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Sunday, July 31, 2011

Point Of No Return - Crossing The Rubicon ...or RUBYKON, as the case may be

The idiom "Crossing the Rubicon" means to pass a point of no return, and refers to Julius Caesar's army's crossing of the river in 49 BC, which was considered an act of insurrection. Because the course of the river has changed much since then, it is impossible to confirm exactly where the Rubicon flowed when Caesar and his legions crossed it. Since someone else already had taken the license plate, I spelled it RUBYKON. A nice plate for a red Rubykon.

Yeseree! That is a trail. The Bracken Fern was as tall as my Jeep.





Affectionately known as, "Ruby"
So I got to thinking. Always dangerous for someone with FTD. Ya never know where it might lead.

I figured I needed a vacation. I also figured I might not be able to take one next year, or the next. My future is very uncertain. So, somehow I got motivated. Actually someone else motivated me to get my butt in gear, and finally make a trip up North into Michigan.

So, my Jeep was coming off its lease. It is expensive, and has a huge carbon footprint. Yeah, but I love it. It is red. It is the most fun I have ever had driving. Well, due to some deceit by a formerly trusted friend, I was no longer able to get the financing approved to refinance my Jeep at the end of its lease. This was unfortunate because it had about $12,000 worth of equity in it. The dealership was more than happy to get it back, and there was no motivation for them to extend me any breaks. They were looking at a hefty profit when they resold it, and I would take the loss.

So, I figured I might as well take my Jeep up into Michigan, go off-roading, and beat the snot out of it before I had to give it back. Seemed like a good plan to me. And so it was. And so I did.

I planned the whole trip myself. I only got lost once - kinda - my GPS had me going in circles for a little while until I figured out that I should do what it was telling me to do, and not what I thought it was telling me to do. Yes, there is a difference between right and left. Round trip I ended up driving about 1500 miles, and only about 60 miles of that could be considered off-road. I got to see a lot of Michigan. I started around the lower end of Manistee National Forest near Fremont, spent a whole day exploring Manistee National Forest near Cadillac, and then headed on up to the Upper Peninsula to the Pictured Rocks area, and the Hiawatha National Forest.

The trip was a total success. I broke my Jeep, and had a great time. I ended up coming home early because the shifter for the 4WD became disconnected from the linkage to the transfer case. In short, my Jeep wasn't a Jeep anymore, so I packed it in. I was so far out in the boonies that the nearest dealership was 450 miles away, and it was about the same distance to get back home. So, that morning I got my feet wet in Lake Superior, that afternoon I was wading in Lake Michigan, and that evening I was floating around in my pool. Long day.

I got back, and figured I had to fix the Jeep. While I had it in to the service center, I decided to test-drive a few new cars. I tried a Compass, and a Liberty, and a couple others. That was enough fore me. They were ...ummmm ...how to put this nicely. Sub-standard? They were definitely NOT a Jeep Wrangler JK 4 door Rubicon!!! I am spoiled. So, I talked to the new car sales person, and she managed to get me financing. It cost me more than I would have liked, but it is the price I had to pay for someone else's actions. Lesson learned. I kept the Jeep. The repairs needed are minor. A bushing fell off the bottom of the shift lever, and a cable became disconnected so I could not shift into 4WD.

I do not know how much longer I will be able to drive. I have discussed this with my doctors. The best evaluation is from my Neurologist. When he saw what I was driving, and that it is a 6-speed manual transmission, his comment was, "You will have trouble driving it, before you can't drive." I think he is probably right. In any case, I am doing OK for now. I am very careful.

So, that is how I spent my Summer vacation. So far... and the best part is that except for gas one can visit the National Parks for free. Camping is allowed almost anywhere as long as you are 200 feet away from the roads. I hope my vacation pictures weren't too boring. I kept the top up on the Jeep because the flies were bad, and the temperature was around 96 degrees with a heat index in the hundreds. I have air conditioning. Sweet Jeep!


Mud! Mud! Gotta love the MUD!!!!

End of the trail. Literally! Had to turn around, but not before a good cigar and a mug of Stout.

Lake Superior. Minor's Castle is the name of the rock formation.

Minor's Falls. The only one that is is legal to hike down to, and get under. Yes I DID!

Lake Superior. I was here in the morning, and home that night.


Comments and questions are welcome.

The Roller Coaster - Medication Update

Yeah! Kinda like this... only FAST!
"Fun is like insurance. The older you get, the more it costs."

