My ALS Journey

​

December 11, 2024, is a date forever etched in my memory — the day I received my diagnosis of Amyotrophic Lateral Sclerosis (ALS). ALS is a devastating nervous system disease that affects nerve cells in the brain and spinal cord, ultimately robbing people of their ability to move, speak, eat, and breathe. There is no cure for this fatal disease.

​

When I first heard the words, they didn’t fully register. Even now, I struggle to accept this fate. My mind raced: Why me? What will happen to my kids? The dreams my husband and I had for retirement — gone. The questions were endless.

Once the initial shock settled, I realized I needed to focus on what I can still do. Whether I have two years, five years, or ten, I want to make the most of the time I have — to find purpose in sharing my journey.

​

That’s why I decided to create this webpage and blog — to offer support, share insights, and hopefully help others facing similar battles, whether with ALS or any chronic illness.

​

In the weeks ahead, I plan to share what I’ve learned about:

• Managing the emotional roller-coaster of this illness

• Navigating the workplace and understanding your rights (I was terminated from my job due to my illness— a painful experience, but an important lesson).

• Advocating for yourself in healthcare.

• Breathing exercises, stretches, and routines that have helped me manage day to day.

• Tackling health insurance challenges.

• ​

I hope these posts will be helpful. 

​

Also, please feel free to comment, ask questions, or share your own experiences. If my journey can offer even a glimmer of hope or guidance, then I know this effort will have meaning.