Caregiving, Love

Huntington’s Disease Slowly Takes Away Independence

John and I stood by his three (3) sisters, Lora, Marcia and Cindy in the slow decline caused by   Huntington’s disease (HD).  I describe the slow decline as losses; loss of the ability to drive, to dress yourself, to put your makeup on, to work, to pay your bills, feed yourself, talk.  Because of these losses, one is unable to manage day to day life and perform activities of daily living, which compromises their independence. (Activities of daily living (ADLs) are basic actions that a normally functioning person performs every day. The six standard ADLs are bathing, dressing, toileting, transferring (moving to and from a bed or a chair), eating, and continence.)

As these losses occur in a person with HD, which can be over a 20 years, caregivers as well as those declining, carry grief in their hearts.  I did, especially with Marcia as I managed her care. Marcia’s decline was difficult for me because in all the years I had known her, she took pride in her appearance and was the most stylishly dressed woman I knew.  She was a professional at AT&T in San Francisco for 17 years, so when she had to switch to pants with an elastic waist, she couldn’t manipulate a zipper, and had to replace her fashionable shoes with tennis shoes with velcro, my heart became heavy.

  We Can Never Lose HOPE………

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website:

Please make a donation this holiday season to the nonprofit, Huntington’s Disease Society of America, to help fight HD.




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