I went for 16 days without any medication. This is because of a lapse in my insurance coverage. COBRA is a really expensive pain in the necessity. Everything finally seems to be caught up ...for now.

The first few days were OK. I really didn't notice any change. I was thinking, "Maybe I really don't need to be taking all this stuff anyway."
Hah! Shows what I know.

The "stuff" I am referring to in particular is Aricept 23, Namenda, and Ritalin. Quite a mental cocktail.

Before the first week was over, the changes started. I did not have any noticeable physical withdrawal. Yay! But wait! There's more.

I will try to describe what it felt like to me. Imagine you are on a roller coaster. A really fast, high, furious roller coaster. We have all been there at some time or other. Hanging on for dear life as the coaster careens down and around, and maybe upside down. Slamming our bodies right and left, up and down. Weightless, then extra gravity. It only lasts a few minutes. Then it is over.

What do you remember of the ride?

What kind of trees were nearby. Were there houses. Was it a sunny day? Birds? Who knows. Everything went by to fast to notice. All you can concentrate on is your hands gripping the bar, and the sensations, and maybe forcing yourself to let go now and then, and wave your arms in the air like an idiot. You may remember the coaster. It was probably red. Mine always was.

Well, that is kinda what it was like without the medications. The whole world was coming at me so fast all I could do was hang on. Either that, or I was moving so slowly that it seemed like the whole world was moving faster. Not much difference from my perspective.

I don't remember much of the 16 days I was without my medications. Seriously. When you are on a roller coaster how much of it do you remember afterwards? Not much of what was going on around you. Just you, trying to "get through it."

So it was for me. I obviously am not a roller coaster thrill seeker type. I got through it. My way of coping was to close the doors, and hibernate for most of 2 weeks. I think it was my way of limiting the external stimulus. Cutting down the stress levels. I guess it worked.

So, after 16 days, I got back on all of my medications. I suppose I could have eased back into them, but I figured my body would remember, and I would not have all of the side effects like I did when I first started taking the medications.

I was sorta right. I had a couple rough days, one in particular the day after I started taking all of my medications again. Most of my problems were gastrointestinal. I never made it out the door that second day. I never made it off the couch. I caught up on a lot of TV programs I had recorded. It was fine. I got through it. I really don't think my friends had clue what was going on, and at the time I really couldn't explain it to them.

Being without the medications was very informative. I learned that the Ritalin does help, and that it helps a lot. I was thinking of discontinuing it. It is actually what made things bearable for me. I had an extra months supply, and started taking it after the first week when things got really hard to cope with. The world was coming at me too fast. I took the Ritalin, and the world slowed down, or maybe I sped up. It was as if it anchored me to my surroundings, and I could function.

I also learned that my initiative is worse than a year ago, and my attention deficit is a major impairment. My cognitions didn't change much - I could still do mental arithmetic - but my Dysexecutive Syndrome is probably slightly advanced overall. But I also learned that I could still cope. I got through it.

I have been back on my medications for a couple of weeks now, and things are back to normal. I now realize just how dependent I am on these medications - none of which are approved for FTD. Well ...I approve of them!

Comments and questions are welcome.

Thursday, July 28, 2011

The Keto-Dementia Diet

“What? Ridden on a horse?'
'Yes'
'You're using coconuts!'
'What?'
'You've got two empty halves of coconuts and you're banging them together!'
'So?”

                    ~Monty Python

The Dementia Weekly web site has several articles on this diet. I tried working some Coconut Oil into my regular diet last Spring, and will do so again after my next shopping trip. It has no taste, and is not thick or greasy, so it can be added to almost any hot food. It melts at a very low temperature. I gotta repeat this - it has no taste. It floats on top of hot beverages, and that is pretty disgusting no matter what claims are made about it dissolving in coffee. Coffee is water, and oil is oil. Go figure! It would be fine in soup, though.

The Keto-dementia Diet, usually known as the ketogenic diet for people with dementias such as Alzheimer’s, is based on the science of ketosis. Ketogenic diets have been in clinical use for over 80 years.

Glucose
Glucose is our brains' primary energy source. Like an athlete too weak to run due to hunger, a brain with too little glucose can experience cognitive decline. That means a person will have problems thinking and remembering.

As our brains age, they "burn" glucose less efficiently. Furthermore, research has shown that a drop in glucose metabolism usually occurs in people with dementias such as Alzheimer's. This glucose-drop often occurs years before people begin to exhibit symptoms.

To address this problem, scientists began studying ketones as an alternative energy source to glucose.

