, the first one being exercise. Catherine and I try our best to get some form of exercise everyday, as it stimulates the brain and the sense of accomplishment goes along way when other things in life might not being going as planned.

The second is sleep. With Younger-Onset Alzheimer’s, deposits of beta-amyloid protein fragments (plaques) and tau protein strands (tangles) form in the brain, causing nerve cell damage.  While Catherine sleeps, however, some of these plaques and tangles are removed, so I try my best to make sure she is able to get 8-9 hours of sleep a night. 

Some of you may be asking, why are you Running All Over The World, given Catherine’s condition? Very simply, we have decided to see as much of the world as long as we can and to stay fit at the same time. Constantly changing environments seems counter-intuitive, but it is our belief that all the exciting destinations and new friends along the way help to form long term memories since that part of the brain is not affected.

And what about what I call “the blue days?”  Make no mistake, there will be bad days, and I can’t say I have the perfect solution. Simply saying, “I love you,” will not always work since, from the point of view of the affected loved one, they are a burden. I recorded a voice memo for Catherine to listen to on those blue days, and have our song, You and Me, by the Dave Matthews Band playing in the background. Two lines in this song really sets the tone for us:  When we get to the ocean, going to take a boat, to the end of the world, all the way to the end of the world. You me together, we can do anything.

By now some of you may be wondering what to do with this information.  First, talk about it with people you may know and share this information with others that might have the same situation at home. Give them my contact information listed below so we can then network and share best practices. There is plenty of information available at ALZ.org as well. As I said before, the earlier the better since the present drugs simply reduce the symptoms of Dementia.  

For concerned family, friends and acquaintances, rest assured that nothing really has changed.  You can email me at flyprkr@aol.com or Catherine at ceapopp@gmail.com.  If you have a particular question I would be more than happy to answer.  No tears please, though prayers would be greatly appreciated.  We ask that you don’t feel sorry for us because, as you can see, we are really enjoying life.  The usual hug would be nice the next time we see each other, but try not to dwell on the situation. Our long term plan is to keep going till a cure is found, and until then, we are going to see as much of the world as we can.