My Walk4ALZ 2024 Fundraising Page
Amanda Thompson
Team Thompson- Walk4ALZ 2024 Fundraising Page
In May of 2023 I scheduled an appt with my primary care doc to get a referral for a neurologist. At the time, I was having trouble focusing and remembering things. I had been having trouble for quiet some time but figured it was mostly "mom brain"- lack of sleep, hormones, stress postpartum, etc. But it got to the point of concern when I'd be singing to Quinn and stop right in the middle of a song I knew because I forgot the words and tune. Or when putting away dishes, and not being able to recall the name of something but could find any word related to it. I struggled to articulate my thoughts, find words, and hold everyday conversations. I also noticed a significant loss in memory recall, to the point where I was losing confidence in my abilities at work and would get in arguments with Joshua about what did or didn't happen or what was said or not said.
Finally I went to the doctor thinking I just needed to see a specialist and get some Adderall to help me focus better. My wonderful PA though was very thorough and ordered blood work and gave me a referral for a neurologist.
The neurologist I saw was even more wonderful. I've been super grateful throughout this process for my exceptional care team that listened and heard me and believed everything I had to say. I had held off on going to the doctor for so long because I didn’t think anyone would take what I was experiencing seriously.
The neurologist did some initial assessments. Reviewed my labs and ordered more tests. And then sent a referral in for a special brain mri that would measure volumes of my brain anatomy.
My results showed significant loss of white brain matter. And by significant I mean I fell below the first percentile for my age group. I was shocked and in denial and then I spiraled. And then we spiraled, for four days as we waited for my follow up appointment.
Not gonna lie, it was a low point and a very dark place to be in limbo. Not knowing exactly what it all meant, other than it wasn't good and of course considering all the worst case scenarios. Scenarios that are still hard to think about. And the internet was no help. By the time I was done digging, I figured it was white brain matter disease or ALZ.
But after spiraling for a while, I pulled it together as best I could. Made peace with the fact that I couldn't change the results and that if I was going to find out how my end of days would come, I'd face it because I already had a beautiful life and nothing was unfair about that. I promised Joshua and Quinn that I'd do all I could to be my best, for as long as I could. And he and I went to my follow up visit together, holding hands every second of the way.
And we left with better news than we could have hoped for. We discussed all the potential diagnosis with my neurologist- tbi, genetics, neurodegenerative disease, etc. Still unanswered questions, but a big sense of relief. White brain matter disease was eliminated off the list and we had the next steps.
I was evaluated by a special Neuropsychologist, one of only 9 in North America. He did a wild, 7 hour exam to test different areas of my brain. After a few weeks I got the results and his assessment didn't show strong signs for early onset ALZ. And while he couldn't say with certainty that I don't have ALZ, what he could tell me is that exhaustion, stress, and anxiety were crippling my struggling brain. He gave me a long list of action items. At his request I did a psychiatric evaluation as well and will eventually start DBH therapy to address my anxiety.
As part of my overall treatment plan as this was unfolding, I started a two drug regimen for ALZ and a med for my anxiety. We're leaning towards this white brain matter loss as being genetic and not a neurodegenerative disease. I did a sleep test as a precaution for the fatigue and am averaging about an hour more sleep this year than last by making changes to my daily routine. I also started drinking a pack of liquid iv every day at the recommendation of my Neurologist in addition to lots of water because the brain loves hydration and I do crossword puzzles or sudokus every night before bed. I also need to start learning a new language. Learning a new language is the best exercise for the brain.
In all of this, my care team and my personal support team never dropped the ball or wavered. I really don't know how anyone goes thru something like this alone. It was scary. And it might be scary again, but having knowledgeable and caring providers and the best friends and family, get you thru it.
Over the last year, my memory and cognitive function have improved. So has my relationships and anxiety. I'm still tired but overall less stressed. And while I do have bad days, where it feels like I forget everything and have trouble remembering to take my meds, I am a little less critical of myself and my situation.
One big relief in this process was the validation. Crappy that my brain isn't what it should be, but also a relief to know that I'm not crazy, imagining things, or just an inconsiderate listener.
Every day kinda feels like a win. I might still get a PET scan to see if I have the proteins to know once and for all if I have ALZ, but for now, I'm enjoying life as it is. I know all of my tests helped to establish a baseline so I'll continue with yearly MRIs and special exams so we can learn more as time goes on. Things may change, time will tell us all more about what's to come but for right now, I'm enjoying every moment I get.
