By Penny Mitchell, Independent Knowledge Worker and Health Reseacher, diagnosed with Early Onset Parkinson's Disease.
This article is based on a series of posts which I shared in the Parkinson's Disease Fighters United (PDFU) Facebook Group. Gary Sharpe asked me to contribute these as an article, and I am happy to share here too, in case other people with Parkinson's may benefit from my journey and experiences.
April 21st 2017
Today, I am having a terrible day. It feels like I am having a cognitive breakdown. I can't concentrate on anything for more than thee minutes and keep task swapping, so not getting anything done. This has been going on for six hours now. Nothing achieved except the washing up.
I still havent bought any nutritional supplements to help treat my PD. I cant make a decision. But maybe I should start in a small way by focusing on what might help my declining mental capacities. What are the most important things for this?
A few things people have mentioned lately are:
The first and second are precursors of acetylcholine. Thoughts?
May 7th 2017
I think I'm going to have a bit of a break from PD on Facebook. I just want to feel normal for a little while. Will someone please DM me if they find a cure while I'm gone?
May 9th 2017
I kind of knew I wouldn't be able to survive long without PDFU. My first stash of nutriceuticals finally arrived. Now I need advice on dosages, and what time of day is best to take what?
May 16th 2017
I've just bought Glen Pettibone's e-book,
on my Kindle. Glen has so much knowledge about neurochemistry that he has been sharing in recent conversations here.
May 21st 2017
Progress Report. I've been taking this stuff for 11 days now and definitely noticed a difference. The past two mornings I was able to get out of bed feeling quite normal. Over past year, I have consistently felt really bad in the mornings until my levodopa kicks in. I take it as soon as I wake up and lie in bed until i feel mobile enough to get up. This Saturday morning, I got up to make cup of tea and then moved on to do a few other things and then suddenly remembered i hadn't had my morning meds! Then again Sunday morning. I got up to make tea and coffee for my house guests and I felt well, while my guests were a bit worse for wear after having a few drinks last night. I took my meds about an hour after I got up because I started to feel a bit vague, but I had no tremor!!
May 27th 2017
Brain bubble of the day:
More and more research is showing that PwP have low levels of many many vital nutrients especially antioxidants. This is taken by some as a rationale for taking supplements of these nutrients. However, the science is also telling us that a significant proportion of the popular supplements (e.g. glutathione and even NAC) are not sufficiently penetrating our brain cells, or even crossing the blood brain barrier. If these nutrients aren't getting to our brain cells how can they help us? (Unless they can help us through neurons in the gut?)
This all suggests to me that rather than any particular nutrient deficit having a causal role in PD (and most researchers doubt this anyway) there is something about the Parkinson's Disease process that is depleting these vital nutrients and exacerbating the disease process, or damaging our brain health in other ways (this is an established hypothetical viewpoint btw, not my idea, I just came to this today via my own thinking process here ).
Which brings us back to the gut hypothesis of PD. I wonder if PwP who have managed to improve the health of their gut (eg now have less leaky gut) have:
(1) more normal levels of the key antioxidants that are depleted in the rest of us?
(2) are better able to shift nutrient supplements taken orally, into the brain?
(3) if there is some other yet unknown aspect of the disease that is responsible for nutrients we eat not getting to the brain?
If we think about the variability present amongst us in so many ways, surely there is variability in Blood Brain Barrier penetrance of key nutrients? I suspect there is variability that allows toxins/poisons more access to some brains than other. If so, surely some people with PD have better BBB penetrance than others for key nutrients such as GSH and NAC?
Would such a BBB penetrance mechanism be a useful topic of study in PD etiology and treatment research? And a topic that could help push forward research on various pharmaceuticals and nutriceuticals?
June 3rd 2016
I've been taking probiotics for 3 days now. First time in my life. I think they're doing what they're meant to. Also been eating a batch of home made fruit jelly packed with spicy antioxidants inspired by David Spry's red belly jelly. Tummy feels good.
June 6th 2017
Fighting The Cognitive Symptoms of PD.
I've just done something I havent been able to do for about 2 years. I was diagnosed a year ago. I just sat down this afternoon at 5.30 pm and crafted a complex email to the elected reps of my Shire Council explaining a seriously complicated change to something my community group is asking from them in their budget process. I finished at 7.30 pm and I was concentrating fully sharply effectively for the full 2 hours.
