MSA - Part 1; How and Where Do I Start….
“spilling the tea on living with a rare neurodegenerative disorder”
Hello dear friends,
So here I am standing here at the gate living with MSA (multiple system atrophy) trying to discern and open up greater awareness to this rare health condition. This rare condition is so complex and thus over this month of March, I will share from my personal perspective how MSA has affected and impacted my health, my life as well as how and what I am doing to lengthen my life span with the condition.
So what is MSA?
Let me begin with the basics in the easiest way possible for us all to try and better understand.
Multiple system atrophy (MSA) is a progressive neurodegenerative disorder that affects both the central nervous system (which controls how we move) and the autonomic nervous system, (which controls involuntary functions such as blood pressure, bladder function and digestion.
This health disorder is similar in many ways to Parkinson’s Disease, but yet both health conditions show up and progress quite differently in so many people. Some people get worse faster than others, and many patients go to their doctor with differing symptoms often getting misdiagnosed before the correct diagnosis is made. That was my experience and I will draw on my personal MSA story as March flows forward.
There are two main subtypes based on the predominant symptoms of MSA;
1 MSA-predominant Parkinsonism (MSA-P)
2 MSA-predominant cerebellar ataxia (MSA-C).
As a patient is diagnosed with multiple system atrophy they will often and over time appear to have either MSA - P or MSA-C and/or vice versa, so these subtypes are not always set in stone.
So what does MSA do to the brain and body?
MSA shows up in almost every patient so very differently but what is known, is that it causes deterioration and gradual damage to nerve cells in the brain - from my personal experiences it has been within the cerebellum, basal ganglia and brainstem that affect internal body functions and motor control quite destructively through the nervous system. Again, I will dive deeper into the damage that MSA has inflicted upon my brain and body across the next few weeks.
So what causes MSA?
It is so hard to write a clear statement as there is so much that remains unclear about this health condition. I have read in a lot of different research journals and articles, as well as hearing from different neurological specialists that history of trauma and autoimmunity could be factors for the onset of MSA. But nothing can be statistically proven, which makes it so difficult and frustrating as a patient or a loved one of those affected by MSA to understand .
As you can see, with still a lot not known about this health condition, no cure for multiple system atrophy is available. This makes managing the disorder so very difficult. Currently patients are being treated for the symptoms as they appear so that life can be made as comfortable as possible and thus that bodily functions remain intact. With no way of slowing the progression of MSA throughout the mainstream medical system at this time patients are typically living for 6 to 9 years after symptoms have thought to have begun. In many patients as time passes symptoms get worse bodily functions weaken and become non functional.
Personally, I became frustrated by this wait and see way of living and barely surviving. In 2020 I embarked upon my own documented journey of using alternative modalities and therapies to assist me in keeping my MSA signs and symptoms progressing more slowly than what mainstream research suggests. Across the last four years, with the book and the film documentary being able to be written and created, I aim to show real time evidence to patients, their families, healthcare professionals and researchers that indeed there is hope for all that live with this rare progressive neurodegenerative disorder. And thus, it is that I have been able to live for more than 10 years with this condition. And that is why I will be continuing to document my future steps, with my goal to keep living well, better and longer.
I hope this has allowed you to understand a little more about multiple system atrophy and what it is through a patients eye.
Part 2 will be my personal story of how MSA has impacted me and how I am fighting it in a very different way to what mainstream healthcare suggests.
xox