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From: Elizabeth Gluch, Special Education Teacher: Day Hospital

Here is the feedback from your presentation on September 19, 2008. Congratulations on your amazing work.

There were about 9 patients from the day hospital who attended your presentation. A few of them had no previous knowledge of your situation. We had a discussion group as a follow-up to your talk; these are various comments and main points that came up.

"A message of hope was transmitted by Mike's presentation" (this was the most predominant comment!)

"It was courageous to have a movie made based on his experiences"

"I would have liked more info regarding Mike's earlier state when he was ill"

"I found the presentation more valuable than the movie, which at times seemed a bit cliché"

“The titles of the chapters sound great, about recovery"

"It is really interesting for people who have never gone through it"

"What did Mike actually do (i.e. to accept his illness)"

"This would be great for high school kids"

"It was brave of him to speak publicly in front of others"

"I liked the 1/2 full of energy idea, it's true!"

"Much better than any theoretical stuff"

"What kinds of questions did he ask himself and how did he arrive at any closure around them"

“80/20 philosophy food for thought"

"I had several light bulb moments, i.e. outside eye looking at myself" (by the way, we had a whole discussion around your 5 eyes and what they are; are 2 of those eyes your wife's or sister's eyes; are they your eye glasses)

"Wow, to be able to say that he's happy to have a mental illness"

“The lesson I got was to be able to acknowledge being ill, and not be discouraged"

“The presentation gave me an overall positive feeling"

“The message of continually learning is a great one"

La Clé des Champs is pleased to present Mike Santoro as Guest Speaker where he will discuss The 80/20 Project

Date: March 3, 2009

Place: La Clé des Champs
2226 Henri-Bourassa East, Suite 100
Montreal (Ahuntsic), Quebec
corner Parthenais Street

Time: 7:00 p.m.

Language: English

Cost: Free

*part of our regular quarterly conference

Please call La Clé des Champs at 514-334-1587 to reserve your seat

In practical terms, families need information (about mental illness, symptoms, course, prognosis, and services available in the system); they need help in acquiring skills (to cope with the illness and its consequences – problem solving, conflict resolution, communication, assertiveness, stress management), and they need support for themselves in order to go through the hardship of mental illness and resolve their own emotional burden. They need to be helped to build on their strengths, survive their crises, meet their challenges and enhance the quality of their lives. A competence paradigm that replaces the traditional model of pathology that undermined capacity and self esteem can offer a developmental and educational model that focuses on family coping and adaptation, emphasizes the family’s strengths, resources and expertise, and defines relations with professionals as a collaboration, with a sense of mastery and hope.

I suggest that one way to ensure that families receive the attention and support they need is through the creation of a family navigating system. Family navigators are individuals assigned to a family once a relative is diagnosed with a mental illness.

The role of a navigator is to help guide the family through the system, by offering information, support, and referrals to relevant services, and by addressing issues and concerns integral to the course of the illness. (I.e. where would the ill relative live once stable; how to create healthy and supportive relationships that would promote the relative’s recovery while protecting the well-being of the family, etc.)

Navigators could (and should, in my view) be members of community-based organizations, such as family organizations, but they will hardly be effective without the referral and cooperation of the hospitals who diagnose and treat patients. The challenge would be to create a mechanism that could ensure that referrals are done as a matter of course.

The day that each family with a newly diagnosed member will be assigned a “family navigator”, is the day I will feel that families are receiving their fair share of attention and assistance.

Ella Amir
Executive Director
AMI-Quebec Action on mental illness

The majority of families have a central role in supporting their relative with a mental illness. They often serve as the primary caregivers and informal case managers. Where they are not involved (with their relative’s care), I suggest that it is the outcome of the lack of support which often leaves them disoriented, ineffective in their attempts to help, and practically makes them secondary casualties of mental illness.

In the era of the recovery movement, it is important to recognize that recovery is a process that both the ill person and the family need to go through in order to reclaim their lives. We know that serious mental illness often has a devastating effect on the entire family. The adjustment process is long and painful and requires courage, determination and support.

This is where professionals have not been doing a very good job; both before the implementation of the current action plan, and, I am afraid, also as the implementation takes hold.

I do understand the limitations of the present system in addressing the needs of families. I do not believe that practitioners in institutions who focus their attention on patients should necessarily be those to offer the support families require. However they are a crucial link in referring families for help. The responsibility of ensuring that support for families is available lies with the Ministry of Health and Social Services and should be secured by its Plan d’action. I do not believe that adequate supports are available at the present time. I have read the Guichet d’acc̀ès en santé mentale pour la clientèle adulte des CSSS document where there are references to what needs to be done to improve the situation. It is an improvement, at least in theory, but the challenge will be to make it happen.
(Part 3 to be continued next week...)

