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.

Why Would Anyone Go To Tele Aviv To Run A Half Marathon?

Why Would Anyone Go To Tele Aviv To Run A Half Marathon?

A couple of answers come to mind, in no particular order.

Because I can.

Sounded like a good idea at the time.  That one has gotten me into plenty of trouble over the years, but that is a book in itself.

Because it was on the calendar of Marathonguide.com, the road racer's bible.

Had a tough race schedule last year so wanted to start off easy.  8 marathons, 3 half marathons and 1 very hilly 21 miler.
Great training for this years marathon schedule.  5 marathons and 6 half marathons, so far as I know.
Blog says Run All Over The World.   I did not say how long each run might be.

Because I had some miles and points to use.
Because we don't have a home and have to be somewhere.

Well I am sure I will be asking myself that question plenty of times between now and when we get back in a week.  

The trip to Tele Aviv is like an endurance race itself.  I figure it will be about 27 hours from the time we checked out of the hotel in Atlanta to when we check back in to another Marriott hotel.  A mere 6,420 miles apart.  Even with a late check out we were on our way at 2 pm, so since it was National Margarita Day we stopped by Chili's for happy hour.  

Cheers

With a 8:40 pm departure, it was now time for us to walk the entire length of the ATL airport to concourse F.  3 hour stop in the Delta lounge and off we were on time to CDG, Charles De Gaulle, Paris.  This is my least favorite airport.  I actually left my oldest son, Aaron, there one day, after he missed our flight.  Maybe I should write a book.  I never schedule less than 2 hours to make it thru that maze but 6 hours was a bit much.  Just my luck, we were at the gate in 45 minutes so time to walk the terminal.

Cheers

The Air France lounge in concourse L has showers, so far so good.

The world has changed a lot since I was a kid.  A trip overseas was a piece of cake but now it is a totally different story.  Each airport has their own way to combat terrorism and as I have often said, "I really don't care what they make me do, just as long as the plane does not blow up.  You hear folks complain all the time, but I like the fact that they keep us passengers guessing.  Better safe than sorry, is my motto.  Our flight to Tele Aviv was 45 minutes late.  A passenger did not make the flight so they had to dig in the baggage hold to pull their bag.  Not sure how a bag makes the connection but the person does not.  Back to what I said early, "just as long as the plane does not blow up."

The terrorist wants us to stay home and fear the world but not I.  I refuse to stop doing what I love to do and going to Israel is another example for my list at the beginning of this blog.  Not only that, they were the ones that invented airport security.  It should be interesting to see it up close and personal.  I must admit I will keep my eyes open and also very aware of my surroundings.  I think I might even start the race from the back of the pack.  More about that later.

Customs and immigration was one of those examples where you always pick the slowest line.  The lady we were in line for gave everyone the 10th degree.  "Why are you here, where are you staying, for how long, let me see you return ticket."  The other folks were only getting stamps and smiles in their lines.  No problem, I was prepared and as always, one question and we were on our way in seconds.  That question being, "why are you here?"  "To run the half marathon on Friday",  I think she was impressed.

Check in at the Renaissance Hotel, a Marriott brand hotel, Duh, was smooth as silk.  I decided that the title of the Trip Advisor review will be Location, Location, Location.  I will insert the review itself, when done, later.  Suffice to say, for now, it is on the beach of the Mediterranean Sea and smack, dap in the middle of it all.  Plenty of runs along the sea are highly anticipated.

View of the Med from our balcony

Catherine is in Doggie Heaven

This was a first for me.  At the packet pickup a gentleman walked up to me, while I was getting Catherine's race number and asked me for my name.  He was showing me his ID and kept saying, "I am with the police and I want to know your name."  Pretty strange, I am use to people asking me how tall I am, "do you play basketball" and "are you someone famous but simple", what is your name was new to me.  He was dressed like everyone else in the place picking up their race numbers, so it took me a moment for it all to compute.  I gave him my full, nice and long, name, and just as fast he appeared, he was gone.  Welcome to Israel.

