Imagine losing control of your physical and psychological faculties, even your ability to swallow, while having full mental awareness of what is happening and witnessing complete changes in your personality.
For the past 15 years this has been the experience of the members of the Aqui family who have been diagnosed with Huntington’s Disease (HD).
Former principal of Holy Name Convent, Port of Spain, Wendy Aqui told Sunday Newsday her husband was diagnosed at age 40, and her two adult daughters, both now in their 30s, were diagnosed shortly after. Aqui describes the disease as a combination of Alzheimer’s and Parkinson’s – but her experience reveals it to be much more.
Huntington’s disease is an inherited disorder that causes nerve cells in one part of the brain to gradually break down and eventually die. The symptoms include:
Difficulty concentrating
Memory lapses
Depression
Poor co-ordination and motor skills
Tripping and physical instability
Mood swings, aggression and irritability
The Aqui family emerged as an unintentional advocate for HD in Trinidad and Tobago, when in 2020 their situation was highlighted in the media. Aqui said her focus now is on raising awareness that could lead to action and support for others in the local HD community.
Notwithstanding the obvious challenges she faces as the primary caregiver for her husband and daughters, she redirected the spotlight away from herself to the HD patients and their families who exist in the shadows, facing what feels like insurmountable challenges.
“From having a family with Huntington’s Disease, you realise that people misunderstand them and if persons are not diagnosed early, they can lose their jobs,” among so many other losses.
Often, job losses may not be on medical grounds, but due to the HD symptoms like personality changes.
“It becomes very hard to reason with them (HD patients), and some arguments become impossible to settle, as they can become irrational. They are affected emotionally and psychologically. It’s very complicated.”
A holistic approach is required to address HD, and Aqui believes HD patients, or those suspected of being carriers, should be afforded therapy and psychological guidance both before and after testing. She said the anxiety associated with knowing that you may test positive for a disease as debilitating as HD, for which there is no cure, puts tremendous pressure on both patients and caregivers.
“Not knowing is one problem, and knowing is another.”
The unavailability of data on the numbers of people with HD has made it difficult to organise and mount a formal lobby to seek governmental and other support locally. As a result, she said, most families have not been able to manage their lives properly in any meaningful way, as neither insurance coverage, nor government initiatives such as disability grants are available to HD patients, owing to very specific requirements which must be satisfied.
