Happy Anniversary, "Coming Out Crazy"...

We're two years old today. I cannot believe it and what an education writing this blog has been for me.

IN THE BEGINNING...

On April 9, 2008, I posted my first blog, called Welcome to Coming Out Crazy – and we weren't even live and on line, right at the beginning. (Now everything I've ever posted is archived and online.)

I was just beginning to toy with my own blog and didn't really have a clue about what blogging and the blogosphere was all about, when Brandie Weikle sent me an email asking me if I'd be interested in blogging about mental health for a then-new website The Toronto Star was building called Healthzone.ca.

I just reread that opening post. When I think back to what I thought I would be doing, I'm shocked at how much I've learned and how innocent I was.

As I mentioned, we were not interactive, like we are now. Any feedback came via email that went either to Brandie or directly to me. Our correspondence was strictly one-on-one and a ton of work. 

POSTS FROM THE FIRST FEW MONTHS AND OUR FIRST AWARD

At the beginning, it was just a trickle, but the initial reactions were positive and I kept plodding on writing about some of the topics I'm passionate about – like labeling, language, lessons we can learn from abroad, Recovery and Denial, mad pride, madness and more, "framing" or "the 'S' word", ECT and other current therapies, mental health in the workplace and suicide. 

I shared stories, like the challenges of living with my pregnant Dandie Dinmont terrier bitch, Lucy – who is not pregnant again, I'm sad to report. And this one I discovered on www.TED.com by Sir Ken Robinson. I called it Shall We Dance. 

On October 22, 2008, I turned 60 and that morning, we won our first award as one of the Best Bipolar Blog on the Web Award! We won another in 2009.

Most of all, I was learning how much I didn't know and how much more I wanted to know. I made some enemies, but more friends. I began to familiarize myself with the other mental health bloggers on the Internet – and there are millions of them all over the world – but mainly from the U.S., in England and Canada. 

I quickly discovered that there were very few newspaper mental health bloggers at that time – besides Liz Spikol in Philadelphia, who writes about her bipolar disorder. I've linked you to other bloggers who have intriguing ideas to share. The more we can share, the more we can learn from each other.

In Canada, to the best of my knowledge, I'm still the only person writing regularly and candidly in a major daily about my personal mental health issues, my recovery, and mental health and wellness in general. If not, please let me know who you are, where you are and join our conversation.

I wrote about one of the most remarkable psychiatrists I've ever known, about schizophrenia, about depression, about my teaching, how I came out in class to my students about my mental health issues, about my hearing loss, about how friendship heals, about "living out loud", about my ongoing battle with food and my moods, about letting go, about stress and about hope.

And I wrote about you. 

And Angela and her electroconvulsive therapy, which will be finishing very soon. And I'll be reporting on that, rest assured. Will she need maintenance ECT? I'll keep you informed.

Yet, I've just scratched the surface. There's so much more.

I answered your questions, or tried to, and I explored some of the issues in your comments. I've come to care about you, became acquainted personally with some of you, and even met and befriended some of you.

Now, because of this blog, I have new friends and I'm so grateful to you. This is a dialogue. I thrive on your input. Yes. I live for your comments.

I'VE LEARNED SO MUCH FROM YOU...

I learned so much about you and from you. 

How much you need to share, to speak about your personal pain, your traumas and psychic scars, your stresses and anxieties, your feelings of abandonment and loneliness, your fears and frustrations trying to find compassionate listeners who will help you develop the tools for living meaningfully, instead of or in addition to dispensing medications.

And I've made lots of mistakes. One worked out wonderfully. As a result, I met psychiatrist Ron Pies, a professor of psychiatry at Boston's Tufts University and the S.U.N.Y. Upstate Medical University in Albany, N.Y. He has generously helped me with much of my research and become our resident expert and my friend. 

From the beginning, and especially after we moved to Typepad in June of 2008, I began to dream of creating, here, a safe and supportive virtual community, where you can share your stories, perspectives, complaints and opinions openly with me and each other.

