Most of us will face a situation in our lives where we feel helpless.  Whether it’s an unfortunate diagnosis for ourselves or loved one, an accident, or a traumatic event, when bad things happen it’s natural to be overwhelmed and become exhausted, feeling like every day of coping is like swimming alone against the current.  Personally, I have been feeling this way in response to my mother’s decline with her neurological degenerative disease.  Despite her best efforts at fighting the effects of Progressive Supranuclear Palsy, it breaks my heart to see her struggle to maintain her ability to swallow or speak even a single word at this point.  I had been feeling like we were both drowning.  Fortunately, I attended a conference in Phoenix this weekend, put on for patients and family members by the CurePSP Foundation.  What I received in terms of knowledge and connection has rejuvenated me, offering me support and resources, and a new perspective.  I share this with you this week in hope it might help someone else feeling beaten and helpless with their own struggle, whatever it may be, find a source of some empowerment.

Knowledge is indeed power.  While there is no cure to my mother’s illness, the series of lectures and presentations filled in many of the gaps I had, some I didn’t even know I had, in terms of understanding what was happening to her.  Some of the quirky behaviors I thought unique to my mother, I learned were actually not uncommon, and now understand why they happen.  In learning about the research of the cause of the disease, it relieved fears about heredity and the feeling she carried that she had somehow done something wrong to expose herself to the illness.  I came away with strategies for some of our challenges and a better sense of what to expect moving forward.  The knowledge I gained already is helping me to shift from helpless frustration to thinking about what I can do.  From little changes in how to interact with my mother to communicate more effectively, to resources that I became aware of, all the way up to the big picture of advocacy, I now have things I can do to help her, help me, and hopefully help others.  I can’t begin to describe the inspiration I got from the people I met, too far along in the disease to benefit from research, signing up to donate their brains for research when they pass.  Each expressed actual gratitude for the opportunity to do something beneficial.

The other incredible source of power I was able to tap into was the connection to others; a common humanity.  There was an immediate sense of intimacy when I walked in the room for the first time, seeing the wide eyed facial expressions (typical of the disease as a result of eye muscle issues), the canes, walkers, and wheelchairs, the bottles of liquid thickeners, and alarms going off to remind people of medication times.  I was able to hear the stories of many others with both similar and differing journeys.  It helped me actually appreciate that while my mother has had a long tragic decline, she has not had to endure hospitalizations from pneumonia or broken bones as many others had.  I felt a sense of gratitude, myself, at being able to share my accumulatd knowledge with daughters and sons whose parent was recently diagnosed.  I was also able to put the anonymous names of Board members on the CurePSP website together with faces, and hear stories of their own losses and motivations to serve.  I spoke with researchers, neurologists, social workers, and caregivers, all dedicated to understanding the illness, finding a cure, and improving the quality of life for themselves and others.

When struggling with a life changing event, it’s easy to become isolated and feel the burden is more than you can bare.  And it is true, because no one can do it alone.  We need others to help us stay afloat, to show us the way, and to follow behind us.  This weekend, thanks to the generosity of people who serve, people who study, people who donate, and people who share, I still feel the power of the raging current, but I have knowledge as a life preserver and others to float alongside with down the unpredictable bends in river.

Sad fact I learned: Dudley Moore, may his memory be for a blessing, died from complications of PSP.