I've made the decision to try Neuralli MP Lactobacillus Plantarum PS128, in an attempt to help reduce and slow down my Parkinson's Disease.
This researched probiotic in theory works to help restore the gut to brain pathway. See
Bened Life for more information.
"Parkinson's disease was recognized as a neurological disorder that was caused by and affected the brain. However, many researchers and physicians are beginning to point to a clear connection between the gut microbiome and PD. This has led researchers to wonder if getting ahead of gut health could not only help manage GI difficulties but also possibly slow neurodegeneration processes that start in the gut".
Given my other health issues and general poor gut health, I'm more and more thinking that perhaps this is the source of my health issues. So my thinking is to fix my gut health first and see where that leads me.
Neuralli is shipped from the U.S, and it took 12 days from placing the order online to receiving my order. There were a couple of hiccups at NZ customs which slowed the shipping process. Lessons learned: 1. Spend less than $1000NZD to avoid extra paperwork. 2. The shipper needs to include the full probiotic name and strain on the documentation.
It's not a cheap probiotic, so for value I have ordered 6 months supply. I checked with the manufacturer and the probiotic has a long shelf life when refrigerated. When kept unrefrigerated the probiotic has only a 30 day shelf life.
The little bottles were exceptionally well packaged, including 2 ice packs. The bottles arrived chilled. Also included was a temperature indicator card, which changes colour if exposed to heat.
I'm not expected to see any benefits for a couple months but I am really hoping for the reduction in my akinesia issues. This is the loss of power in voluntary movements which affects my right side. This is really becoming a real disability in my day-to-day life. If I can restore some of my normal movements that would be great.
For now I am not on any other Parkinson's medication and I am taking my probiotic capsules in the evening.
Below I will track any noticeable changes.
Day 1 - 30JUN24
Less than 24 hours from taking my 1st 2 supplements my right hand tremor was noticeably significantly reduced.
We were out at a large lunch today, which with a large social situation would normally set off my tremors, but today they were vertialy non existent.
My fingers are crossed 🤞 that this is a good sign of things to come... but it's way too early to draw any conclusions.
Day 3 - 2JUL24
Today I've noticed that my right hand/arm has regained some freedom of movement.
I was using a hand saw to cut some timber and today I was able to use my right hand. I haven't been able to do this task with my right hand for more than a year. I have been unable to sustain the push/pull motion due to my Parkinson's akinesia.
So just 3 days after starting on Neuralli I am able to use my right hand to cut timber!
It's not perfect but it's better than it was.
I'm naturally right handed, so the loss of movement in my right arm and hand has been a challenge having to rely on my left hand.
DAY 7 - 6JUL24
It's been 1 week since I started taking Neuralli. During the first 3 day I found significant improvement in my symptoms, or a reduction in them. But since about Day 4 I have slipped backwards, back into my normal Parkinson's self.
My takeaway from this is that initially the Neuralli has found and depleted all the dopamine available in my system. What I need is new dopamine producing cell regrowth to replace what Parkinson's has killed off. I guess this will take time, if at all?
The Neuralli Parkinson's study had Parkinson's patients take Neuralli in conjunction with their Parkinson's medication which resulted in great improvements in their motorsymptoms.
I've not been taking Parkinson's medication due to side effect issues.
So my plan is to try Neuralli un-medicated for the first 2 months and to see what improvements are experienced. If there's little to no improvement, then I will introduce myself again to my Parkinson's levadopa medication but at a reduced level, to hopefully minimize the side effects problems I have previously experienced.
My hope is that Neuralli will help to reduce my Parkinson's issues with the least amount of Parkinson's medication possible.
DAY 30 - 29JUL24
Honestly little to no noticeable improvement in my Parkinson's symptoms. Possibly feeling a little clearer in my head and thinking process. Also I still seem to be losing weight albeit slowly and with no real change to my diet. I first noticed weight loss when taking Yakult. My normal weight for years has been 92-93kg but I'm now down to 87kg.
DAY ? - 18AUG24
I have been feeling positive and happy about life over the last few days, and that's despite ending up in hospital last Monday due to my EoE issue. Also I feel there's improvements in my walking stride, in that my right leg that drags isn't dragging as much.
So a little improvement to report.
DAY 60 - 28AUG24
I have reached the end of my 2 month trial of Neuralli MP with out any other Parkinson's medication and I would conclude it's been a mixed bag. Somedays I feel great and get excited and start dreaming about the possibility of going back to paid employment... and I haven't felt like that for a very long time. But that sense of hope is quickly taken away.
So what's next?
My plan now is to introduce Parkinson's medication at the lowest dose possible.
When I was taking Sinemet 100/25 three times a day, which contains 100mg of Levadopa per tablet, which made me physically vomit.
So inconjunction with Neuralli MP I will take 1× Madapor tablet per day which has 50mg of Levadopa. I will take the probiotic and medication for a month and evaluate at the end.
My hope is that Neuralli will help to make the most out of such a low dose of Levadopa, giving me the much needed dopamine, all the while hopefully avoiding any of the side effects that comes with Parkinson's medication.
I don't know whether I am doing the right thing... but I am hoping that I am taking a cautious approach to obtain the benefits without the negatives.
More Evidence that there's a link between gut health and Parkinson's Disease....
Upper GI Damage Linked to 76% Higher Parkinson’s Disease Risk so I will continue on my path of trying to improve and restore my gut health while taking the smallest dose of Levadopa medication to reduce and keep at bay any side effect issues.
Day 90
It's been 3 months since I started my Neuralli journey, and 1 month since I restarted taking my Parkinson's medication and to be honest I am disappointed in the little if any improvement in my Parkinson's symptoms. I feel my thinking and thought process is much better without the brain fog. My walking stride is probably getting worse, my partner noticed that I tend to lean forward when walking... which I find that's something I do when I am walking trying to keep up with him. I think I need to see my GP about an intense but short stabbing pain I'm experiencing at very random times, isolated to the lower left side of my lung area. Feeling very old and tired.
Day 120
4 months in I am questioning the positive gains and benefits of taking Neuralli. I have been experiencing more issues despite being on Neuralli and Madapor. About a week ago I stopped taking Madapor due to ongoing headache issues that are not responding to nurofen and the headaches are making me irritable. Bit over it all, but I have booked in to see the doctor although the earliest appointment is a week and a half away.
I still have 2 months supply of Neuralli to go... it will be interesting to see what happens when I stop... what effects will no Neuralli have? At this stage I will not be reordering Neuralli.
