"You can look fine on the outside, but on the inside, it’s an entirely different story."
“Alzheimer's disease can be a slow burn. It’s terrible. All the neurodegenerative diseases are, because there’s very little you can do. And you can’t identify it by just looking at the patient. It’s an invisible condition, so you can look fine on the outside, but on the inside, it’s an entirely different story. I think this is what makes Alzheimer's especially challenging for people to understand and know how to handle, particularly with younger patients.
My Dad was diagnosed with Early Onset Alzheimer’s when he was only 58 years old; one does not think of Alzheimer’s in a person of that age. He was the first one to notice changes, which he brought to my mom’s attention. He kept saying he was going to lose his job. He said he was not able to perform simple tasks at work that he had done for years without difficulty. His job as a computer methodologist required a high level of executive functioning, so when he wasn’t keeping up with that level of performance, he and his coworkers took notice. There was also nothing my dad couldn’t do around the house – he put additions on our home, built decks and did remodeling jobs. But we started noticing deficits in this area as well. We began the process of seeing a variety of doctors and specialists and having multiple tests done. The test that pointed everyone toward the Alzheimer’s diagnosis was the neuropsychology testing. Hearing that news is life-altering and hard to fathom. Our family had to digest the reality so we could start focusing on what came next. I’m the type of person who wants to do something to make a situation better. I immediately jumped into what the treatment options were and how I could help. But we didn’t act recklessly. We researched the disease and kept moving forward, focused on figuring out our plan. This was hard to do because we were in such a vulnerable headspace. The biggest thing we relied on was our faith.
Early on, we were told my dad would need a particular type of PET scan that could distinguish between Alzheimer's Dementia and Lewy Body Dementia. The scan wasn't covered by insurance at the time. It cost around $2,500 out of pocket. We wanted to get that information as soon as possible and were lucky that we could afford it. But unfortunately, that isn’t the case with everyone, which essentially means that not everyone gets a chance to really understand what they are possibly up against. My dad then went on to have a lumbar puncture which sealed the deal. The plaque that is found in the brains of Alzheimer’s patients was in his spinal fluid.
“It's a much different experience to watch someone in their 50s go through this than an elderly individual.”
We lost my maternal grandmother to Alzheimer’s when she was 88 years old. It was extremely sad and took a toll on the family, but it was nothing like seeing my dad be cut down in the prime of his life and career.
We’re blessed to have great friends and family, but when it comes to support groups and other forms of support, there's just not much out there for folks my dad’s age. A lot of people in Alzheimer's support groups are retired and much older. Many of the support activities take place during the day when we’re all at work, so we haven’t been able to take my dad to them. This reality has made the journey even more of a challenge for us.
There’s no doubt that Alzheimer's starts to manifest itself in your brain well before symptoms appear. That's why there is work being done on developing better diagnostic tests to detect these changes earlier. There are certain predictors, but why does it start? That's what researchers are still trying to figure out.
My Dad played multiple sports in his life and sustained numerous concussions. The first one when he was only 6 years old; he was hit in the head with a baseball bat. So we wondered if brain injuries played a role. We also considered family history. My dad is the youngest of 8 children, and while there are some things that do run in our family, Alzheimer’s isn’t one of them.
After ruling out genetics, we moved on to diet. Some people don’t break down vitamins correctly, so we thought maybe he was deficient in vitamin D or B12. We wanted to look at things holistically. We went through several tests looking at his nutrition, checking for mold, and other day-to-day environmental things.
“I'm just a son trying to navigate this path and help bring options to his family.”
My Dad used to work for a big pharmaceutical data company, I work in biotechnology pharmaceutical sales, and my mom is also in the healthcare space. Since we’re in this world, we considered clinical research early on, but we still didn’t know much about it, beyond what you see on drug commercials. We didn’t really understand how the sausage was made, so to speak.
I had been living and working in Atlanta at the time of my dad’s diagnosis and ended up moving back to Philadelphia to be closer to my parents. My younger brother Noah was still in college at the time. I had no idea what was going on, but knew I needed to help figure it out. We were fortunate to be living in an area where there are several universities well-known for medical research. I also landed a new job in the clinical research space that enabled me to learn so much more about clinical trials and how to search for the right ones. It was a good thing, because my dad’s doctors really had no idea the breadth of options that were out there or how to navigate them. But wven with my new work experience, I found the process to be daunting.
“There's a lot of dissonance in the information that’s out there.”
Conventional medicine is tough to navigate. There are a lot of great people who are doing amazing work to help patients, but there are also some bad actors trying to take advantage of someone’s vulnerability. How do you know what to pay attention to and what to ignore? If you take the unconventional route through diet and nutrition, it’s difficult to discern what’s most effective. I’ve also learned it can be highly unique to everyone.
As we investigated clinical trials, I learned more about inclusion and exclusion criteria, and which kind of trials my dad may be a fit for. We looked at multiple studies; some he fit, others he didn’t. We took risk into consideration, too. We wanted him to be able to still live his life and enjoy as much as he could. We didn't want to participate in a study where some people were doing alright while others were having scary side effects. We consulted multiple physicians and ended up going with a study that seemed to have a safe profile.
