Parkinson's disease has not knocked down Timo Montonen, who was diagnosed at the age of 48. He tells his hilarious story through ten years of horror, joy, misery, hope, efforts and love. After 10 years as a person with Parkinson's his condition is much better he ever could imagine in those early years of this severe, progressing disease, which is still waiting the cure. As an Advocate for Parkinson Committee and an Official Blogger Partner of the 4th World Parkinson Congress Timo informs the Finnish Parkinson community of next Congress and gathers a delegation to travel to Portland (Oregon, USA, 2016, Sept. 20-23).
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The Finnish Association of Non-fiction Writers has supported the writing of this book.
2. Organizations, Projects, Websites
3. Is There an Editor in this Book?
4. At the Beginning it had Begun
5. Hiding vulnerability
6. Healthy Man among Sick
7. Let’s Laugh at this Disease!
8. Positive Changes
9. Young Again
10. Whales and Dolphins
11. Elephant’s Memoirs
13. Everyday Top Moments
15. Towards a better life
16. I’m Not My Body
17. I Now Turn in my Bed
18. At Work with Parkinson’s
19. One Man Team
20. Have I been Left Alone?
22. Neuropsychological Test
23. Towards the End of the Year
24. How to Survive November
25. Socially Active Year
26. Still Waiting
28. What Are We?
29. Super Week
30. A Guide booklet
31. Parkinson's Allows Me to Work
32. A Project Idea
33. Welcome to EPDA Family
34. A Successful Autumn
35. Social Challenges
36. A Strange Feeling
37. Under the Surface
38. Site Opened with Manifesto
39. The Last Word
40. Do Continue Working
41. Parkinson's Patient in Media
42. I’m Proud of Parkinson’s
43. Project Events
44. Parkinson’s in Mind
45. Selective Culture of Termination
46. Dreams Come True
47. Empower to Dance!
48. Can Science Support the Hope?
49. The Most Important in WPC2013
50. Local and National Meetings
52. To Envy, Hate and Isolate
55. All Kinds of Things Happen
57. Searching For a New Identity
“I'll tell you in this book, how I climbed a ladder, rose higher and higher step by step, toward the all sanctifying Parkinson's crown.”
Organizations, Projects, Websites
Is There an Editor in this Book?
“OivaA club for early onset and people with Parkinson’s at working age. I was crucial important to the birth and rouse of Oiva, and vice versa, from 2010 to 2014.”
I am translating from Finnish to English and at the same time editing the English version of this book. I have a pile of texts, which I have published in newspapers, social media and books from the year 2006 to 2015. The titles of my earlier books containing Parkinson’s stories would be in English Author's Book (2008/2010/2015), Towards a Better Life (2011) and I have Parkinson's, and I'm Proud of it (2014). Sounds very positive or what you think? The last title, of course, is ironic, as you immediately realized.
About my English I would make a notification. Despite the fact, that I have learned English at various schools and at the university fifteen years all together and watched English movies over fifty years, I have used both Google and Microsoft Translators when needed. I do not hesitate to make lingual mistakes. Errors confirm that this is my personal story. There is a saying, that an error is the beginning of wisdom (or similar idiom in English?). Once when I was tutoring the top leaders of a big energy company, I tried to convince them that an error is a message. It is a message that should be heard and interpreted and from that base turn to learning and developing. But I don’t aim to errors, I don’t have to. They come without efforts, but the main point here is to become understood. This is what a Malaysian Samuel Ng, whom I had met in Montreal, Canada, at the 3rd World Parkinson Congress October 2013, wrote me in Facebook, when he suggested that I should write to him an English version of my first book about Parkinson’s. So, thanks him that this book exists.
I do not always tell the writing or publishing date of a certain publication, because I've edited, as I said, the writings for this book and written a lot of new things, varying from minor details to wider summaries. Old posts, read and forgotten, have been the springboard for fresh ideas, the restoration of forgotten memories, loose details compassing to the integration so that the crumbs are structured an entity.
I'll tell you in this book, how I climbed a ladder, rose higher and higher step by step, toward the all sanctifying Parkinson's crown. I flew toward an illusion, preceded in carrying out voluntary work and of the disease as like marking the boxes in a school experiment, conquered kilometer square of invalidity and influencing one after the other.
I remember how soon after getting the diagnosis I joined the Parkinson’s Association of Southern Finland (PASF). I remember how I inquired the similarities and differences of numerous local clubs which were part of nearly twenty areal associations which made up the national Finnish Parkinson’s Association. I remember how I tried to understand the meaning of quite massive hierarchical organization, when there were only seven or eight thousand members in the areal associations. I remember how I travelled through a simulation of nearby future; how I saw in my mind a cavalcade of positions of trust and of responsibility in various levels. I decided that one day I would be the chairman of a local club, a member of the board of directors in the areal association and in the national association, and, of course, a union representative.
