Is this how we are perceived?
...ha, ha, you don't mess with us!
We have will, ability, humor, creativity and Parkinson's
Shaken, not stirred
Parkinson's and the joy of life
Shaken, not stirred 5
PUBLISHER: BJØRNEBOE PUBLISHING HOUSE
P.A.Holmsvei24 1164 OSLO
PHONE:
400 10 101
E-POST:
Jan.Bjorneboe@hotmail.com www.bjorneboe.no
AUTHORS: Jan Bjørneboe
GRAPHIC DESIGN: Geir Esben Østbye
PHOTO:
Olav Heggø, all photos unless otherwise stated
Jan Bjørneboe: 47 ,49, 53, 55, 61, 63, 65, 124, 127, 129, 132-134, 137, 149, 151-153, 155, 162
Esben Østbye: 12-13,123
TorG.Stenersen56,59
COVER PHOTO: Olav Heggø
WRITING: Frutiger Light, Baskerville
PAPER: Gallery Art Silk 130g
PRESS: Kolofon Publishers
© Bjørneboe Forlag, www.bjorneboe.no
Oslo 2017
ISBN978-82-300-1678-7
This book may not be copied in contravention of the Copyright Act or in contravention of agreements on copying made with KOPINOR, an interest organisation for copyright holders. The prohibition applies to both the entire work and parts of it, including storage in electronic media, display on a monitor and recording on tape.
6 Shaken, not stirred
Shaken, not stirred
Parkinson's and the joy of life
Jan Kærup Bjørneboe
OlavHeggø
Esben Østbye
BJØRNEBOE PUBLISHING HOUSE
Shaken, not stirred 7
A big thank you to those who were willing to be interviewed and thus contributed to the creation of a book.
Parkinson's patients, relatives, coaches, therapists, doctors, researchers, neurologists and the Norwegian Parkinson's Association.
Morten Wishman and his dog
Felix Knud Holck Landmark
Trine Blom
Lisbet Edvardsen Viig
Olaf Jansen
Eivind Øyslebø
Susan Smerkerud
Rune Vethe
Liv Køltzow
Marie Bruheim
Ingebrigt Slørdal Bruheim
Carl Henrik and Julius Bjørneboe
Sølvi Eidissen
Cecilie Kjensli
Espen Dietrichs
Ketil Berstad
DeborahTeclemariam
Johnny Carlsen
Turid Svendsen
Reidar Saunes
PerOlaWold-Olsen
Camilla Breen
Audun Myskja
Asta Bye
Filippa Gulli Bjørneboe
Ragnhild Stenshjemmet Støkket
Sverre Nilsen
Magne Wang Fredriksen
Knut-Johan Onarheim
Norwegian Parkinson's Association Unicare
Fram
Ministry of Health and Care Services
- by Minister of Health Bent Høie
Oslo Boxing Club/Park and Sport
Thetraininggroupat CCVestbyRitaHartford
Parkinson's sufferers across the country, unite in the Norwegian Parkinson's Association!
8 Shaken, not stirred
About the book...
Writing a book about Parkinson's doesn't exactly sound like a "blockbuster". In Norway, there are around 8,000 shaking souls. It is estimated that 1 per cent of the population over the age of 65 and 2 per cent over the age of 75 develop Parkinson's. But the sad thing is that the market for the book is only getting bigger. More of us, including Parkinson's sufferers, are living longer. In addition to the 8,000, there are friends and relatives. Comparable countries such as Sweden and Denmark have a total of around 22,000. Since we patients are a little older, let's say that each of us has 20 people in relationships such as family, friends, neighbors, colleagues and acquaintances. That makes the target group for this book 600,000 people. In addition, there are all the "people in white" who work with us. Approximately 700,000 Scandinavians are thus affected. In addition, there are all the curious people and then we are up to the population of a large city. And there are more than 10 million Parkinson's sufferers worldwide So, this is a book that will hopefully mean a lot to many people. The first print run will probably not be like Jo Nebø's crime books,but...
The book is written by a Parkinson's sufferer who wants to "Fight back!" The aim is to get more knowledge about the disease out to those affected, carers and society. By creating more publicity, there will be more funding for research, training and rehabilitation.
The three of us behind the book are a professional photographer, a designer and a part-time retired executive vice president, the latter with Parkinson's. As a team, we have worked together for many years with many publications.
Thephotographeranddesignerareidealists.TheCEOruns more under the slogan "If you can't beat them, join them" andhisgoalisthesameastheactorwith Parkinson's, Michael J. Fox: By 2045, there will be a perfect treatment for Parkinson's.
Much of the book consists of interviews with doctors, researchers, trainers, physiotherapists and, not least, the main characters themselves: the Parkinson's patients. Making appointments has been like knocking on open doors. Thank you very much to all the contributors for contributing to this book. You have been incredibly positive.