The initial clinic we visited was in the Philadelphia area. I commend the doctors and nurses there for their compassion and professionalism. We quickly learned that participating in the trial meant answering difficult questions and coping with the emotions and exhaustion that went along with that. The folks at this trial were thankfully very kind and patient.
From what I understand from doctors, my dad’s progression has been much slower than most patients his age with the disease. My dad had no comorbid conditions that are often associated with dementia, like diabetes, high blood pressure, and substance use disorder. He was fit and enjoyed almost daily exercise before his diagnosis. He continued to do the same after as well.
“When an open label is taken out from under you, it puts a lot of people in a difficult position.”
My parents told me to go and live my life and encouraged me to take a position in Nashville, Tennessee, where I could also nurture my love for music. My dad loved music as much as me. He wanted me to teach him how to play the guitar, which I did. He continues to play and enjoy it. My parents then decided to consider moving to Tennessee to be closer to my wife and me. But before that could happen, we had to ensure the clinical trial my dad was committed to also had a site where they were moving. We learned that there was one in Franklin, Tennessee, so once we had that information, my mom started the process of making the move. We were so grateful my dad would be able to continue with the opportunity to participate in the Open Label portion of the study. We would finally know that my dad was receiving the medication.
On the day before my dad’s appointment at the new site in Franklin, TN, we learned the site was not going to participate in the Open Label portion of the study. This…after my parents made the move to Tennessee. It was devastating. We learned the next closest option was a site in Georgia, over 5 hours away. We called the site back in Philadelphia and explained our dilemma. They offered to take my dad back and were able to get the drug manufacturer to pay for my parents’ travel and lodging. But my mom cannot travel alone with my dad, especially air travel. His condition made the experience extremely difficult for only one person. So I joined them, but the drug company would not pay for my travel expenses. We asked about telehealth visits or allowing for blood testing and other testing to be done in Tennessee with the results sent back to Philadelphia, but this was not an option. So we made the trip back to Philadelphia bimonthly for over a year’s time. Not an easy ask for a patient with dementia and his family. However, we had already invested a year of our lives in this study and wanted to see it through... if not for us, but for others.
“In clinical research, there’s so much privilege. What if you live in the middle-of-nowhere-Tennessee?”
An issue that came to mind after our experience with my dad was that where you live can have an impact on the care that is available to you, particularly when it comes to clinical research. If you don’t live near a big teaching hospital where research is being done, you may not have the opportunity to be part of a trial. In addition, I considered the idea that people don’t metabolize medication the same way. I wondered if there is enough testing being done on a wide variety of people from many different ethnicities and backgrounds, and how can clinical trials make themselves available to these folks?
No matter where I may go in the music industry, teaching my dad how to play the guitar will always be my biggest accomplishment.
My dad is the humblest person I know. I really admire him, especially his faith and his character. He always puts his family first. What amazes me the most about him is that even now - despite still being so self-aware - he doesn’t make it about him. He knows that his disease also affects other people around him deeply. He will mention at times that he should be working to help with finances at home. He still experiences the need to have a purpose.
We had to give my dad a sense of accomplishment. My dad has always been musically talented, despite having never received a music lesson. He has an amazing voice and taught himself to play the piano as a young person. I think some of that love of music was passed down to me. I've played music my whole life – it’s why I now live in Nashville. I love music, songwriting, and production. I felt I was equipped to teach my dad how to play the one instrument he’s always wanted to learn to play: the guitar. He and I were able to achieve that goal AFTER his diagnosis. He loves playing and everyone loves to hear him sing. He takes great pride in this ability. It’s given him a purpose. No matter where I may go in the music industry, teaching my dad how to play the guitar will always be my biggest accomplishment. Music is such a beautiful thing. I don't really know how or why it affects people the way it does, but it’s profound. It's therapeutic.
Music has also given me the gift of being able to write and perform songs – one to articulate my love for my wife, and another one I just completed to give honor to my dad. A couple of years ago – after my dad’s diagnosis – my dad had a thought that he didn’t want to forget, so he made sure to write it down. His thought was, "Having children is like having one foot in heaven." This left an indelible mark on me, so I wrote the song about this beautiful thought. Writing this song was such a humbling experience for me. My dad has helped me gain a better perspective on music and life overall. He is showing me what true humility and selflessness look like. My relationship with my dad is different now. It’s deeper, and for that I am grateful.
I haven’t given up on having hope where clinical research is concerned. I believe there are people in that industry who really want to be able to treat and cure this terrible disease. In some small way I hope to be able to help make that difference by sharing my dad’s story with people in the industry who I meet during my professional interactions."
“Alzheimer's disease can be a slow burn. It’s terrible. All the neurodegenerative diseases are, because there’s very little you can do. And you can’t identify it by just looking at the patient. It’s an invisible condition, so you can look fine on the outside, but on the inside, it’s an entirely different story. I think this is what makes Alzheimer's especially challenging for people to understand and know how to handle, particularly with younger patients.
