When I was in my early 40s, I found myself facing a concerning array of symptoms. Though I had always been strong and athletic, I felt unsteady in bringing my mug of coffee to my lips; my thumb would quiver when holding the Control + C position on the computer keyboard; typing and writing became increasingly difficult. I also experienced shoulder pain and stiffness that had no apparent explanation. Although various therapies brought partial relief, a diagnosis that could explain my symptoms remained elusive -- except for the one thing I feared most.
In spring of 2022, just over one year ago from the time of writing this blog post, I received a definitive diagnosis of young-onset Parkinson’s after clinical examination and a DaTscan. My diagnosis could have come sooner, but I dragged my feet during the diagnosis process because memories of my maternal grandmother in a nursing home, largely incapacitated by Parkinson's, haunted me. I strongly suspected that I had Parkinson’s, and I did not know how I would cope with receiving a diagnosis of the disease I had feared all my life. The day in April of 2022 when I received my DaTscan results confirming Parkinson’s was one of the worst days of my life.
Not long after diagnosis, I started treatment with Sinemet, which is a combination of Carbidopa and Levodopa. I have no regrets about this decision because it improved stiffness and slowness, reduced the discomfort I lived with on a daily basis, and restored some ability to type and write. Sinemet also made it easier to exercise and remain active overall, which is hugely important.
In spring of 2022, just over one year ago from the time of writing this blog post, I received a definitive diagnosis of young-onset Parkinson’s after clinical examination and a DaTscan. My diagnosis could have come sooner, but I dragged my feet during the diagnosis process because memories of my maternal grandmother in a nursing home, largely incapacitated by Parkinson's, haunted me. I strongly suspected that I had Parkinson’s, and I did not know how I would cope with receiving a diagnosis of the disease I had feared all my life. The day in April of 2022 when I received my DaTscan results confirming Parkinson’s was one of the worst days of my life.
Not long after diagnosis, I started treatment with Sinemet, which is a combination of Carbidopa and Levodopa. I have no regrets about this decision because it improved stiffness and slowness, reduced the discomfort I lived with on a daily basis, and restored some ability to type and write. Sinemet also made it easier to exercise and remain active overall, which is hugely important.
Searching for answers
Following my diagnosis, I searched the internet for anything that could help me, especially an alternative treatment for Parkinson’s that might alter the course of the disease. As a result, I learned that vigorous exercise is extremely important for people with Parkinson’s. The neurologist who diagnosed me had mentioned exercise, but not in a way that led me to understand its true importance. I grew uneasy, suspecting that the most important things for me to learn and implement might be up to me to discover.
As the months went on, I continued to wonder what other evidence-based options I could discover on my own. One insomnia-ridden night, I was scrolling on my phone and came across a website which centered around high-dose thiamine for Parkinson's. I’m always wary of hucksters offering false hope, but nothing on this site raised alarm bells for me. Even so, I spent just a minute or two looking around on the website, not realizing that I had stumbled across a natural treatment for Parkinson’s that would soon change my life.
A few months later, in January of 2023, I posted a question about back pain in a Facebook group dedicated to women with young-onset Parkinson’s. One woman responded that she had experienced improvement in this type of pain by taking B1, and she also noticed enhancements in mood, energy, and stiffness. A light went on for me, and I felt ready to dig in and learn more.
I joined the suggested Facebook group, “Parkinson’s B1 Therapy,” and promptly downloaded the Kindle version of the group administrator’s book about high-dose thiamine and Parkinson’s. I did some further searches on Google, this time specifically looking for information about thiamine and Parkinson’s. This led me back to the website I mentioned earlier, which turned out to be Dr Costantini’s own website, which is still accessible in spite of his unfortunate passing in 2020. Soon I came across this video and was astounded by the transformation of Dr. Costantini’s Parkinson’s patient from a bedridden state to walking, talking, and writing.