The title of the book is: "Shaken, not stirred". A slogan used by both James Bond and Parkinson's sufferers. When I think of the kindness we've been met with, I don't just want to say "Shaken, not stirred", but also "shaken and stirred".
Thank you very much for your help!
JanKærupBjørneboe Olav Heggø Geir Esben Østbye
12 Shaken, not stirred
"I think we can eliminate what is unpleasant," said one of the doctors I met about five years ago. But I still had some strange experiences..."
Shaken, not stirred 13
Photo Esben Østbye
One-way ticket to HELL, or Fight Back?
Text: Jan Kærup Bjørneboe - Shaken, not stirred
- "I think we can eliminate what is unpleasant," said one of the doctors I met about five years ago. But I still had some strange experiences. I pulled and pulled at my sock, but it still lay like a crumpled lump under my toes. Every time I took my shoe off to check, and that was often, the sock was nice and flat. Just not in my head.
What's going on, mate? Don't you smell this, said everyone in my family. My grandson's poopy nappies, a rough smell in the bathroom, the smell of coffee in the morning; my sense of smell was gone. Weird. A wrinkled sock and no odour? Well, I'm approaching 60. Things happen.
Shaken, not stirred, was still something I only associated with James Bond. But sure enough, my left leg began to tremble. Shaking, all out of my control. Coincidentally, I was having lunch with several doctors and I asked them. But no; no-one could say anything about it. Naturally, diagnoses are not made over a prawn sandwich and a waffle.
14 Shaken, not stirred
I was sure that The one-way ticket to hell was booked. But luckily it wasn't paid for...
not stirred 15
Shaken,
So, what now? I didn't go back to work, I went home. Called Sølvi, of course, as always. Comforting words.
I immediately started surfing the web and began to gather information. After reading online and skimming good manuals from the Norwegian Parkinson's Association, I realized that this is an individual disease that varies greatly from patient to patient. But it is degenerative, so "five a day" does not provide a cure.
I looked at all the prescriptions I had received, and I thought that I wasn't alone. 8,000 "colleagues" in Norway alone.
... a voice shouted: FIGHT BACK!
Now what? Things didn't get better. I changed over to new socks. Smooth and nice. But they wrinkled At least mentally. The trip went back to the National Hospital. New neurologist. New examinations, needlesandMRI.The tunnel of hellfor someone who has only heard the word claustrophobia.
" - Get me out!" This won't work. Anxiety took hold right into the soul. But you have to have an MRI. So, it's good to have a doctor brother who invites you to breakfast with something to eat. A few pills disappeared, the body and head calmed down and we walked to the X-ray department. Hello! You're a man, albeit a drugged one.
Everything ok on MRI. So, what's next? I was sent for a DaTSCAN. DaTSCAN is a nuclear medicine examination of the brain. A radioactive liquid is injected into your arm, you're told that it's expensive, that it's supposed to come back after three hours, and then you're put in a machine that makes the MRI fade. The DaTSCAN machine is cramped. With a28-year-old nurse beside him, who probably should have worked in psychiatry, things went smoothly.
The testis performed to detectchanges in the brain's dopamine activity. These changes can occur, for example, in Parkinson's disease. A tracer labelled with a small amount of radioactivity is used to determine dopamine activity in the brain, and a gamma camera or SPECT/CT is used to take the images. The images were taken, and the neurologist said: You have Parkinson's.
16 Shaken, not stirred
Timeout. A 60-minute timeout occurred in my dopamine-deficient brain, and the parts of the brain that deal with emotions took command. The tear ducts were in full production, the world went dark even though the sun was shining, anxiety tried to take command and succeeded; almost.
I was sure that the one-way ticket to hell had been booked. But fortunately, it hadn't been paid for and thus wasn't redeemed. The sun came back. I looked at all the prescriptions I'd received and realized that I wasn't alone. 8,000 "colleagues" in Norway alone. For a while, I was really shaken and on the verge of being stirred.
But a voice called out: Fight back. Someone who has really fought back is actor Micael J. Fox, who has had Parkinson's for many years. He says: "Call me an optimist, but I believe we will find the cures we're looking for by 2045, especially because of all the smart and passionate people working to make it happen."
DEAR Michael, this will not happen in my time. But I promise to do my utmost to contribute to yourvision. I hope that this book will help shine an even stronger spotlight on Parkinson's patients and Parkinson's disease.
PS. Positive side effect: the sock no longer creases.
Minister of Health and Care Services Bent Høie launches:
ParkinsonNet
-DuringavisittotheNetherlands,IwasintroducedtoParkinsonNet. It's a tool that people with Parkinson's disease use to cope with everydaylife.Heretheycanconnecttoanetworkthatisavailable to all Parkinson's patients in the country. On this network, patients communicate with each other and exchange advice and tips on livingwiththedisease.Theycanfindtheirnearestphysiotherapist, speech therapist or doctor with expertise in the disease. Experience shows that patients receive better and more personalized help through this network, and the need for hospital treatment is reduced," says Minister of Health and Care Services Bent Høie.
