MRI Results

This morning, I got the results of the MRI of two weeks ago.  The results are that my brain has been stable over the past year.  The VA has passed the results to my neurologist, and she will review their implications with me when I see her for my annual evaluation at Harborview in June.  (I go to the VA for the insulin study, and I go separately to Harborview for my normal neurological care.  So they need to coordinate, and they do that.)

The radiologist report stated that there was no measurable change over the past year.  They remarked that the evidence of atrophy (mainly volume loss) noted previously remains.  

That's certainly good news, but I was hoping for better.  I was actually hoping for the increase in hippocampus volume that has been noted in some studies relating cognitive decline to aerobic exercise.

Six months remain for the insulin study, and I am now using the real thing.  I'd like to see MRI results after this six months, but no MRI is scheduled.  I likely won't have any more, because there are no more in the research protocol, and the insurance company won't see a need for another one at Harborview.

 

Alzheimer's Disease Risk Factors

In retrospect, I could have improved Beating the Dementia Monster by including a list of risk factors for AD.  So I am providing a list here.  I discussed most of these in the text, but it's also helpful to be able to look at a simple list.  So here it is:

Risk factors you can’t control:

• Age – The older you are the more vulnerable you are.
• Gender – Women are more likely to develop the disease, but there is controversy over this as a risk factor.
• Down syndrome
• Family history – Genetic predisposition.  Some genes increase risk while others are deterministic.  People with deterministic genes develop AD in their 40s or 50s (“early onset Alzheimer’s disease”), but this condition is rare.

Other, sometimes modifiable risk factors in no particular order:

• Diabetes
• Poor diet
• Sleep apnea
• History of smoking
• History of alcohol abuse
• Head injury
• Sedentary lifestyle
• Social isolation
• High stress lifestyle
• High blood pressure and cholesterol levels
• Obesity
• Low levels of formal education
• History of depression

Waiting on the MRI

With the matter of the placebo vs. active drug settled, the big unknown for me is the MRI.  I had the MRI last Wednesday, and they said I'd likely see results soon.  But they didn't elaborate on how soon is soon.

I'm told they will compare the results from the outset of the study (one year ago) with the new results.  I very much want to know what they have to say about my hippocampus volume.  The report of my 2015 MRI at Harborview judged my hippocampus volume to be at the 30 percentile of the general population but two MRIs in February 2017 found me at the 1 percentile.  That's pretty bad.  However, they acknowledged that there is more art than science involved in reading the machine's output, and the difference may be due to technique.  My Harborview neurologist said that it's hard to say which is more accurate.

The hippocampus is where memory begins.  Memories are (hopefully) encoded there and then moved into other parts of the brain for longer term storage.  On the one hand, the hippocampus is what (apparently) is attacked first by Alzheimer's disease, but it is also where stem cells reside that can participate in neurogenesis.  When I was first diagnosed, they took note of the hippocampus shrinkage.  I think that watching it is an important key in understanding the progress of my improvement.

So I wait eagerly for the radiologist's report of this last MRI.  

Placebo!

It is now one year into the insulin trial.  We are in Seattle again to end the first phase and begin the next.  The trial is called The SNIFF Study. 

I had an MRI yesterday, and they were to give me a lumbar puncture today.  The MRI went OK, but I have no results.  They had trouble with my bloodwork results -- clotting factor slightly weak -- so I will not have a lumber puncture at all.  I'm ok not going through that, but it's still very valuable to their research.  Not vital, but valuable.  I had a lumbar puncture at the outset, and my clotting factor was barely in at that time.

So -- with the final MRI done and the lumbar puncture settled, they could unmask the drug.  The study coordinator brought in an envelope with the answer inside.  Just like the Oscars.  And the answer was:  The Placebo.  I've been snorting saline solution twice a day for a whole year.

This is good news.  It means that the spectacular improvements I've been experiencing are due solely to the lifestyle changes I've made, not to their insulin.  They will now have me on real insulin for 6 months.  I'm hoping that the insulin will be as effective as the early studies promised, and this will accelerate my progress.

