In Memoriam – Bob Kraft

Last month, Sept. 15, 2023, my cousin, Robert Alan (Bob) Kraft, passed away at the age of 89. We were alike in many ways and had much in common (as you’ll see below), but our paths did not cross much until recent years when we were co-historians of the Pierpont Family Association. His memorial service will be next week, but I’d like to write this post to honor him first, so I am not influenced by the emotions of that day.

[Bob Kraft]

 

[Bob Kraft obituary]

Genealogical Connections

Bob and I are biological 3^rd cousins. Our common ancestors are Charles Pierpont (1825-1884) and his wife Mary Ann Warner (1828-1911). My descendant line is through Wilson Pierpont (1855-1921), Harold Pierpont (1898-1969), and my mother, Sylvia [Pierpont] Russell (1924-2012). Bob’s lineage is through a series of females – Mary Ann [Pierpont] Miller (1860-1938), Margaret [Miller] [Northrop] Hall (1889-1987), and Marion Northrop [Kraft] (1912-2006).

But there is another complicated path that connects us at the 2^nd cousin level. My grandfather’s mother, Annie Merrill (1858-1898), passed away just two weeks after he was born. He was given to another family in the next town to be raised. But his father, Wilson, then remarried about 3 years later in 1901 to Anna [Root] Hall (1853-1938). Anna was a widow who had four children, then ages 25, 23, 19, and 14, from her first husband. These would have been my grandfather’s stepsiblings. One of them was George Ransom Hall (1877-1946). When Bob was only 2 years old, his grandfather Northrop passed away in 1936. George Ransom Hall also became widowed only a year later, so Margaret and George married not long thereafter. Thus, Bob’s step-grandfather is a step-brother of my grandfather, making us step-step-second cousins. Complicated, yes, but genealogy is not always neat descendant charts.

 

Wolcott Connections

The Pierpont Family Association (PFA) had begun in Waterbury, CT, with their first meeting in 1924. Mary Ann [Pierpont] Miller and her husband, Charles Somers Miller, were some of the prime movers in getting that organization started. The PFA met in those first few years at the Mill Plain Church in the west end of Waterbury. My grandparents were part of that church (they lived less than 2 miles from it) and so our family was also heavily involved in those early years.

But members of the greater Pierpont family were beginning to migrate just a few miles north into Wolcott. Wolcott had no industry nor many large farms due to its topology, so it was a “bedroom community”. It had no high school of its own, but high school age children were bused to Waterbury. Of the above families, the Root and Hall families had been in Wolcott since the late 1800s, Howard and Marian Kraft had moved to Wolcott when they married in 1931, and my parents also moved there when they married in 1946 (as did two of my mother’s siblings and my father’s sister).

Wolcott was a small town. In 1940 the population was only 1800 people. So those who lived there tended to know each other. With genealogical connections in common as well, the Hall/Kraft and Pierpont/Russell families were well acquainted with each other. Bob was 14 years older than me, so I did not know him personally at the time. I hadn’t even started school when he was going away to college. But I knew his family. His sister, Sharon, was just two years older than me. His mother was my swimming instructor when I got my Red Cross Lifesaving Badge.

So, while third cousins are often unacquainted with each other, our closer second cousin connection as well as both our families being in the same small town gave us lots of other connections.

 

Parallel Lives

Bob left Wolcott when he went to college in the mid-west. He got a bachelor’s degree in philosophy from Wheaton College in Illinois in 1955, and a master’s degree from that same school in 1957. He then got a PhD in religion and Christian origins (from Harvard). His teaching career at the University of Pennsylvania began in 1963. But when computer technology began to spread a few decades later he also had an interest in that. His obituary (above) notes that “In 1983, he helped Penn students fulfill a new computer literacy requirement that led to innovative computer science classes and groundbreaking digital application in scholarly research and information dissemination.”

Fourteen years behind him, I followed the same path. I left Wolcott and went to college in the mid-west, getting my BS in computer science from Michigan State University in 1969, then a pair of master’s degrees from that same institution in 1971. I later got a PhD in information systems. I had a 25-year teaching stint at DeSales University from 1980 to 2005 in parallel with my work in the computer field. And Bob and I lived just 35 miles away from each other in eastern Pennsylvania.