As the months went on, I continued to wonder what other evidence-based options I could discover on my own. One insomnia-ridden night, I was scrolling on my phone and came across a website which centered around high-dose thiamine for Parkinson's. I’m always wary of hucksters offering false hope, but nothing on this site raised alarm bells for me. Even so, I spent just a minute or two looking around on the website, not realizing that I had stumbled across a natural treatment for Parkinson’s that would soon change my life.
A few months later, in January of 2023, I posted a question about back pain in a Facebook group dedicated to women with young-onset Parkinson’s. One woman responded that she had experienced improvement in this type of pain by taking B1, and she also noticed enhancements in mood, energy, and stiffness. A light went on for me, and I felt ready to dig in and learn more.
I joined the suggested Facebook group, “Parkinson’s B1 Therapy,” and promptly downloaded the Kindle version of the group administrator’s book about high-dose thiamine and Parkinson’s. I did some further searches on Google, this time specifically looking for information about thiamine and Parkinson’s. This led me back to the website I mentioned earlier, which turned out to be Dr Costantini’s own website, which is still accessible in spite of his unfortunate passing in 2020. Soon I came across this video and was astounded by the transformation of Dr. Costantini’s Parkinson’s patient from a bedridden state to walking, talking, and writing.
Nothing to lose and everything to gain
Since I was quite certain that high-dose thiamine would not cause me any harm, and I did not believe that anyone in particular stood to gain from me purchasing my choice of thiamine, magnesium, and B-complex tablets, I decided to give the therapy a try. Within a few days, my energy and mood improved dramatically, leaving me certain that the high-dose thiamine therapy (or possibly a placebo effect, although unlikely) was the most likely explanation for these improvements.
Another improvement which I noticed within a week or two was my sense of smell. Suddenly I could smell my scented candles while simply walking past the shelves where they were stored, and I knew for certain this was a new development. I also realized that our family dog did indeed have odor issues, as my kids often pointed out (but I couldn’t always notice myself). My frequent olfactory hallucinations, where I would perceive a smoke-like smell that didn’t exist, became so infrequent that I almost forgot about them altogether until writing this blog post.
My journey over the past five months of looking for my thiamine “sweet spot” is enough to fill another blog post, but to put it briefly, I have “overdosed” on 500 mg (oral) per day, 150 mg (oral) per day, and 25 mg intramuscular per week. My ideal dose is much lower than many others’, possibly due to my relatively young age, early progression of the disease, and northern European genetics.
Another improvement which I noticed within a week or two was my sense of smell. Suddenly I could smell my scented candles while simply walking past the shelves where they were stored, and I knew for certain this was a new development. I also realized that our family dog did indeed have odor issues, as my kids often pointed out (but I couldn’t always notice myself). My frequent olfactory hallucinations, where I would perceive a smoke-like smell that didn’t exist, became so infrequent that I almost forgot about them altogether until writing this blog post.
My journey over the past five months of looking for my thiamine “sweet spot” is enough to fill another blog post, but to put it briefly, I have “overdosed” on 500 mg (oral) per day, 150 mg (oral) per day, and 25 mg intramuscular per week. My ideal dose is much lower than many others’, possibly due to my relatively young age, early progression of the disease, and northern European genetics.
Symptom improvements
Alongside the rollercoaster ride of overdosing, pausing, and re-starting the therapy, I have experienced noticeable improvements in my Parkinson’s symptoms since beginning high-dose thiamine therapy approximately six months ago. Here are some of the improvements I have experienced. (Note: I have made an effort to avoid making changes in medication, exercise, and so on, that could impact my results.)
Recently I was doing some volunteer work and was housecleaning alongside a friend who is very close to my age. Because of my Parkinson’s, she may not have known what to expect in terms of my physical capabilities. While we were cleaning, she was surprised to see that I was crawling around on my hands and knees to wipe down baseboards, as well as going from kneeling to standing easily. It occurred to me that this is something I take for granted, though I shouldn’t. While I have been reasonably strong and limber throughout my adult life, I’m certain I would be less capable right now if it weren't for B1 and also regular exercise.