Ketones
In 2008, the medical journal "Neurotherapeutics" published the study, Ketone Bodies as a Therapeutic for Alzheimer's Disease. The groundbreaking research demonstrated the brain's apparent ability to use ketones as an alternative energy source.

With this new evidence regarding ketones' benefits for the ailing brain, scientists began taking a closer look at the "Ketogenic Diet." The ketogenic diet activates the "ketosis" process in our bodies, generating these energy-giving ketones.

Indeed, researchers found the ketogenic diet to have neuroprotective effects, breathing new life into brain cells. In uncontrolled clinical trials and animal studies, the ketogenic diet provided "symptomatic and disease-modifying activity in a broad range of neurodegenerative disorders."(1) This includes:

* Alzheimer’s disease
* Parkinson’s disease
* Traumatic brain injury
* Stroke (Vascular dementia) (1)
* Huntington's Disease(2)
* Lewy Body Dementia(3)

Axona®
The ketogenic diet is complex, usually involving a professional nutritionist, such as when it is administered for its proven benefits for epileptics. When not strictly supervised or adhered to, it can have undesirable side effects.

To make its benefits more accessible to the millions of people with dementias such as Alzheimer's, the biotechnology company Accera introduced Axona®.

Axona® is a brand-name high-quality FDA-recognized prescription-only medical food. It comes in clean, easy-to-use one-a-day packets. For those who can afford it, clinical trials have shown it to be a promising supplement. At about a hundred dollars a month, though, it is not for everyone.

MCT
The most important ingredient in both the ketogenic diet and Axona® seems to be MCTs (Medium Chain Triglycerides). MCTs are one of the quickest and easiest molecules for our liver to convert into ketones. Fortunately, they are available in a variety of foods.

Coconut Oil
Virgin coconut oil is available at health food stores, food co-ops, many grocery stores and even on Amazon.com . It is inexpensive and contains about 60 percent MCTs.

The most famous advocate of coconut oil for dementia is Dr. Mary Newport. Dr. Newport almost gave up hope on treating her husband's Alzheimer's. After doing her own research, she began giving him a daily dose of coconut oil. He showed immediate improvement. After two years of regular use, she has carefully documented that he:

* improved dramatically
* jogs once more
* reads again and remembers what he read
* gets distracted less
* has had a stable MRI for the entire two-year period.

Dr. Newport says, "I do believe that, overall, the use of coconut oil has taken us back in time at least two years. I don't know if we will beat it, but we have at least gotten a reprieve from this disease."

Coconut oil dissolves easily in anything from coffee to hot breakfast cereal. Although it is an ordinary food that does not need a prescription, taking a lot of anything can have side-effects or interactions, so be sure to ask your doctor.

Tuesday, July 12, 2011

Busy Summer, And No Medications - Yipes!

Well, it has been a while since I have written anything. For me it does not seem very long at all. It feels like a week or maybe a little more. It is only when I look at the calendar, and see the date of my last post that I realize it has been over a month. That is how what I refer to as "time compression" works. Things in the past don't seem as far back as they should because so much in between is "Missing Time".

There are several reasons I have not written as often. First, it is Summer, and I am lazing in the pool, gardening, and enjoying the nice weather.

Second, Nemanda. This is one very strong medication. Once I reached the full dose around the beginning of June, I felt "stoned" all the time. I was content to laze in the pool, and watch the Fabbits, and Hummingbirds from my deck. I was woozy most of the time, and very unsteady walking. I did not feel comfortable driving much at all. After about a month it got better. As with the Aricept, the side-effects went away as my body got used to operating under the influence of the drug.

Third, my insurance lapsed for a few weeks when I had to switch to COBRA, and I did not take any medications at all. No Aricept, Nemanda, or Ritalin. Cold Turkey! I was only without medications for 16 days, but it seems to me much longer. The opposite of "Time Compression", but I remember very little from those 16 days so there is still plenty of "Missing Time". Time just dragged on, and on. I was incapable of doing any serious writing during those couple weeks.

I started my medications again yesterday, and am hoping my body will remember them so I won't have to endure all of the side-effects again. I want to write more on this whole incident with the insurance in the near future.

Fourth, I have had a lot of pain in my right foot. I guess it is time for me to finally see a doctor about it because it is starting to limit the few activities I have.

For all of those who were concerned because I hadn't written in a while, "Thank You!" I am as well as can be expected, and maybe even better.

Some days are better than others.

Comments and questions are welcome.