Reason for Survey and Goals

Purpose of the questionnaire

This questionnaire series is about LIVED EXPERIENCE WITH DYSTONIA.

Results will hopefully have these four outcomes:

1. Lights on! Aha! moment for researchers – “Let’s study that.”

2. Eureka! moment for patients – “Someone knows what I’m going through.”

3. Wow! moment for the public – “I had no idea what it was like for you.”

3. Dig in, discover! useful question ideas for doctors

Of course the ultimate goal is that we will:

Lasso dystonia

Eradicate it

Wipe it out

Defeat it

Reasons for the survey

The survey developer feels lucky to have a great medical team. They are not just amazingly competent but their caring is evident, including wonderful pharmacists and a great physiotherapy team that is fun, creative and has obviously put in extra time to understand this condition. But however much they care, they still can’t fix this problem completely. They are not associated with these surveys but are examples of how the medical community is doing its best. The survey is intended to inform and help advance the work of the medical community.

We patients want to help. Researchers do wonderful clinical trials and some of us are part of them. But we have complicated daily lives, and clinical trials may not be able to capture what it’s like for us. There is a second type of medical research, not clinical trials, but natural history – the lived experience of the patient. It has proven useful in leading to better diagnosis and treatment of many illnesses.

Medical specialists are time-strapped. They want to help patients, but a short appointment is not going to reveal all we could tell them. We can however collect data efficiently through these surveys, from our homes, at our convenience. With our input researchers may see patterns they did not know of and ones we alone could not see.

Dystonia is poorly understood. Researchers in clinical studies even admit there is a lot they do not know. Here is some of what they have said:

– To examine someone with dystonia they should be observed during performance of the tasks that elicit it, such as typist at a keyboard, musicians while playing their instruments

– Little is known about the cause of focal dystonia

– The cause of pain in patients with cervical dystonia is not known

– The exact etiology of dystonia remains unknown

– The role of environmental factors causing or contributing to dystonia remains uncertain

– What goes wrong in the basal ganglia is unknown

– Dystonia has a variable nature, making it difficult to predict the prognosis of this disorder

– The sensory trick remains a fascinating and poorly understood phenomenon

– The population of patients studied has generally been limited in size and in geographic location

-To objectively assess the response to various therapeutic interventions, it is critical not only to use appropriate rating scales, but also to take into account the intervention’s effects on activities of daily living and quality of life.

– Dystonia has been misunderstood for a long time

My dystonia friends (fellow patients) have inspired me. Some have had the courage to write books about their journey, all very moving books. I want to thank in particular Cher Tannenbaum, Rev. Mike Beck and Beka Serdans. R.N.,  whose words inspire me about this condition.  My support group friends and the foundations they are part of are amazing. They are an anchor to life, a mutual support network. Real people on a hard journey and so kind.

And I want to thank the bloggers, video posters and social media communities who have set up a way to network. I am enjoying reading their stories and corresponding with them. I listen. I learn. But they too can’t solve this fully.

Patients have set up foundations, done walks and other fundraisers, put their hearts out there to provide money to support research. The foundations are a lifeline and it is research they funded that has led to great discoveries about genetic links, possible causes, effects of treatments. We’re getting there.

There is another avenue we can add. Share what we have learned. People with dystonia have expressed their desire for more research, and their desire to help. As we struggle daily with this infuriating condition we are actually doing very important research on the brain and motion itself.

The surveys are a series of specific questions about lived experience with dystonia, compiled from the literature and patient observations.

This may be a great window to help. We have researchers who want to know what dystonia is like for us.  We have things to say.

Let’s tell ’em

Here are some quotes that inspire me:

To be surprised, to wonder, is to begin to understand – Ortega y Gasset 1883- 1955

If you want to go fast, go alone. If you want to go far, go together – African proverb

Many hands make light work – John Heywood 1497 – 1580

In vain have you acquired knowledge if you have not imparted it to others – Deuteronomy Rabbah 1525

It is good to rub and polish our brain against that of others- Michel de Montaigne 1533-1592

Knowledge is power – Sir Francis Bacon 1561 – 1626

Experience without theory is blind. But theory without experience is mere intellectual play. …Science is organized knowledge – Immanuel Kant 1724-1804

The years teach much which the days never know  Ralph Waldo Emerson 1803-1882

There are many truths of which the full meaning cannot be realized until personal experience has brought it home – John Stuart Mill 1806-1873

If you have knowledge, let others light their candle in it  -Margaret Fuller 1810-1850

All experience is an arch to build upon – Henry Adams 1838-1918

Alone we can do little. Together we can do much- Helen Keller 1880-1968

No one can whistle a symphony. It takes a whole orchestra – Halford Luccock 1885- 1960

Share your knowledge. It’s a way to achieve immortality – Dalai Lama XIV 1935-

None of us is as smart as all of us- Ken Blanchard 1939-

We are stronger together than when we are alone- Walter Payton 1954- 1999