The Parkinson’s Video Society – 1

What Triggered The Idea

The idea of using only a smartphone came about when I was enrolled in a university course called How to promote a not for profit organization on a budget using a smartphone (was offered through

I knew the subject well but I had just retired after been diagnosed with Parkinson’s and did not actually represent a NPO. The presenters said it was ok to create a fictitious organization and so the Parkinson’s Video Society was born.

The Parkinson’s Video Society (PVS)

The PVS Objective

The PVS would cater for people with various degrees of disabilities due to Parkinson’s, and would show that by having the right video making skills, they can make a real, exciting , and valuable contribution to many areas of life. This is an exciting way of learning to use of video technology in an amicable and supportive environment, while at the same time contributing to society – thus enhancing the quality of life of many.

Types of Courses

This is done in an intelligent and stimulating way, based on each individual’s experience and interests, by selecting an appropriate type or style of video – like training videos, travel videos, satire/political commentary, financial advice, storytelling, memoirs, book reviews, news channel, and many more.

Training Provided

The PVS will provide the training in basic video creation from ideation, storyboard development, shooting, editing through to production & distribution, as well as specific training in the different types of video project.

As far as is possible the training will be available online. This will allow members to explore various types of video to see if they are of interest. It is up to the individual PVS boards to decide how much training will be provided online and hands-on.

Using Partners

No man is an island as the saying goes and it is very much true in this case. Building up and running a PVS is both technically complicated and expensive. The societies are encouraged to establish a network of technical volunteers and company sponsors.

Assistive Devices

HMD has done extensive research to find assistive devices for Parkinson’s-related handicaps – thus turning the handicaps into non-inhibiting practical disabilities.

For example my eyesight is very weak due diplopia or double vision caused by Parkinson’s. We tried surgery and Fresnell lenses, but with spectacles fitted with quality progressive lenses the handicap has been turned into a disability and I can cope quite well, reading both the small text on the screen and the overall view of the scene being filmed.

The PVS will share advice in the use of the assistive devices that we have built up. Individual needs could need input from specialists such as occupational therapists. This information will be shared in the PVS Newsletter.

We recognize that there are still limitations for pwp (people with Parkinson’s) and recommend a companion training program for caregivers in working in teams.

The Society

We have called it a society, but it could equally be a Club as long as it allows for voluntary, flexible collaboration. It could be a division/department of an existing Parkinson’s Society.

There must be a governing body with a chairperson, secretary and treasurer and a technical officer.

Ideally the members will meet weekly to report on progress they’ve made on their projects and to iron out any problems. This would assume that the meeting room is equipped with a large screen video display or projector.

There will be a monthly new project meeting. This will take the form of a training session where a member or guest speaker will talk about a new application of video and give a demonstration of the video being used in society.

This will be followed by a brainstorming session of possible applications of the video type and plan how it would be produced during the month.

Importance of Teams

Some members may want to specialize in one or two types of video only, creating math educational videos for primary school does not tickle your fancy and that is fine, others may not be impressed by your historical battle analysis videos that much either.

However, members should be encouraged to participate in as many projects as possible. They will find they pick up things by osmosis that will also help them in their video style. But even more important is the social benefit of collaboration in teams on projects. It is very valuable, being out and about does one the world of good and being there to lend a helping hand when needed does everybody good. In a like manner teams should be encouraged to present their project as a team. Working in Teams stimulates creativity and often leads to more complete and effective projects.

Broader Participation

The PVS should strive to be active in the community. That provides an opportunity for the community to see pwp in action, still making a contribution – that is valuable advocacy. So where possible participate in film festivals and organize a film festival your own to raise awareness of the work of the PVS.

Implementing PVS

The PVS concept is well developed and I intend to make it available soon.

I have struggled to come up with the best way of introducing a PVS in a specific region or country. It does take a lot of time and lobbying. And realistically I cannot do it. I don’t have the strength or the finances to do that. One has to get the physical space, the organization (constitution, bylaws, bank accounts etc.) infrastructure, and then start recruiting members.

So what I would suggest is a multi-phase approach:

1) approach national/regional Parkinson’s Organizations and present an overview concept, this could be supported by a web presence or an e-book.