My Dad was diagnosed with Early Onset Alzheimer’s when he was only 58 years old; one does not think of Alzheimer’s in a person of that age. He was the first one to notice changes, which he brought to my mom’s attention. He kept saying he was going to lose his job. He said he was not able to perform simple tasks at work that he had done for years without difficulty. His job as a computer methodologist required a high level of executive functioning, so when he wasn’t keeping up with that level of performance, he and his coworkers took notice. There was also nothing my dad couldn’t do around the house – he put additions on our home, built decks and did remodeling jobs. But we started noticing deficits in this area as well. We began the process of seeing a variety of doctors and specialists and having multiple tests done. The test that pointed everyone toward the Alzheimer’s diagnosis was the neuropsychology testing. Hearing that news is life-altering and hard to fathom. Our family had to digest the reality so we could start focusing on what came next. I’m the type of person who wants to do something to make a situation better. I immediately jumped into what the treatment options were and how I could help. But we didn’t act recklessly. We researched the disease and kept moving forward, focused on figuring out our plan. This was hard to do because we were in such a vulnerable headspace. The biggest thing we relied on was our faith.
Early on, we were told my dad would need a particular type of PET scan that could distinguish between Alzheimer's Dementia and Lewy Body Dementia. The scan wasn't covered by insurance at the time. It cost around $2,500 out of pocket. We wanted to get that information as soon as possible and were lucky that we could afford it. But unfortunately, that isn’t the case with everyone, which essentially means that not everyone gets a chance to really understand what they are possibly up against. My dad then went on to have a lumbar puncture which sealed the deal. The plaque that is found in the brains of Alzheimer’s patients was in his spinal fluid.
“It's a much different experience to watch someone in their 50s go through this than an elderly individual.”
We lost my maternal grandmother to Alzheimer’s when she was 88 years old. It was extremely sad and took a toll on the family, but it was nothing like seeing my dad be cut down in the prime of his life and career.
We’re blessed to have great friends and family, but when it comes to support groups and other forms of support, there's just not much out there for folks my dad’s age. A lot of people in Alzheimer's support groups are retired and much older. Many of the support activities take place during the day when we’re all at work, so we haven’t been able to take my dad to them. This reality has made the journey even more of a challenge for us.
There’s no doubt that Alzheimer's starts to manifest itself in your brain well before symptoms appear. That's why there is work being done on developing better diagnostic tests to detect these changes earlier. There are certain predictors, but why does it start? That's what researchers are still trying to figure out.
My Dad played multiple sports in his life and sustained numerous concussions. The first one when he was only 6 years old; he was hit in the head with a baseball bat. So we wondered if brain injuries played a role. We also considered family history. My dad is the youngest of 8 children, and while there are some things that do run in our family, Alzheimer’s isn’t one of them.
After ruling out genetics, we moved on to diet. Some people don’t break down vitamins correctly, so we thought maybe he was deficient in vitamin D or B12. We wanted to look at things holistically. We went through several tests looking at his nutrition, checking for mold, and other day-to-day environmental things.
“I'm just a son trying to navigate this path and help bring options to his family.”
My Dad used to work for a big pharmaceutical data company, I work in biotechnology pharmaceutical sales, and my mom is also in the healthcare space. Since we’re in this world, we considered clinical research early on, but we still didn’t know much about it, beyond what you see on drug commercials. We didn’t really understand how the sausage was made, so to speak.
I had been living and working in Atlanta at the time of my dad’s diagnosis and ended up moving back to Philadelphia to be closer to my parents. My younger brother Noah was still in college at the time. I had no idea what was going on, but knew I needed to help figure it out. We were fortunate to be living in an area where there are several universities well-known for medical research. I also landed a new job in the clinical research space that enabled me to learn so much more about clinical trials and how to search for the right ones. It was a good thing, because my dad’s doctors really had no idea the breadth of options that were out there or how to navigate them. But wven with my new work experience, I found the process to be daunting.
“There's a lot of dissonance in the information that’s out there.”
Conventional medicine is tough to navigate. There are a lot of great people who are doing amazing work to help patients, but there are also some bad actors trying to take advantage of someone’s vulnerability. How do you know what to pay attention to and what to ignore? If you take the unconventional route through diet and nutrition, it’s difficult to discern what’s most effective. I’ve also learned it can be highly unique to everyone.
As we investigated clinical trials, I learned more about inclusion and exclusion criteria, and which kind of trials my dad may be a fit for. We looked at multiple studies; some he fit, others he didn’t. We took risk into consideration, too. We wanted him to be able to still live his life and enjoy as much as he could. We didn't want to participate in a study where some people were doing alright while others were having scary side effects. We consulted multiple physicians and ended up going with a study that seemed to have a safe profile.