Ella Amir
Executive Director
AMI-Quebec Action on mental illness

(The following presentation was given by Ella Amir on November 26, 2008 as part of a round table discussion including viewpoints of health network partners. It was part of an international conference on the integration of mental health into primary care.)

Today, the relationships between family caregivers and practitioners reflect a departure from earlier patterns that characterized the institutional and post-institutional eras. In the earlier days when people with mental illness were kept in hospitals, often for the better part of their lives (or perhaps the worst!), families were little involved and had distant relationships with professionals. Following deinstitutionalization (which often turned into trans-institutionalization), the contact with professionals increased. Families have often served as the first and last resort for their ill relatives but typically with little guidance or support. The contact with professionals, instead of helping with their caregiving role, often magnified the family problems. With the common perception viewing families as dysfunctional and pathogenic, families have often been held accountable for their relative’s illness and pushed to therapy as a means to correct the problem.

Today’s practitioners are increasingly recognizing the contribution families can make to the recovery process of their ill relatives. They are also gradually recognizing that families have particular needs of their own, which are defined by their caregiving role.

So this is the good news. The gradual change in attitude is long over-due, but it will not be sufficient as long as it does not translate into concrete supports for families.
(Part 2 to be continued next week...)

Ella Amir
Executive Director
AMI-Quebec Action on mental illness

On Wednesday November 19, 2008 I was one of the guest speakers at the 9th Annual Symposium on Research and Quality of Care for St. Mary's Hospital in Montreal which took place at The Ruby Foo's hotel. Present were about 120 medical professionals from St. Mary's Hospital and from other hospitals in Montreal. I was asked to speak about the patient's perspective. I only had 30 minutes to speak and answer questions so I had to keep it short.

I started by showing 3 chapters from The 80/20 Project DVD:

Chapter 4 Building a support network
Chapter 8 Learning from relapses
Chapter 19 My employer and my illness

The following were the points I tried to make:

1) Treat me as a human being, it's not just medication that I need

2) In Chapter 19 “Dave” refuses a promotion in order to gain something else later, medical professionals need to help me with that

3) The importance of community organizations and how they helped me

4) People have to organize their lives in order to be and stay stable and that has nothing to do with medication

5) Medical teams don't always take time to help patients with organizing their lives

6) Take time to focus on other aspects of a patient's life

7) Educate medical staff on other aspects of patient not just the medical aspects

8) For me, Medication is 20% everything else is 80% and medical professionals can help me with this 80%

9) In order to stay well, I need the 80/20 but I need help from medical professionals to apply it

10) Everyone around me helped me apply the 80/20

11) I am aware of your reality (as medical professionals). The interventions you do with people you see in crisis, medication is often more important than when they are stable. Once they are stable and you see them as out patients, this is when the 80/20 applies.

Once again, thank you St. Mary's Hospital and to the organizing committee of the 9th Annual Symposium on Research and Quality of Care for giving me this opportunity.

Mike Santoro

On Friday September 19th 2008 was the first time I assisted a complete presentation of The 80/20 Project. It took place at the Royal Victoria Hospital, Allen Memorial Institute, and by video conference at the Montreal General Hospital. It was quite something to see some doctors and nurses who worked with Mike over the years, sitting in the audience and listening attentively to every word that Mike had to say. Mike started by saying that it was the first time he had come there to see so many professionals and not have come in through the emergency doors. That statement brought some giggles from the audience and some memories that I hadn’t thought of for many years.

Mike’s Story and The 80/20 Project are really based on Mike’s experience as a person with a mental illness in the system for over 25 years. The principal message to the professionals in the audience both at the Allen Memorial Institute and the Montreal General Hospital was to treat people living with a mental illness with dignity and respect. Mike told everyone to just listen to them and try to consider their wishes when working with them. What professionals learn in school combined with someone like Mike who has been on the receiving end of the services makes for a great combination to improve all services offered to people with mental illness. The main message of the 80/20 project is that 20% is the right medication (an essential foundation to recovery). However 80% is the rest of the elements that make up our lives and how we choose to manage them. People living with a mental illness ARE WHOLE PEOPLE and should be treated as such. A lot of what Mike talks about in the 80/20 project does not only apply to people with mental illness but also to anyone who wants to improve the quality of their lives. Let us never forget that 1 in 5 Canadians will be touched by mental illness in their lifetime.