- We will now be trialing this model in Norway. Rogaland and Oslohavebeenselectedaspilotcounties.TheNorwegianNational Advisory Unit on Movement Disorders at Stavanger Regional Health Authority will be responsible for running the project in collaboration with the Norwegian Directorate of Health and the Norwegian Parkinson's Association. The project will involve approximately 1,000 patients and last for two years. "I'm convinced that this model is highly transferable to other patient groups. The goal is that ParkinsonNet will act as a locomotive for the way in which we provide services to patients with chronic diseases,"saysMinisterofHealthandCareServicesBentHøie.
18 Shaken, not stirred
The day ParkinsonNet was unveiled was a day of joy for all Parkinson's sufferers
From left. Anne GretheErlandsen, State Secretary of the Ministry of Health and Care Services, Magne Wang Fredriksen, Secretary General of the Norwegian Parkinson's Association, Bent Høie, Minister of Health and Care Services, Bas Bloem, initiator professor/neurologist, Knut-Johan Onarheim, Chairman of the Norwegian Parkinson's Association
Shaken, not stirred
... a happy day in every way. It's fantastic that we've managed to bring together the people who developed this in the Netherlands, Norwegian authorities, politicians, experts and user organizations," says Magne Wang Fredriksen, Secretary General of the Norwegian Parkinson's Association.
ParkinsonNet is a project in which the Minister of Health has been personally involved, and Mr. Høie believes that ParkinsonNet can become a model for other chronic diseases. At aconference in Oslointhe springof2017,theministermarkedthestartof thepilot project. The Parkinson's Association also strongly endorses ParkinsonNet and the Secretary General attended the conference:
– "This is a happy day in every way. It's fantastic that we've managed to bring together the people who developed this in the Netherlands, Norwegian authorities, politicians, professionals and user organizations. This has to be good," says Magne Wang Fredriksen, Secretary General of the Norwegian Parkinson's Association, after Minister of Health and Care Services Bent Høie officially launched a Norwegian version of the Dutch ParkinsonNet model in Norway.
Norway will be the first country outside the Netherlands to implement the ParkinsonNet model for better follow-up, treatment and care of people with Parkinson's.
–
"We have great expectations of ParkinsonNet, and I promise to follow the project closely," says Minister of Health and Care Services Bent Høie. Mr. Høie is keen to see how the Dutch model can also be used by other groups with chronic diseases. The Minister of Health and Care Services has previously emphasized the importance of easier access to healthcare professionals with diagnosis-specific expertise. The ParkinsonNet model will contribute to this.
Knut-Johan Onarheim, chairman of the association, believes that ParkinsonNet is the best model in Europe for looking after people with Parkinson's disease. He has great expectations for the project.
Interdisciplinarity and the user at the center
- Thinking about and organizing interdisciplinary resources can strengthen each individual with a chronic disease and help ensure that health services have
necessary expertise from the professional groups you need," says Onarheim.
Rogaland and Oslo have been selected as pilot project areas. Thomas Rannstad Haugen, project manager for the project at the Directorate of Health, says the Dutch have spent 15 years getting to where they are today.
- We are starting up in the same way as they did with a network for systematic training of key staff working with Parkinson's patients.
ParkinsonNet was developed in the Netherlands as a national program for people with Parkinson's disease. Users' knowledge of their own disease, customized self-training and self-treatment are the basis of ParkinsonNet.
Bas Bloem from the Netherlands is a professorand neurologist who is well known in Norway by Professor Dietrich at OUS/Rikshospitalet (see page 112). Bloem works at the Department of Neurology, Radboud University Nijmegen Medical Centre, the Netherlands. He completed his doctoral studies at Leiden University in 1993.
In 2002, he founded and became medical director of the Parkinson's Centre Nijmegen (ParC), which was recognized from 2005 onwards as a leading center of excellence for Parkinson's disease. Together with dr. Marten Munneke, he developed ParkinsonNet, an innovative healthcare concept that now consists of 66 professional networks for Parkinson's patients covering the whole of the Netherlands (www.parkinsonnet.nl).
ParkinsonNet is an initiative where an interdisciplinary approach helps to improve the quality of healthcare services. The model provides an opportunity to tailor the treatment to the individual's needs and life situation. ParkinsonNet in the Netherlands started with 20 dedicated physiotherapists. Now there are 3,000 professionals, 69 regional networks and 12 different professions.
20 Shaken, not stirred
Shaken, not stirred 21
Parkinson's in focus
2017 is a joyful year for those of us working with Parkinson's.
There has been a "summit" on brain health with Prime Minister Erna Solberg and Minister of Health and Care Services Bent Høie, in which the Parkinson Society participated. "It's great that the Prime Minister is taking the initiative to organize such a meeting to listen to and discuss the challenges faced by people with neurodegenerative diseases. The meeting helps to raise awareness of serious brain diseases such as Parkinson's.
