This thread is about depression - but it isn’t ‘sad’. I've accepted that my mental illness was ongoing and cyclical. Caused by a faulty part in my brain. That’s ok! I could have had a pancreas that didn’t work or a heart that malfunctioned, too. But I got a broken brain...
Fine! Let’s deal with it. What does treatment look like for a broken brain? Last week, my brain received 72,000 ‘zaps’ through a magnetic coil to the part of my brain that’s ‘broken’. I’m weepy because I already feel a difference...
I’m weepy because I keep forgetting what it feels like to not be ‘sad’ all the time (it’s deeper than this). If we think of emotions as chemicals and electrical impulses, those zaps have encouraged the part of my brain that makes emotions happen to work again...
I now have access to joy, happiness, surprise, love, etc. - and gratitude for feeling human again. After years of trying meds (with side effects) I heard the words “Treatment Resistant”. This simply meant we had to try other therapies. #ECT or #ElectroshockTherapy was offered...
Despite a giant fear due to bad info, media, stigma and fear of judgement - I gave it a try. I wanted to die so I had nothing to lose. #ECT WORKED! I had forgotten what it felt like to want to live. To feel light...
...to have access to the opposite side of the spectrum of emotions than where my brain normally lived. I felt HAPPY! Knowing by now that my illness was cyclical, we knew remission wouldn’t last forever, but it felt good to know that there was something that worked for me...
and that I had a team of doctors at @CAMHResearch who listened to and respected my every word… #ECT isn’t easy. I was under anaesthetic and given a seizure 3 times a week tapering off after a few months once you show progress. It’s a bit hard on the body and brain...
And your life gets put on hold organizing rides, child care, recovery, MONEY, my life was already on the edge. But man, feeling happy was WORTH it! It doesn’t come without side effects though, and unfortunately I fell under the small percentage who have major memory issues...
Short term memory loss is one of the possible side effects with #ECT. The average person regains those short term memories within months (but who wants to remember when they were sick?!). Anyways, I was part of the very SMALL % who had major long term memory blocks disappear...
I don’t remember much of my son growing up or much of the last 2 decades. Was it due to depression? The ECT? That I struggle to be mindful to actually create memories?... here’s one example of an episode I experienced...I had just woken up in my hospital room, dazed & confused...
I called my husband “Where am I? What happened?” I cried. “Please come get me”. He said “Shelley, you must have had another ECT treatment. We haven’t been married for two years. I’m remarried - don’t you remember? I’ll call your mom.” Ugh... Another example...
...I was at a DREAM job (graphic designer) at @georgiancollege working with an AMAZING team.
Coworker just before a MAJOR meeting: “Shelley, do you have those final drafts?”. Me: “No. I’m sorry, you didn’t tell me about this project”. Coworker: “Yes Shelley...
Coworker just before a MAJOR meeting: “Shelley, do you have those final drafts?”. Me: “No. I’m sorry, you didn’t tell me about this project”. Coworker: “Yes Shelley...
...we had several meetings preparing for this”. I searched through my notes and found pages of my own handwriting, all about this project and the due date in bold. I dropped the ball BIG on that one. It can make me a very unreliable employee...
Don’t get me wrong - it’s rare to have such deep side effects from #ECT, I just seem to hit odds (why haven’t I won the lottery?!). ECT is a successful treatment for MANY - and it saved my life. It’s saved many friend’s lives. EVERY treatment (including chemo) has a cost...
...but the benefits outweighed the side effects, for me. I wanted to die, but I’m still here, watching my beautiful son grow… looking forward to a future. I am pro #ECT...
I even met my guy, @diesel6751, WHILE receiving ECT. He stuck around and became one of my biggest advocates. I’ve lost friends and been judged, but he's stayed beside me. He actually thinks I’m a pretty cool, positive and kind human. But this story isn’t over!..
I believe in research, it's where we make advances. So when #ECT became a bit much for my brain, my doctor at @CAMHnews told me about their research with #rTMS or #RepetitiveTranscranialMagneticStimulation. It’s effect was much like ECT but didn’t require anaesthetic AND...
I could drive myself to treatments. Wow. I joined the study… #rTMS is a series of short magnetic pulses directed to the brain to stimulate nerve cells. The magnetic pulses stimulate area neurons and change the functioning of the brain circuits involved. Burpees for my brain!...
My #rTMS schedule included 6 weeks of daily 3-min #thetaburst treatments. 4 hours of daily driving from Barrie to Toronto for a 3 minute treatment 😭. 600 magnetic pulses directed at a little spot in my brain? You betcha I signed up. And it saved my life. Again...
