I'm sure this has been studied exhaustively, but I can't help but wonder if we have the same disease--and about the implications for studies which fail because sufficient numbers of us fail to improve. Are there studies which only recruit PwP with one particular subtype? Could some treatments work better for those who are tremor dominant while others work better for PwP with PIGD?
I have read that cases of Parkinson’s disease can be divided into three groups based on what motor symptoms are most prevalent: tremor dominant (TD; the subtype associated with tremors), akinetic rigidity (AR; slow and stiff movements), and postural instability and gait disturbance (PIGD; difficult standing or walking). I fall within the AR subtype and have never had a resting tremor. Is it possible that the neuronal loss I have sustained stems from a cause completely unrelated to whatever causes tremors? Is it possible that any cure for me will be of no benefit to you? Is it possible that lumping all of us together for research skews results? I know these are simple questions, but I am not aware of simple answers.
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jimcaster
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What you say makes so much sense that it almost has to be true. In time, there may be a matrix of gene defect on one axis and symptom subtype (as you have described) on the other, giving us 12 or 15 (or more) actual diseases that each need different treatment.
Some of the chat in the more research focused facebook groups is increasingly heading in this direction, but of course it takes time and money, and is less possibly less commercially attractive than discovering a single disease slowing drug that works for all or most PD patients.
This is part of why voting in progressive governments that prioritise science and innovation over tax cuts and obscene military spending is so important for future generations.
I agree to that possibility. Taking separate disease that have similar symptoms and grouping them under Parkinson’s
Very good thoughts. I've thought some might have something different but I never thought about it skewing the trial results. There might be another category, non-motor symptoms.
If a cure targets stopping the cause, there are definite differences. When cures target replacing or healing dopamine cells, a cure may be common for different causes.
You are absolutely asking the right questions. Since there is no single marker (blood test,universal gene abnormality) yet, everyone gets lumped together.
Along similar lines, I often wonder how helpful it is to compare "notes" with other patients/people when we have all had the disease for different lengths of time, starting at different ages and with different manifestations.
There is so much more work to be done. My one hope is that something is discovered in the next decade which will at least slow the disease progression significantly enough before my children are old enough to be at risk.
1. There is a concept in health, and biology, and also engineering, which in signaling science (which is the umbrella under which neurological disorders fit), called "overdetermined," which I will let you look up and learn of on your own. Basically it means when an outcome or disorder, whichever you like, has more than one cause and sometimes is the result of more than one of these causal factors combining to create unnecessary threshold to become a functional entity that the person experiences.
2. Another, perhaps related or integrated or subordinate concept, which the most immediate metaphor or illustration I can think of, has to do with when a common mechanism applies and several related but different settings, living two separate outcomes which only by parents seem disparate or from different causes. The analogy I think of most easily is: a house wired with copper wired circuits and circuit breakers. The basic wiring is similar throughout; however, each circuit services a different set of appliances, combination of wattage, time and draw or load. Some circuits will have different quantity or density or length of wire to service appliances with higher needs for wattage and resistance. Each circuit has its own particular route, and overages are tripped by separate circuit breakers, and subject to voltage variances, interruptions, and surges. Each individual circuit is separate and distinct from the others, and do not occupy the same space. Each circuit composition is subject to similar but somewhat different environmental conditions, such as dust, humidity, temperature changes and ranges, and any other factors such as some more than others exposed to mice nibbling on wires, or possible other variable stresses, , leaving to different rates of degradation or perhaps can we say aging. Downstream output devices that consume the signal may have their own additional demand and environmental effect characteristics, such as having surge protectors (and not) or composed of different sizes and series of their own wiring, which create their own unique and individual and collective influences on that particular circuit, thus creating small but distinctive variations and that particular circuit's behavior, and wear and delivery patterns.
Now suppose that for whatever reason, storm, power surge, age, dirt, dust, loose sitting at the circuit box, one or two or some combination of circuits are tripped out. suppose further that the tripping out is not an all-or-nothing proposition, but can be in grades or stages, themselves possibly a variable changes through Time, depending on whatever. They don't necessarily all go out at once, and those that do don't necessarily go out all in one shot. Suppose further bad some of the wiring will gradually degrade and change its ability to transmit in some manner or other but thereby deliver it signal in a manner somewhat less or more different Lee than each other circuit because of its unique circumstances that affect its otherwise more or less identical construction two other circuits. Would it not be possible for the downstream effects similar in appearance to the experience of say Parkinson's, of the (or six, or nine???) various different subtypes or similar-appearing groups of symptom etc? Suppose your downstream outputs (light bulb, say) puts out different forms of energy or illumination, resulting in similarly differential effects on the basic wiring and signaling system? Example, incandescent bulbs, themselves of different wattage? or fluorescent bulbs again different wattage different output different light temperature different wear characteristics and function characteristics loading the wiring?
Now, when changes occur so that the functionality changes, and then to the point at which I need to change is perceived, (such as we find in different houses, different neighborhoods, different power stations, different weather), then could the required fix be similar in many cases but distinctly different in smaller aspects among all cases? could it not be that the solutions might differ in ability practicality availability, materials, some being available some not at all available depending on the circumstances? It's very much like that in electrical wiring, powering appliances with electricity. Nerves are electrical wires controlled by and operated by often similar but often very distinctly different forms of power, because the electrons are driven by various and not a single source of chemical activation (all the many different neurotransmitters are chemically different and have chemically different and distinctive ways of creating the particular electron potentiation and movement that is the basic product of nerves, operating and different, not the same, spheres of output... Motor nerves, efferent nerves, nerves operating alongside or separate from nerves and functions such as organs or balance or proprioception or heart beating or energy transfer or waste management, and a rising in and initiated by or stimulated by many different complex chemical processes).