The fact that my Parkinson activity would take me from Helsinki, Finland, to London, UK, and to Montreal, Canada, in order to attend international meetings, never came in my mind. Neither did the fact that I would become gainfully employed in the association of my own disease. But so it was, when I dared to trust my ideas and apply for funding for new innovative activities – and give my own money, when the pleasure and benefit were near enough each other, such as the Canadian journey, so that before the 3rd World Parkinson's Congress I went with my daughter to Niagara Falls and pop star Justin Bieber's hometown Stratford…
But be patience, I’ll tell all in time.
“Soon I noticed, that the Editor created a feeling of fiction.”
Here is a list of organizations I’ve been working with, projects I’ve been involved with, websites I’ve been writing to and some other concepts important in my Parkinson scene:
A project of EPDA together with Italian Publisher, writer and medical company. 2015. Lizi Graham, Director of Fundraising and Global Communications, asked me to attend.
444 Parkinson’s Traveler
A project of Marcus Cranston. I answered to Marcus in Facebook and took responsibility in Finland. Spring 2014.
Advocates for Parkinson Committee. I offered to become an Ambassador of WPC2016, next day I was asked to join the APC. Spring 2014-to Autumn 2016.
European Parkinson’s Disease Association. Important international context to me especially 2011–2013, but later too.
Finnish Parkinson’s Association. I’ve done cooperation since 2007.
A club for early onset and people with Parkinson’s at working age. I was crucial important to the birth and rouse of Oiva, and vice versa, from 2010 to 2014.
Palmenia Writing Program
My job for fifteen years at the University of Helsinki, 2000–2015.
Parkinson’s at Work site
A web site created in the PW from the base of my ideas. 2012.
A social media, where I met angry opponents 2010–2014.
Parkinson’s Association of Southern Finland, the areal association I belong to, joined 2005.
Parkinson’s at Work project
Two years project I planned and made true with Anna-Maria Salonen, a part-time project worker, 2012–2013
person with Parkinson’s, people with Parkinson’s.
Seminar on Parkinson's Disease and Working Life
An important public whole day event of the PW. Spring 2013.
The Special Training Center of Finnish Parkinson’s Association.
Word Parkinson Coalition/Congress.
3rd World Parkinson Congress, Montreal, Canada, 2013.
4th World Parkinson Congress, Portland, Oregon, USA2016.
At some point of writing this book I began to imagine an Editor, who would comment my text. Maybe the writing process was too long and lonely. I had no-one to talk about it thoroughly. And yes, maybe I was a bit scared what would be the result, because I worked with foreign language without traditional publisher’s aid in editing and marketing.
Soon I noticed, that the Editor created a feeling of fiction. The whole package began to be like a novel, and that was not what I intended to do. For all that, I was hesitating, I took the Editor’s remarks away, and next day put them back.
Now I’ve come to a conclusion, that I give you, reader, as a literal gift some of the remarks of unknown Editor. I hope you have a couple of minutes time to this side path.
You are reading the fragments I was able to collect from various sources after Timo, our brother in Parkinson’s, deleted all his manuscripts, notes and computers and then simply vanished in the meaningless desert of an unbearable boredom, of which we healthy people don’t want to know. His snoring is no longer with us, neither his obsessions, poor jokes nor forgetting other people’s affairs immediately after hearing them. -
As far as I know the fragments are authentic, in the sense we can consider in this situation, where everything Timo left behind is from a second or third (or fourth and so on) source. -
While wanting to offer the readers as readable and coherent book as possible (books are expensive and you got to get a valuable piece of art for your money) I have edited the texts with tender touch. That’s what Timo would have been wanted if he had thought this matter thoroughly. So, when you find Timo commenting this book in following chapters, you can be pretty sure that the comments origins to my editorial work. There was, I am sure, no this kind of book that Timo intended to create, if he was creating a book at all. -
Timo newer wanted this book in day light. But I see no choice than take the responsibility to collect, edit, write and publish this essential masterpiece of autobiographical contemplations. So, I publish this book against the will of Timo. So did
, who saved and edited the works of
after his death and let them become an infinite part of the granite base of Western Literature. Comparing Kafka to Timo is an act of honoring, and I’m honestly assured, that Kafka would have appreciated it.
Humor? Irony? [Two vague words, unreadable.]
Why did Timo write this kind of text? Or… Did he really write it? Was he in balance in his mind? Obviously not. If you compare this to other texts surrounding it, it’s a kind of anomaly, like a punch to nose of everyone Timo is working with. Did he imagine, that he could continue co-operation usually, as nothing had happened? I guess he did!
If Timo would have written and published this book, it would have been his seventh book in 2015. From April to July he had published two novels, a collection of poems, a collection of columns and texts from social media, a guidebook for autobiographical writing and the Finnish version of this book of Parkinson’s.