Furthermore, the Minister of Health has introduced ParkinsonNet based on a model from the Netherlands, which in brief means that an interdisciplinary treatment program is developed in collaboration with the patient so that important professions are not left out for the Parkinson's patient.
But we still have paths to tread. The general level of knowledge in Norway, for example, among many of the patients and first-time therapists, is too low. The more attention we get in the press, online and in books, the more we can improve treatment options and communication with Parkinson's patients, and not least generate money from various sources for research and treatment.
This book is an important contribution to highlighting the serious and optimistic sides of Parkinson's. ItprovidespersonalaccountsfromParkinson'spatientsandrelativesindifferent situations. In addition, doctors, researchers, nutrition specialists, physiotherapists, coaches and speech therapists offer their advice. The book embraces the diversity that exists among people with Parkinson's disease and will be of great help to Parkinson's sufferers, family and friends and therapists in various professions.
Magne Wang
Fredriksen Secretary
General
Norwegian Parkinson's Association
22 Shaken, not stirred
Shaken, not stirred 23
24 Shaken, not stirred
Dr Parkinson, I presume...?
The year is 1817 and I have chosen to take a trip to London. Right now, I'm strolling outside The Royal College of Surgeons.
Many prominent gentlemen go in and out of the building and my hope is to meet Dr James Parkinson. He has recently published his "An Essay on the Shaking Palsy" and is a much sought-after man both among colleagues and press. The doctor is an enterprising person who publishes political pamphlets and medical essays.
Just now at lunchtime he comes down the stairs and I take courage and say:
– Dr Parkinson, I presume?
The man turns to me and immediately realizes that I'm what will one day be called a Parkinsonian. He says:
– If you would like an appointment, please contact my secretary. Parkinson continues to disappear rapidly. I run after him, take him gently by the arm and say: "Would you like to have lunch with me? I'm very interested in your essay. Parkinson hesitates, but says quickly:
– I'd love to. Come with me to Rules in Covent Garden. They have great food there. We sit in elegant surroundings in the restaurant's palm garden, savoring roast beef sandwiches and a light red wine. I notice that James, as I call him in my quiet mind, relaxes more and seems curious about who I am.
– From Norway, you say. Then allow me to congratulate you on your new constitution. You didn't get your independence, but you're on your way. Sweden is better than Denmark.
26 Shaken, not stirred
Dr James Parkinson's first edition of: An Essay on the Shaking Palsy, 1817.
London's oldest current restaurant: Rules in Covent Garden, from 1798.
not stirred 27
Shaken,
After this uplifting start, I seized the opportunity and said.
– If you had known that your name was going to be immortalized through your essay and also be associated with unpleasantness, would you still have published it?
– As you probably know, Mr. Bjorbo, I'm sorry, but I can't pronounce your surname. May I use the simpler name of Mr. Jan? Splendid, splendid. As you know, Mr. Jan, the history of the world is full of people who have taken great responsibility for moving humanity forward. This disease has been known for hundreds of years. Greek physicians in antiquity, circa 700 BC and 500 AD, scratched their heads and wondered why some people shook and others did not. It's possible that one of the most influential doctors of all time, Claudius Galen (130200 AD), was close to the solution at the time. After all, he was also a bodyguard for gladiators, which gave him a rich supply of living and dead, to say the least. That's why he studied anatomy and surgery and became particularly interested in bodily fluids. An interest I fully share. Perhaps Jesus also came into contact with someone who asked nicely for healing. We don't know the outcome, and it doesn't appear that the twelve sworn men made any notes about this. Something they actually should have done. But there are several famous people who saw that something was wrong with someone. Leonardo da Vinci (1452- 1519) made his observations as he walked among the living and the dead. You could almost say that he had a somewhat unorthodox approach: The dead were regurgitated at night, brought into Leonardo, who was no doubt digging deep into the brain's substantia nigra, the black substance. That's where things go wrong for you. What did you call the patient group, perkinsosis’s?
A terrible name, by the way. Why don't you call them "The shaken, but not stirred people? Now then, where were we? "Of course, we don't know what Leonardo found, but he still deserves credit and thanks for his efforts," says the doctor.
– So, Jesus was a carpenter and a preacher and as such represented two professions. Leonardo had many talents such as painter, sculptor, architect, engineer, inventor, scientist and pathologist. The latter profession without the formal papers. As if that weren't enough, William Shakespeare also came for
more than 150 years ago. In his poetry, he used descriptions such as trembling and paralysis.
– You know your Shakespeare, don't you, Mr. Jan? This is where James Parkinson gets all dreamy-eyed and moves his reasoning far into the literary world.
– As Shakespeare said: "Something is rotten in the state of Denmark". Good thing your country escaped the Danes," says Dr Parkinson with a smile.
