Some background – when I was first diagnosed, I started learning about this malady, because “I’m smart and I’ll lick it”!
Early on I found the book, Every Victory Counts, published by the Davis Phinney society, which was later updated with Canada specific information to become the Parkinson’s Canada version.
The guide promises that you could live well with Parkinson’s. So I dove in boots and all.
The basic philosophy was that you should
1) take ownership of your disease,
2) get to know your symptoms. Then
3) surround yourself with your team of specialists, chaired by your family doctor – these include a dietician, physiotherapist, occupational therapist, speech therapist, ophthalmologist, a sleep disorder specialist, a gastroenterologist, a psychologist, a neurologists, a movement disorders specialist, and a urologist/incontinence specialist.
I may have left out a few. Of course, the evc (Every Victory Counts) states that you would not need all them all of the time. But your physician would meet with the team on perhaps a yearly basis to review progress.
The Guide’s Structure
To facilitate the evc is divided into the following five parts:
1) Parkinson’s 101 – the basic physiology of Parkinson’s. This a long chapter made up of short articles by different authors and has many sidebars – it reminded me of Newsweek issuing a special edition discussing a big topic that has many facets like global warning, only in this case it is Parkinson’s Disease. It is the ideal format for people with no medical background.
I have read the chapter many times and often found little points that I missed in the first reading. The short bios of the article writers have helped me to follow their careers and research in the literature.
It also covers many aspects of the disease that may be of interest to specific groups like women and young adults. I believe it gives the newly-diagnosed a good overview and allow them to talk intelligently with members of your care team. But even at 20 pages fine print, it is nevertheless just a superficial discussion.
2) A discussion of the different Groups of Symptoms.
First there is a short chapter on Motor symptoms like tremors and shuffling gait. These are the symptoms that are visible and often the thing that causes people to seek medical advice and are then diagnosed with Parkinson’s. That is why it is the first chapter in this section. For many Tremors and Parkinson’s are synonyms, as it was for me.
Then follow four more chapters on non-motor symptoms. I have found these chapters difficult and unpleasant to read and overwhelming because of the large amount of information. As I worked more with the guide, I started to find them morbidly interesting and helped with my understanding of Parkinson’s.
3) Then there are several chapters on medications and treatments.
4) Four more important chapters on Living Well with Parkinson’s are given next and they are arguably the most important part of the EVC guide.
They discuss the importance of a positive attitude can have on how you perceive your success at living well with Parkinson’s.
They do discuss some practical things you can do: seeing the sun, spend time in nature and practicing mindfulness for example.
5) The Forms
The EVC guide comes with a collection of over 40 forms that are a separate download from the website. The forms are a key element to making the EVC guide work and it was why it recommended by Parkinson’s Canada.
The forms help you keep track of your disease, your diet, medication history, your exercise records, forms for before and after medical appointments, forms for what to in an emergency – how you should plan and prepare for an emergency and what form/information you should take with you to the ER for example.