When you first turn on the TV in the hotel it is qued up for their commercial that plays on a loop.  Showing some of their great hotels all over the world and they use the banner,

Live Life to Discover

In the background a song is playing called Eyes Be Closed by Washed Out, one line sticks out to me.

See the world clearly now

All very appropriate for me at the time.

Here is the review

Location, Location, Location

This hotel is well situated in the heart of Tele Aviv and right on the beach.  I would have preferred a mini fridge instead of a mini bar but the Club Level Access more than compensated.  The A/C and heating system leaves a lot to be desired since there were only three switches for low, medium and high fan speeds.  Once again the balcony view of the meditraien sea and the surrounding beaches more than made up for it.  A very healthy breakfast buffet was included with a state of an art fitness center kept the calories in check.  An added benefit was the full size pool long enough for laps and there is an Olympic size pool, which is large enough to accommodate several dozen people at a time, within walking distance.  The Tel-O-Fun Bike rental system station, right down the street, made it effortless to get around town easily.

The next day we were off for a full day tour of Jerusalem.  The pick up at the hotel did not go well, with our tour guide not having our names on his list and leaving us behind.  To make it more confusing their were a number of tour guides that came by to pick up guests, at our hotel, so it was hard to know who our guide exactly was.  I was well prepared and when the designated time came and went, a quick phone call to the tour operator, was all that was needed for them to dispatch the tour bus back in our direction.  

It was a hour drive to our panoramic view of Jerusalem from the Mount of Olives.  We also had a great view of Mount of Mariah, where Jesus was crucified.  From there we stopped at Mount Zion to visit King David’s tomb, the room of the Last Supper and the Dormition Abbey.  Another short ride and the walking tour continued with a visit to the Old City and walk through the Armenian and Jewish Quarters to the recently excavated and restored Cardo, the Roman Road.

View from Mount of Olives

View of Mount of Mariah, my daughter's name

We went on to see the Western Wall and continued to the Christian Quarter and walk along the Via Dolorosa and visit the Church of the Holy Sepulcher.  After the Old City we went for a nice leisurly self guided tour of Yad Vashem, the memorial to the Holocaust.  A number that will forever stick in my mind was that of 1.5 million children that had perished one way or another.

The Last Super Left and where Jesus was buried right

The one way road back down the mountain was harrowing but the entire trip was well paced.  We had a quick 20 minutes for lunch in an area that reminded me of the Grand Bazar in Turkey.  Did not much like the 30 minute stop, at the tour guides designated store, for us to buy souvenirs.  Since we are on the road all the time, if we can’t eat it or drink it, we don’t buy it.  This is typical for all tours, so you kind of get use to it.  Over half the people in our group bought something, so I guess it was worth the stop, for them, at least.

The packet pickup was within walking distance from our hotel but getting to the start was going to be a bit tricky.  Since all the roads to the start were closed, a taxi would only get us but so close, so that was an option, but not a very good one.  The train stop was near the start and finish, but the nearest station was over 2 miles away.  Walking the four miles was also an option, but the suggested Tel-O-Fun bike, rental system, seemed to be the best bet.

There was a station on the way to the start, so with a swipe of a credit card, we were on our way.  They charge a daily access fee and then start charging for usage after 30 minutes.  So if you get it to the next station by then you are only charged a small fee for that day.  They had a large holding pin, set up at the start, and you were able to check the bike in and then check out another bike and take it back to the hotel area.

That was simple enough and was a good four mile warm up and cool down before and after the race.  The race itself was fantastic.  One of the best I have ever done and I am really starting to prefer half marathons over full marathons.  No real issues with the body and recovery was a snap.

They stagered the start in two different sections, for each race, and wave within that race.  The Marathon started first and the 10K was right after them.  There was a 5K that started about the time we were finishing up with the half. 

