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 | Mar 5, 2025 | Living with a Rare Neurological Disease, Rare Disease Community
This is the second post in a series dealing with the five stages of grief based on the Kubler-Ross Model. We have all heard of the Five Stages of Grief, but how does one navigate the stages when faced with an unrelenting chronic illness, such as Hypertrophic Olivary... 
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 | Nov 25, 2024 | Navigating Disability, Rare Disease Community, Shopping Guide
Can you believe that it is time for our Annual Holiday Gift List? Time flies when you are advocating for HOD Heroes! Excitement abounds for our annual curated list, made especially for the HOD community. We know that you will find these useful all year round! Please...