 

Reconnecting

Bob retired from his professorship at UPenn in 2003 at the age of 69. I retired just a few years later in 2007 at the age of 58. With one of his interests being genealogy and using the computer to help organize it, Bob had been involved in the PFA for a number of years as their historian. When my father passed away in 2006, I began to get interested in genealogy as well (I began my membership in ancestry.com in 2008). Thus, it was only natural that I began attending the PFA meetings where Bob and I crossed paths. It was a few years later that the PFA, both recognizing my growing interest in genealogy and Bob’s getting older, appointed us co-historians of the organization.

Bob and I actively corresponded on genealogy-related subjects. But shared email was our only connection outside of the annual PFA meeting. He had 4 children, 3 of whom lived in the area, and 9 grandchildren. I only had 2 children, but a growing brood of grandchildren that reached a total of 7 by 2014. These family interests took precedence and so we just never seemed to have the time to get together.

 

The End of the Story?

Now Bob has moved on from life in this world. But the things that we held in common are still there – love of family, importance of religion, and appreciation for the impact of growing up in the small town of Wolcott. I’ll miss sharing with him and getting his comments on my various blog entries on Wolcott and genealogy stories. And I’ll miss seeing him at the annual PFA meetings (this summer was our 100^th consecutive meeting).

Next week I’ll be driving down to Philadelphia to attend a memorial service him at the UPenn library. It’s only 2 buildings away from UPenn’s Perelman Center where I go a few times a year for my participation in various Alzheimer’s studies, so it’s a route I know well. But it will be a much more emotional time than my study visits. I hope to have a chance to talk to some of Bob’s children who also live in this area.

Thanks for your contributions, Bob. I was not aware of how much I was following in your footsteps as I grew up in Wolcott, drove to college several states away, got my degrees, then settled down in eastern PA. We’ve been a lot alike. Maybe something in our genes and in the environment we shared in Wolcott?

 

Health Update

Back in January I gave an update of where I stand in all my medical issues (see here). Having gone into a great amount of detail on my brain and heart/blood in the prior two postings, there are still three areas which need to be updated. And, unfortunately, these areas are the ones where there has been much activity over the past several months and which have thus worried me the most. Two of them appear to be resolving, but the third is still ongoing. So, without further ado, here’s what’s going on.

 

Mouth/Teeth

I had indicated in January that the plan was to remove four of my remaining original teeth (23-26) as they had been loosened by the strength of my upper jaw connected implants and to replace them with a few implants as well. Unfortunately, in doing those removals, the oral surgeon discovered that many of the other implants on the bottom, many of which I’d had for a long time, were also slowly failing. So … change of plans.

In addition to the removal of 23-26, I have also had all but the last molar implant on each side of my lower jaw removed. This is not as easy as taking out an original tooth as the implant is screwed into the jaw. Two of them could be easily unscrewed, but the other two had to be drilled around – using the dental equivalent of a hole saw. At that point I only had four bottom teeth – one implant molar in the back on each side and two (fortunately very strong) teeth in positions 22 and 27. While all the healing was taking place, I only had those four teeth for eating with for several months (no corn-on-the-cob, having to cut pizza up with a knife and fork into bite-sized pieces).

I was then fitted for a lower removable plate that will be partially anchored by going around those four remaining teeth. As I write this, the trial fitting was successful and I’m only waiting for the lab to complete making the final plate. But this should be the end of a long process. I’ll only have two teeth which are original and will need to be brushed, the remaining ones mostly get treated with a Waterpik to clean them as they have no enamel, only porcelain finishes.

 

Colon

I had indicated back in January that I was shortly scheduled for my 5-year follow-up colonoscopy and that it would likely be my last. I commented, “no big deal.” Little did I know!

Perhaps reminiscent of 2017 when I had my first colonoscopy and they found nine polyps, then requiring a follow-up in 2018 when they found one more, this one back in February found several, including one very large one. They were all removed (none were cancerous) and they marked the spot of the large one with a tattoo. I then had a second colonoscopy in June to ensure that they got everything. Unfortunately, there was another small one right where they had taken out the large one. So, I was scheduled for a THIRD colonoscopy just last week. For those who have gone through this procedure, the colonoscopy itself is not a big deal – you’re under general anesthesia and don’t notice a thing. But the day before prep is another story. I won’t go into the details here, but it’s not pleasant. And when you only have them every 5-10 years you kind of forget the unpleasantness, but when you have three in just eight months the anticipation is almost as bad. Enough said!