The initial clinic we visited was in the Philadelphia area. I commend the doctors and nurses there for their compassion and professionalism. We quickly learned that participating in the trial meant answering difficult questions and coping with the emotions and exhaustion that went along with that. The folks at this trial were thankfully very kind and patient.
From what I understand from doctors, my dad’s progression has been much slower than most patients his age with the disease. My dad had no comorbid conditions that are often associated with dementia, like diabetes, high blood pressure, and substance use disorder. He was fit and enjoyed almost daily exercise before his diagnosis. He continued to do the same after as well.
“When an open label is taken out from under you, it puts a lot of people in a difficult position.”
My parents told me to go and live my life and encouraged me to take a position in Nashville, Tennessee, where I could also nurture my love for music. My dad loved music as much as me. He wanted me to teach him how to play the guitar, which I did. He continues to play and enjoy it. My parents then decided to consider moving to Tennessee to be closer to my wife and me. But before that could happen, we had to ensure the clinical trial my dad was committed to also had a site where they were moving. We learned that there was one in Franklin, Tennessee, so once we had that information, my mom started the process of making the move. We were so grateful my dad would be able to continue with the opportunity to participate in the Open Label portion of the study. We would finally know that my dad was receiving the medication.
On the day before my dad’s appointment at the new site in Franklin, TN, we learned the site was not going to participate in the Open Label portion of the study. This…after my parents made the move to Tennessee. It was devastating. We learned the next closest option was a site in Georgia, over 5 hours away. We called the site back in Philadelphia and explained our dilemma. They offered to take my dad back and were able to get the drug manufacturer to pay for my parents’ travel and lodging. But my mom cannot travel alone with my dad, especially air travel. His condition made the experience extremely difficult for only one person. So I joined them, but the drug company would not pay for my travel expenses. We asked about telehealth visits or allowing for blood testing and other testing to be done in Tennessee with the results sent back to Philadelphia, but this was not an option. So we made the trip back to Philadelphia bimonthly for over a year’s time. Not an easy ask for a patient with dementia and his family. However, we had already invested a year of our lives in this study and wanted to see it through... if not for us, but for others.
“In clinical research, there’s so much privilege. What if you live in the middle-of-nowhere-Tennessee?”
An issue that came to mind after our experience with my dad was that where you live can have an impact on the care that is available to you, particularly when it comes to clinical research. If you don’t live near a big teaching hospital where research is being done, you may not have the opportunity to be part of a trial. In addition, I considered the idea that people don’t metabolize medication the same way. I wondered if there is enough testing being done on a wide variety of people from many different ethnicities and backgrounds, and how can clinical trials make themselves available to these folks?
No matter where I may go in the music industry, teaching my dad how to play the guitar will always be my biggest accomplishment.
My dad is the humblest person I know. I really admire him, especially his faith and his character. He always puts his family first. What amazes me the most about him is that even now - despite still being so self-aware - he doesn’t make it about him. He knows that his disease also affects other people around him deeply. He will mention at times that he should be working to help with finances at home. He still experiences the need to have a purpose.
We had to give my dad a sense of accomplishment. My dad has always been musically talented, despite having never received a music lesson. He has an amazing voice and taught himself to play the piano as a young person. I think some of that love of music was passed down to me. I've played music my whole life – it’s why I now live in Nashville. I love music, songwriting, and production. I felt I was equipped to teach my dad how to play the one instrument he’s always wanted to learn to play: the guitar. He and I were able to achieve that goal AFTER his diagnosis. He loves playing and everyone loves to hear him sing. He takes great pride in this ability. It’s given him a purpose. No matter where I may go in the music industry, teaching my dad how to play the guitar will always be my biggest accomplishment. Music is such a beautiful thing. I don't really know how or why it affects people the way it does, but it’s profound. It's therapeutic.
Music has also given me the gift of being able to write and perform songs – one to articulate my love for my wife, and another one I just completed to give honor to my dad. A couple of years ago – after my dad’s diagnosis – my dad had a thought that he didn’t want to forget, so he made sure to write it down. His thought was, "Having children is like having one foot in heaven." This left an indelible mark on me, so I wrote the song about this beautiful thought. Writing this song was such a humbling experience for me. My dad has helped me gain a better perspective on music and life overall. He is showing me what true humility and selflessness look like. My relationship with my dad is different now. It’s deeper, and for that I am grateful.
I haven’t given up on having hope where clinical research is concerned. I believe there are people in that industry who really want to be able to treat and cure this terrible disease. In some small way I hope to be able to help make that difference by sharing my dad’s story with people in the industry who I meet during my professional interactions."
“Alzheimer's disease can be a slow burn. It’s terrible. All the neurodegenerative diseases are, because there’s very little you can do. And you can’t identify it by just looking at the patient. It’s an invisible condition, so you can look fine on the outside, but on the inside, it’s an entirely different story. I think this is what makes Alzheimer's especially challenging for people to understand and know how to handle, particularly with younger patients.