There is a fear.  As I discuss in Beating the Dementia Monster, one of the characteristics of AD is disruption in the metabolism of glucose in the brain.  A risk factor for AD is Type 2 Diabetes, which begins with insulin resistance.  And this begins with overwhelming the cells with too much insulin.  This usually occurs when there is too much intake of carbohydrates, which stimulates excessive insulin production.  So it's possible that an increase of insulin being sent to the brain through snorting may cause insulin resistance and then Type 2 Diabetes.

Will this happen?  We do drug trials to find this stuff out.  Being a guinea pig has it's risks.  

What's It Like?

In chapter 2, I discuss what it's like have MCI.  What I wrote likely applied specifically to MCI resulting from Alzheimer's disease.  I discussed both sensations and issues with self-worth.  But the other day I was talking with a neighbor who, like me, has been experiencing MCI, and he's close to my stage.  He brought up something that I'd thought about, but never discussed.

He said that he was frustrated about how all of his mental functions have slowed down.  I could relate.  The slowdown was reflected in how he formulated things he wanted to say, in decision-making processes, and in many other mental activities.  I'm not an expert on this, but I would speculate that there is an analogy in the computer microprocessor.

The language of the microprocessor is a binary system of numbers.  I don't know if the brain uses numbers, but the parts of the brain must have some kind of language for communicating with each other, and it's likely analogous to the computer's numeric language.

When we learned to add a column of numbers in the second grade, we learned to "carry the one" over to the 10's column, when the sum of the ones was greater than 10.  We were taught to store that information in a little "one" that we wrote at the top of the 10's column.  In the same way, the microprocessor must temporarily store information in very fast memory ("registers") on the microchip.  It stores the information for a very short time.  In our 2nd grade analogy, the register is where the computer keeps the 1 that was carried over from the 1's column.

It seems to me very likely that the brain must temporarily store pieces of the information that it is in the process of manipulating.  Where does it store it?  Likely somewhere that is being attacked by Alzheimer's disease.  Therefore, if damaged memory is bogging down the process of temporarily storing the information, this will, in turn, bog down the speed at which the person is able to think, reason, plan, and conduct other mental activities.  

Even More on Post Email

I re-did the "gadget" for email subscriptions, and it now works (or seems to work).  But, three things:

• If you subscribed before, you will need to subscribe again.  I had to completely delete the old feed and subscriptions.
• For some unexplained reason, there are now two dialogs.  They both seem to work, but I'm afraid to remove one of them.  I don't know if they function independently, or if they operate independently.  So use either of them if you want email updates when I post.
• For some reason, no subscriptions show up in the admin's dashboard.  Don't know why or what that means.

More on Post Emails

The email "gadget" was not working.  I deleted the code for it and started over using someone else's instructions.  Somehow I ended up with two different boxes for subscriptions.  I'm testing them both to see if either one of them works.

Post Emails

I have added a "gadget" to the blog that allows readers to subscribe and receive email notices whenever I've added a new post.  The configuration was a bit complicated, and I'm not sure whether it works very well.  I'm watching it to see, and will troubleshoot if it doesn't.

Normal Aging? Or Disease...

When I speak with someone older about my experience with cognitive decline, they often express concern about their own condition or about that of someone they love.  Like me, they will have anecdotes about the time they forgot this, that, or the other thing.  Not surprisingly, they are very concerned about it. 

We all know that, as we get older, our memory declines.  It's common for us to have a "senior moment" when we go into room and can't remember why we went there.  It's natural and normal for the human brain to atrophy with age, and memory with it.  But disease introduces an entirely new phenomenon, and the atrophy of the brain accelerates.  So how do we know when memory issues are just a matter of normal aging and when are they a consequence of disease?

The best explanation that I've found is that when you have trouble recalling a word you want to use, or you can't remember a name that you've known before, this is likely normal aging.  But if you have trouble learning something new, this is likely disease. 

