My New Normal

Suzanne Tobin is a former copy editor and designer for The Washington Post. At 59, in great health and working full-time as a copy editor for AARP, Suzanne was planning a trip to London to celebrate her 60th birthday, when everything changed. She experienced a series of seemingly unrelated health complications that took her from able-bodied to wheelchair-bound in five months.

Four years removed from her life-threatening nightmare, which was featured as The Washington Post’s “Medical Mystery” on April 21, 2015, she continues to pursue any therapy that offers some promise of improving the permanent damage to her brain.

There is still no proven treatment for either of the rare diseases that were diagnosed in her case: progressive multifocal leukoencephalopathy (PML) and idiopathic CD4 lymphocytopenia (ICL). By participating in two NIH “natural history” research studies, one for each disease, she hopes to make a contribution to help find a cure for others.

To learn more about her journey of hope and resilience, follow her blog, ournewnormal.support, which she began as a way to reach out to other brain injury survivors and their caregivers.

Partner Blog for My New Normal

ABCs of Brain Injury: G Is for Genetic Testing

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Depression is a  fairly common occurrence among brain injury survivors. We are survivors because we have the inner strength to overcome many difficulties that life places in our path. Treating this particular type of depression is anything but routine.  There are unseen genetic factors that can affect one’s ability to respond to medication for depression. Four years after my correct […]

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ABCs of Brain Injury: H Is for Humility

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As I mentioned in my last post, having the humility to recognize my deficits is essential to my progress. On Monday, I had the humility to visit my neuro-optometrist at the Vision and Conceptual Development Center for my annual checkup and ask for help again. For more information on this field, visit the Neuro-Optometric Rehabilitation Association website […]

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ABCs of Brain Injury: T is for Toolkit

Suzanne Tobin profile

Since my brain injury, I have had to develop a whole new set of tools to deal with my mixed emotions about losing my independence and accepting the losses that I have experienced as a result of my disabilities. This toolkit includes things like patience, humility, keeping an open mind to different therapies (including drug therapies), and letting go […]

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ABCs of Brain Injury: S Is for Setback

Photo |  Carole Starr via Suzanne Tobin

Brain injury recovery often follows a circuitous path; just like the board game, Life,  it has unexpected twists and turns. Brain injury recovery is a marathon, not a sprint, and, like the Boston Marathon, often features Heartbreak Hills of its own. To the brain injury survivor,  who is trying to stay positive and celebrate any […]

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The ABCs of Brain Injury: V Is for Voices in Brain Injury Recovery

Photo |  Carole Starr via Suzanne Tobin

Follow the winding path of my journey of brain injury recovery, an amazing and life-changing experience… In 2017, I attended the annual conference of the Brain Injury Association of Maryland for the second time. The closing keynote speaker was  Carole J Starr. A brain injury survivor, she talked about her new book, entitled To Root & To Rise: […]

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ABCs of Brain Injury: L Is for Life

Ancelmo Diaz | MCPD

So many of us are caught up in our jobs, our commute, and all the incidental errands and chores that take up our time. But after coming so close to death, I have a new perspective on what is important to me. And that’s life. The American Academy of Neurology has redesigned and changed the […]

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ABCs of Brain Injury: P is for Progress

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Progress is progress, no matter how small.* Progress in brain injury comes in increments, and progress may be difficult to recognize day-to-day. Progress must be celebrated, because brain injury recovery is measured in years, not days or months. This month, I  attended the 30th annual Brain Injury Association of Maryland Annual Conference in Timonium, Md. […]

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ABCs for Brain Injury Survivors: C is for Comeback

Suzanne Tobin at rehab center

The Stroke Comeback Center (SCC) is opening a second location at 55 West Edmonston Drive in Rockville on the corner of Rockville Pike on March 12. They welcome not only stroke survivors, but brain injury survivors as well. Save the date! There will be an open house at the Stroke Comeback Center on Thursday, April 26. I […]

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The ABCs for Brain Injury Survivors: G is for Gratitude

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One thing I have done  since the beginning of my recovery from my brain injury is be grateful for any small step I can make to improve myself physically, mentally or spiritually. My first gratitude lists consisted of any small step I made in my physical progress. For example, as the experimental medication began to […]

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The ABCs for Brain Injury Survivors: A is for Attitude

Amy Tan quote

Last week I introduced myself to you in my debut post about my brain injury.  I told you about how “Living in Montgomery County Saved My Life.” OK, so I survived. Now what? If you are familiar with the five stages of grief as defined by Elizabeth Kubler-Ross in “On Death and Dying” (1969), I […]

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