by benforred | May 5, 2025 | Living with a Rare Neurological Disease, Navigating Disability
Today, we feature our guest blogger, Emily Johnstone, as she delves into how HOD changed motherhood and parenting. The Many Roles We Play We all have many roles in life—daughter or son, wife or husband, sister or brother, patient or caregiver, mother or father. For... 
by benforred | Apr 5, 2025 | Living with a Rare Neurological Disease, Navigating Disability, Rare Disease Community
This is the fourth post in our series discussing the Kubler-Ross Five Stages of Grief model as it applies to chronic illness. Did you know that research has found a link between neuro degenerative disease and major depressive disorder (MDD)? It’s true! This... 
by benforred | Mar 25, 2025 | Living with a Rare Neurological Disease, Navigating Disability, Rare Disease Community
This is the fourth post in our series on the five stages of grief model A natural response to receiving a devastating diagnosis is bargaining. You may be wondering what that means. According to chosingtherapy.com, bargaining feelings can consist of: Anguish Shame or... 
by benforred | Feb 5, 2025 | Living with a Rare Neurological Disease, Navigating Disability, Rare Disease Community
In times of heightened activity, it is easy to slip into feeling helpless. We want nothing more than to be of service and helpful. Because of our limitations, people feel like we are better off not participating in the work, but rather just enjoying the activities.... 
by benforred | Dec 25, 2024 | Living with a Rare Neurological Disease, Navigating Disability, Rare Disease Community
Thoughts on participation By Christina Coates, HODA Board President I clearly remember the day that I decided to do my part and participate in the solution to Hypertrophic Olivary Degeneration. It was a Saturday morning, and I was the only person in my house awake. I... by benforred | Dec 5, 2024 | Awareness, Living with a Rare Neurological Disease, Navigating Disability, Rare Disease Community, Support
Hi everyone. HOD patient, HODA Lead Ambassador, blogger when I feel like it (www.myinvisiblebff.com), and blog guest-poster, Erin here! Today, I want to share some tips on managing fatigue. Today I wanted to share a few ways to describe your fatigue. According to the...