I have a friend who is 94 and is still as sharp as a tack.  But five years ago I saw him struggling in conversation when he couldn't recall words he wanted to use.  At the time I thought he had Alzheimer's disease, and he was in a waterfall decline.  But to be as sharp as he is now strongly suggests that his difficulty in recalling words was really just normal aging.  He didn't get better, but he has not experienced the accelerating decline into dementia typical of Alzheimer's disease.

I began learning Spanish in 2008 and worked hard at it for several years.  My sense was that I was initially building my vocabulary at a reasonable rate.  I have continued to work at it until today, but it has been an up and down experience.

I first began to believe that something might be seriously wrong with my memory in late 2014, and I was diagnosed with MCI in March of 2015.  This is about the time that I felt compelled to stop driving, and my ability to add to my Spanish vocabulary failed.  I continued to practice, but my ability to learn new words was nonexistent.  While this is a subjective judgement, I believe that my ability to learn new words returned in early to mid-2017.

When I go for cognitive testing, two important exercises are to learn a list of words and to learn a story.  I will be given a list of 10 or 12 words to recall, and I will be told a story with many details.  I will be asked to recall the words, perhaps after a distraction, and I will be asked to recall details of the story some time later.  I believe that this kind of testing is the best measure of the progress of mild cognitive impairment.  There are other tests (e.g., copying a drawing), but at the stage I'm at, these two tests best challenge my ability to learn something new.  Loss of the ability to learn new things is the hallmark of disease.

What's happened since the book?

The book was published on February 12, 2018.  What was significant at that time was that I was nearing the one-year mark for the insulin trial that I'm on.  As described in the book, the trial lasts for 18 months.  One half of the trial subjects have the placebo, and one half of us have the real thing.  At the one-year mark, the secrecy ends, and everyone goes on the real thing for the remainder of the trial.

I'm past the one-year mark, but I still don't know which I've been taking.  They can't tell me until after I've had the one-year MRI, and there was some confusion about scheduling it.  So the MRI will be done (hopefully) on March 14.  We'll see what happens.

I'm hopeful that the MRI will show that my hippocampus volume is coming back.  A year ago, it was at the 1 percentile of the general population.  However, research has shown that regular exercise can cause hippocampus volume to actually increase, and I'm naturally very interested in this result.

Earlier this week, I went for one-year testing for the trial.  They administered a physical exam, administered cognitive testing, and tried to give me a lumbar puncture.  (They will be examining spinal fluid for beta amyloid and tau proteins.)

So the physical exam included blood work.  It covered many things, but it found that my clotting factor wasn't optimal.  This led to postponing the lumbar puncture.  They already had the IV in before they got the final results on the blood work and made the decision to postpone to March 15.  The hope is that the clotting factor issue was transitory, and we'll get better results of we try again.  As it turns out, March 15 is our son's birthday, and it will be good to be in Seattle then.  (Our three children, our daughter-in-law, and our granddaughter all live in Seattle, so these visits are also family events.)

So how did the cognitive testing go?  I did not have the spectacular results that I had in November, but this can be explained without blaming the disease.  The night before, I stayed up quite late in a fascinating discussion with our oldest son, and I was quite exhausted the next day.  I'd likely have done well if the testing had been done early in the morning, but it was after lunch.  I was not at peak alertness.  My sense was that I did not do terribly, but it wasn't like November.

My recollection is that, in the list of (I believe) 10 words, I recalled seven or eight.  Recall that, in 2015, when I was drilled repeatedly on three words, I could only recall one a few minutes later.  I have come a long way.  

Getting Started

I published my book on Amazon on February 12, 2018.  Click here.  Since then, I have been learning about how to promote a self-published book, which turns out to be a challenge.  People won't buy it unless it shows up early in search results in "dementia" or "Alzheimer's."  So I will likely need a promotion to get more sales and get it up.  I'm hoping to do that soon.  First, I'll need to make sure I have sufficient number of favorable Amazon reviews.  We'll see how this goes.  I really believe that what I have to share is valuable, and many will benefit from it.  This is especially true for Baby Boomers.