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 25, 2025 | Living with a Rare Neurological Disease, Rare Disease Community
‘Acceptance’ is the final installment of our blog series on the Kubler-Ross Five Stages of Grief model, as it applies to chronic illness. It’s a funny thing, trying to write about acceptance when you are nowhere close to being in that headspace.... 
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 | 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...