My Dad was diagnosed with Early Onset Alzheimer’s when he was only 58 years old; one does not think of Alzheimer’s in a person of that age. He was the first one to notice changes, which he brought to my mom’s attention. He kept saying he was going to lose his job. He said he was not able to perform simple tasks at work that he had done for years without difficulty. His job as a computer methodologist required a high level of executive functioning, so when he wasn’t keeping up with that level of performance, he and his coworkers took notice. There was also nothing my dad couldn’t do around the house – he put additions on our home, built decks and did remodeling jobs. But we started noticing deficits in this area as well. We began the process of seeing a variety of doctors and specialists and having multiple tests done. The test that pointed everyone toward the Alzheimer’s diagnosis was the neuropsychology testing. Hearing that news is life-altering and hard to fathom. Our family had to digest the reality so we could start focusing on what came next. I’m the type of person who wants to do something to make a situation better. I immediately jumped into what the treatment options were and how I could help. But we didn’t act recklessly. We researched the disease and kept moving forward, focused on figuring out our plan. This was hard to do because we were in such a vulnerable headspace. The biggest thing we relied on was our faith.
Early on, we were told my dad would need a particular type of PET scan that could distinguish between Alzheimer's Dementia and Lewy Body Dementia. The scan wasn't covered by insurance at the time. It cost around $2,500 out of pocket. We wanted to get that information as soon as possible and were lucky that we could afford it. But unfortunately, that isn’t the case with everyone, which essentially means that not everyone gets a chance to really understand what they are possibly up against. My dad then went on to have a lumbar puncture which sealed the deal. The plaque that is found in the brains of Alzheimer’s patients was in his spinal fluid.
“It's a much different experience to watch someone in their 50s go through this than an elderly individual.”
We lost my maternal grandmother to Alzheimer’s when she was 88 years old. It was extremely sad and took a toll on the family, but it was nothing like seeing my dad be cut down in the prime of his life and career.
We’re blessed to have great friends and family, but when it comes to support groups and other forms of support, there's just not much out there for folks my dad’s age. A lot of people in Alzheimer's support groups are retired and much older. Many of the support activities take place during the day when we’re all at work, so we haven’t been able to take my dad to them. This reality has made the journey even more of a challenge for us.
There’s no doubt that Alzheimer's starts to manifest itself in your brain well before symptoms appear. That's why there is work being done on developing better diagnostic tests to detect these changes earlier. There are certain predictors, but why does it start? That's what researchers are still trying to figure out.
My Dad played multiple sports in his life and sustained numerous concussions. The first one when he was only 6 years old; he was hit in the head with a baseball bat. So we wondered if brain injuries played a role. We also considered family history. My dad is the youngest of 8 children, and while there are some things that do run in our family, Alzheimer’s isn’t one of them.
After ruling out genetics, we moved on to diet. Some people don’t break down vitamins correctly, so we thought maybe he was deficient in vitamin D or B12. We wanted to look at things holistically. We went through several tests looking at his nutrition, checking for mold, and other day-to-day environmental things.
“I'm just a son trying to navigate this path and help bring options to his family.”
My Dad used to work for a big pharmaceutical data company, I work in biotechnology pharmaceutical sales, and my mom is also in the healthcare space. Since we’re in this world, we considered clinical research early on, but we still didn’t know much about it, beyond what you see on drug commercials. We didn’t really understand how the sausage was made, so to speak.
I had been living and working in Atlanta at the time of my dad’s diagnosis and ended up moving back to Philadelphia to be closer to my parents. My younger brother Noah was still in college at the time. I had no idea what was going on, but knew I needed to help figure it out. We were fortunate to be living in an area where there are several universities well-known for medical research. I also landed a new job in the clinical research space that enabled me to learn so much more about clinical trials and how to search for the right ones. It was a good thing, because my dad’s doctors really had no idea the breadth of options that were out there or how to navigate them. But wven with my new work experience, I found the process to be daunting.
“There's a lot of dissonance in the information that’s out there.”
Conventional medicine is tough to navigate. There are a lot of great people who are doing amazing work to help patients, but there are also some bad actors trying to take advantage of someone’s vulnerability. How do you know what to pay attention to and what to ignore? If you take the unconventional route through diet and nutrition, it’s difficult to discern what’s most effective. I’ve also learned it can be highly unique to everyone.
As we investigated clinical trials, I learned more about inclusion and exclusion criteria, and which kind of trials my dad may be a fit for. We looked at multiple studies; some he fit, others he didn’t. We took risk into consideration, too. We wanted him to be able to still live his life and enjoy as much as he could. We didn't want to participate in a study where some people were doing alright while others were having scary side effects. We consulted multiple physicians and ended up going with a study that seemed to have a safe profile.
The initial clinic we visited was in the Philadelphia area. I commend the doctors and nurses there for their compassion and professionalism. We quickly learned that participating in the trial meant answering difficult questions and coping with the emotions and exhaustion that went along with that. The folks at this trial were thankfully very kind and patient.
From what I understand from doctors, my dad’s progression has been much slower than most patients his age with the disease. My dad had no comorbid conditions that are often associated with dementia, like diabetes, high blood pressure, and substance use disorder. He was fit and enjoyed almost daily exercise before his diagnosis. He continued to do the same after as well.
