Hard realities of Huntington’s Disease

By Lara Pickford-Gordon

snrwriter.camsel@catholictt.org

For about 30 to 40 families, possibly many more across Trinidad and Tobago, living with Huntington’s Disease (HD) means carrying an emotional, physical, and financial burden. Yet, through shared experience, encouragement and practical help, they are finding ways to support one another through a difficult journey.

Wendy Aqui, a spokesperson for the group, spoke with The Catholic News about the realities families face and their effort to bring relief, awareness and dignity to people living with the condition.

One of the hardest realities, Aqui said, is that some families do not realise what they are facing until the disease has already taken a devastating toll. “Huntington is often misdiagnosed as so little is clearly known in Trinidad and Tobago’s medical community,” she said.

Aqui recalled one family of eight in which five members developed symptoms and died before relatives understood Huntington’s was the cause. The inherited disorder causes nerve cells in parts of the brain to gradually break down and die.

“It’s a very complicated illness and it takes a lot out of you in terms of managing and finding the best solution to everyday problems,” Aqui said.

Aqui said changes can begin long before visible symptoms, such as imbalance and falls appear. Early signs may include mood changes, poor judgement, and other cognitive effects. “Things are already taking place, so you will find mood changes, bad decision making where the cognitive skills are affected and so on,” she said.

Due to Huntington’s being predominantly a genetic disorder, the child of a parent with the disease has a 50 per cent chance of inheriting it. Aqui said her husband Gary began showing mild symptoms at age 45.

The disease can present in many ways, including chorea—sudden, involuntary jerking movements affecting the limbs, face and trunk—as well as anxiety, suicidal thoughts, mood changes, aggressive behaviour, swallowing difficulty, stiffness and speech impairment.

“The unfortunate thing about the illness, too, is that the brain works after they can’t respond, after they can’t communicate… they are hungry all the time because of the involuntary movements,” she said.

Meals often have to be specially prepared because swallowing difficulties can increase the risk of aspiration (accidental inhalation of food and liquids into the airway and lungs).

When her daughter, Krystal, began noticing twitching in her legs, the family decided in 2018 to get tested. Of the five people in the household, Aqui said she was the only one who did not have Huntington’s.

That experience pushed the family to raise awareness and reach out to others who had also been diagnosed. “We have done things like printed cards with three telephone numbers and left them in clinics and hospitals so that when doctors meet Huntington’s patients, they will put them on to us,” Aqui said. From that effort, a support group was formed. She described the toll of the disease as “horrible”, speaking from the pain of watching the changes over a decade in her daughters, architect Kristal, now 42, and accountant Jaime-Lynn, 40.

Families are also seeking state help with medication. Aqui said tetrabenazine, used to reduce chorea in some patients, can be prohibitively expensive. “One guy in Trinidad is selling it at $30 a tablet and you have to buy 100, and that may carry you for a month and a half,” she said. She added that another medication once cost her family $1,000 for a three-day supply.

The group recently learned of a generic version of tetrabenazine is available in Grenada for EC$1.35 per tablet, and Aqui would like to have it made available locally. This drug has worked for some patients, but she took her daughter off it after 18 months because of severe side effects.

“Most medications have side effects that are very bad, and the side effects are as bad as the symptoms,” she said. Many recommended medications, she added, are not dispensed in hospital clinics, “especially if it’s expensive”.

Testing is another major expense. Aqui said an HD test can cost between US$650 and US$750, with payment required upfront in US currency because samples must be sent abroad.

Aqui also stressed the need to support caregivers. She pointed to one woman in her eighties caring alone for a husband who developed symptoms late in life. The support group, she said, is trying to rally around her and others in similar situations.

Aqui said another gap is access to the state-sponsored Geriatric Adolescent Partnership Programme (GAPP), which provides care and companionship to the elderly.

She cited the case of a woman in her 30s who lives alone and is already showing imbalance and mood changes. “We realise she cannot cook for herself; she can’t do anything. It is the neighbours who are helping her. In a case like that, she needs a GAPP nurse, but they will not provide because she is not over 60,” Aqui said.

In her own home, a caregiver is available only for a limited time. She takes care of her family for 18 hours daily.

People with Huntington’s are treated by neurologists and psychiatrists, but Aqui believes a more collaborative approach would better serve patients, especially when medication must be adjusted. Her advocacy is deeply personal. Aqui’s husband, Gary, died March 31 at the age of 68 years. He lived with Huntington’s for 24 years, 13 of them he was immobile. She said he fought a good fight.

For Aqui, faith has been central to endurance. She is a parishioner at the Church of the Nativity, Diego Martin, and guitarist with the Sunday 7 a.m. choir. “People tell me, ‘Where do you get the strength?’ and I keep saying, ‘God’. If you are not spiritually strong this disease can knock you for six.” she said.

Wendy Aqui can be contacted at 463-3419

Email:  wendyaqui57@gmail.com

or

Wendy Gomez Email:

wendyseniorgomezslp@gmail.com