This last one was not scheduled in the outpatient GI location, but with a specialist in the GI center in the hospital where they have specialty equipment, etc. The after-report was about as good as I could expect. They did find one very small one in that location. But in addition to removing it, they also cauterized the area which should prevent any recurrence. However, I do have to have a one-year follow-up to ensure success. Maybe that will be my last one?

 

Foot

I had noted back in January that I just had another bout of sepsis from infection in the sore on the bottom of my foot. After that was cleared up, I made the decision (with a push from my wife) to begin taking a daily protein supplement to speed up the healing process. It worked. In May I got my new custom shoes that will help relieve the pressure. In June, my podiatrist was able to declare success and I just had a six-month follow-up visit.

Unfortunately, we declared success too early. In mid-September something went wrong – not sure what – and I got a slight tear in the skin which opened the area back up. So – back to the podiatrist for periodic checks, a round of strong antibiotics, and trying to get it to heal back up again. Things are going much faster this time – probably due to the protein supplements – but it’s a bit frustrating. Thus, while most of my other physical problems have been resolved, this one has not yet. Maybe this time will work? We’ll have to wait and see.

Heart/Blood Issues

My History

Back in January 2005 I had a major heart attack – what is known as a widow-maker. I’ve related the details of it before (see here), so I’ll not repeat them. But following that event I began to get periodic testing – not only of my heart, but various blood tests which can give insight into some of the causes of heart issues. These insights have also been the reason for most of the medications I take – which have increased and gotten refined over the past 18 years.

Below I’d like to first give a complete list of my current medications and the reason for each, then detail the particular blood tests I currently get. I’ll end by noting some of the recent invitations I’ve gotten for various clinical studies which are related to the results of those tests.

[Blood drop]

 

My Medications

Allopurinol – This is the only one not related to these heart/blood issues. In 2001 I had a VERY painful kidney stone. This stone was not the more typical calcium stone, but one that was formed of uric acid – the same component that can cause gout. In order to prevent any future gout or kidney stones, this medication reduces the amount of uric acid in your system.

Baby Aspirin – Not a prescription medication, but a low dose of aspirin can help prevent heart attacks or stroke by acting as a blood thinner to make it easier for the heart to pump blood.

Farxiga – This works by helping your kidneys remove sugar (glucose) from your blood through the urine, which decreases your blood sugar. It can help lower the risk of heart attack, stroke, kidney disease, and heart failure in people with type 2 diabetes. (It is pretty pricy and is one of the 10 drugs on the list to have the costs addressed by allowing Medicare to negotiate prices in a few years.)

Lantus (insulin) – This is a long-acting insulin and is used primarily for adults with type 2 diabetes. I’ve been taking this for over two years now and it does a good job at helping to manage my sugar level.

Lisinopril – Used to treat high blood pressure and heart failure. It is often prescribed after a heart attack and helps to prevent future strokes and heart attacks.

Metformin – Helps treat diabetes by helping the body’s cells to better use the insulin that is still produced by the pancreas, i.e. for those with type 2 diabetes.

Metoprolol – A beta blocker which lowers your blood pressure and heart rate, making it easier for your heart to pump blood to the rest of the body. I notice that when taking this that even when getting my periodic heart testing that it’s difficult to get my heart rate up very high, so it’s very effective at that.

Niacinamide – An over-the-counter medication, this can help prevent vitamin B3 deficiency.

Omega-3 – An over-the-counter medication, omega-3 fatty acids can significantly reduce blood triglyceride levels. I had been taking this in the form of concentrated fish oil and by taking 3 tsp containing 4800 mg of Omega-3 I was getting 3900 mg of the DHA/EPA (goal was about 4000) – the part that had an impact. Earlier this year I switched to a squeeze pouch product which does not require refrigeration or measuring with a spoon. Unfortunately, I mis-read the label and saw the fish oil total of 4000 mg with just two pouches. However, of the 4000, only 2400 of the fish oil was Omega-3 and only 2100 was DHA/EPA so I inadvertently cut my DHA/EPA intake to only 2100. As you can see in the below writeup on my triglycerides, this had a negative impact, so I’ve increased my intake to 4 pouches which now gives me 4200mg of DHA/EPA.

