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,, which she began as a way to reach out to other brain injury survivors and their caregivers.

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The ABCs for Brain Injury Survivors: G is for Gratitude

G is for Gratitude 900x900

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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Living in Montgomery County Saved My Life

Suzanne Tobin on far left in red shirt, at a 71st  birthday celebration for her oldest sister, Cornelia (seated) who had a different type of brain injury, viral encephalitis, in 1996.

Allow me to introduce myself: I am a brain injury survivor and a medical miracle. If I had lived any place other than Montgomery County, I’m not sure I would have made it to my 60th birthday. I barely made it to the correct diagnosis, just under the six-month time frame before the rare viral […]

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