Sheikh Juma describes fighting the ‘bully’ of Parkinson’s
Father of five from Dubai’s ruling family urges sufferers to seek help
A member of Dubai’s ruling family has spoken about living with Parkinson’s disease.
Sheikh Juma Thani bin Juma Al Maktoum told The National about his battle with the condition, a progressive nervous system disorder that affects the body’s movement.
The 48-year-old father of five had Parkinson’s diagnosed three years ago at Cleveland Clinic Abu Dhabi.
“Parkinson’s is like a bully. Either you control him or he will control you,” he said.
After treatment, medication and support from specialists, his condition – for which there is no known cure – has stabilised.
“I didn’t know him, that sensation of not knowing what is going on in your system is horrible but now he is here and a part of the family – and I am in control,” Sheikh Juma said.
His symptoms began with a barely noticeable tremor in one hand.
“I said it was normal because I do a lot of jet-skiing and fishing, so I use my right arm a lot. I thought it was weakness, but it gradually increased,” he said.
Over time, Sheikh Juma developed difficulty with walking and tying his shoes. Later, he felt “anchored to the ground” at times and unable to move.
This is experienced by patients when nerve cells in the brain gradually break down and messages are not properly received around the body.
Sheikh Juma said his condition led to anxiety and anger.
“I didn’t know about Parkinson’s,” he said.
“I had difficulty in walking. I had difficulty to put on my shoes. I was anchored. I was in a still motion. I didn’t know what was going on with my body.”
He was referred to Cleveland Clinic Abu Dhabi’s Neurological Institute, where doctors diagnosed his condition.
Sheikh Juma, who is head of the land valuation committee at Dubai Land Department, spoke frankly about the illness.
“I went through two phases. Phase one is the bully and phase two is dealing with the bully and him becoming a member of the family,” he says. “You have to accept it.
“I am diagnosed with a bully before I knew what it was and then I was trained to deal with Parkinson’s.”
Sheikh Juma also opens up about feelings of isolation, depression and confusion.
“I missed people. I had missed being around people so much,” he said of rebuilding his confidence. Now, he hopes to spread awareness about the condition.
There are no publicly available figures about how many people in the UAE have Parkinson’s.
Cleveland Clinic’s Neurological Institute sees about 800 patients, mostly Emiratis.
Worldwide, it is estimated that between seven to 10 million people have Parkinson’s.
The prevalence of the disease ranges from 41 people out of every 100,000 in the fourth decade of life, to more than 1,900 people out of every 100,000 among those who are 80 and older.
Sheikh Juma took part in a Cleveland-organised Ramadan night run this month, where almost 500 people put their best foot forward to raise awareness about the disease.
He said anyone with tremors or movement problems should see a doctor to ensure there is no delay in treatment.
“Please, please, please go to Cleveland or any hospital,” Sheikh Juma said.
“The minute Parkinson’s pushes you in this dark endless pit, seek help.”
Sheikh Juma’s doctor, Shivam Mittal, is a consultant neurologist and head of the Parkinson’s disease and movement disorders unit at Cleveland Clinic.
“Parkinson’s disease is a neurological condition,” he said. “And it’s one of the fastest-growing neurodegenerative conditions globally.
“It is a condition where usually it affects elderly people who are above 50 years. Prevalence is increasing every year and it’s a condition that affects men more than women.”
Treatments include everything from diet, exercise and speech therapy, to drugs that can prevent tremors.
“There is no cure but there is very good treatment,” Dr Mittal said.