- Easier to use a knife to cut vegetables, with increased stamina and reduced stiffness and discomfort.
- Increased strength and endurance in my voice, which is now far less prone to becoming "tired" at the end of the day or following sleep deprivation.
- Improved pronunciation and fluidity of speech. I can now repeat the phrase "Kentucky, Kentucky, Kentucky" without much difficulty, until I need to pause to take a breath.
- Improvement in walking speed and arm swing.
- Increased speed and improved fluidity of motion, especially concerning my affected arm and hand.. This is especially noticeable during my Rock Steady Boxing workouts, while wiping down countertops, and many other activities.
- My handwriting has improved, so that even a bad day is better than my good days previously.
Recently I was doing some volunteer work and was housecleaning alongside a friend who is very close to my age. Because of my Parkinson’s, she may not have known what to expect in terms of my physical capabilities. While we were cleaning, she was surprised to see that I was crawling around on my hands and knees to wipe down baseboards, as well as going from kneeling to standing easily. It occurred to me that this is something I take for granted, though I shouldn’t. While I have been reasonably strong and limber throughout my adult life, I’m certain I would be less capable right now if it weren't for B1 and also regular exercise.
Changing the baseline
As a person with Parkinson’s, I view high-dose thiamine as foundational to maintaining quality of life, and also regaining quality of life that I had lost. I have mentioned to my spouse a number of times that it feels like someone has turned the power back on to my PD-affected arm and hand. This is hugely important to me, since Parkinson’s has affected my dominant arm and hand the most. Those who aren't familiar with Parkinson’s may not realize that regaining function and improving your baseline is uncommon or even considered to be impossible, yet that is exactly what I am experiencing.
Worth mentioning is that symptom improvements can be confusing for Parkinson’s caregivers, friends, and others, since people with Parkinson’s who start taking Levodopa can experience various improvements -- I certainly did. But the improvements I listed above occurred long after any improvements I could have gained from taking Sinemet (not to mention from exercise) had a chance to occur and to stabilize.
Almost any doctor would say that I am experiencing placebo effects, or am simply mistaken in some way. But I am the one living with this disease. I am the expert on what I experience in my body every day.
Worth mentioning is that symptom improvements can be confusing for Parkinson’s caregivers, friends, and others, since people with Parkinson’s who start taking Levodopa can experience various improvements -- I certainly did. But the improvements I listed above occurred long after any improvements I could have gained from taking Sinemet (not to mention from exercise) had a chance to occur and to stabilize.
Almost any doctor would say that I am experiencing placebo effects, or am simply mistaken in some way. But I am the one living with this disease. I am the expert on what I experience in my body every day.
Realism and hope
I am still searching for my ideal dose of thiamine. I still take Levodopa medications, and have symptoms, frustrations, and bad days. I sometimes worry that high-dose thiamine won’t slow the progression of my PD, and that all of my worst fears will come true by the time I’m 65 years old.
But if there is one thing I have learned, it’s that I cannot allow fear to take the lead. I have a responsibility to take care of myself to the best of my ability, and I have seen so many improvements attributable to high-dose thiamine that I can’t imagine my future without it.
I never expected to find hope in a few bottles of inexpensive vitamins. My immense gratitude goes to Dr Costantini, Daphne, Sergio, and the many others who have made it possible for me, and so many others, to find hope in this unexpected place.
But if there is one thing I have learned, it’s that I cannot allow fear to take the lead. I have a responsibility to take care of myself to the best of my ability, and I have seen so many improvements attributable to high-dose thiamine that I can’t imagine my future without it.
I never expected to find hope in a few bottles of inexpensive vitamins. My immense gratitude goes to Dr Costantini, Daphne, Sergio, and the many others who have made it possible for me, and so many others, to find hope in this unexpected place.
K. in U.S.A.