All smiles at the start

We decided to start at the very back of the pack for several reasons.  I figured if anything strange was to happen that would have already had occurred before we had even arrived.  I felt very safe but with all that is going on in the world, better safe than sorry.  Also a very good friend and running coach, John, Then Penguin, Bingham, has always talked about starting at the very end of a race.  

We had plenty of time to complete the half so I figured this would be a good race to do so.  I have done it before and it gives you a different perspective.  You get to see all of those that this might be there first attempt at such a distance and you are able to give them the much needed encouragement along the way.

For us, since we were only doing the half it solidified in my mind why I might want to take the time at age 60 to start the transition from full marathons to half marathons from now on.  It was not a pretty site seeing those, that are typically me, trying to get across the finish.  I use to say I have a love, like relationship with the two distances.  I like half marathons but I love the sense of accomplishment after completing a full marathon.

There was plenty of support along the way and our course took us right by our hotel twice with several miles being along the road adjacent to the beach.  There was not a lot of fan support but I figured with all the races they had going on that day everyone must had been running or walking in one.  The race is held on a Friday simply because Saturday and Sunday, with road closures, was out of the question.  Sunday is actually the start of their work week, with Friday and Saturday, being their weekends.

They are big into their pubs, in Tele Aviv, so there were several nearby giving me plenty of opportunities to enjoy my two favorite beers, Kilkenny and Guiness.  Something else, that was a stand out, for me, was their cocktail bars where they take pride in mixing some one of the kind drinks.  We found two of such, the first one being a place called Moonshine.  All of their drinks were based on the moon shine concept and with happy hour we were able to sample four different drinks and they all seemed to come in different, very unique glasses.

Since I could not decide, left one first

Corn on the cob inside the drink and popcorn around the glass

The other one was called Imperial Craft Cocktail bar and it is actually suggested that you have reservations.  The place holds about 30 and lucky for us there were two seats available at the bar for about an hour.  That was plenty of time for us, since we had an early departure the next day.  They had one champagne type drink called Honey Bunny.  I had to send a message that included a picture and ingredients to Millie Orr since that is her pet name for her husband Capt. Jack, whom I worked with, in Miami.

Catherine favorite was Smugglers Crusta, I am going to have to do some research on that one.  They say it was their version of a whiskey sour with the glass covered on the outside with sugar.  Catherine got caught licking the glass clean.

The Brandy Crusta was originally made with Cognac but can also be made with brandy, bourbon or rye whiskey. It’s also one of the few cocktails that you garnish before making the drink.

2 oz. Cognac
1 tsp. orange Curaçao
1/2 tsp. fresh lemon juice
1 dash Angostura bitters
Tools: shaker, strainer
Glass: cocktail
Garnish: sugar rim and lemon curl

Cut a lemon in half. Pare the full peel off half and squize the juice from the lemon. Prepare a glass by moistening the rim with lemon and dipping it in sugar, then carefully curling the lemon peel around the inside of the glass. Combine all ingredients in a shaker with ice, shake and strain into glass and add 1 small cube of ice.

Her's was made with Rye Whiskey and powered sugar all over the outside of the glass without the ice cube.

Thriller had to get in the act with Smugglers Crusta on the left and Honey Bunny on the right

This usually does not happen but I must say, 7 nights, was just not long enough.  The people are incredibly friendly.  It was kind of odd, in a way.  They seem to be in their own world, speaking Hebrew, but when asked a question they spoke some of the best English and went out of their way to help you.  There were to many examples to list here, but it was a pleasant surprise to be on the other side of the world, but in many respects, to be that welcomed.  Yes, you had a few that were not so courteous but that was by far the exception, instead of the rule.

We only went out once, to eat dinner, since the Club Lounge, at the hotel, provided dinner and drinks but unfortunately that meal was not so good.  They, Fitzroy, was across the street from the hotel, got very high rating from trip advisor.  Since I do a lot of reviews on them, I was very surprised.  