And once I began linking, I began to love sharing all I was learning with you, too, by giving you sources and seeking out the best references I can find for you. Dr. Pies calls me a "public educator" but we're all educating each other, contributing to a body of knowledge here that can help challenge discrimination and prejudice with information and discussion. Openness. Coming out and staying out comfortably. 

Changing the landscape about mental health. Though change doesn't come easily and there's always resistance. We must keep trying.

THANKS FOR THE MEMORIES

For the last few hours, I've been traveling back, touring the archives of this blog. I'm amazed at how much territory we've covered. 

And how much more we must cover.

As a little anniversary gift to you, the links above will take you back, too. To some posts that were never on line and are now available as well as others you may remember.

So, I'm wishing you a Happy Anniversary, too. Because without you, I simply couldn't do what I do.

Finally, I want to give special thanks to my editor Brandie Weikle. She not only edits me and all of HealthZone brilliantly, but also ParentCentral, where she writes a charming and informative blog about raising her two adorable young sons, Cameron and Alister. Their cute kid quotes of the day are guaranteed to give you a lift.

Her guidance is invaluable. She works like a trojan and she is endlessly patient with me and my occasional emotional outbursts. Brandie, you're a dream of an editor. I adore you!

I want to say a special thanks to the powers-that-be, and all the editors and moderators at thestar.com for having the wisdom and courage to launch a mental health blog. It's crucially important to give all health issues fair treatment, time and space ~ physical and emotional and mental. It's validating for us and empowering for everyone touched directly or indirectly by mental health issues. And we're all touched in some way, somehow. No one is immune.

With heartfelt thanks and gratitude to all of you.

So far, it's been a fascinating ride – not without a few bumps, mind you. I learn lots from those bumps.

So, here's to continuing on our journey of discovery and self-discovery together for another year ~ in health.

Speak soon.

Hugs to you all!

Taking the myth and mystery out of Adult ADHD...

I am no expert on Attention Deficit Hyperactivity Disorder. 

Although between you and me? When I read the following list of common symptoms, I was sure I had eight-and-a-half out of nine of them:

• trouble maintaining focus or often being distracted

• lots on the go but nothing ever finished

• perpetual financial problems

• piles of paperwork scattered around home and office

• poor listening skills and talking excessively

• impulsive behaviours

• impatience

• frequent traffic accidents or routine speeding

• difficulty maintaining friendships or romantic relationships

When I confessed this to Marty, he straightened me out in one split second.

Isn't this what happens to you when you start reading about the symptoms of any health issue? 

Suddenly, you have most or all of them. You really feel them. That's what's so dicey about having too much information at your fingertips. Sometimes, it's not healthy. What do all these symptoms mean? In truth, it may seem that you have enough symptoms for a million and one disorders or diseases from Lupus to Leprosy, when in fact, you're fine. 

That's the power of suggestion. The trick is to be savvy and smart about the sources you use and to find the best information in the Internet. I'll get back to that in a minute. 

ADULT ADHD IS REAL AND NOT JUST FOR KIDS

I do not, to the best of my knowledge, have ADHD. (I'll check with Dr. Bob next week.) But some adults do. 

ADHD is not just for kids. In fact, the symptoms of child and adolescent and adult ADHD differ. (I mean how many five-year-olds have frequent traffic accidents or routinely speed?)

The first time I heard about adult ADHD was in May 2008. I'll never forget it.

I attended a weekend course for teachers in Collingwood sponsored by Seneca called The Great Teaching Seminar. During one session, we all sat around in a circle – about 40 of us. We were asked to disclose something personal.

One fellow I did not know – Seneca has eight campuses and thousands of faculty – started talking. He is a business professor, though he talked about how he used to work in a corporation.

He related how, several years before, while he was still working in business that he started having problems concentrating, having anxiety attacks, though he didn't know it was anxiety at the time. I can't remember all the details, but he said that gradually he began struggling so much at work – I'm sorry, but I don't remember exactly what it was he did – that his performance began faltering badly. He was forced to take some time off. He paid a visit to his doctor.

He was so stressed out, he could barely function, but it didn't take his doctor long to figure out that he was suffering with adult ADHD. This man admitted he was shocked.