We each light up our own cigar. Parkinson praises this pleasure, butdoubtswhethertobaccocanbe used more in the world of medicine. I quickly interject:
– Did you know, Doctor, that smokers have less Parkinson's than non-smokers?
Jamestakesanotherdragofhiscigar,thinks,letsthe smoke out and says:
– I have not tested this out. Nor have I seen any essays on this topic. But personally, I believe that it soothes the brain. Just look at the French court where they have used this plant for a long time. A couple of hundred years ago, the French queen Catherine de' Medici used tobacco for headaches. The French are some strange creatures. However, I see that smoking is spreading. I think it's going to become an enemy of society.
– But Doctor, you smoke yourself, don't you? Parkinson looks almost cheerful at this confrontation, orders two sherries and says:
– Every human being must have one or more vices. If you don't, you're not a human being. But let's now move on to the reasoning behind my essay.
The Greeks, Leonardo and William all observed the disease. But neither the Greek doctors, Da Vinci nor Shakespeare described the disease. They were luminaries in their fields, but not scientists or trained medics. That's why my essay is groundbreaking. Everything in it is based on observations of sick people. They don't actually come from the cemetery, but from the living world.
James’s saviors his sherry and takes another thoughtful drag on his cigar. As I contemplate his impressive exterior, I think about his background. Born on 11 April 1755. Little James had the best genes and heritage to become a doctor. His father was the apothecary and surgeon John
Parkinson's from antiquity to the present
Ancient physicians and Galen of Pergamon (130-200 AD). Ancient physicians and the famous Galen of Pergamon record the first signs of what are probably symptoms of Parkinson's disease.
Leonardo da Vinci (14521519) made his observations as he walked among the living and the dead, researching, recording and taking notes, and there are many indications that he described the symptoms of Parkinson's disease.
JamesParkinson(1755-1824)an English apothecary surgeon, political activist, palaeontologist andgeologist, wroteAn Essayonthe Shaking Palsyin1817.Inthatwork he is thought to be the first to describe paralysis agitans (shaking palsy), a condition which Jean-Martin Charcot renamed Parkinson's disease sixty years later.
Jean-Martin Charcot (18251893) - a French neurologist and professor of anatomical pathology, also known as the founder of modern neurology. His studies between 1868 and 1881 are described today by medical historians as a "landmark in the understanding of Parkinson's disease". He also clearly defined and explained the difference between rigidity, weakness and bradykinesia (a slowness in the execution of movement). Charcot is also famous for naming and being the first to describe multiple sclerosis.
Frederic Lewy (1885-1950) - a prominent American neurologist is best known for the discovery of Lewy bodies, characteristic indicators of Dementia with Lewy Bodies and Parkinson's disease.
Konstantin Nikolaevitch Tretiakoff (1892-1958) - a Russian neuropathologist. While writing his thesis for his doctorate at L'Assistance Publique des Hopitaux de Paris, France, he described the degeneration of the substantia
nigra in cases of Parkinson's - he was the first to link this anatomic structure with Parkinson's disease. Tretiakoff's findings were not accepted by many in the medical community, until they were confirmed in further studies carried out by Rolf Hassler, in 1938.
Rolf Hassler (1914-1984) - a distinguished German pathologist. Hassler made important discoveries in the treatment of Parkinson's disease. In a 1938 published paper, he wrote that autopsies of Parkinson's patients showed that the most
affected part of the brain was the substantia nigra pars pallidus, which lost many neurons and had an abundant accumulation of Lewy bodies. He became a pioneer in surgery for tremor.
Arvid Carlsson (1923) - a Swedish scientist who was awarded the Nobel Prize in Physiology/Medicine in 2000 for his work on dopamine, Carlsson is best known for his work with dopamine and its effects in Parkinson's disease.
He demonstrated that dopamine is a neurotransmitter in the brain and not just a precursor for norepinephrine.
Kazimierz Funk ( 18841967) - a Polish biochemist. Until the arrival of "levodopa", anticholinergics and surgery were the only available treatments for patients with Parkinson's. Funk first synthesised levodopa (L-Dopa) in 1911, but it was not until the middle of the last century that it received any attention. In 1967, levodopa entered clinical practice and revolutionised Parkinson's management.
Parkinson's and when James studied medicine in London, he worked in his father's practice, which he later took over. He married Mary Dale. Apparently, fertility drugs were in short supply and James lasted the course and had eight children, two of whom died early. Not much is known about what happened to Mary.
But the good James was interested in more than medicine. Under the pseudonym "Old Hubert", Parkinson published anti-royalist pamphlets during the French Revolution, and participated in political organizations that, among other things, advocated fundamental tax and prison reforms. Not exactly a "mainstreamed man" from the Centre Party. Around 1800, several medical essays were published, but the essay that the whole world was waiting for, at least all perkinsosis’s and hopefully neurologists, came this year, i.e. 1817.
In other words, this is a very talented man with a wide range of interests.
