Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington's

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington's

by Therese Marie Crutcher-Marin
Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington's

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington's

by Therese Marie Crutcher-Marin


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Therese Crutcher-Marin’s world was turned upside down when she learned that her fiancé, along with his three sisters, were all at risk for Huntington’s.

Huntington's disease is a devastating inherited condition that produces a combination of neurological, motor, cognitive and psychiatric symptoms. It’s been compared to having Parkinson’s, Alzheimer’s, and ALS all at the same time. There is no cure.

In her new memoir, Watching Their Dance, Crutcher-Marin shares her deeply personal story of marrying into a family at risk for Huntington’s. “Some lives seem to move smoothly along a natural continuum, with one event or decision seeming to slide into the next,” she writes. “Such people seem to have faced no dramatic forks in the road, had few life-altering choices to make. Other lives, at least in hindsight, travel in a particular direction at one particular life-changing moment. That’s what happened to me, when, at age twenty-two, I suddenly had to confront the most complicated decision of my life.”

Crutcher-Marin tells of her soul searching and her fears as she contemplated a life of unpredictability: her fiancé and each of his siblings had a 50-50 chance of developing a fatal wasting disease that had no test, no treatment, and no cure. She shares the great happiness and joy she experienced when she took a leap of faith and married the love of her life, along with the tough choices and pain that became part of her life as one by one her sisters-in-law slowly succumbed to the disease.

Watching Their Dance is a truly inspirational story of hope as Crutcher-Marin shares the path she has chosen may be difficult but it has opened her heart to love more deeply and made her life that much richer. What Therese learned from the Marin siblings could never be found in a book, a classroom, a religious setting, or a therapist’s office. Forty years ago, Crutcher-Marin took the biggest gamble of her life by keeping these people in hers, and it made her the person she is today.

Therese Crutcher-Marin is a member of the board of directors of the Northern California Chapter of HDSA. She lives with her husband John in California.

Product Details

ISBN-13: 9780998442204
Publisher: Norcal Publishing Company
Publication date: 03/22/2017
Pages: 312
Product dimensions: 5.25(w) x 8.00(h) x 0.65(d)

About the Author

No one could have written Watching Their Dance but Therese Crutcher-Marin. Therese multitasked for years: working fulltime, raising two children, coping with her husband's at-risk status for Huntington's disease, and eventually managing the care of two sisters-in-law and observing the decline of the third.
Therese earned her college degree in business administration with a concentration in marketing and went on to work in management in Sacramento. Later, knowing that at least some in her husband's family would develop Huntington's, she chose to pursue a master's of science in healthcare administration, and later worked as head of support services of the Auburn Faith Community Hospital hospice program. Her goal: to empower people with the knowledge and resources to maintain dignity, quality, and control in their lives until their final breath.
Therese managed more than two hundred hospital volunteers, which strengthened her community-outreach program, and established two revenue-producing entities for the Auburn Faith hospice program, the hospice thrift store and Hospice Healing Garden, both of which continue to fund the hospice program. She has been a member of numerous boards and committees, including the Placer County Commission on Aging, the Older Adult Advisory Committee, and the Sacramento Hospice Consortium.
During her healthcare career, Therese developed and implemented yearly marketing plans that included newspaper articles and ads, quarterly newsletters, brochures, radio and TV appearances, and talks to clubs, service organizations, and professional associations. She taught a class called Born Dying at Sierra College, in Rocklin, California. She published The Placer County Senior Resource Guide, now in its twentieth year of publication.
Being a part of the Sacramento Suburban Writers Club fueled her desire to improve her writing, as did the critique group she participated in for two years. This is her first book.

Table of Contents

Table of Contents

1. The Marin Family Secret 11

2. Huntington’s Disease 20

3. The Neurologist Visit 30

4. Walking Away 37

5. An Epiphany 43

6. The Biggest Gamble 50

7. Life at Risk 58

8. The Four Marin Siblings 62

9. The Canadian Sister 70

10. Twitches 76

11. The Demons Within 83

12. A Long Way From Home 92

13. A Genetic Marker 104

14. Baby Keith 116

15. Return to Work 124

16. The Accident 131

17. A Neurological Exam 142

18. A Pre-Symptomatic Test for HD 149

19. Marcia’s Bravery 156

20. Ways to Lower Anxiety 161

21. A Path of Self-Destruction 168

22. A Cerebral Hemorrhage 172

23. The First Loss 180

24. The M.S. Degree 187

25. Closer Is Better 197

26. Quality of Life 202

27. Anticipatory Grief 212

28. The Wanderlust Aunt 221

29. Watching Their Dance 229

30. Crohn’s Disease Speaks Out 239

31. John’s Heavenly Gift 249

32. A Father’s Love 260

33. An Advance Healthcare Directive 270

34. Accumulated Losses 284

35. A Gift 291

Epilogue 301

Afterword 304

Huntington’s Disease Update 306

Acknowledgments 308

About the Author 311

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