As for myself, I have always believed that Mike had the potential to achieve all his goals with a lot of hard work, perseverance and never giving up. On Friday September 19th, as I watched Mike doing his presentation, I couldn’t help feeling proud to be Mike’s sister. Proud to think that at times in the past there didn’t seem to be a light at the end of the tunnel and now he was educating the same professionals who helped him. I am also thankful for having traveled Mike’s journey with him because today I am a better person for it. My knowledge of mental illness is a great help in my personal life. Mike has become part of my support team in times of personal turmoil. Thank you bro for your unconditional support and contribution both personally and on behalf of the whole community. You have become an inspiration to me and many others you have met and will meet along your path of life. Heroes come from all walks of life. Way to go bro!!!!

Continued Success with The 80/20 Project.
Keep Up Your Great Work!
Keep on Fulfilling Your Dreams!!

Unconditional Love Always
Your Proud Sis
Carmy Santoro

A Mental Health Discussion at M.U.C.S.
BREAKING FREE OF ISOLATION
An Evening Discussion with
Mike Santoro from www.mikesstory.com
and
Sylvia Smith from AMI-Quebec

The Montreal Urban Community Sustainment Project is dedicated to fighting oppression in all its forms. We are proud to break the bonds of isolation surrounding mental health and subjects falsely considered as taboos to society. As such we hope to engage in a lively and supportive discussion with Mike Santoro and Sylvia Smith. There experiences and knowledge will help initiate conversation around mental health and the many channels of managing it. The discussion will bring to light challenges and experiences faced by individuals living with a mental illness as well as anyone interested in being apart of such an enriching conversation. It is our hope that through dialogue and the sharing of ideas, we can empower each other by offering support. The Montreal Urban Community Sustainment Project is honored by Mike and Sylvia’s presence at their evening discussion and we welcome everyone to attend. The event has been scheduled to take place on Wednesday August 27th, 2008 from 5:30pm-8:30pm. Guests are encouraged to stay for dinner and enjoy a vegan meal prepared in our dining coop (a small donation for the meal would be greatly appreciated). For more information please email us at naira@muc.ca or give us a call at 514-312-7074.

Nairra Tariq

I am not good at expressing myself in words, but this event deserves a high five, good job and keep up the good work. You might ask what the event was. Well I'll tell you in a few words. It was on the 31st of May 2008 in Knowlton, Quebec where my brother Mike Santoro gave another one of his numerous conferences about his mental illness. It was the first time which I assisted in person and was very impressed the way he spoke in front of a group of about 75 people. Everyone was very attentive and when it was time to ask questions, lots of hands went up because they wanted either to ask more questions or to comment on a particular part of the conference which interested them. Most of the people present there either had a mental illness themselves or knew someone who had one. For Mike it started as something negative but now it has blossomed into a positive energy and he is trying to reach out to as many people as possible to try to make them understand and cope with their illness so they can live a "normal life". That is all for now. So BRO, once again HIGH FIVE, GOOD JOB, AND KEEP UP THE GOOD WORK.

Your big sis,
Terry Giannuzzi

"A REASON TO HOPE - A MEANS TO COPE"

I was very pleased with the recent presentation of Mike's Story at the Lac Brome Community Center. There were about 75 people who came to hear him. Instead of an ordinary guy like Mike, I had been looking for a 'big name' to come and do a presentation for a long time. After doing some research I realized that having a celebrity come to Knowlton would be far too expensive, so I had pretty much given up the idea - but I couldn't let it go completely.

I had already heard about Mike Santoro but didn't know if he did presentations so I phoned him at AMI-Quebec where he worked, and asked him. When he answered "Yes", I told him I was looking for a real person with a real mental illness. I had no idea how Mike would react to this kind of request, but his response was "That's me!"

That first conversation led to many more emails and phone calls. We were becoming friends even before we actually met. I met Mike for the first time the morning of the presentation and it was like we were already fast friends. Mike and I realized that we were on the same page, working for the same cause. We had already both discovered that with effort, discipline, perseverance and taking responsibility anyone with a mental illness can have a good life - "A REASON TO HOPE. THE MEANS TO COPE."

So the date was set for Mike to come to present his 80/20 Project, the Community Center was booked and posters were made - but I had no idea yet how to pay for everything. My new philosophy was becoming "You don't ask, you don't know", and so I started asking. The first person I approached was a friend who was a partner in his own business. He was very happy to donate towards our event! He said that he gave to various charities, but he seldom knew how the money was being spent or if it was going where it was intended. It made him happy to give to something local and to know what the money was going to be used for.

This gave me the courage I needed to write letters requesting donations from some local organizations. I was overwhelmed, and still am, by the responses I received. One organization wrote, "Even if mental health is not our mission, the board of directors decided to make a donation because we find what Connections For Mental Health Inc. is doing is important, and somehow even touches our children." This was exciting!

Since the presentation I have received some very encouraging emails and phone calls:
"Mike was really interesting. You had a very good idea to do this!!!"

