Introduction
The purpose of this article is to review the outcomes from employing the pragmatic solutions, covered on this website, for working towards progressive symptom reduction of Parkinson's Disease. In particular, I discuss the outcomes of the persistent practical applications on myself, and demonstrate the improvement through the records of my Video Diary.
Documentary from January 2018
Below is a short documentary demonstrating my progress over two years. At the bottom of this article, I've also included the full video records from January 2017 and January 2016 too, in order that the reader can further assess the marked changes for themselves.
Narrative of Improvement
It is important to note that I still have to take a standard prescription medication for Parkinson's Disease (Madopar 125 mg) several times a day. This is the only prescription medicine I currently take. For reference, before I started taking responsibility for my own health in early 2016, I was entirely reliant on drugs and did nothing to help myself. Back then, in addition to the standard Madopar capsules, I was also taking Ropinerole (a dopamine agonist drug) at 12 mg a day, two lots of Amantadine a day, and up to five quick acting dispersible Mapdor 62.5 mg tablets a day.
I still get wear off from each dose of the Madopar drug, meaning my free access to movement comes and goes, somewhat unpredictably, throughout the day, with my symptoms returning as each dose wears off. The entries in my video diary are usually recorded between 15 and 30 minutes after a dose of medication has worn off, to ensure they remain like-for-like comparisons of progress.
Thankfully, one of the long term side effects of the drugs, dyskinesia (uncontrolled flailing movements), from which I used to suffer terribly, has greatly diminished as part of my symptom reduction, and often now when the medication switches my movement back on I feel (and appear) quite normal. It can take anything from 20 minutes to over an hour for the next dose to kick in after the previous one has worn off. Currently, about a third of the doses don't switch my symptoms off at all, and I will have to wait for a second dose to work. This means I can be symptomatic for three or more hours at a time.
I now usually get several hours of good sleep a night, without the need to take the medication at all. This is a positive feedback outcome, as it means I get a "drug holiday" every night, which I feel is one of the things which has helped calm my dyskinesia.
When I wake up, I have akinesia - no free access to natural movement, but tend to be without the other symptoms of rigidity, stiffness, pain, brain fog. Although I have to think about every movement in this state of akinesia (for example, if I am not mindful, my steps will default to the standard Parkinson's shuffle), I'm finding that I can move around more and more easily, with a wider range of movement, as the weeks pass. In other words, I am able to notice continual overall progress in the return of my ability to move without the intervention of the drugs.
During the day, other symptoms can return, and there are many factors which can markedly affect these, including the weather and sunlight levels. Food and digestion particularly impact. I have learned through long experience and an ongoing trial-and-error elimination-and-reintroduction process, that much of my pain and rigidity symptoms are in fact caused by food sensitivities and other allergies (latex, chemicals, pollens), and, if I avoid these, I can keep these dystonia symptoms minimal. Large meals, even of optimally healthy foods for me, still impact, as does tiredness. I therefore find these symptoms seem to be worse in the evenings, after dinner. However, these days, my dystonia is largely confined to my right shoulder and right scalene muscle of my neck. This is a stark difference from two years ago, before I started seeking to turn my illness around, when the dystonia would be all over my body, including legs and face, and very intense, every time the drugs wore off.
The degree of akinesia, or my range of motion, varies throughout the day. Large scale movements can become more or less difficult, e.g. it may take me several attempts to get off the bed or to pull my trousers up after going to the bathroom, or I may be able to achieve these in single concentrated fluid motions. Likewise, my fine motor skills come and go with the degree of akinesia, for example the ease with which I can, or indeed whether I can, make myself a cup of tea can vary noticeably. However, I very rarely lose my range of motion altogether these days - I don't experience total freeze up often. Freeze is one of the most frightening aspects of PD, where one literally becomes a statue and can't move at all, getting stuck fast in arm armchair or feeling like ones feet are glued to the floor. Again, two years ago, I would be experiencing total freeze several times a day.
My loss of access to movement is usually at its worse when another symptom arises: brain fog. This is probably my most dreaded symptom currently. When I have severe brain fog, I am like a zombie, totally "out of it". I can't think clearly, cannot focus my eyes, and can barely stand due to loss of balance. I become like a sleep walker. In this state, I usually just have to lie on the bed until the next dose of medication works, although often it requires multiple doses to come out of it. I am still trying to determine what causes the brain fog and strategies/supplements which alleviate it. My intuition tells me that actually the medicine itself is largely responsible and allowing myself to become dehydrated definitely doesn't help. However, while once a daily occurrence, I can now have days pass without encountering severe brain fog.
Also interesting to note is that, while once upon a time, all these symptoms (akinesia, pain, rigidity, stiffness, brain fog, freeze) would all come together, they have now separated into distinct problems. I can have akinesia without pain, rigidity or brain fog, such as when I wake up as mentioned above, and have bodily pain symptoms without cognitive impairment, and vice versa, these days.