Simvastatin – Used to treat high cholesterol and triglyceride levels and thus prevent heart attacks. I’m on the maximum dosage of this and while it appears to be very effective at keeping my cholesterol (both HDL and LDL) down, it has not had much impact on my triglycerides (see below for more on this).

Trulicity – A once-a-week injectable, this stimulates the pancreas to produce insulin secretions for those with type 2 diabetes. Like Farxiga, this is pretty pricy and I could benefit if it is put on the Medicare drug price negotiation list.

 

Blood Tests

Lipid Panel

This group of tests looks at the lipids (fats) in the blood as these contribute to coronary problems. In addition to the total cholesterol, they measure HDL (high-density lipids – the “good” fats), triglycerides, and LDL (low-density lipids – the “bad” fats). LDL is generally not measured directly as doing so is quite complicated and takes many steps. Rather it is calculated through a formula. The most common formula is called the Friedewald and calculates your LDL as equal to (Total – HDL – (Triglycerides/5)).

Because of the above medications I am taking, my total cholesterol is on the low side (100-120 v. a target of <200). Also, my HDL tends to be on the low side (30-35 v. target of 23-92). None of these are a cause for concern, except as it impacts the LDL calculation. I tend to get one of two errors in my annual Lipid results. First, if your triglycerides are more than 400 then they won’t even try the calculation. But because my triglycerides are high and my Total and HDL are on the low end this calculation results in a negative number for the LDL – for example, one test I took a few years ago had my Total at 101, my HDL at 36, and my triglycerides at 302, yielding a calculated LDL of -1. This is obviously incorrect. There are other formulas which try to account for these kinds of situations, such as the Sampson and Martin formulas. These tend to give results in the 20-45 range for my LDL. If these are correct, then since the target for LDL is to be less than 130 that means that my LDL is also pretty good.

Thus, my primary concern here is focusing on my triglycerides. The ideal is to have that be less than 150, but mine has never been anywhere near that. Before taking any Omega-3 supplements mine was over 900. Thus, when I can get it into the 200-300 range then I consider that success. I was pretty much there in December of 2021, but as noted above I made a miscalculation when converting from a liquid fish oil to some squeeze pouches and it went back over 400 again. I’ve now corrected that and hope to have it back in the proper range at my next blood test in 2024.

 

CBC (Complete Blood Count)

This analysis looks at all the various components of your blood with a count of each of the physical components – red blood cells, white blood cells, platelets, monocytes, ovalocytes, etc. Most of my results are within the normal range with two exceptions. First, my red blood cell count is on the low end and this can also be seen in the fact that my iron level (hematocrit and hemoglobin) are at the low end of normal. This not a cause for particular concern except that I have to watch my diet just before I give blood every 8 weeks as there have been two occasions when my iron level excluded my giving blood that day. Secondly, my platelet count runs around 90-100 when “normal” is 140-350. Again, it’s not low enough to be a concern (if too low a clotting factor they would not be able to perform things like brain surgery), but I am not excluded from anything at this level as it’s pretty stable. While I’ll continue to monitor the results of this test, there is nothing here that is concerning.

 

CMP (Comprehensive Metabolic Panel)

This analysis is looking at the various elements of the blood that relate to kidney function – things like sodium, potassium, calcium, etc. All my results are consistently in range with the exception of my glucose level. For more on that see my A1C results below where it is also tested.

 

A1C with eAG (est. avg. glucose)

This is the primary measurement of blood sugar that is used to monitor diabetes. There is a good detailed explanation here, so I’ll not repeat all that you can read there.

In summary, these are measurements of the percentage of glucose that is attached to your red blood cells. The A1C is the percentage of cells that have glucose attached to them. Since these cells have a lifespan of about 90 days, the A1C is the average over those 90 days. This can be converted to the amount of sugar in the blood which is measured in mg/dL (milligrams per deciliter). This latter measurement is the same as the numbers that you get when taking a fingerstick and having a drop of blood analyzed by a glucose meter. This fingerstick measurement is an instantaneous measurement of the amount at that moment – which will vary all day long as food is taken in and the sugar in that food is absorbed.