I havent been able to do this sort of thing for so long. PD had robbed me of this, and replaced my mental capacities with more or less constant Brain Fog and Brain Flooding.
But about 5 weeks ago, I started taking some supplements including Alpha GPC, L-Methylfolate and Methylcobalamin. My cognition began to improve within 2 weeks. I have been able to work longer hours, talk sensibly the whole time in long meetings, and organise an overseas trip.
But a down side of the initial regime was headaches and I discovered Alpha GPC can be responsible for this side effect. I cut the Alpha GPC dose in half but still had headaches. So I had to stop it altogether.
Then i bought Lions Mane (Gary Sharpe asked me to trial it) and Ginkgo Biloba (Veerle Aertsen said I need this for improved focus). I've been using these for a week now, instead of the Alpha GPC, and I can report that my cognitive problems have continued to abate. I am definitely improving no doubt about it.
Another key sign is I am now working on a new research proposal. Again, something I've not managed for 2 years.
August 25th 2017
Methylation, Folate and Cobalamin
Ok, David Spry has been hassling me to write a full report on my experiences with methylfolate and methylcobalamin.
I was diagnosed with PD in April 2016. When i started levodopa it worked almost immediately to improve my motor symptoms (tremor, bradykinesia, postural imbalance, occasional dystonia). But it had no effect on my cognitive symptoms (a full list is shown below). The things that worried me most were regular brain fog, vagueness or a feeling of empty brain, and flooding/brain overload or a feeling of too many competing thoughts overwhelming me. These symptoms made it more and more difficult for me work even though I was only working part time from home.
Then i started rasagiline about 6 months into my diagnosis. This allowed me to cut back my levodopa dose from 3x100/25 to 2x100/25, but it had no effect on my cognitive symptoms.
After listening to talk about supplements on PDFU for several months including Laurie Mischley's video Food for Thought, and especially the info about methylation and folate from David Spry, i decided that my symptom profile and other medical history was consistent enough with the hypothesis that I was undermethylating.
So after a particularly bad day of brain flooding and decision-making breakdown that had me in despair, I took the plunge, acquired and started taking methylfolate and methycobalamin around late April or early May this year.
The effect has been remarkable. Within about two weeks I started to notice an improvement especially in the distressing brain fog, vagueness and this horrible thing I call 'running out of words' where suddenly my brain would get too tired to finish explaining things to other people and U would just stop talking mid sentence. Since then there has been continued improvement such that I've been able to work longer hours, and even start a new project that requires my old academic brain to function at high levels.
Please note that a bit later, after the initial improvement, I also added Gingko Biloba and Lion's Mane for cognitive support and I think they did add a bit more improvement.
Even though I've not had my genetics tested and don't know if I have any "MTHFR" gene variations, the results have convinced me that I have been suffering from undermethylation for many years, and that this problem has contributed to my PD, depression, and my decision to leave the full time workforce some years before my diagnosis.
I've devised my own little scale to give you a structured idea of the range of cognitive symptoms that have been improved.
Mitchell Scale of Cognitive Symptoms in PD (MSCSPD)
These results show change recorded at 24 August 2017 from taking only prescribed meds (levodopa 12 months and rasagiline 6 months) before adding methyfolate and methylcobalamin 4 months ago (lets say 1 May 2107). I've averaged the symptoms over the 4 months before and 4 months after.
This 'average' includes assessment of frequency and severity.
High score = worse problem
- Brain fog was 5 now 0
- Brain overload or flooding was 3 now 1
- Vagueness / empty brain was 5 now 1
- Moments of confusion was 4 now 1
- Running out of words while talking was 6 now 0
- General forgetfulness was 7 now 4
- Fatigue / sleepiness in day was 5 now 0
High score = better performance
- Planning and decision making was 5 now 8
- Remembering names was 5 now 7
- Word finding was 5 now 9
- Grammatical oral sentence construction was 6 now 10
- Short term memory was 6 now 8
- Motivation was 6 now 8
- Navigating complex new environments was 4 now 9
By the way, can anyone recommend a standardised scale for cognitive symptoms that i could use to continue monitoring? Does the UPDRS have one? I'm going to change the products I used for methylfolate and methylcobalamin (cheaper product) and want to see if effectiveness declines.