– Dr Parkinson, history is full of examples of sending the sick away from the healthy citizens. Why don't they do that with us Parkinson's sufferers so that we don't become a burden on society? After all, there is absolutely no treatment.
– A primitive thought, Mr. Jan. I am inspired by the humanistic spirit of Hippocrates. That's why I see several exciting treatment methods such as bloodletting, mercury and enemas. Farces have always excited us. But I believe in both chemical and even mechanical removal of farces
In my quiet mind, I'm thinking that James should only have known how groundbreaking his thinking is. Just look at the book "The Charm of the Gut" and many other "shitty" literature. Research is being conducted into changes in the gut contents and the fact that much misery begins in the gut.
In 10 years’, time, "flinging shit" could possibly become a term of honor. Parkinson's may also be caused by a fungus. A fungus?
– But I have heard that some of your treatment methods are downright dangerous? And that some patients are protesting?
Dr Parkinson gets a tight pull on his face. The cigar glows extra. He puts it down, bends slightly over the table, catches my eye and says:
– These methods are the pinnacle of what we now have
30 Shaken, not stirred
to offer. Some patients have deteriorated slightly and there have been deaths. Although my treatment doesn't help all my patients, I see progression in several. We are only at the start of a revolution where, after a good number of years, we will have full treatment for these poor souls. But there are, of course, peoplewho don't want to be treatedwith these methods. They are afraid of modern medicine, but that has always been the case. But the individual patient must not stand in the way of progress. Take mercury, for example. An excellent drug that restores the body's normal structures. Secondly, it is important that we use anatomical examinations to gain knowledge about these unfortunate, trembling people who cannot now be cured either with the help of medicine or God. And we shouldn't be running around stealing corpses from cemeteries but doing this at the best universities within an ethical framework.
Clearly pleased that Mr. Jan had been put in his place, he leaned back slightly and, to my relief, ordered two more sherries. Yezzz, I thought. The conversation continues.
So, it can't be said that Parkinson was afraid of testing new methods. In any case, the Norwegian Medicines Agency would have called him in to discuss his concerns.
But like all other pioneers: He had no supporting literature from Greek doctors, Jesus, Shakespeare or Leonardo. So he made do with what existed around 1817 and it was important that James published this essay for the general inspiration of the entire medical profession. After new sherry had been served and James had regained his friendly demeanor, I ventured forward with a new question:
– Dr Parkinson, what does the future hold?
– "I still believe in bloodletting, mercury and laxatives. Scopolamine and atropine, which calm the patient, will come more strongly into the treatment. Spiked apple leaves are also being tested. Arsenic and bromine are exciting, untested compounds. On the more mechanical side, I believe that long, shaking train journeys, hanging patients and shaking the brain may have effects. Vaccine urine from patients who have recovered from infectious diseases, combined with the expulsion of intestinal contents, should not be ignored either. But all this is still some way off.
– Dr James Parkinson, I am very grateful and honored that you took the time to meet with me. I have been very inspired and not least enlightened. But allow me to say a little about what will happen. In 200 years, my tremor will be in high gear as I write this. Despite medication. You will always be admired for your wit and guts to put down on paper how we Parkinson's sufferers feel. You are the first and your name is etched in history through "An Essay on the Shaking Palsy". But, dear doctor, you are unfortunately wrong on some points. We may have come a long way in 2017, but Parkinson's disease still affects millions of people. This would probably have shocked you if you now had access to Google.
– Perhaps they would also like to know who immortalized their name? It was a French doctor, Jean-Martin Charcot (1825-1893), who gave a morethorough descriptionof the disease.Allowme to reproduce an article in Cold Spring Harbor Perspectives in Medicine for you:
"Long before stiffness actually develops, patients have significant problems performing normal activities. This problem is related to another cause. In some of the patients, you can easily recognize
how difficult it is for them to do things, even though stiffness or tremor is not the limiting feature. Instead, even a cursory examination reveals that their problem is related more to slowness in executing movement rather than true weakness. Despite the tremor, a patient is still able to do most things, but he performs them with remarkable slowness. The time between thought and action is considerable. One would think that neural activity can only be realized after remarkable effort."
But Charcot did not forget your 1817 essay and he was the first to suggest the use of the term "Parkinson's disease".
– But a big thank you for describing the disease. You have shown great courage, and your essay was groundbreaking, and your name is immortalized. At least until 2045. That's when my Parkinson's colleague Michael J. Fox says the disease will be gone. I believe that when your name wanders into the valley of oblivion, it will be with your full consent.
– Mr. Jan, this was very interesting information. Can you send me an e-mail when the time comes?
Drawing from Dr James Parkinson's book Villagers Friend and Physician. Credit: Welcome Library, London. Fold outfrontispiece and Title page with an illustration depicting the Alehouse Sermon. It may be James Parkinson who is depicted standing in the center
The neurologist: - You have Parkinson's!
The message is brutal, and it is given to the patient in many ways. Everything from just being told to contact the Parkinson's Association and there's the door, to a longer conversation where you get good and constructive advice.
