By AVA TURNQUEST

Tribune Chief Reporter

aturnquest@tribunemedia.net

FOR some the progressive and irreversible loss of motor function is a bit more cataclysmic than spilt milk. However, that is exactly how Dr Wendy Stuart characterised the debilitating and incurable illness that has severely affected her independence and quality of life, Amyotrophic Lateral Sclerosis (ALS).

After struggling to independently support her treatment for years, Dr Stuart is about to lose her insurance coverage in a matter of weeks and loved ones are racing against the clock to raise funds to continue her constant medical care. She spoke to The Tribune from her Prospect Ridge home yesterday on the trials of living with a disease so rare that fewer than 20,000 cases are diagnosed each year in the United States.

“You know how they say you don’t pass anything until you die,” she said, speaking in short bursts, timed with her breathing to compensate for a tracheostomy tube in her neck.

Her arms and legs were pale and thin in the morning light that shone through the double windows facing her bed. She seemed small by comparison to her frame as her limbs lay still, giving no indication of the highly active lifestyle she enjoyed just six years ago.

“Right before I had this diagnosis, I had a physical and I was in perfect health. No cholesterol, no diabetes, no heart problems and then this happened. I thought I was living healthy by eating right and exercising and doing everything right and then this happens. So you don’t know, life is funny, it happens when you’re having a good time, life just happens.”

Dr Stuart, a successful dentist, entrepreneur, and mother of two, is the daughter of famous Bahamian singer Wendell Stuart. She was diagnosed with ALS in 2009.

“There are only two of us in Nassau with ALS right now, that I know of,” Dr Stuart said. “There may be a couple more in Grand Bahama. We keep in contact but it’s a struggle for both of us. We don’t have a support system and this disease is so rare, there is no treatment for it and no cure that it’s really hard on the families to support the patient.

“A support system would definitely help because we’re trying a lot of things. It would be nice to know who’s tried what, what works and how best to manage because right now it’s hit or miss.”

It’s a diagnosis that is still not completely clear, according to her 71-year-old mother Marjorie Stuart, who is her guardian and caregiver.

Mrs Stuart said: “We don’t know, they tell us it’s ALS now but I don’t know when the doctors decided that’s what it was. They seemed to have all been baffled. She went to the Cleveland Clinic (in the US) and they said it looks like ALS, but there is no definitive answer, so we’re still at it.

“There is nothing definite so she’s constantly on that machine (ventilator) since 2010.”

“In 2009 it started,” Mrs Stuart said, “she would walk outside and all of a sudden her knee would buckle and she would fall or she would walk into a food store and…she would fall down and it started like that. Then weakness in the arms. As a dentist, she uses her hands a lot and she began to feel weakness in the hand.”

Months before the diagnosis, Dr Stuart received the 2009 Developing Entrepreneur of the Year Award for her successful body-care business, Botani Bath at the Bahamas Chamber of Commerce’s 38th annual Awards Ball.

Dr Stuart said that while she’s considered writing a book, she has since shelved the idea due to logistical challenges. She has also abandoned a blog that she maintained in the early stages of her illness.

“It has been a gradual progression of slowly getting weaker,” Dr Stuart said, every so often stopping to pace herself as the steady hum and click of the ventilator droned on in the background. Her brown eyes were bright and clear, framed by high cheekbones with her natural hair braided and pulled into a high ponytail. While she spoke, a nurse sat at a small table near the window looking over charts and taking notes.

“It started with me falling down and not being able to write properly and then it just got worse,” she continued, “until now I can’t really move from my neck down and I need a ventilator to breathe.”

“That wasn’t as hard as coping with watching my children and not being able to be the mother that I wanted to be. The illness was secondary,” she said. “I just took it as it just happened. Nothing to mope about, no crying over spilt milk, but what was really hard for me was to watch my children and not be able to do for them like I wanted to.”

Dr Stuart’s boys, Whitney Thomas, 16, and Corey Maximus, 12, live with their father Larry Keith in the United States. Mr Keith moved to the US for work in 2009, the same year as her diagnosis, which disrupted plans for the family to relocate together.

“I have Bahamian insurance and it only covers here,” Dr Stuart said, “so I had to stay here, he (Mr Keith) moved for a job right when I got sick, I was planning to move, but I got sick.”

The boys moved in 2013 after her mother was unable to keep up with their care, with Mrs Stuart adding that the children needed a father figure.

Mrs Stuart said she moved Dr Stuart into her home late last year after it became too costly to maintain both residences.

“I need around the clock nursing care,” Dr Stuart explained, “and my insurance is up. They have been really good in supporting me for five years and now it’s up so I’m struggling trying to find ways to adjust.

“My mother is helping as much as she can because I don’t want to go in the hospital because I’m susceptible to a lot of diseases and I can easily get a lung infection because I’m on a ventilator and that could be detrimental.”

The majority of ALS patients die within five years of the onset of symptoms, according to the National Institute of Neurological Disorders and Stroke, however, it is estimated that some 10 per cent of patients survive for 10 or more years.

One example of such an exception is renowned English theoretical physicist Stephen Hawking, who was diagnosed in 1963 at the age of 21. At 73 years of age, Mr Hawking is an honorary fellow of the Royal Society of Arts, a lifetime member of the Pontifical Academy of Sciences, and a recipient of the highest US civilian award, the Presidential Medal of Freedom.

Dr Stuart is 49 years old.

“Well there is not much I can do like I used to,” Dr Stuart said, “I used to be very active, extremely active actually, but I just enjoy what I can whether it’s watching TV which I never used to like too much, but I try to find enjoyment in that, or talking to friends or just being in my thoughts.

“I just try to find peace everyday and find enjoyment in the little things, just watching the plants outside.

“I find enjoyment in the simple things of life,” she added, “I miss everything about my life but I try not to dwell on it.”

Despite the lack of a formal support system for patients with the disease, Dr Stuart said she was extremely grateful for her doctor Kevin Moss, her primary physician, and Cyprian Strachan, whom her mother referred to as an adopted brother. She also thanked members at St Gregory’s Anglican Church and New Providence Community Church, the Dental Council and the Dental Association, and her best friend Kathy Johnston, who has remained by her side for more than 15 years.

“She is the strongest woman that I’ve ever met,” Mrs Johnston said. “It’s been hard watching it but she has such a positive attitude. She gets down, but she’s so strong. I know that a lot of people could not have handled this the way Wendy has, her strength in character, faith in God, the will to see the boys grow up.

“It’s rough to watch the effect that it’s had on the family, the boys, her mom. They are a strong family with strong faith in God and that has had a lot to do with how they have been able to cope.”

Loved ones have organised a walk to raise funds for Dr Stuart’s medical expenses, “Walk to Wendy”, on April 25. The event will start at 7am at Goodman’s Bay Park and interested persons can register at Logos Book Store, the Prescription Parlour Pharmacy, and New Providence Community Centre.