“When an open label is taken out from under you, it puts a lot of people in a difficult position.”
My parents told me to go and live my life and encouraged me to take a position in Nashville, Tennessee, where I could also nurture my love for music. My dad loved music as much as me. He wanted me to teach him how to play the guitar, which I did. He continues to play and enjoy it. My parents then decided to consider moving to Tennessee to be closer to my wife and me. But before that could happen, we had to ensure the clinical trial my dad was committed to also had a site where they were moving. We learned that there was one in Franklin, Tennessee, so once we had that information, my mom started the process of making the move. We were so grateful my dad would be able to continue with the opportunity to participate in the Open Label portion of the study. We would finally know that my dad was receiving the medication.
On the day before my dad’s appointment at the new site in Franklin, TN, we learned the site was not going to participate in the Open Label portion of the study. This…after my parents made the move to Tennessee. It was devastating. We learned the next closest option was a site in Georgia, over 5 hours away. We called the site back in Philadelphia and explained our dilemma. They offered to take my dad back and were able to get the drug manufacturer to pay for my parents’ travel and lodging. But my mom cannot travel alone with my dad, especially air travel. His condition made the experience extremely difficult for only one person. So I joined them, but the drug company would not pay for my travel expenses. We asked about telehealth visits or allowing for blood testing and other testing to be done in Tennessee with the results sent back to Philadelphia, but this was not an option. So we made the trip back to Philadelphia bimonthly for over a year’s time. Not an easy ask for a patient with dementia and his family. However, we had already invested a year of our lives in this study and wanted to see it through... if not for us, but for others.
“In clinical research, there’s so much privilege. What if you live in the middle-of-nowhere-Tennessee?”
An issue that came to mind after our experience with my dad was that where you live can have an impact on the care that is available to you, particularly when it comes to clinical research. If you don’t live near a big teaching hospital where research is being done, you may not have the opportunity to be part of a trial. In addition, I considered the idea that people don’t metabolize medication the same way. I wondered if there is enough testing being done on a wide variety of people from many different ethnicities and backgrounds, and how can clinical trials make themselves available to these folks?
No matter where I may go in the music industry, teaching my dad how to play the guitar will always be my biggest accomplishment.
My dad is the humblest person I know. I really admire him, especially his faith and his character. He always puts his family first. What amazes me the most about him is that even now - despite still being so self-aware - he doesn’t make it about him. He knows that his disease also affects other people around him deeply. He will mention at times that he should be working to help with finances at home. He still experiences the need to have a purpose.
We had to give my dad a sense of accomplishment. My dad has always been musically talented, despite having never received a music lesson. He has an amazing voice and taught himself to play the piano as a young person. I think some of that love of music was passed down to me. I've played music my whole life – it’s why I now live in Nashville. I love music, songwriting, and production. I felt I was equipped to teach my dad how to play the one instrument he’s always wanted to learn to play: the guitar. He and I were able to achieve that goal AFTER his diagnosis. He loves playing and everyone loves to hear him sing. He takes great pride in this ability. It’s given him a purpose. No matter where I may go in the music industry, teaching my dad how to play the guitar will always be my biggest accomplishment. Music is such a beautiful thing. I don't really know how or why it affects people the way it does, but it’s profound. It's therapeutic.
Music has also given me the gift of being able to write and perform songs – one to articulate my love for my wife, and another one I just completed to give honor to my dad. A couple of years ago – after my dad’s diagnosis – my dad had a thought that he didn’t want to forget, so he made sure to write it down. His thought was, "Having children is like having one foot in heaven." This left an indelible mark on me, so I wrote the song about this beautiful thought. Writing this song was such a humbling experience for me. My dad has helped me gain a better perspective on music and life overall. He is showing me what true humility and selflessness look like. My relationship with my dad is different now. It’s deeper, and for that I am grateful.
I haven’t given up on having hope where clinical research is concerned. I believe there are people in that industry who really want to be able to treat and cure this terrible disease. In some small way I hope to be able to help make that difference by sharing my dad’s story with people in the industry who I meet during my professional interactions."
“Alzheimer's disease can be a slow burn. It’s terrible. All the neurodegenerative diseases are, because there’s very little you can do. And you can’t identify it by just looking at the patient. It’s an invisible condition, so you can look fine on the outside, but on the inside, it’s an entirely different story. I think this is what makes Alzheimer's especially challenging for people to understand and know how to handle, particularly with younger patients.
