Keeping a Sense of Self with a Chronic Disease

Our guest speaker for our next meeting on Wednesday October 7 will be Dr. Hilary Goetz, Psy.D. She will begin promptly at 1.00 p.m., so please plan to sign on 10 – 15 minutes earlier. She will talk about Managing Mental Health in Parkinson’s Disease, including anxiety and stress, followed by a question and answer period. Her visit will be about 45 minutes, after which we will have time for sharing among ourselves. Please remember to sign in from a private area of your home to preserve the confidentiality of the group. Zoom link will be sent the day before the meeting.

Hilary Goetz, Psy.D., is a fellowship-trained neuropsychologist at the Inova Neuroscience and Spine Institute (INSI). Dr. Goetz assesses adults presenting with cognitive changes in the context of neurological, medical, and psychiatric conditions. She provides comprehensive neuropsychological evaluation of adult outpatients with a variety of neurological conditions, including epilepsy, memory disorders, brain injury, cerebrovascular disorders and movement disorders. Dr. Goetz joined INSI in 2018. Prior to her current position at Inova, she administered neuropsychological assessments at a private practice in Athens, Georgia, and at Kaiser Permanente Medical Center in Los Angeles, California. She holds a doctoral degree in clinical psychology from Pace University and a bachelor’s degree with honors from Cornell University. Dr. Goetz lives in Northern Virginia with her husband.

The following was written by one of our members and is posted here with her permission. It cuts to the heart of what women supporting women is all about.

Keeping a Sense of Self with a Chronic Disease

“I’ve lost so much of myself, I don’t even know who I am anymore.”

This heartbreaking statement was made to me in a voice almost too quiet to hear. The speaker has Parkinson’s disease and it has really advanced in the last 3 or 4 years. She’s often in a wheelchair or using a walker but on good days she can walk with a pretty powerful stride.

She wonders, “Who am I?” When I first met her at a nearby pool, she had a powerful and pretty breast stroke. These days she can move her arms but she can’t make her legs do what they have done before. I’ve supported her legs for her a couple of times while she’s tried to make them move like she knows they should, but she’s lost that ability.

She has a strong personality, maybe the stronger between her and her husband. It’s still there, but losing the volume in her speech finds her outright ignored sometimes and her husband speaking for her. She’s taken several voice programs offered for people with PD; each provided only temporary success. So now at gatherings with friends or family, she tires of trying to join in the conversation, struggling to be heard. She’s tired of the repetitive “What?” and “Say that again” as others strive to hear her disrupting the flow of conversation. So she sits back and listens instead.

Her husband, her best friend and fiercest advocate, is looking wan and tired. He’s lost a bit of weight. Being her caregiver lately has been very hard for him, physically and emotionally. Their relationship is evolving. He’s taken away her car keys and driver’s license. She grudgingly admits it was for the best, but it’s hard to give up your independence There’s resentment on both sides as well as exhaustion and frustration.

“Who am I?” she wonders. “I’m not heard in a group. I can’t carry on a long conversation. I have physical limitations and am dependent on others for transportation. I’m more my husband’s patient than his wife. My doctors can’t seem to find the right combination of medications that would allow me to be more functional. For all intent and purpose, I’m already gone.”

Later, she thanks me for listening. I tell her it’s no problem. I am her and she is me. The only difference is timing.

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