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A PERFECTly ghastly STORM

I looked up Huntington's Disease. Wow!

If I thought I had it bad!!?!! Huntington's is like ALS, Alzheimer's, and Schizophrenia altogether. I cannot imagine, and I don't have to. I see it everyday. (or, I think I do.) My neighbor here at "the home" seems to have it. I say "seems" because nobody will share her diagnosis with me, rightly so, due to HIPPA laws. But, you cannot hide symptoms.

Tiny, bird-like in appearance, translucent pale skin, luminous dark eyes and tresses, and torturous, stick-like limbs.  She evokes the protective mama bear in caregivers and patients alike. I tried making friends when I arrived to no avail. She'd look down, ignoring me and hyperfocusing on her activity, usually being fed. I was dismayed see her spend days in a darkened room despite a prime sunny location. Not unlike me, irregular sleep\wake cycling; must have others perform all activities of daily living; very limited ability to communicate.

She swings from agitation to calm, but mostly agitated. Hand-held bells accompany her wherever she goes, and she goes, like an Eveready bunny scooting on her bom bom. Across a sea of padded mats, she scoots or gingerly totters and falls, usually seeking food, caregiver companionship, or pain relief. How they discern what she wants or needs, I daren't guess.

I recognize her struggles, we share so many symptoms and struggles. She chokes on her food, doesn't have control over her limbs, has no command over her life; she's terminal. We are terminal.

I wonder which is worse--to have full cognition as I become a prisoner in my body with ALS or to also lose control of one's faculties, as is happening with her with Huntington's?

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Location: 2720 E Madison St, Seattle, WA 98112, USA

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