A 45-year-old British expat who once enjoyed an active life on the Costa del Sol has had her life shattered by the devastating muscle disorder motor neuron disease (MND). Prior to 2014, Della Hall, who has lived in Benalmádena for 25 years, had run her own business and brought up two daughters with her husband Simon, but the last few years have seen them struggle to cope with a disease that currently has no cure.
MND is an umbrella term for a number of conditions caused by the degeneration of motor neurons, the nerve cells responsible for carrying electrical instructions from the brain through the spinal cord to the muscles. When this happens, the muscles become weak and waste away, affecting movement, speech and breathing.
Della, who must now use a wheelchair and relies on the constant support of her husband, was diagnosed in 2017, but she had been experiencing the symptoms for more than two years.
An uncommon condition
MND is an uncommon condition and no two cases are the same. Symptoms - which may include weakness in the ankles or legs, muscle cramps, trouble swallowing and slurred speech - come on gradually and may not be obvious at first. It is nearly always fatal and will significantly shorten life expectancy, but some people live with the condition for many years.
"There are four types of MND. They all end the same way but all start differently. I have limb-onset, which affects my lower legs. The problem is that we don't know when or why it started and, because it is a relatively unknown disease, it took the doctors more than two years to diagnose the problem," Della explains to SUR in English.
Della first realised that something was wrong in 2014, when she went on a girls' weekend to Mallorca in order to celebrate her 40th birthday. She was queuing to get into a nightclub when her ankle suddenly gave way and she collapsed. She sought medical help on returning to Malaga and doctors soon discovered that she had a B12 deficiency, so they started her on a course of injections.
"It was really strange, because I was on a girlie weekend away and suddenly collapsed for no reason. I didn't trip; I wasn't drunk; I just fell over. After that, I just kept falling over all the time and so we just assumed it was the B12 deficiency," she says.
Della was having the B12 injections every two weeks and this gave her energy, but it did not solve the problem with her ankle, which had started to become extremely painful. She saw 11 doctors and specialists before eventually being sent to see a neurologist, who diagnosed her condition after administering an electromyography (EMG), a test that measures muscle response or electrical activity in response to a nerve's stimulation of the muscle.
Della is now taking IBILF, a drug that is generally used to treat asthma patients. She needed the aid of a BiPap ventilator to help her sleep because she had high CO2 levels and her breathing was deteriorating.
"Three months after taking IBILF my CO2 levels were back to normal and it is definitely because of this drug. I still use the machine to help me sleep, but I am not as dependent on it as I was before," she points out.
There is no cure for MND and the medicines that Della uses simply slow down progression and help to prolong her life. The family home has been adapted with ramps and widened doorways to allow easy access, but the couple's main concern is that Della's condition does not have an effect on their two teenage daughters.
"We act normally at home and we don't really let the children see any different. I would say they are quite at ease with the situation," she says.
Della visits Cudeca twice a week for physiotherapy sessions and these have had a positive effect. After just one week of therapy, Della's pain had stopped, and she has nothing but praise for the "compassionate, friendly staff" who are "just amazing".
She is now in contact with others who suffer from MND and uses several social media platforms to keep up with the latest medicines and treatments.
"I have friends all over the world. I have an amazing group of people who research every new drug that becomes available. If something new comes along, they source it and we guinea pig it," Della says smiling.
Della is hopeful that a new treatment currently being tested in the USA will become available soon. Tests have proved positive and have reversed the symptoms in several cases. The trials for the drug end in July 2020, but she is keeping an open mind for now. She is a fighter and believes that a positive mind is paramount.
"I always tell my neurologist not to doom and gloom me. I am positive so they need to be positive with me. If they haven't got anything positive to say, I don't want to listen. I have difficult periods, but when that happens, we just find a way around the problem and continue," Della concludes.