WITH TREATMENT FOR ADHD HIS LIFE IMPROVED DRAMATICALLY

"I thought only kids get ADHD," he said to his doctor. Nope. His doctor prescribed some medication, helped to educate him on ADHD, gave him some strategies and tips to help him adapt to his new-found condition and carefully monitored how he responded to all his new treatment tools.

This man told us the difference in his life after he was treated for his ADHD was nothing short of miraculous. I'll never forget that he actually broke down and started to cry, the improvement in the quality of life had changed so dramatically. He decided, shortly after his symptoms began to subside and he was feeling better, to leave big business and take up teaching. He's never regretted his decision and it's paid off big time for his emotional health. He's so much happier, healthier and at peace with himself and his family.

ADHD IS MUCH MISUNDERSTOOD AND MALIGNED

Still, ADHD is among the most misunderstood and maligned mental health conditions. Left untreated, in adults, it can lead to addiction, divorce, bankruptcy, accidents, depression, anxiety, and even suicide.

Its symptoms are complicated because they can present in a multitude of different combinations with each individual. In addition to the devastating personal costs, ADHD in British Columbia alone directly and indirectly costs more than $500 million.

Like many people, Rick Green of The Rick Green Show, first suspected he had ADD, "when one of my kids was diagnosed," the Canadian actor/writer/director said, whose diagnosis was made after years of struggling with various symptoms. 

So high-powered Canadian entertainer Green teamed up with a high-voltage ADD medical specialist Dr. Umesh Jain, a psychiatrist and professor at the Centre for Addiction and Mental Health, the Canadian ADHD Resource Alliance, University of Toronto and the Centre for ADD Advocacy Canada and together they collaborated on a critically acclaimed documentary called ADD & Loving It.

Last year, they launched an absolutely riveting new web site called Totally ADD (www.totallyadd.com) – "A complete guide to ADD and ADHD in adulthood."

Then, with Jain, Green produced and directed an interactive workshop called Now What?! which helps adults recognize the symptoms of ADD. No easy feat.

THE NEW ADD WEBSITE IS FUNNY. ENGAGING. TERRIFIC.

First, I have to tell you in all honesty the website is terrific. Even if you don't have ADHD, you probably know someone who does. Why not learn about it? It will help you empathize. Besides, this website is fascinating to watch. Instructive. Engaging. Entertaining. And funny! Like nothing else I've ever seen.

Green said, "Based on personal experience and what I learned while developing the documentary and Totally ADD.com, I wanted to help people who were struggling but didn't know why or what they could do about it." 

He and Jain will be teaming up to offer their Now What?! workshop this Saturday, February 27 at The Ontario Science Centre in the Imperial Oil Auditorium from 1 p.m. to 4 p.m. for anyone over the age of 16. Tickets are $29 and available through www.TotallyADD.com.

Dr. Jain said the main message of this workshop is that life can be easier when you know what's causing your symptoms and you can get the help you need, help that's readily available.

"I am constantly inspired by what my patients are able to achieve," he said. 

UNDERSTAND YOUR STRENGTHS AND WEAKNESSES

"The key to success with ADD is to develop an understanding of your strengths and challenges, and then embrace those traits. When treated properly, ADD can be managed and even harnessed to the point that it becomes a driving factor in a highly successful life. 

"People such as Dr. Richard Branson, quarterback Terry Bradshaw, Olympic swimmer Michael Phelps, political savant James Carville, comedian Howie Mandel and many other famous and successful people have acknowledged that they had ADD."

The more you know about yourself, the more insight you have and the more emotionally healthy you can be.

So it is with my emotional and psychiatric health issues. That's why I continue to see Dr. Bob as often as I feel I need to see him. We work together peeling the onion, layer by layer. 

If you have any questions or concerns about ADHD, Saturday's interactive workshop at the Ontario Science Centre might help you face up to yourself and your fears. Once you know what's happening, your fears aren't so scary anymore.

Good luck and if you attend, please let me know what you learn. I'm always interested. Your sharing here will help lots of others.

*   *   *   *   *

I have intriguing and rather surprising news about Angela's progress with her ongoing ECT treatments as well as an unexpected announcement about my little Dandie Dinmont Terrier "bitch" Lucy, but I'm saving both for Friday morning's post.

