An Extraordinary Challenge Through the Eyes of

Huntington’s Disease

By: Ana Mariela F Gutierrez, Nurse,

Huntington’s Disease Unit,

Royal Hospital for Neuro-disability, Putney, England.

“You will never feel happiness or understand life if you have never felt pain.” My late grandmother used to tell me this whenever I got hurt or sick. I once asked “Why?” and she answered, “Because life is full of challenges. You either follow a straight or curved path, and underneath lie silver linings and trials. Challenges give you courage… courage to learn your strength. ..the strength to have faith. ..and faith to live hoping.” I didn’t quite understand her then, but I do now.

 Huntington’s disease is a genetic neurological illness that causes progressive deterioration of the physical, cognitive and emotional self.

 It leads to severe incapacitation and eventual death, years after the onset of the disease. It usually begins to affect adults between the ages of 30 to 50. Symptoms include uncontrollable movements, abnormal balance when walking, slurred speech, difficulty swallowing, thinking difficulties and personality changes. Each child of an affected parent has 50% chance of inheriting the HD gene, which is located on chromosome four. There is no cure and no effective treatments to reverse the effects, though caregivers are developing new approaches to care all the time.

 Those with Huntington’s disease are special people who need special care. It takes a lot of time, patience, courage and a heart to know, understand and accept them. As the disease progresses, it becomes difficult to see people’s feelings or emotions in their faces, as they can seem blank, as though wearing a mask. But their eyes speak for themselves and tell all. If we make time to give time, we see them smiling. If we look deeper, we sense courage and hope. We see braveness with which to face anxieties and fears. If we look with compassion and sensitivity, we understand life. That life is full of mysteries and great things to discover.

 Through their eyes we see the reflection of their life stories, memories of how their lives were lived, and we begin to accept how they feel. When they look back at us, it consumes our thoughts, our actions and emotions. Through their gaze we realise that we have lived with an extraordinary challenge, and they have shared that with us.

 Working in an environment for people with Huntington’s disease creates a sense of individuality in each staff member. The vastness of the role has allowed each person to find - his or her own sense of purpose. The effort has made each individual bind weaknesses into bonds of strength. Individual identities have united into a team, which comprises medical, nursing, dietetic and therapy staff, as well as volunteers and relatives. Everyone strives to meet the patient’s needs with respect, dignity and pride.

 Complicated tasks are often replaced by an emphasis on the simpler things in life and above all recognising the worth of each individual. This undertaking is remarkably tough. It takes courage, and faith strong enough to stand the test of time, as well as sympathy and patience to accept the philosophy that there is always hope, if not today, maybe tomorrow.

 Huntington’s disease controls the person’s mind - one that passes from one generation to the next - a cycle that can seem to have no end. It changes you slowly -affecting talking, and moving and thinking. Yet the haunting question can remain “WHY ME?” We struggle for the right answer. The challenge is enormous, and the question remains unanswered.

 Scientists continue on their journey of discovery, searching for a cure and treatment. As we celebrated the Huntington’s Disease Awareness Week, we had the chance to reflect and look through the eyes of these special individuals.

 Let us continue to see and re-live their lives with honour and understanding.

A life worth living….a chance worth taking... and a challenge worth taking in your extraordinary way!

Acknowledgement:                   Newsletter, Huntington’s Disease Association, England and Wales, Issue 65, November 2004.

Acknowledgement: Gateway – Australian Huntington’s Disease Association (NSW) Inc November/December 2004