"You're to be congratulated for all of the work that you have put into the organizing of the day and your commitment to your cause."

"It was a wonderful afternoon in so many ways!! Congratulations!"

"It was a fabulous event and you should be very proud of your contribution to the local community and to the larger community of mental health development. I am pleased to have been included."

"Congratulations on a successful event and all the hard work you put into it. Mike's a very interesting fellow, and easy to admire, and I thank you for inviting me to the presentation, and wonderful refreshments."

"Hard work. Mike did a fabulous job and really hit home with the different issues. I found his message very inspiring. Standing up like he did in front of all those people can make you very vulnerable and I admire his courage for doing that. I wish him well."

"Everything went well, you should be proud."

These last two comments are from people I emailed invitations to, but couldn't come:

"I see that you are still working hard for a good cause, don't give up . . . "

"I heard your event read out today on CBC radio at 12:30 community announcements. Well done, on your hard work putting it together."

This event wouldn't have been possible without everyone's support. I thank everyone who helped to organize and those that came that day to help. A big thank you to all of you who came and also to Townshippers Association for their stamp of approval on this event, and to CIDI 99.1 radio for offering to tape the presentation, which they will air at a later date.

We were very happy to have the following community groups Prevention Suicide, Oasis Mental Health and Pavilion Foster in attendance presenting their services and distributed information pamphlets in English.

We are already planning something for the fall, watch the papers. Connections for Mental Health in Lac Brome is a community group that advocates and provides support for the population of Brome Missisquoi.

Be sure to check out Mike's web site at: www.MikesStory.com. You can also buy The 80/20 Project DVD directly through Mike's web site or from Linda Ransom at pleasantvalley@sympatico.ca or 450-243-0928.

Linda Ransom

News Release…For Immediate Release

Connections For Mental Health

A Reason to Hope - The Means to Cope

People with mental illness are people first and foremost. They to have dreams and hopes just like everyone else. Mental illness does not change who they are, just their ability to express it.

Living with a severe and persistent mental illness is a difficult thing to manage on a daily basis. Diagnosed with schizo-affective disorder for more than 20 years now, Mike has shown the way to others by surmounting many difficulties and by fulfilling one of his dreams of helping others with a mental illness.

He values his life and his work by serving as an example to others and his focus is always on never giving up. With the help of his family and friends, Mike has recently completed The 80/20 Project (80% hard work and 20% medication) a DVD about “Mike’s Story”. An educational DVD about some of Mike’s personal coping skills that have helped him to come to the place where he is today.

Hopefully, you will come out and meet Mike Santoro and to hear him in person. This wonderful, heartwarming, and very encouraging story of how Mike has come to terms with his own illness, and has turned it around for something positive.

Mike’s presentation is one to give hope and encouragement and some very important tools for those who suffer from mental illness and also some tips for caregivers. Mike will also be available after the presentation to share his insights and answer questions.

The 80/20 Project DVD will be on sale at the presentation.

Feel free to check out the web site www.MikesStory.com

Mike will be presenting his inspirational life story at the Lac Brome Community Center, 270 Victoria Street, Knowlton, Quebec J0E 1V0 on Saturday May 31, 2008 at 1:30 p.m.

Admission is free and refreshments will be served.

Mike’s philosophy is, “Giving up; isn’t an option.”

Source: Linda Ransom-Connections for mental health
Knowlton-450-243-0928 pleasantvalley@sympatico.ca

On Nov. 12, 2007 I was asked to be a Guest Speaker for AMI-Quebec at the Institute of Community and Family Psychiatry of the Jewish General Hospital in Montreal along with Mike, John Stall, Elva Crawford, and Francine Waters.
The room was filled with people who were eager to learn more of Mike's Story. I spoke of the early years of Mike's illness up until Mike accepted the illness and treatment. It is hard to describe the affects on the family in a 5 minute presentation. I tried to illustrate that the illness can have devastating affects on every member of the family. In spite of this reality it is essential that the family remain supportive and always remain positive. NEVER GIVE UP. The family must believe that recovery will come with perseverance, continuously learning about the illness, prevention and lots of patience.
This was my first experience as a speaker and I truly enjoyed it. I saw a few faces light up as they really identified with what was being said. I truly hope we inspired some audience members to NEVER GIVE UP.
Personally, I got to hear how Elva Crawford, John Stall and Francine Waters, saw and interacted with Mike over the years. Once again I was proud to be Mike's sister and I am always amazed at how inspirational Mike is to everyone.
I would like to thank AMI-Quebec for inviting me to speak. I would do it again in a flash. Along with pain and torment in that room, I also felt lots of love, support and most important HOPE; THE HOPE OF RECOVERY.
Thank you to AMI-Quebec for your great work and service to the community.

Carmy Santoro