Here is a summary of my A1C results over the past several years with some commentary on the medication changes that I was getting at the time:

·       2015 – 8.5 (197) – first measurements, obvious that I had diabetes which is anything greater than 7.0

·       2016 – 6.6 (143) – started taking Metformin

·       2018 – 8.1 (186) – dosage maxed out, need additional medications

·       2019 – 6.7 (146) – began taking Farxiga and Trulicity as well

·       2020 – 7.8 (166) – still increasing

·       2021 – 8.0 (183) – time to start on insulin (Lantus), met with nurse specialist and slowly ramped up amount until results acceptable

·       2022 – 6.9 (154) – doing well, anything under 7.0 is considered “managed”

·       2023 – 6.7 (146) – continuing to do well, in fact improving

It appears that I have finally gotten my sugar levels under control. In addition to the various medications, I also watch my diet (eat healthy and only take diet soda). As I monitor my sugar each day with a glucometer, I take note whenever it is high and think back through the prior day and what may have caused it. In addition to breaking my diet for the day, things like stress have an impact. I wish I could cut out the high-priced medications (Farxiga and Trulicity), but they are designed to work on other parts of the whole picture than Lantus, so I’ll keep them for now.

Some of the impacts of diabetes such as diabetic retinopathy I’ve avoided by never having my glucose levels be real high (over 9.0), but unfortunately, I do have peripheral neuropathy in the front halves of both feet and that damage is permanent so I have to be careful to not injure my feet as I will not feel it. But for the most part, I’m pretty comfortable with where I am now.

 

Clinical Trials

I’m now starting to get calls about clinical trials related to the above. At the end of August I got one call from a hospital in Philadelphia that was helping to test a new drug that was designed to help with lipid levels. The requirements were that the person had to have had a heart attack (check!), was maxed out on taking a statin (check!), and had a starting LDL of 55 or more. I drove down to Philly to get some blood testing to confirm my LDL level since I really didn’t know what it was due to my high triglycerides. Unfortunately, (?) the blood test came back and assigned me an LDL level of only 17. While I’m happy with those results, it meant that I didn’t qualify.

Last week I got another call from a hospital in Horsham about another drug trial. Over the phone I confirmed that I met the initial screening criteria of having had a heart attack and being on long-term use of a statin. I’m awaiting a second call to go over the exact details. I don’t yet know if I will still be qualified after going through all those details.

 

Conclusion

While the number of medications I take is not insignificant, I seem to have things in this area fairly well under control. My heart remains healthy, my diabetes has been stable to improving for the past few years, and while my last triglyceride level was too high (again!), I have identified the cause and am pretty confident that it will be back where it needs to be when I next get it tested in 2024. But there are a lot of moving pieces that I’m keeping track of.

I’m not sure what clinical trials I may qualify for, but I’m open to doing so to improve our scientific understanding of this area, and to help test new drugs which may help others.

 

Dementia – The Brain Killer

My History

When I was growing up, mental illness was not something that was ever discussed. While it was obvious when someone broke a leg and had a cast, and most other physical ailments were also obvious, mental illness was not talked about. It was not something you could see and there were few treatments available. But there were some that impacted me.

 

My Grandmother

The first was my father’s mother – my “Nana Rogers”. She had been born in 1895 and so she was 53 when I was born. In my early years I was not aware of any issues. She was still living with her second husband and would occasionally visit. Her problems began to be noticed (at least by me) when she was perhaps 60. It was around that time that her husband, “Bampa Rogers”, went into an assisted living center when he was in his late 80’s. At that time Nana also went into a nursing home. Today she would be diagnosed with early-stage dementia, but back then it was not given that name.

Unlike many who have dementia and who get more and more withdrawn, her reaction was to get more and more agitated. She moved from place to place as the nursing home staff could not deal with her. Eventually, she was moved to what was called (at the time), the Connecticut State General Hospital for the Mentally Insane. Our family would periodically go to visit her there – primarily going after church on a Sunday. My mother did not like going in, so she would stay in the car with my younger siblings while my dad and I went in.

The floor that she was on had smaller rooms along both sides of a long hall and a large “day room” at the end. It was a large well-lit room with windows on three sides, and a pleasant place to be – although most of the residents probably did not notice. Those who were ambulatory would often be found sitting on various couches/chairs around the room. Some would wander around. Others, such as my grandmother, would be in wheelchairs. Most were sitting quietly by themselves, but my grandmother’s symptoms included being loud and complaining. Our visits were never pleasant. The staff probably did as best they could, but it could not have been easy for them either.

