Breaking through the Barriers of Silence

In the following video, Dr. Robert Moir, an Assistant Professor at the Department of Neurology of Massachusetts General Hospital and at Harvard Medical School, is sharing his views on the question “Are Infections Causing Alzheimer’s Disease?” at a TEDxCambridgeSalon meeting in October 2018. Just take a listen to how he talks about Alzheimer’s and breaking through the barriers of silence.

Worldwide, more than 50 million individuals are suffering from Alzheimer’s disease. The disease is basically incurable and fatal. Dr. Robert Moir is sharing new and groundbreaking research results that suggest that suggests that infection may play a crucial role in Alzheimer’s and this may help to point us in the direction of urgently needed new strategies for treatment.

Now let’s take a look at what we here wanted to do something to make a difference. We wanted to help those faced with a similar situation to somehow share our knowledge. As authors and educators, the answer was simple…a book written from two very different perspectives.

The following are excerpts from the book I have written with my wife Lorna Drew. By sharing experiences of our uninvited encounter with Dr. Alzheimer’s disease we can break through the barriers of silence and loneliness. Let us speak out proudly and loudly about it — even laugh and realize that we too have our contributions to make to the rich tapestry of human life!

The metaphor that I like is that my life is like a fog. I’ve lived by the sea, and I always loved the mistiness of it. You can sit on a boat and see the shore — and sometimes you can’t. If I don’t write down what I did yesterday, it’ll be gone. But I can still see the distant shores. I can remember my childhood vividly, but I can’t remember the last few days.
— Leo Ferrari

Stories heal, and making narrative sense of a life lived with Alzheimer’s disease gives me both the perspective to stand outside events (and sometimes laugh) and the feeling that I have a kind of mastery over a serious illness of which the symptoms often are playing havoc with what, at one time, was a pretty ordinary life.
— Lorna Drew

There are persistent signs in favor of getting tested for Alzheimer’s disease… In my specific case, I was having a valuable and valid alibi — I was an enlightened professor and committed professors tend to be notoriously forgetful… I actually even started to like the adjective “absent-minded” as it went well with this territory. But by misreading the signs, it allowed Alzheimer’s disease to destroy more of my precious memory cells!
— Leo Ferrari

Care-giving, like child-rearing, is all too rife with opportunities for learning on the job. But I hope that what I learn as I embark on this new and unforeseen career may be of use to others.
— Lorna Drew  See also this post: Donation Box For Alzheimer’s 

Once you receive the diagnosis that you have Alzheimer’s disease, it seems to give people the ability to take over from you; to make decisions on your behalf as though you aren’t capable anymore. For more and more of us who are receiving an early diagnosis, this leads us to a feeling that our thoughts, feelings, and abilities are not being validated; that we are not being validated and our families are suffering as well. We have to accept our ‘new normal’ in order to take back control of our lives.

In fact, this feeling is so strong amongst us that “Taking Control of Our Lives” is the theme of this year’s A Changing Melody Forum. This event was initiated by the Murray Education and Research Program some years back and I’ve been part of the Planning Committee since its inception and it’s always been great to hear what other people have to say about the disease.

This is the first and only forum in Canada specifically for people with dementia. I can hardly describe how important and novel it is to have a forum where we are spoken to, rather than spoken about, and where we can come together to learn and share what it means to have this disease.

Last year, at the first Forum, I was sitting in the empty auditorium with a journalist who was interviewing me. We were talking about that today, people with dementia stand up and dare to speak about the disease. but I was distracted by the arrival of a group of attendees from one of the Alzheimer Society chapters. What struck me was the way they came into that room. They owned it. It was theirs!

You could tell from their stance, the way they walked, everything about them that this was “their” room. That really represented to me what the Forum is all about. Even before it became this year’s theme, the Forum was about taking control of our own lives.