2) Those who like the concept should appoint a local PVS champion. The local champions will be given a 1 week training in the PVS concepts and project management training in how to set up a PVS.

3) The Parkinson’s society will continue to lobby for funding and sponsors. They will working with their local PVS champion will start setting up the PVS and will organize an event, either in their own right or in collaboration of a suitable conference, where the PVS will be announced and a suitable start date announced. At the start, there will be a lot of teething problems and a lot of training may be required – a weekend workshop could be useful to get things off the ground.

This launch process could be captured on video?

Roche on his was to winning

Who, What, Where is HMD?

Davis Phinney

Remember HMD is not real! That’s right.

While getting to know all about Parkinson’s, I came across Davis Phinney. He is a well known professional cyclist and had won a heap of cycle races, I think more than 300, and he had also done well in the Tour de France when I worked there. He also knew Roche, the famous Irish cyclist who had won the Tour de France, and every other major race and was the world champion that year. It was time to retrieve some files I had put away in for future use…

What does cycling to do with Parkinson’s? As those who have followed my story would understand that I was awkward and uncomfortable in society. So I then went through a phase where I wanted to be good at small talk.

So I started collecting all kinds of sports trivia. That’s what the small talk experts talk about isn’t it, either that or the sexual conquests and I was so not going there. So Davis Phinney got filed in the back of my brain under for future use.

Roche is a strong Jewish name, like the Roche family who founded the pharmaceuticals company. So I wondered how the family had ended up in Ireland, in Limerick county no less.

In researching the genealogy, I learned that there had a fair amount of trade between Eretz Israel and the Island of Eire – I even found a reference that Yashua (Hebrew: יהשוה)  ben Yosef had visited Eire with a family member on several business trips, there was regular trade going on. If it was Jesus as he is known in English, he would have been older than 12, probably 14, 15 – this would make sense as he would be in charge of the family business as the first-born and would have to learn all aspects of the business and be introduced to all trade contacts.

So back to HMD. Before Parkinson’s I had a graphic design company called H Mueller Design – the name was generic enough so I could do anything. I was now creating websites, shooting videos, writing and publishing books, creating online training courses and teaching computer courses in various adult and continuing education programs in the city.

The EVC Guide

Davis Phinney was diagnosed with Parkinson’s at age 40 which was devastating. He wanted to help people to live better, he established a Foundation with this goal in mind. The Foundation organized regular events and annual conferences bringing experts and Parkinson’s people together. One of these conferences gave rise to the EVC guide.

EVC Guide

As part of my learning about the disease I found out about the EVC guide (serendipity?) – I wanted to know all about it. The Foundation staff were very helpful and I soon had downloaded a copy.

What the guide meant by “Living Well” was talked about at length. Agreed that it did not mean that you will be symptom-free, but rather that you will understand the value of life and that there is a need to help each other on our journey which we know will be short. We will be living well if in spite of aches and pains and difficult to control symptoms, we still spend the time to assist others where ever you can. I agreed and undertook to that with the guide here in my neck of the woods.

This guide has since been adopted by Parkinson’s Canada. I used it as the standard of practice when I was newly diagnosed and was still living on my own. The Foundation was very helpful. I started to use the guide as the standard for my care.

The two messages I got from the Guide is that you need to take charge of your own situation i.e. own it, and a big part of living well is to give to others.

My Concern

So what have I been doing for PVS in the mean time. I have been driven by the concern that I don’t have much time left, and there is still so much to do. I have been pushing myself as hard as I could to get the core elements in place so that I can start to promote it.

But lately I felt that there is enough in place so that I can start to talk to people in the development community (CWOL, USAID, the World Development Bank, UNDP, UNESCO, WHO, MASHAV (Israel AID) and SADB – they know what it takes to introduce a new concept. I was right, the response was most encouraging. What impressed them was the potential for giving opportunities for people with PD, which is a growing need in the developing world and the spinoff projects for education, healthcare, and economic development. They encouraged me to expedite the project as funding is tight. They felt I was really onto something and they promised support but they would need more than brochure.

For myself then I continue to develop online courses as building blocks for a PVS system and example projects that a PVS typically would do – these would be used in the marketing of the PVS.

In the mean time I am looking for a partner to help me getting the PVS off the ground, I have so few resources.

Go To The Parkinson’s Video Society – 2