Chapter 2: Living with illness and grief

Brain illnesses and their impact

I've been there
Jim speaks about his wife Sarah's diagnosis with Huntington's Disease.(3:22)Video transcript
Elizabeth shares about her mother's diagnosis with Alzheimer's disease.(3:22)Video transcript
Gary speaks about his own diagnosis with Alzheimer's and living with the illness.(3:22)Video transcript

It was difficult to watch him change. We saw changes not only in his physical abilities to care or stand for himself but also in his role in our family and in the community.

They have good days and bad days. We try to take each new day as it comes and make the most of our time together.

There are many types of progressive neurological illnesses, and in general, they are chronic and irreversible. While some treatments can slow progress or help to control symptoms, there is currently no cure for these diseases.

Neurological diseases affect a person’s brain and their whole being. Thinking, emotions, and movement – all things that make us who we are – change dramatically over time. When someone you care about is diagnosed with a progressive illness, it can impact your life too. While not an exhaustive list, here are some examples of common progressive neurological diseases:

Amyotrophic lateral sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) affects the brain’s ability to communicate with the muscles of the body, leading to increasing paralysis. A person with ALS loses the ability to walk, talk, eat, swallow, and eventually breathe. In some families, ALS can be hereditary.

For more information about ALS, please visit ALS Canada.

Some progressive illnesses, such as Huntington’s disease, are hereditary. There are some “familial” variations of other diseases, such as amyotrophic lateral sclerosis (ALS), multiple sclerosis, and Alzheimer’s disease, that put family members at a higher risk of getting the disease.

For more information about these illnesses and where to find support, please see the Resources section at the end of this module.