Having spoken to many people with Parkinson's, I know that theinteractionbetweenthemessengers(read:doctors)andthe recipients (read: people with Parkinson's) varies. It was once an old custom to kill the messenger if the news was bad. After many years of experience and the research of the time, it turned out that this did not solve any problems.
"I still don't think this is the solution, as we want to keep our neurologists. Yes, we even want more. But underneath the white coat, neurologists are just like the rest of us. Some are good at talking to people, others are not.
Whatever form the message takes, you have Parkinson's. So what do you do?
As I said in the introductory chapter, I had 60 minutes in the black. At the end of this black period, I realized two things:
– I need to get my hands on knowledge about something I know nothing about, i.e. Parkinson's.
– As a start, I need to find this knowledge in a place and in such a form that it doesn't knock me out in the phase I'm in now.
The internet is a sea of opportunities. The amount of information is enormous, with 53 million Google searches for the word Parkinson's. Please help yourself.
Mostofushave friendsand familywhoare close to us. They are important conversation partners but remember that everything has a saturation point. Don't overload them and realize that some of them are very concerned about you and your future. Therefore, also use all external opportunities and tip family and friends who want to know more about the Association's websites.
Perkinsosis’s,unite. Join the Parkinson's Association. Together we are strong.
Here's my advice. I emphasize mine. I don't know if they're suitable for others, but if they inspire me, I'm happy.
1. The Parkinson's Association I assumed, with my diagnosis in mind, that there was an association, and there is. I searched for Parkinson's Association and came across the Parkinson's Association's website. That's where my new world began. The reason I went to the Association's website was that I thought the information was easy to understand, accessible and that it offered hope. All this turned out to be true. There are many people you can talk to on the phone via the Federation. The helpline is a free service for members of the Norwegian Parkinson's Association who want medical advice.
The Parkinson's helpline is operated by people who have Parkinson's themselves or are relatives. Like persons, or super users as I like to call them, are people who have Parkinson's themselves or are relatives who can be contacted directly by phone or e-mail.
Professionals consist of a panel that responds to enquiries received by email or online form. You can also read previous answers here.
2. Neurologist Find a neurologist you trust and with whom you communicate well. Make sure you are called in regularly for consultation as we have a degenerative disease.
3. Medication Ask and dig about why you are receiving these particular medications. What are the possible side effects, what does your medical picture look like in the years ahead, etc. Then follow the neurologist's recommendations carefully. Don't get sloppy with your medication. Read the package leaflets but remember that they are also written by lawyers who don't want to meet your lawyers. Don't be alarmed by everything it says.
4. Your GP Make sure that your GP is kept informed at all times. In my experience, their knowledge of Parkinson's varies, but he/she sees thewholepictureofyou as a patient and the GP can be a good dialogue partner.
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5. Seek knowledge Now is the time to seek more knowledge about the disease. The Parkinson's Association has many booklets and a lot of good material on its website. The Michael J. Fox Foundation is also recommended (Google translate, which you can't rely on blindly, can help). Surfing the web is also exciting, but don't read anything that makes you uncomfortable.
6. Dig, but don't bury yourself Join the Association and attend meetings. Meet likeminded people with Parkinson's. You'll quickly feel a sense of community. Ask and dig, but don't bury yourself. Embrace tips on medication, diet, exercise, mental health, etc. Seek out the elderly. Many of them have a lot of good advice.
7. Exercise I strongly recommend a stay at a rehabilitation center that specializes in Parkinson's. (Seethe Association). All exercise is good, but there are many simple and good exercises that are known to be good for us. Why don't you learn them? What's more, you'll meet a lot of nice people among both therapists and patients. A place like this can be the University of Life for us Parkinson's sufferers.
8. Keep exercising Medication is good, but it's in the exercise that I think the secret lies. The most fun is being part of a training groupwith an instructor, but you can also do this on your own. There are training videos online. You also have many rights that are described on the Federation's website. Do not give up. Take it a little at a time. You'll notice progress quickly.
9. Remember your voice See a speech therapist and learn voice exercises. After all, it's not our surroundings that make us less able to hear, it's us who speak more quietly. These are simple exercises that you can do yourself. Don't worry about looking like an idiot when you exercise. The car and the bathroom are excellent venues.
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10. It's up to you As you can see, we have many good helpers among us. Make use of them. Don't be embarrassed by your own illness. If you shake, just explain why. If you have a "freeze", take the time you need or ask for help. If you fumble, just keep going. I've chosen to be very open at work and among family and friends. When I tell people I have Parkinson's, they get anxious on my behalf and know very little about the disease. I use every opportunity to reassure them, educate them and make it clear that this is not the road to hell. So far, I haven't received a single negative reaction. In my work, I give many lectures. I also weave in little anecdotes about my Parkinson's with a lot of humor... and some seriousness.