She passed away in 1963 at the age of only 68. I’ve related that story before. But my first exposure to mental illness was not pleasant.

 

My Father

My father’s dementia was much different. It started much later in life when he was around 80 and he died at age 86. It came on slowly and I would notice that when we went to visit that he would want to go with me on a driving tour of the town and would show me the same things that he had on the prior visit. He was not as sharp as he had once been. The final few years he went downhill more rapidly and at the end he was confined to a hospital bed that my mom had set up in the living room. Being a Christian Scientist, he did not go to a doctor and he had no formal diagnosis of dementia, but it was obvious to all around him. He passed away quietly just a few days before my parents’ 60^th anniversary.

 

Others

As I also age myself, I am more aware of others around me who have various forms of dementia. One that was particularly significant was our family doctor whose descent in his final years began almost immediately after his retirement. He was also a family friend and attended our church, so we were very aware of it. Initially, he was still attending, and his wife would lead him around, but after a while he could no longer attend. We once visited him and his wife in their home and he was silently walking around in the kitchen, picking up a utensil and studying it from all angles. He did not interact with us at all and seemed oblivious to our being there.

There are many others – my contemporaries – going through various phases of dementia. I visited one man recently whom I have known for several decades. It was a pleasant visit, but in the half-hour I spent with him there were several stories that he repeated two or three times – being unaware that he had just told me that a few minutes earlier.

 

My Motivation

When my grandmother died, Alzheimer’s was not an available diagnosis. When my father died, it was, but that diagnosis could only be confirmed by a post-mortem brain examination which can uncover the amyloid plaques which are the hallmark of this form of dementia. But in recent years there have been tremendous advances in both the diagnosis and treatment of dementia. We have developed radioactive tracers which bind to the amyloid plaques in the brain so that PET scans can detect them. In the last few years, we have developed drugs which can be infused and which will slow the progression of the disease (two of these now have FDA approval, but they are fairly expensive). And recently we have developed blood testing which can detect the presence of these amyloid plaques (and which are several orders of magnitude less expensive than a PET scan) as well as genetic tests which detect the presence of the APOE4 alleles which increase the risk of developing Alzheimer’s. All of these advances have come because of dementia research and related clinical trials.

It’s because of these exposures, and particularly the history of dementia in my father and grandmother, that I decided to get involved in dementia research. There are actually several forms of dementia, but the most common to people is Alzheimer’s which represents about 60-70% of the total. Others include Lewy Body Dementia (which is what actor Robin Williams was diagnosed with and why he committed suicide) and Frontotemporal Dementia (which is what actor Bruce Willis has been diagnosed with). I initially went through the Alzheimer’s Association which I had been supporting financially for a while. Through them I got a list of various studies which I could enroll in.

 

My Studies

I’m currently involved in several Alzheimer’s studies. I wrote about them a few years ago (see here), but I’ll repeat them here in this context.

 

Aging Brain Cohort (ABC)

I initially enrolled in just one study called the Aging Brain Cohort. It tracks individuals over a long period of time to look at how their memory changes as they age, if it appears that they are getting dementia, etc. There is no requirement that an individual has to have dementia, but they do require that you have a “study partner” with whom they can check to get an accurate assessment of how you are performing. There are several components to the study. Most important is an annual in-person assessment where you take a number of mental tests (the same ones each year). These evaluate your various mental abilities such as copying a figure, connecting small circles in alphabetical order, listing as many words as you can think of that start with a particular letter, listening to and repeating back an increasingly long series of digits (then doing the same in reverse order), giving the name of an object when shown its picture, listening to a short story then repeating it back and seeing how many key points you can remember. It’s a pretty intense hour+ of testing.

They also ask your study partner about some recent events in your life and then see if you can give them key facts about it. There are also physical components to the testing – walking to the end of the hall and back (to observe your gait), following a finger with your eyes (kind of like the sobriety test they give to check for a DUI), closing your eyes and checking to see if you can hear a tuning fork and how faint it gets before you can’t hear it any more, checking to see if the strength in both arms/legs is similar, etc. They also ask for a yearly blood sample. Finally, every two years they give you a brain MRI. I’ve now been in the ABC study for four years and just recently had my second MRI as well as this year’s round of testing.