The gentleman mixing the drinks at Moonshine asked me to review them, which I did.  I find it very helpful to hone my travel writing skills, since I have pretty much decided to see where that takes me.

Here is the review for Moonshine

"This is the place if looking for some unique drinks”

Reviewed yesterdayNEW

The atmosphere was great and everyone went out of their way to make you feel at home. The drinks were great and the music was fantastic. We signed our dollar and hung it up near our table and look forward to coming back.

I figure I am going to be traveling for quite awhile so if I can get some benefit from it then no skin off my nose.  I am also thinking seriously about writing a book and presently working on moving this blog to a more suitable site.  I will be sure to flood the airwaves when that move is complete.

Well the journey back to ATL is in progress.  It started with a 3:30 am local wake up and sad face by Catherine, as we got in the cab to the airport.  I gave myself plenty of time but once again was not really needed, since it was a quick process.  They do have a check point for all cars to enter the airport property with a peak inside the cab by an armed guard.  Nothing much out of the ordinary except for just going to a machine for immigration.  There you put in your passport and got a ticket to be scanned to open the gate for you to continue on.

With two hours to spare we had breakfast at their equivalent of a Delta Sky lounge, as we waited for our 4 hour flight back to Paris.  Another 4 hours on the ground and then 10 hour flight back to ATL.   When it is all said and done we should arrive back at the Marriott at 9 pm which will be 4 am body clock time just over 24 hours since I got up.

CHEERS

Our next trip is in 3 days with another motor home tour of Florida.  The plan is to pick it up in Orlando and stay a few day in Kissimmee then south to the Fort Pierce area.  Put it back in storage after a few days and then transition to a hotel for a night in West Palm Beach.  Cross alligator alley for Bonita Springs for a few days.  Short drive up to Fort Myers for our flight back to ATL to complete our 10 day Southern Adventure.  Not to sure when I will get back down to Florida to meet up with the Motor Home, AKA, The Crib, but I am sure I will be able to find a week here and there later in the year.

The calendar is pretty much filled up but there are a few weeks that are not accounted for.  Catherine and I have decided that we are going to modify our goals moving forward.  I will do the Boston Marathon in April and that will have us both complete the 6 world major marathons, those being, Boston, Chicago and NY in the states and London, Berlin and Tokyo, internationally.  

Catherine is only 5 states away from completing a marathon in all 50 states.  May 1, we go to Colorado, since both of us need that state, but instead we will only do the half.  Our goal now being to complete either a full or half marathon in all 50 states.  I am 7 states behind her.  Then we will do a full marathon in Prague, only because they don’t have a half distance.  They do have a relay so we are going to ask if there is a way we can do a two person team.

The end of May we will go to Easter Island in South America and there, we will only do the half marathon.  Our goal once again being modified to accomplish either a full or half marathon in all 7 continents.  The only ones left will be Africa, which we will do in July and Antartica, which we will do in March 2017.

I do not usually modify my goals but as I have learned in life, especially as time moves on you have to remain flexible.  I am sure we could still do 5-8 marathons a year but the half marathon, here in Tele Aviv, has taught both of us that half marathons are much more fun and you can have much more fun afterwards.  

We will probably do at least one more in the next 5 years after the two mentioned earlier since I am a number type person and the goal of 65 marathons at the age of 65 sounds real good.  I am sure we can find one that is real special for that one.  It might be hard to find since we have done all the great ones that are out there already.  Worst case, I will just use the marathon distance I ran during the Iron Man back in 2011 to count for number 65.

With all that said I guess I will have to modify my list from above

2 marathons

8 Half marathons

Thriller enjoying one last sunset in Tele Aviv

Permanence, perseverance and persistence in spite of all obstacles, discouragements, and impossibilities: It is this, that in all things distinguishes the strong soul from the weak.

Hindsight being 20/20 I have come up with the answer to the question above.  It is a great city with outstanding people and a fantastic race