The opportunities are there. Seize them. It's up to us.
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Mohammad Ali:
"Live everyday as if it were your last because someday, you're going to be right."
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Never has a statement been truer. In two ways. Enjoy life every day, because one day it will end. It's not just anyone who said this. True, he said a lot of otherthingstoo,buthewas"TheGreatest".Theboxer Muhammad Ali, one of the greatest sportsmen of all time, regardless of sport.
Ali won victories far beyond the boxing ring. OlympicgoldmedalinRomein1960,whichhethrew to the fishes in a river in protest against racism in the USA. He changed his name and religion, became a pacifist and refused to go to Vietnam.
Later, he developed what many believe to be PD, Parkinson's Disease. Not everyone agrees, but he gave the disease a face. Muhammad Ali has been a courageous fighter of Parkinson's disease for 30 years. He was a role model, and many people looked up to him because he "fought" against Parkinson's degeneration just like any opponent in the ring: FEARLESS.
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Thomas Hoepker/Magnum Photos/NTB scanpix
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CHAPTER II
How does Parkinson's behave and how does it relate to are you ready for it?
Shaken,
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An irritated judge in Oslo District Court howled:
Can't you speak more clearly, Mr. Wishman!
– "When the judge shouted this at me in court, I realized that thisdaywastheendofmylegalcareer,"says Morten soberly. He is a severely affected Parkinson's patient with many involuntary movements. Morten shows one of the many serious faces of the disease. When you meet him, you have to take your time. Wait until your head and voice are coordinated. The conversation is a little slower than most people are used to, but the content is top notch. There's nothing wrong with Morten's intellect. He makes an impression with his knowledge and there is no doubt that law is still close to his heart.
Name: Morten Wishman
Age: 69 years
Marital status: Married. Two adult children. One dog
Occupation: Lawyer
When did you get Parkinson's? Possible at age 25. Diagnosed at the age of 39. Something you are passionate about: No.
Hobbies: Bridge and chess
What has happened to Parkinson's in 10 years' time: Then the situation is roughly the same
...when they hit the point in the brain, they switched on the power. Suddenly I could move my fingers, my body softened. "How do you feel?" asked the German surgeon.
– "For various reasons, I'm the only lawyer who has argued the same case in the Supreme Court three times," comments the tax lawyer, adding that the case had also been in the District Court and Court of Appeal. "That's when the time goes way beyond 'reasonable time'. "This was a tax case that we won after these three rounds.
Morten Wishman is a boy from the west of Oslo who grew up in what he calls genteel poverty. He was a hopeless student. Went to sea at the age of sixteen. Came back after a couple of years, took his A-levels at a private school, bounced around a bit and eventually started studying law, specializing in tax.
– I think I had a Parkinson's symptom already at the age of 25. The symptom was stiffness in one arm. The stiffness continued and when I was 39 years old, I cycled to work one day as usual in the tram track because there was a paved cycle track. One day the tram came unusually fast and it's always the smartest person who gives up. I pushed my bike out of the track, fell and was completely shattered. Everything was fine, except that my arm was still stiff. Then I was sent to a neurologist who gave me the short and sweet answer: "You have Parkinson's," says Morten.
We're sitting in Morten's living room with his dog Felix. A small, hairy powerhouse that has learnt many tricks from the dog book. He does a lot for a treat and Felix and Morten have a good relationship. The home is characterized by an interest in art and reading. It's quiet and some days can be long for Morten. He works out, is on the computer, reads and goes for walks with Felix. Morten was diagnosed at a very early age, which came as a shock. He was medicated, had
vague symptoms and took it all in stride. It was just a monkey. Morten got worse.
– Thediseaseworsened "Mysister-in-lawhadread an article about the possibility ofbrain surgery. When I mentioned this to the neurologist, he said it was just a hoax," says Morten. "But I didn't give up and via several people I got to Rigshospitalet. At the time, the Norwegian Parliament had scraped together NOK 1 billion for patients who could be treated abroad. So, eight Parkinson's sufferers were selected for an "audition" where we stood on a podium and German doctors observed us. All eight made themselves look as bad as possible," says Morten with a bit of subtle humor
Morten travelled to Germany in 2002 to receive DBS, or deep brain stimulation. The method involves drilling a hole in the skull, inserting electrodes into a specific part of the brain and attaching them to a battery located under the skin on the chest.
– "I wasn't scared at all," says Morten, "I told the doctor before the operation that if you do a bad job, do it properly. First, I was given a general anesthetic and my head was clamped. Then they woke me up and I had to open my mouth because there's an awful lot of noise when they drill holes in the skull. All this went very smoothly. I felt drunk as a skunk and when they hit the point in the brain, they switched on the power. Suddenly I could move my fingers, my body softened. "How do you feel?" asked the German surgeon.
Whether it was the singerJames Brown Morten had in mind when he answered is uncertain, but he said in any case:
– I feel good. This is a miracle.
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