...But the remission time in between was shorter than ECT and I found myself needing treatment every 6-8 months... but that’s not even the poopy part… Sadly, this non-invasive treatment is not (yet!) covered by OHIP. Gasp!...
My treatments outside of the original study are only possible as ‘compassionate care’ due to loyal and generous donors and supporters like The #TemertyFamily and more. I, like many, could not afford private treatment. But...
...imagine if EVERYONE had access to quick, timely, non-invasive treatments that didn’t burden our healthcare system with the cost of a surgical suite, multiple doctors and nurses? Time missed from work... ETC... Be patient, my story gets even better...
This is what the last few years of my life looked like. I’d get 6 weeks of treatments, it would ‘boost’ my brain up and I’d have about 5 months of emotional stability and life enjoyment before I started declining again...
Not perfect - but wanting to die sucks and I felt grateful that I didn’t have to do ECT anymore... until last week... Last week, after another 6 month attempt at adding meds to my regimen (with the goal of extending remission time between treatments) I met with my doc at CAMH...
The meds didn’t work (another story!) but he told me about an exciting new rTMS protocol that was proving to be shockingly effective…
Stanford completed a study of an accelerated rTMS protocol that was delivered over the course of ONE week. ONE WEEK! What??? And it was helping people? Yes! It was well tolerated and safe? Sign me UP! There was an average 87.24% reduction in MADRS score and 90.32%...
...participants met criteria for remission. All participants were remitted on measures of suicidal ideation with no negative cognitive side effects, no seizures or other severe adverse effects. Efficacy was ‘strikingly high’ - we need more trials and studies to confirm this!
So last Monday, with support of friends and family, and a huge sense of gatitute to have access to treatments not widely available (working on it!), I trekked to @CAMHResearch to begin this new treatment...
I was at CAMH every day for 8 hours. Every hour, I have a 10 minute theta burst rTMS treatment delivering 1800 magnetic pulses to my left dorsolateral prefrontal cortex. Does it hurt?…
It does! You brain matter doesn’t have nerves, but your scalp has MANY (especially near your temple which is where my treatment is aimed). Each one of the 14,400 pulses that comes out of the coil placed against my head brings a bit of a tear to my eye...
It causes a bit of a headache, too. But anything is doable for 10 minutes, right? Especially if it stimulates the part of my brain that tells me I WANT TO LIVE! You know how your muscles need exercise to stay healthy? Your brain does too. These pulses are burpees for my brain….
So, is it the pulses of this new protocol that help the broken part of my brain start working? Yes. But it also might be the consistent hourly delivery. This keeps that part from becoming dormant again, so to speak. And I might be reaching here, but what it was a permanent cure?
Even it if wasn’t, I’m good with returning every 6 months for one week of a battery boost. Do what it takes, right? But imagine this…What if we could treat more of those with mental illness more quickly. With faster results and lower costs on our healthcare system?...
With shorter, non-invasive treatment time and therefore shorter time away from work, family, life. At every hospital or clinic. CAMH is working on this! But they need the support of research participants and those that make big healthcare decisions...
The economic burden of mental illness in Canada is estimated at $51 billion per year (health care costs, lost productivity and reductions in health-related quality of life. Unemployment rates are as high as 70-90% for people with severe mental illness...
In any given week, 500,000 Canadians miss work due to mental health problems and the cost of a disability leave for a mental illness is about double the cost of a leave due to a physical illness...
In Canada, 4,000 people die a year from suicide. 11 people a day. After accidents, it is the 2nd cause of death for people aged 15-24. First Nations youth die by suicide 5-6 times more than non-Aboriginal youth...
Suicide rates for Inuit are the highest in the world - at 11 times that national average. This is unacceptable. We have come a long way but have a long way to go…
While mental illness accounts for 10% of the burden of disease in Ontario, it receives just 7% of health care dollars. It is underfunded but about 1.5 billion. Only half of people who experience a major depressive episode receive ‘potentially adequate care’. This is appalling...
Why am I sharing my story and stats with you? Because I’m feeling hopeful again. The treatment is working. I’m FEEING again. And we need these effective, affordable, safe treatments to be covered, available and accessible. It isn’t fair that I, through whatever good fortune...
...have this amazing team here to help me. And others don’t. Because we need to change the stigma that metal illness is a choice or a weakness (it isn’t, I did NOT choose this and I am NOT weak). We need more people to feel hope, to reach out, to be treated - and to want to live.
• • •
Missing some Tweet in this thread? You can try to
force a refresh
