The Book ‘ENDING PARKINSON’S DISEAES: A PRESCRIPTION FOR ACTION’
First, I would like to thank the EPDA for asking me to review the book ‘Ending Parkinson’s Disease: A Prescription for Action’ for them.
In addition, I would like to thank the writers and their teams in advance for their progressive informed decision to write for us Parkinsonian’s this guide, this bible for Parkinson’s.
I therefore see Ending PD as an ‘umbrella’, an umbrella body under which all Parkinson’s groups could fall.
The book gives you an immediate insight into how all industrial and agricultural operations can point a direct finger at the ‘co’ potential causes of the onset of Parkinson’s.
I am therefore naming this a ‘Welfare Disease’ that is unprecedented!
For us Parkinsonians and partners, caregivers, neurologists, Parkinson’s nurse, and everyone else involved, a handle to ensure that we are heard and seen in a progressive, determined, and collaborative way.
Not only for us Parkinsonian’s, but most certainly also for Generation Z and Generation Alfa. To save them from this pandemic more and in time!
I would say:
‘Stand up for our wellbeing, speak up for our rights and let’s do this together. We are United!’
When I look at myself, it took me quite a long time to know what I had (And I think I’m certainly not the only one, especially in poorer countries and big countries where not every Parkinsonian can visit a neurologist directly).
At one point I got pain and pain from my joints on the left side and felt that my left leg was acting strange. As in the past I could not walk the dog for long and I ended up with the rheumatologist through the doctor. It initially had pictures of my left shoulder, hip, knee, and ankle taken which showed that I had and still have mild osteoarthritis in all joints. This explained my pain. Because the pain was quite severe, I went back to the rheumatologist after a few weeks to ask if it was a mild form because the pain became more unbearable. I suggested the visit to a neurologist. The rheumatologist thought that was a good idea, but first she sent me to the orthopedic surgeon to see if there was anything left could be done. It resulted in me having an inflamed tendon in my shoulder that he could inject into, which might help. In my knee he saw a pick that they could possibly take out, but he could come back soon. At least the syringe did, and this helped though. After doing this, I received a reference to the neurologist who, unsurprisingly, immediately determined after several tests that it could probably be Parkinson’s. A month later, I went for the second appointment, and the neurologist was sure. I was diagnosed with Parkinson’s disease. I got information from her right of way and had to make an appointment with the Parkinson’s nurse from Parkinson Net in a month.
From the Parkinson’s nurse I received the book ‘A new challenge with Parkinson’s’ and started my search for the disease. To read me further, I have visited a lot of internet pages.
This means that I can call myself a privileged Parkinsonian because the care here in the Netherlands for Parkinsonian’s is very well arranged. The Parkinson Net is also being rolled out in other countries for a reason. Something that is certainly a challenge, but not inescapably important. And for most countries this must be possible to achieve this.
In addition, I watched all the broadcasts of Parkinson TV by Bas Bloem because I wanted to receive as much information as possible for myself. This is partly because I wanted to volunteer for the Parkinson’s Society. I have set up my own website for Parkinsonian’s and traffic anxiety/driving anxiety. For those interested:
In the meantime, since my diagnosis in May 2019, I have read Peter van den Berg’s book ‘A New Challenge with Parkinson’s’ which explains in detail what life means with this chronic progressive disease. I have also read books on the cognitive load and side of Parkinson’s. The book ‘Ending Parkinson’s Disease: A Prescription for Action’ is the main publication of the onset of the disease and in my view the leader of all other books.
About the book
In addition, the book would make me want to do more sports. In the meantime, I have applied to our municipality for financial assistance for an E three- or four-wheel bike because I have become more insecure on a two-wheel bike. Then I can do my hobby cycling again more, longer and with less uncertainty. As for the Mediterranean diet, my wife and I have been doing this for about five years. Our passion is Italian cooking, tasting, and enjoying. At Italian times and with the healthiest ingredients, quantities and of course a glass of wine with music. For those interested:
Personally, the book is for me an eye opener and a handle to discover what has been going on in my life and what I may have been exposed to in my working years.
I would like to tell you when and where I think I may have developed Parkinson’s disease. In my younger years, I was 21 years old, I worked as a sailor on a tugboat. At that time, 1981, there were not many protective equipment present and neither was it necessary, I have to say, I did not do it directly either. When we went to maintain the boat, I sanded the iron with a mouth cap, but it did not always help as well, so that abrasive dust could end up in your nose. But when we Painted, we did not use a mouth cap. We also used lead menia paint, here as the word all treachery, lead added to the paint and served as an underlay to counter the rusting of the ship. So, the fumes were released from this that you could inhale directly or indirectly. After sailing I also worked for a few weeks in a printing company. Here, tracks ran through paint machines where, for example, buttercups were pressed and later punched in the shape of the buttercup and butter cover. During the work, something special happened, something I did not know could happen. At one point the track got stuck and the valves where you could see the track had to be opened. I opened a track and got a full layer of silver-grey paint all over me. There was a hardener in the paint which forced me to remove this from my hair with solvent. Furthermore, I have worked as a driving instructor for a long time, for about 35 years, where you are exposed to exhaust gases, despite the filters they use in cars to counter this.