My Dad was diagnosed with Early Onset Alzheimer’s when he was only 58 years old; one does not think of Alzheimer’s in a person of that age. He was the first one to notice changes, which he brought to my mom’s attention. He kept saying he was going to lose his job. He said he was not able to perform simple tasks at work that he had done for years without difficulty. His job as a computer methodologist required a high level of executive functioning, so when he wasn’t keeping up with that level of performance, he and his coworkers took notice. There was also nothing my dad couldn’t do around the house – he put additions on our home, built decks and did remodeling jobs. But we started noticing deficits in this area as well. We began the process of seeing a variety of doctors and specialists and having multiple tests done. The test that pointed everyone toward the Alzheimer’s diagnosis was the neuropsychology testing. Hearing that news is life-altering and hard to fathom. Our family had to digest the reality so we could start focusing on what came next. I’m the type of person who wants to do something to make a situation better. I immediately jumped into what the treatment options were and how I could help. But we didn’t act recklessly. We researched the disease and kept moving forward, focused on figuring out our plan. This was hard to do because we were in such a vulnerable headspace. The biggest thing we relied on was our faith.
Early on, we were told my dad would need a particular type of PET scan that could distinguish between Alzheimer's Dementia and Lewy Body Dementia. The scan wasn't covered by insurance at the time. It cost around $2,500 out of pocket. We wanted to get that information as soon as possible and were lucky that we could afford it. But unfortunately, that isn’t the case with everyone, which essentially means that not everyone gets a chance to really understand what they are possibly up against. My dad then went on to have a lumbar puncture which sealed the deal. The plaque that is found in the brains of Alzheimer’s patients was in his spinal fluid.
“It's a much different experience to watch someone in their 50s go through this than an elderly individual.”
We lost my maternal grandmother to Alzheimer’s when she was 88 years old. It was extremely sad and took a toll on the family, but it was nothing like seeing my dad be cut down in the prime of his life and career.
We’re blessed to have great friends and family, but when it comes to support groups and other forms of support, there's just not much out there for folks my dad’s age. A lot of people in Alzheimer's support groups are retired and much older. Many of the support activities take place during the day when we’re all at work, so we haven’t been able to take my dad to them. This reality has made the journey even more of a challenge for us.
There’s no doubt that Alzheimer's starts to manifest itself in your brain well before symptoms appear. That's why there is work being done on developing better diagnostic tests to detect these changes earlier. There are certain predictors, but why does it start? That's what researchers are still trying to figure out.
My Dad played multiple sports in his life and sustained numerous concussions. The first one when he was only 6 years old; he was hit in the head with a baseball bat. So we wondered if brain injuries played a role. We also considered family history. My dad is the youngest of 8 children, and while there are some things that do run in our family, Alzheimer’s isn’t one of them.
After ruling out genetics, we moved on to diet. Some people don’t break down vitamins correctly, so we thought maybe he was deficient in vitamin D or B12. We wanted to look at things holistically. We went through several tests looking at his nutrition, checking for mold, and other day-to-day environmental things.
“I'm just a son trying to navigate this path and help bring options to his family.”
My Dad used to work for a big pharmaceutical data company, I work in biotechnology pharmaceutical sales, and my mom is also in the healthcare space. Since we’re in this world, we considered clinical research early on, but we still didn’t know much about it, beyond what you see on drug commercials. We didn’t really understand how the sausage was made, so to speak.
I had been living and working in Atlanta at the time of my dad’s diagnosis and ended up moving back to Philadelphia to be closer to my parents. My younger brother Noah was still in college at the time. I had no idea what was going on, but knew I needed to help figure it out. We were fortunate to be living in an area where there are several universities well-known for medical research. I also landed a new job in the clinical research space that enabled me to learn so much more about clinical trials and how to search for the right ones. It was a good thing, because my dad’s doctors really had no idea the breadth of options that were out there or how to navigate them. But wven with my new work experience, I found the process to be daunting.
“There's a lot of dissonance in the information that’s out there.”
Conventional medicine is tough to navigate. There are a lot of great people who are doing amazing work to help patients, but there are also some bad actors trying to take advantage of someone’s vulnerability. How do you know what to pay attention to and what to ignore? If you take the unconventional route through diet and nutrition, it’s difficult to discern what’s most effective. I’ve also learned it can be highly unique to everyone.
As we investigated clinical trials, I learned more about inclusion and exclusion criteria, and which kind of trials my dad may be a fit for. We looked at multiple studies; some he fit, others he didn’t. We took risk into consideration, too. We wanted him to be able to still live his life and enjoy as much as he could. We didn't want to participate in a study where some people were doing alright while others were having scary side effects. We consulted multiple physicians and ended up going with a study that seemed to have a safe profile.
The initial clinic we visited was in the Philadelphia area. I commend the doctors and nurses there for their compassion and professionalism. We quickly learned that participating in the trial meant answering difficult questions and coping with the emotions and exhaustion that went along with that. The folks at this trial were thankfully very kind and patient.
From what I understand from doctors, my dad’s progression has been much slower than most patients his age with the disease. My dad had no comorbid conditions that are often associated with dementia, like diabetes, high blood pressure, and substance use disorder. He was fit and enjoyed almost daily exercise before his diagnosis. He continued to do the same after as well.
“When an open label is taken out from under you, it puts a lot of people in a difficult position.”