See you then, have a lovely meantime, and speak soon.

Taking a break...

I’m taking a vacation. One week. I feel I need it.

My two recent posts on ECT, DBS, VNS, rTMS for TRD required a great deal of research and generated some very heated reaction in my email box – but not in public comments.

I spent the whole weekend writing personal emails and fielding insults from angry and hurting people who don’t agree with what I wrote, and have had very different experiences from mine.

Disagreement is fine. I want you to disagree with me. That’s what comment boxes are for and what blogging is all about. It’s turns an opinion into a dialogue or as the headline said, “A Charged Debate.”

This was different. The public debate I expected fizzled. It went into my in-box where it dies.

Only one person, Susan, had the courage to comment. She is an award-winning journalist from New jersey, with her own excellent blog and her own horror story about ECT.

Yet she thought my story “was good” and that I “did a good job,” she wrote in her comment.

None of the others would post publicly, and what I really couldn’t understand is how they refused to acknowledge my own personal experience with ECT. In the 1960s and 1970s I had several courses of between six and 12 treatments of bilateral ECT administered at The Clarke Institute of Psychiatry.

Here's the problem I think these people had with me. Those ECT treatments did not damage my brain.

It was all on the record.

I always joke to my husband, that if it had damaged my brain, beforehand, I must have been absolutely brilliant – and I wasn’t. My only side effect was a tiny bit of temporary memory loss. It all returned within a few months.

One person, who will remain nameless, insulted me, attacked my journalism and then in his response to my email to him, admitted that he had never even read my blog.

This man is a leader in the anti-psychiatry movement. I’m speechless.

I asked my good friend Tanya Shute her thoughts on all this.

Tanya is an activist, “survivor” – a label I don’t like but will settle for here because it’s relevant – and executive director of The Krasman Centre for Community Mental Health in Richmond Hill.

Here’s what Tanya said: “ECT is one of those topics that really fires people up. I think that people think the consumer survivor movement is all anti-ECT. The people who I have a lot of respect for in the mental health community have spoken about the positive outcomes for them with ECT, as well as many who have had negative experiences.

“The point for us is that people have informed consent and choice, not whether we agree with the modality. Many people who I have seen have serious criticisms of the mental health system but are positive about their experiences of ECT.

“I think it is one of the most controversial topics in our field – and you became a scapegoat for this guy’s anger about ECT. Don’t forget, just because people are psychiatric survivors doesn’t mean that there aren’t assholes among us. Recovery is about dissent, resilience, rebellion -- keep yours up, and your chin too just in case you get sucker-punched again.”

Thank you, Tanya. I knew I could rely on your support and wisdom.

One more thing… I made a mistake in my July 25 post when I wrote that ECT was invented in Germany in the 1930s. It was invented in Italy in 1938. I spotted it yesterday.

Curiously, in all the criticism I received by email, no one pointed this mistake out to me.

Have a great week and stay well.

Cheers,
Sandy

ECT vs. TMS. VNS vs. DBS. Huh? (Part Two)

I had no idea I was wading into a mysterious minefield of acronyms when I started comparing ECT and DBS last week.

All weekend, I mulled over this "charged" debate between Electroconvulsive “Shock” Therapy (ECT) versus Deep Brain Stimulation (DBS).

The more I thought about it, this more this “either/or” proposition bothered me.

CHARGED, CONTROVERSIAL, CONTENTIOUS

It's charged, all right. Very controversial and political. Consider the history of ECT.

Add all the agitprop Hollywood and other moviemakers have infused into the emotional discourse that swirls around ECT, morphing a psychiatric treatment into an instrument of cinematic horror – and no wonder ECT is so contentious.

Finally, a 20-minute phone-chat with my psychiatrist, Dr. Bob, cleared things up.

You'll see what I mean when I spell out the following acronyms of four approaches that all play a part in this "charged" debate.