Everything is driven by electrons, but how you get them stored accumulated accessed coordinated and then concerted with other similar systems sometimes also in the very same nerves and nerve systems are organized, can function quite differently yet have to work together, and different combinations in different places for different functions...like an eye vs. a foot, or tremor vs. a freeze... and yet also different combinations for similar or identical functions (such as a foot vs. a hand or balance of standing vs. balance of holding a glass or plate) that happened from more than one source, such as occurs with arousal, fight or flight, anxiety, depression, learning, memory, other forms of cognition, based in various places and yet also having connections with other centers, functional nodes, networks, some coordinated with the others and some not, or sometimes coordinated and at other times not. One group are different from each other, suggesting different causes...another group are basically the same, but in different locations (tremor in hand versus the same tremor in a foot), suggesting all one disease cause.
All these different ways of sourcing, arranging and controlling and delivering electrons, and just the right amount for the variable needs of moment-to-moment living, all may differ substantially just as wires do, because just as with wires, our nervous system is run by such complex arrangements... Except that with our nerves, the source of the electrons is electrochemical, and takes many different pathways in forms simultaneously, all of which are different systems with different characteristics aging, maintenance needs, operational life, operational output over that lifespan.
Actually perhaps the analogy is more like a large building with many different types of businesses in the building. Or like a town or city with all kinds of different things going on yet all run by the same basic electron process, yet all have different ways of getting those electrons found and moving, since electrical power is basically run by a stream of electrons, yet our power is run by a whole bunch of different such delivery mechanisms (otherwise called all the different neurotransmitters). But in signaling, electricity once in the wires and operating the downstream appliances is basically the same whether flesh operating muscles or memory, on the one hand, or copper wire running your toaster, oven, water heater, desk lamp. This would be the form of disease that is basically the same cause, rather than different types. The different symptoms and perhaps related or clusters of symptoms really would not be because the systems are different, but because of variable problems with the mechanics in different parts of the system resulting in different symptoms etc etc etc. in other words, single treatment single cure rather than different diseases different category different mechanism different disease entities.
Since the common pathway is still always electrons, and electrons are the same wherever they are, why would we necessarily have to have different diseases rather than different expressions of the same disease based on different effects on all the different variable features within that same system?
And it would be interesting to know if different causes resulted in different symptoms. Like do people who are poisoned with mercury, agent orange, roundup or other chemicals exhibit more of the rigidity symptoms as opposed to being tremor dominant, etc......
I have been asking myself the same question since pd diagnosis. Non tremor dominant, levodopa having little positive effect but tons of side effects, still three mds diagnosed pd...
I totally agree. I think I have PIGD type. I’m I’m not sure the cause but in my case , I had a bad injury (head injury included) when I was two when a grandfather clock on me, and the only other suspicion I have is a diet too high in sugar. I have lived a very healthy life apart from that, grew up in quiet suburbs with no exposure to toxins (except for perhaps some stuff in our food we ingest) and no pollution.
I just heard about PIGD type having a higher incidence of diabetes insidious.
The use and marketing of levodopa led to oversimplified models. Circa 2020, 'tis difficult to overcome such a thoroughly ingrained and widespread mindset.
He is a great worker and has done a lot of research he has written books on Alzheimer's, Parkinson's, ataxia and all other neurodegerative diseases and in summary he says that all these diseases have a common cause. But I don't want to simplify too much. I cite only one of his research entitled "Mitochondrial Medicine for Aging and Neurodegenerative Diseases".
Thanks Aspergerian, this will make it available to anyone who wants to deepen, but the author in the conclusion tells us how great is the difficulty of finding a cure for this disease to current knowledge. IMHO some answers have been given by the studies on vitamins, but a great advancement in research / discovery will probably be needed which could pave the way for a significant increase in longevity.
You are right. There are no simple answers. The medical community and certainly those who develop medical treatments recognize what you say, in a broad way. Disciplines such as “personalized medicine” and “companion diagnostics” seek to identify tests that can be used to sort people for effective treatment — and to sort for recruitment at the clinical trial stage. Many clinical trials are ineffective because the test group is too broad. The sorting characteristics you mention (e,g. how our symptoms present) are one axis. There are others — root cause is genetic, epigenetic. Issue is exacerbated by microbiome, immune issues, etc.
I expect you will begin to see more pharmaceutical companies targeting very specific mechanisms and patient populations. Of course, they will balance this against profitability— they won’t target rare groups. This isn’t because they are evil but because they are businesses.
On a personal level, I don’t think we have the same disease. And I don’t think it’s helpful for me — a young rigidly and bradykinesia gal — to hear success stories for tremor people. Their successes don’t transfer to me. But..then again, while the tremor people don’t progress as fast as us, they have few successes for eliminating their tremors. So...I guess in the end, I appreciate our community that includes all of us.
I agree 100%! I put myself in the PIGD type. I met someone yesterday that mirrored my condition. Both diagnosed almost 2 years ago at 58 and have the same symptoms like walking and balance issues as well as no tremor and little response to Levodopa. Although he is progressing faster and looking for a wheelchair
I have bradykinesia on my right side, poor sense of smell, terrible handwriting, and toe dystonia when I jog, but nothing which really bothers me. Look at my profile for more information regarding supplements. I have never tried medication.
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So which 'subtype' are you?
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