Truly grateful for my friends and family and my medical team that got us to this point. I want everyone to have access to treatment and support like I have had. There are more than 100,000 San Diegans living with Alzheimer's or another dementia. Please consider registering to walk, donating, or sharing this page to help. 100% of the dollars we raise will stay in San Diego to help our community.
Love and thanks,
Team Thompson
Finally I went to the doctor thinking I just needed to see a specialist and get some Adderall to help me focus better. My wonderful PA though was very thorough and ordered blood work and gave me a referral for a neurologist.
The neurologist I saw was even more wonderful. I've been super grateful throughout this process for my exceptional care team that listened and heard me and believed everything I had to say. I had held off on going to the doctor for so long because I didn’t think anyone would take what I was experiencing seriously.
The neurologist did some initial assessments. Reviewed my labs and ordered more tests. And then sent a referral in for a special brain mri that would measure volumes of my brain anatomy.
My results showed significant loss of white brain matter. And by significant I mean I fell below the first percentile for my age group. I was shocked and in denial and then I spiraled. And then we spiraled, for four days as we waited for my follow up appointment.
Not gonna lie, it was a low point and a very dark place to be in limbo. Not knowing exactly what it all meant, other than it wasn't good and of course considering all the worst case scenarios. Scenarios that are still hard to think about. And the internet was no help. By the time I was done digging, I figured it was white brain matter disease or ALZ.
But after spiraling for a while, I pulled it together as best I could. Made peace with the fact that I couldn't change the results and that if I was going to find out how my end of days would come, I'd face it because I already had a beautiful life and nothing was unfair about that. I promised Joshua and Quinn that I'd do all I could to be my best, for as long as I could. And he and I went to my follow up visit together, holding hands every second of the way.
And we left with better news than we could have hoped for. We discussed all the potential diagnosis with my neurologist- tbi, genetics, neurodegenerative disease, etc. Still unanswered questions, but a big sense of relief. White brain matter disease was eliminated off the list and we had the next steps.
I was evaluated by a special Neuropsychologist, one of only 9 in North America. He did a wild, 7 hour exam to test different areas of my brain. After a few weeks I got the results and his assessment didn't show strong signs for early onset ALZ. And while he couldn't say with certainty that I don't have ALZ, what he could tell me is that exhaustion, stress, and anxiety were crippling my struggling brain. He gave me a long list of action items. At his request I did a psychiatric evaluation as well and will eventually start DBH therapy to address my anxiety.
As part of my overall treatment plan as this was unfolding, I started a two drug regimen for ALZ and a med for my anxiety. We're leaning towards this white brain matter loss as being genetic and not a neurodegenerative disease. I did a sleep test as a precaution for the fatigue and am averaging about an hour more sleep this year than last by making changes to my daily routine. I also started drinking a pack of liquid iv every day at the recommendation of my Neurologist in addition to lots of water because the brain loves hydration and I do crossword puzzles or sudokus every night before bed. I also need to start learning a new language. Learning a new language is the best exercise for the brain.
In all of this, my care team and my personal support team never dropped the ball or wavered. I really don't know how anyone goes thru something like this alone. It was scary. And it might be scary again, but having knowledgeable and caring providers and the best friends and family, get you thru it.
Over the last year, my memory and cognitive function have improved. So has my relationships and anxiety. I'm still tired but overall less stressed. And while I do have bad days, where it feels like I forget everything and have trouble remembering to take my meds, I am a little less critical of myself and my situation.
One big relief in this process was the validation. Crappy that my brain isn't what it should be, but also a relief to know that I'm not crazy, imagining things, or just an inconsiderate listener.
Every day kinda feels like a win. I might still get a PET scan to see if I have the proteins to know once and for all if I have ALZ, but for now, I'm enjoying life as it is. I know all of my tests helped to establish a baseline so I'll continue with yearly MRIs and special exams so we can learn more as time goes on. Things may change, time will tell us all more about what's to come but for right now, I'm enjoying every moment I get.
Truly grateful for my friends and family and my medical team that got us to this point. I want everyone to have access to treatment and support like I have had. There are more than 100,000 San Diegans living with Alzheimer's or another dementia. Please consider registering to walk, donating, or sharing this page to help. 100% of the dollars we raise will stay in San Diego to help our community.
Love and thanks,
Team Thompson
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