[Sample MRI scan – not mine]

 

Medial-Temporal Lobe (MTL) Study

The purpose of the MTL study is to better understand age-related changes in brain structure and function and to compare this with the earliest changes of Alzheimer’s disease. The MTL is part of the brain thought to be related to memory processes and is vulnerable to aging and Alzheimer’s. This is a three-year study and this year was my final (I think) session. In order to minimize my trips to Philadelphia, I had scheduled it back-to-back with my annual ABC study.

The tests in this study are quite different that the ones from the other two studies as they are looking at the impact in other parts of the brain. There were several different tests. For example, one was that the coordinator would name a category, such as types of insects, or types of vegetables, or types of alcohol, and you would have to name five things that fit into that category while he kept track of how long it took to give your responses. The upper limit is one minute per category, and I responded generally within 6-7 seconds. Another test was where the coordinator would name two objects and ask you which had the more positive association. So, if the two objects were “banana” and “hurricane”, most people would answer “banana”. But there is no real right/wrong so things like “whiskey” have a negative association with me since I don’t drink, but for others it might be a positive association.

Some tests required you to use a laptop, for example they would show you a small thumbnail picture for three seconds and you would have to hit one key if you felt it was something associated with “outdoors” and another key if you felt it was something associated with “indoors.” So, roller blades would be outdoors, but a book would be indoors. I lost track of how many pictures there were – somewhere between 50 and 100. What they didn’t tell you was that you needed to be able to remember them. The next test was another group of 50-100 pictures and you had three seconds to indicate whether you had seen that picture before, whether you had not, or whether it was “similar” to what you had seen before. For “similar” there were things like the initial group of pictures had a black-and-white patterned dress, the in the second group there was another black-and-white dress but with a different pattern.

The MTL study was allocated 1.5 hours, but because of my speed on many of the tests, we were done in a little over an hour. But it was a pretty intense hour!

 

 APT Webstudy

The Alzheimer Prevention Trials (APT) Webstudy is designed to identify people who may have an increased risk for developing Alzheimer’s disease, using the latest technology to monitor their cognitive performance through regular online memory testing. I’ve been involved in this study for almost four years. This is a totally online study and I go through the testing every four months. Like the ABC study, it is a long-term study that’s looking at memory changes over many years. I’ll not go into the details, but you can look at them in the above reference.

 

AHEAD Study

About a year ago I signed up for a drug-based study. The drug had been recently shown to slow the progression of Alzheimer’s and they wanted to see if it was given to people who did not yet have any symptoms that it might prevent the disease from even starting to show symptoms. Making the step from simple memory testing to getting drug infusions was a significant decision. However, as I related here, while I met all the other qualification steps, when I had a PET scan they found that I had no amyloid plaques in my brain, so I did not qualify. I also found that I had two copies of the APOE3 allele so I did not have any increased risk of developing Alzheimer’s in the future.

 

What’s Next?

While I now know that I am not likely to develop Alzheimer’s, that does not mean that I will end my involvement in this area. I’ll continue the ABC, MTL, and Web-APT studies. I’ve also started looking at other similar studies where my participation may help the advancement of cures for these types of diseases. So far, I have added two new studies to my portfolio. One is called MindCrowd and, somewhat like the ABC study, is looking to track large numbers of people over a long period of time to help understand the brain aging process. They are looking for one million people, world-wide, to enroll in this study. The second one I have signed up for is called PPMI (Parkinson’s Progressive Marker Initiative). This study is working with thousands of participants – both those with diagnosed Parkinson’s and those over 60 who may be at risk for it.

Also, having made the decision that drug-based studies are something I’m willing to get involved in, I have let it be known that I will consider other such studies – not for Alzheimer’s for which I’m not likely to ever have, but for other areas where I might qualify. I’ll detail what’s happening in another blog about my heart/blood issues.

Medical research is somewhat fascinating. When most people hear that term, they avoid any involvement. But I have found the opposite. And for such a not-well-understood area like dementia, even if I do not personally benefit from it, if my participation can help others in the future, then I’m willing to participate. How about you? If you’re interested, let me know!