“Weird – scientists say they have cleared the birth of the universe as close as less than a second after the big bang, before which there was nothing, because the time was born in at the same time. But the emergence of Parkinson's disease was not cleared at all so closely. Moreover, the diagnosis, the Big Bang of this condition, had been preceded even years of silent destruction in the brain, which, as we could see afterwards, had been caused a number of non-motor symptoms, so that a sensitive doctor, other healthcare professional or anyone else who could google, could have been deduced that the Parkinson's disease had started.”
At the Beginning it had Begun
“The countdown had begun.”
“That’s what it is the meaning of this book, to describe, what is the pain and richness of life of a person with Parkinson’s."
There I sat, on a paper duvet on neurologist’s examination table, hanged my feet like a little boy. It was autumn 2005. Neurologist – an older gentleman – had made me walk in clinic hallway, to balance on one leg, hand out my arms accordance with the instructions. He had moved my limbs, knocked on my reflexes.
Already a year or two earlier I had met occupational health doctor, but then the symptoms had been interpreted as a lack of magnesium. Now I had gone to another doctor, who had examined me more thoroughly and sent for further examination to a neurologist. And now was the time to result of the test interactions.
“It seems that you have Parkinson's disease. Have you heard of such a thing?”"
I had heard, but I did not know anything about it. The only memory was that sometimes in the 80's a family friend's father had Parkinson's disease. To my mind was drawn up this friend helping her stiff father up from the chair. I had not seen this with my own eyes, I had only heard of it and captured image in my memory. Now I had the same disease. Elderly’s disease. I was 48 years old. My wife was only 34, and we had a 7 years old daughter. Why was this happening to us?
Suddenly I felt like I was in the middle of American movie where the criteria for living swerve off the rails. As if I rose while still sitting towards the ceiling and looked at myself from the outside. It happened to me, but I was that poor guy who was sitting in the doctor's office and heard, that he had a progressive incurable disease. Movement disorders. Degenerative disease of the brain.
I do not exactly remember and I do not know how to distinguish what the neurologist said at that moment, what he told me later and what I read from the booklet which he gave me.
I do remember that I left the doctor simultaneously in the feelings of speedy actions and I couldn’t care less. I rushed out and remained not to hold the door open for a lady coming in, as I would have normally done. I had just received a death sentence.
The countdown had begun.
Weird – scientists said they had cleared the birth of the universe as close as less than a second after the Big Bang, before which there was nothing, because the time was born in at the same time. But the emergence of Parkinson's disease was not cleared at all so closely. Moreover, the diagnosis, the Big Bang of this condition, had been preceded even years of silent destruction in the brain, which, as we could afterwards see, had been caused a number of non-motor symptoms, so that a sensitive doctor, other healthcare professional or anyone else who could google, could have been deduced that the Parkinson's disease had started.
At home I was still energetic. I told my wife contrived calm, that I had Parkinson's disease. It explained the strange symptoms. The left hand did not work properly; it was powerless and it trembled in the morning, when I woke up and turned off beeping alarm clock.
I borrowed from the library a personal book of neurologist Kari Aho, titled Parkinson's as a Travel Partner (2000). I read it immediately from cover to cover.
I studied my disease, I learned new vocabulary.
Dopamine and levodopa.
Tremor or trembling.
Rigidity, or muscle stiffness.
Hypokinesia, or slowness or lack of movements.
Hypomimia or low facial expressions.
I didn’t cry until a couple of days had passed. I had just started autumn holiday, so I had time to acquire and internalize information about my illness. I called the health phone and ripped my situation.
After the autumn break, I returned to work, but told nobody of Parkinson's disease suspicions. In my mind smoldered hope that everything was due to the fact that the left shoulder had once dislocated. The whole thing would be mistake, a huge misconception that would be resolved. I was frightened for nothing.
The diagnosis was confirmed when brain MRI was found no tumors. “Healthy brain,” the neurologist said, and for a moment I was inspired for that the Parkinson's disease was a false assumption. But the results supported the diagnosis. And in particular the medical treatment’s efficacy supported the diagnosis. I felt that my condition improved considerably. I put outstanding issues in order. I was visibly eager to do things I didn’t do before. I bought a new washing machine tower to replace the broken one. I was not so tired anymore. I started at work to wear a suit and tie, even if our fashion statements were informal. I built an armor of my habitus, under which I hid my vulnerability.
From all of this has now gone many years, ten years. Shock went off in time. My co-workers found out about my illness, and within a year I was already externally changed so much that easy disguise would not be successful at all. The vocabulary of Parkinson’s has become familiar through experience, part of everyday life. The diagnosis was not a death sentence, but the name for a cluster of my symptoms.
I no longer feel an American movie hero lost his rails, but the star of my own life. I have to take account Parkinson's disease in my daily life with the obligations, constraints and opportunities brought by it. That’s what is the meaning of this book, to describe, what is the pain and richness of life of a person with Parkinson’s.
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