ECT AND DBS AND VNS AND rTMS for TRD

ECT is Electroconvulsive "Shock" Therapy – for years it's been proven to work in many cases.
rTMS is repetitive Transcranial Magnetic Stimulation – similar to ECT, but less invasive, does not cause a seizure, but is still experimental.
VNS is Vagus Nerve Stimulation – newest of these procedures, surgical, not as invasive as DBS, but similar. Doesn't involve drilling holes into the brain. Not yet widely available.
DBS is Deep Brain Stimulation – most invasive surgical procedure, considered the last resort. ECT is a prerequisite. Still undergoing trials.

ECT, TMS, VNS and DBS all fall under the general category of Psychiatric Neuromodulation – procedures that use either electrical or magnetic currents on the brain to treat debilitating psychiatric conditions – mainly treatment resistant depression TMR – long term, chronic depression or constantly recurring depression which does not respond to standard treatments like medication or psychotherapy.

Dr. Bob explained that ECT and DBS are like apples and oranges. They don't compare as well as ECT vs. rTMS. And VNS vs. DBS.

NOBODY UNDERSTANDS WHY OR HOW "PSYCHIATRIC NEUROMODULATION" WORKS

Nobody really understands how and why these procedures work and the only one with any real track record is ECT.

Veteran CBC and CTV radio and television broadcaster Helen Hutchinson calls ECT her "ace-in-the-hole."

In 1994, after years of numbing, debilitating depression, and more than five years of psychotherapy, a series of antidepressants, four hospitalizations and two suicide attempts, Hutchinson agreed to try ECT. One course. Six treatments.

"I welcomed it when I finally decided to have it," she told me in January 1995, during a Toronto Sun interview. "After all, what can I lose – a few brain cells?"

After her first ECT treatment, "It was like the light went on, like a blind suddenly flapped open. Instead of being in a tunnel with just a tunnel at the end, I was released," she said.

Earlier this week, Hutchinson, now-73, sounded vibrant and excited to hear my voice after 13 years when she picked up her phone.

SHE NEEDED ONE COURSE. SIX TREATMENTS. NO MORE.

"I'm just fine," she said. That one course of ECT did the trick.

Hutchinson still sees her psychiatrist regularly, takes an antidepressant and knows if ever her depression threatens, ECT is available on an outpatient basis.

“That’s never been necessary,” she said.

For Deanna Cole-Benjamin, more than 80 ECT treatments did nothing for her devastating depression.

"For a short time, there seemed to be a glimmer of hope that it would work, but it never did," the Kingston, Ontario public health nurse said recently on the phone – happy to interrupt a quiet summer evening in her backyard with her husband and four children.

In April 2006, Cole-Benjamin, a public health nurse, now 44, was the subject of a riveting Sunday New York Times Magazine feature called A Depression Switch?

ECT IS A PREREQUISITE FOR DBS

Her depression seemed to come out of nowhere and for no reason in late 2000. Antidepressants were useless. Eventually, she had to stop working and was hospitalized for 10 months. Her depression proved completely resistant to all drugs, psychotherapy and all that ECT. For the next four years, she was in and out of hospital many times and often contemplated suicide.

In 2004, she was asked to participate in the first clinical trial of Deep Brain Stimulation, radical new brain surgery for treatment resistant depression. It was developed in Toronto by neurologist Dr. Helen Mayberg and her neurosurgeon collaborator Dr. Andres Lozano whose small DBS trial at the Toronto Western Hospital was recently published in the journal Biological Psychiatry.

"I feel very well," Cole-Benjamin told me.

The battery in the neurotransmitter in her chest (a pacemaker-like devise) needed to be replaced once, "but that's just day-surgery. Now I just go to Toronto periodically for check-ups," she said.

DBS – VERY, VERY INVASIVE SURGERY

“The initial surgery was very, very invasive," she recalls. It involved drilling holes into her skull and then deep inside her brain, so two electrodes could be inserted into Section 25, a procedure that has already been performed on 30,000 people with Parkinson's Disease.

She was awake during this two hour operation, under a local anaesthetic so she could report any changes she felt.

Today, Cole-Benjamin jokes about her brain bionics.

"My head's a little bumpy from all the electrodes," she said, laughing. "My hairdresser always says that – and when I'm travelling, I can't go through airport security scanners."

A small price to pay to have your life back.