About Book

About the Book

This book was written for those of us going through the "in-between years:" the years following our Huntington's disease genetic testing, but before the symptoms of the illness have begun to take hold. The years when we may struggle with this look into the crystal ball we've been given, for whatever reasons are personal to us. The years when we symptom-seek and worry about every forgotten purse and each trip and stumble. The years when we watch and care for other HD affected loved ones and wonder, how long until it's our turn?


Excerpt from the book:

"It's not the result we were hoping for."

Those eight little words echoed in my head like a Mack Truck rolling through a tunnel. A Mack Truck in the form of a telephone call from a Genetic Counsellor at my local hospital.

"What, me?", was my gasped response.

"Yes," she replied, "I'm sorry."

I sat there in total stunned silence and started to think about all the consequences related to what she had just told me. What this news would mean for my family and me, possibly for generations to come.

That was the moment my life completely changed. Changed in pretty much almost every conceivable way. How I looked to the future. How I reflected on the past. How I coped with the present. It changed what I found to be important and what I saw not even to be worth my time.

It was the day I found out I was positive for the gene mutation that's responsible for Huntington's disease. The disease that I've heard some resources refer to as "one of the worst diseases you can get" and "it's like having Alzheimer's, ALS and Parkinson's disease all at the same time!"

Where was I to go from there? What was I supposed to do? How could I cope with the knowledge that, unless a sufficient treatment came along soon, this disease was going to kill me in the not too distant future?

I had no idea what to do next, and I felt utterly alone.


Chapters in this book include:

  1. Steve's Huntington's Disease Story
  2. What Is Huntington's Disease?
  3. What Does My CAG Number Tell Me?
  4. Becoming Involved with Huntington's Disease Associations
  5. Your Health Care Team
  6. Participating in Research
  7. Symptom Seeking
  8. Fear
  9. When Do I Tell People About My Huntington's Disease?
  10. Anger
  11. Making Babies
  12. Staying Positive
  13. Exercise
  14. Caring
  15. Guilt
  16. Journaling
  17. Planning Ahead
  18. Following the Latest Developments in Huntington's Disease News
  19. Is Huntington's Disease Genetic Testing Even Worth the Trouble?
  20. When Symptoms Start
  21. I Look Forward to The Day When There Won't Be A Need for This Book
  22. Calls to Action

What is Huntington's Disease?:

Huntington's disease is a neurodegenerative disease that affects parts of the brain and leads to behavioural, cognitive and movement disorder symptoms.

HD is caused by a mutation in a specific gene, now known as the Huntington gene. Huntington's disease is tragic in that it affects people in their prime. Symptoms often begin between the ages of 30- to 50-years-old. Currently, there is no cure for HD and once those affected become symptomatic, death usually occurs in 10-15 years.