My parents told me to go and live my life and encouraged me to take a position in Nashville, Tennessee, where I could also nurture my love for music. My dad loved music as much as me. He wanted me to teach him how to play the guitar, which I did. He continues to play and enjoy it. My parents then decided to consider moving to Tennessee to be closer to my wife and me. But before that could happen, we had to ensure the clinical trial my dad was committed to also had a site where they were moving. We learned that there was one in Franklin, Tennessee, so once we had that information, my mom started the process of making the move. We were so grateful my dad would be able to continue with the opportunity to participate in the Open Label portion of the study. We would finally know that my dad was receiving the medication.
On the day before my dad’s appointment at the new site in Franklin, TN, we learned the site was not going to participate in the Open Label portion of the study. This…after my parents made the move to Tennessee. It was devastating. We learned the next closest option was a site in Georgia, over 5 hours away. We called the site back in Philadelphia and explained our dilemma. They offered to take my dad back and were able to get the drug manufacturer to pay for my parents’ travel and lodging. But my mom cannot travel alone with my dad, especially air travel. His condition made the experience extremely difficult for only one person. So I joined them, but the drug company would not pay for my travel expenses. We asked about telehealth visits or allowing for blood testing and other testing to be done in Tennessee with the results sent back to Philadelphia, but this was not an option. So we made the trip back to Philadelphia bimonthly for over a year’s time. Not an easy ask for a patient with dementia and his family. However, we had already invested a year of our lives in this study and wanted to see it through... if not for us, but for others.
“In clinical research, there’s so much privilege. What if you live in the middle-of-nowhere-Tennessee?”
An issue that came to mind after our experience with my dad was that where you live can have an impact on the care that is available to you, particularly when it comes to clinical research. If you don’t live near a big teaching hospital where research is being done, you may not have the opportunity to be part of a trial. In addition, I considered the idea that people don’t metabolize medication the same way. I wondered if there is enough testing being done on a wide variety of people from many different ethnicities and backgrounds, and how can clinical trials make themselves available to these folks?
No matter where I may go in the music industry, teaching my dad how to play the guitar will always be my biggest accomplishment.
My dad is the humblest person I know. I really admire him, especially his faith and his character. He always puts his family first. What amazes me the most about him is that even now - despite still being so self-aware - he doesn’t make it about him. He knows that his disease also affects other people around him deeply. He will mention at times that he should be working to help with finances at home. He still experiences the need to have a purpose.
We had to give my dad a sense of accomplishment. My dad has always been musically talented, despite having never received a music lesson. He has an amazing voice and taught himself to play the piano as a young person. I think some of that love of music was passed down to me. I've played music my whole life – it’s why I now live in Nashville. I love music, songwriting, and production. I felt I was equipped to teach my dad how to play the one instrument he’s always wanted to learn to play: the guitar. He and I were able to achieve that goal AFTER his diagnosis. He loves playing and everyone loves to hear him sing. He takes great pride in this ability. It’s given him a purpose. No matter where I may go in the music industry, teaching my dad how to play the guitar will always be my biggest accomplishment. Music is such a beautiful thing. I don't really know how or why it affects people the way it does, but it’s profound. It's therapeutic.
Music has also given me the gift of being able to write and perform songs – one to articulate my love for my wife, and another one I just completed to give honor to my dad. A couple of years ago – after my dad’s diagnosis – my dad had a thought that he didn’t want to forget, so he made sure to write it down. His thought was, "Having children is like having one foot in heaven." This left an indelible mark on me, so I wrote the song about this beautiful thought. Writing this song was such a humbling experience for me. My dad has helped me gain a better perspective on music and life overall. He is showing me what true humility and selflessness look like. My relationship with my dad is different now. It’s deeper, and for that I am grateful.
I haven’t given up on having hope where clinical research is concerned. I believe there are people in that industry who really want to be able to treat and cure this terrible disease. In some small way I hope to be able to help make that difference by sharing my dad’s story with people in the industry who I meet during my professional interactions."
Try to begin by giving yourself some grace. This is a tragic disease which changes most of what you have come to know and expect from your loved one and your world. Make sure to take time for yourself and to ask for help. Let others in. There are no heroes where Alzheimer’s is concerned.
We did learn the importance of socialization for my dad, but made sure it was not too much stimulation at one time. My dad is a social person, and he likes to be with people he is familiar with. Our friends and family have done a remarkable job of making my dad feel supported, valued and loved. They treat him as they always did, but with a little more patience and understanding.
Finally, let your loved one do what they are still able to do unless the activity has the potential to harm them or others. Slowly introduce assistance as it becomes necessary.
As my dad’s mom would always say, “love them while you have them.”
Representation Matters
Increasing diversity in clinical trials builds trust, promotes health equity, and leads to more effective treatments and better outcomes (NEJM). But there is much work to be done - and barriers to break - to improve awareness and access for all people.
Do you know someone who is a member of a marginalized community who has participated in a clinical trial? If so, we’d love to meet them and share their story. We hope to represent the many faces of clinical trials through this project, and inspire others by shining a light on their experience.
They can contact us here.