In addition to this job, I also worked as a trade agent for six Italian companies in robotic systems, metal processing machines and parts. For them I visited metal companies, foundries, and other industries where metal, aluminum and iron were processed. Of course, we always did a tour of the factory to see if I could praise my suppliers and think along in the customer’s needs. Here too, there could have been a possibility where Parkinson’s might have been at the root of it.
I would like to share these four facts with you, if only to make you think where and when you think you have been exposed to such work.
What surprised me the most was that there are so many possibilities that could cause Parkinson’s disease, that I now want to make a fist for the Generation after me and together with my other Parkinsonians and agencies such as EPDA, EndingPD, The Michael J. Fox Foundation and all the others can and should do something to stop it.
The fact that in some countries there are no neurologists available for people with a neurological disorder and therefore not for Parkinsonians concerns me. All Parkinsonians are very intricately connected through various Facebook platforms and through other internet groups. That is why we need to make a strong case for all Parkinsonians through global organizations such as the WHO to include them in the spread and financial assistance to fellow Parkinsonians who do not have direct neurologist and medical care. The fact is that there is still a long way to go and how we can work together and fight together with governments, federations, pharmaceuticals, and the companies that develop and make the pesticides. We also need to keep talking to each other, because the more distance the less can be achieved.
The most interesting thing about the book is the detailed description so that you can put your finger exactly in a place where you might have gotten the Parkinson’s from.
I wanted to read the book ‘Ending Parkinson’s Disease: A Prescription for Action’ to gain more insight into how the disease is taking a run in progression around the world and why the writers are now talking about a pandemic.
The answer is clearly defined and a beacon for me and I think also for all my fellow Parkinsonians and our loved ones.
What strikes me in the book is that both smoking, and coffee can reduce the severity of Parkinson’s. Unfortunately, both substances are a problem for other diseases such as cancer and thrombosis. In addition, I find smoking, which I have done a lot in my younger years (I have now stopped for 20 years), just like my wife very much Dirty. I used to drink coffee a lot, but now I drink less. This is because I had thrombosis and the cardiologist then advised me to drink less coffee because it extracts moisture from the body. It was better to drink more water, which I do now. Also comes in handy with Parkinson’s.
Although a lot is written about the problems in the US, we can also translate this to all other countries of the world. The book paints a clear picture of what is happening around Parkinson’s around the world and that we need to take another big step to stop this terrible disease as well. We, Generation baby boomers, X and Y are obliged to do this to ourselves, but certainly to the next Generation Z and Alfa.
This means that we must ensure that governments listen to us, especially on pesticides.
An example from the Netherlands is the following:
Here with us in the Netherlands, the Minister of Agriculture, wants to ban the pesticide Mancozeb. Mancozeb is a derived from of Maneb.
20-05-2020 Minister Schouten wants to ban agricultural poison mancozeb / Zembla BNNVARA
Minister Schouten (agriculture) does not want to renew the approval of agricultural poison mancozeb. The Minister will let us know in a letter to the Chamber. Today (20-05-2020) and tomorrow, there will be a meeting in Brussels on the European Commission’s draft proposed not to renew this activesubstance.
Mancozeb is the best-selling fungal exterminator in the Netherlands. The sales figures requested by Greenpeace Netherlands from the government show that in 2017 no less than 2.5 million kilos of the product were sold. The drug has been linked by scientists to Parkinson’s disease which was previously featured in the Zembla broadcast ‘ Parkinson’s in the countryside‘.
Read more at Zembla BNNVARA
Also look and read this:
Monsanto/Beyer EU manipulating:
Date May 25, 2020
Concerns answering questions about “manipulations of Monsanto to affect European authorization of glyphosate”
From the pesticides, these substances also enter the air and groundwater, drinking water. And there are already other substances that expose people that can be directly or indirectly linked to diseases such as Parkinson’s, but also respiratory infections and other serious diseases.
Although I hate what happened currently with the corona virus, it was clearly laid bare how bad our air quality was and suddenly improved when the whole world had to go into lockdown. Also, an eye opener and a reason to turn our system to green, clean, and clear.
Here, too, we must make our voices heard. By the way, if we do not do this, Generation Z is going to do that, so we’d better hang out with them.
The book also describes also that drugs for cancer and HIV/AIDS are well available and have brought with it such a lot of costs is of course very frustrating that this cannot be done for L-Dopa. Here too, we must make a powerful fist and enforce it. Covid-19 does also, even the time to get some medicine is long away, but the run in whole the world is extremely high. If this all is possible for those drugs, it must also go for Parkinson the authors write. Levodopa is such easy drug to make and still it is not available in a lot of Country’s. We parkinsonians benefit so much that it makes our quality of life so much greater that we give it to all our fellow Parkinsonians.
Because I like to use my skills, I participate in various studies including the Parkinson’s on Size study of the Radboud UMC in which people follow my movements and others via a research watch. In addition, I will also be doing two other scientific studies on a Parkinson App and a new driving simulator at the UMC Groningen.
Of course, I highly recommend this book ‘Ending Parkinson’s Disease: A Prescription for Action’ given my findings. Both for us Parkinsonian’s as well as our loved ones and certainly also for care professionals.
I cannot repeat it often enough, we stand side by side to force for each other to protect us and to support each other. We are United!
To all my fellow Parkinsonians, I would like to say: you are not alone, we can win this together.
Stay strong, Stay focused, Stay healthy!
Hans van Geluk, Parkinsonian and founder of Parkinson(isme) and Traffic Participant