Crippling illness leaves Manchester woman struggling

After living for more than 10 years with a neurological condition that has left her struggling to walk and care for herself, 60-year-old Minnette Powell says her greatest fear is being placed in an infirmary.

"Mi nuh wah leave mi cat dem ... mi nuh want leave mi animal dem," she said, tears streaming down her face.

For Powell, who lives in Robins Hall, Manchester, her small home represents safety, familiarity and independence, the few comforts she has. Powell was diagnosed with Human T-cell Lymphotropic Virus Type 1 (HTLV-1)-associated myelopathy, also known as tropical spastic paraparesis. The HTLV-1 infection exists in several Caribbean countries and, in some cases, can lead to neurological complications that affect the spinal cord and the ability to walk.

"The lower body, my central nerve is damaged," she explained. "I have stiffness in my lower body going down to my legs and sometimes my feet swell. I also have bladder incontinency sometimes." Powell said the symptoms appeared suddenly.

"Before I was diagnosed, mi find mi body weakish, weakish and mi find say mi can't walk as how me usually walk by myself, so mi go to the doctor," she recalled. After blood tests confirmed the illness, life gradually began to change.

"I usually was a domestic household helper and would do my farming but, because of the illness, I am unable to do it."

Now, much of her movement is confined to the inside of her home.

"Mi have one walker inside the house. Mi move around my section but I can't go outside because the yard nuh level," she said. "Sometimes when is me alone here and mi just feel a sharp pain in my leg, it will throw mi off balance."

CHALLENGES

Cooking, once routine, now requires careful effort, and some days she struggles to even get out of bed. The illness has also created other challenges.

"The sickness cause me to have scalp issues and fungus in my hair, so mi normally have to shave my head," she said. "But, from last year July, mi nuh able to go pan the road fi it shave." Living on a hill has also made travel difficult.

"It take a lot for them to carry me and nuh money nuh deh fi pay taxi," Powell lamented.

General practitioner Jeremiah Augustus explained that HTLV-1 is a virus that affects the T-lymphocytes, which are part of the immune system.

"Over time, it can cause inflammation in parts of the spinal cord, particularly in the thoracic region, and that interferes with the signals from the brain to the legs," he told THE STAR. "It's a progressive chronic disease. Unfortunately, it is not curable."

Augustus noted that the body's immune response can sometimes worsen the condition.

"The immune system attacks the virus, but some cells in the spinal cord resemble the virus, so the body ends up attacking those cells as well," he said.

Augustus said treatment focuses on managing symptoms and slowing progression, noting that medications such as steroids and other immune-modulating treatments may be used when patients experience flare-ups. He added that patients with the condition should be closely monitored by specialists.

Despite the physical challenges, Powell is adamant that she does not want to go to an infirmary.

"Mi always hear all kind of issues with people in the homes," she said. Her animals and familiar surroundings, she said, provide comfort on difficult days.

According to Jean Lowrie-Chin, founder-CEO of the Caribbean Community of Retired Persons, many elderly individuals feel the same way.

"The most beneficial place for people who are ageing to be is in their home, in a familiar environment, and ideally to get caregiving services at home," she said. Lowrie-Chin noted that several in-home caregiving services now operate in Jamaica, offering assistance with daily tasks such as bathing and meal preparation. However, she acknowledged that families often face difficult decisions when balancing a loved one's safety with their desire to remain independent.

"It is a very difficult decision because families could get very nervous about leaving their loved ones on their own," she said.