Parkinson’s: coping with progressive weakening

The holy, the powerful and the famous have had it. To name just a few, boxing legend Muhammad Ali, singer Johnny Cash, politician George Wallace, evangelist Billy Graham, and Pope John Paul II.

Parkinson’s disease is one of the most common nervous system disorders and while it affects both men and women, it’s more common in men. Its cause is still a mystery, which means doctors can’t accurately predict who will develop it and who won’t.

The disease is all too often seen as a death sentence, but developments in modern medicine have made it a much more manageable condition. The degenerative disorder affects some 1,200 people in Malta and around 6.3 million worldwide, according to the Malta Parkinson’s Disease Association. 

65-year-old pensioner and association member Carmel Sammut said that although the disease had been very hard for him to accept, he had insisted on living as normal a life as possible.

“When I was diagnosed with the disease over 12 years ago at 54, after suffering stiffness and slow movement, I initially refused to eat for about three days and felt very depressed,” he said, recalling the way the disease had transformed even his most ordinary, every day activities into challenges. 

“I began to have difficulty even buttoning my shirt, and I needed assistance to shower, get dressed, and even get into bed, but I continued to work well after the diagnosis.”

Consultant geriatrician Peter Ferry described Parkinson’s disease as a progressive neurological disease that affects movement, with symptoms including tremor, rigidity, slow movements and postural instability. 

“The disease is not restricted to mobility symptoms. There are also the so-called non-motor symptoms which include sleep disturbances, constipation, weight loss or gain, vision and dental problems, fatigue and loss of energy, depression, anxiety, skin problems, and even dementia in some cases,” Ferry added.

Sammut told MaltaToday that he had been a physics teacher when he was diagnosed, but he even went on to become a head of department and ultimately an education officer for non-state schools, despite his condition. 

“I continued with my job as before, even attending prize days at times, although I had a constant fear of the stiffness the disease sometimes caused,” he said, adding that for that reason he often had to cut relaxing walks short. 

Sammut admitted that as he was still coming to terms with the condition, he used to try and avoid getting into the public eye.

“I used to sit at the back of the church as I was shy to limp along owing to my stiffness,” he said, explaining that his first symptom was a pain in his shoulder. 

“I also noticed that while walking, my left hand did not swing like my right one and later I found it difficult to make fine movements,” he added.

Sammut said that the physiotherapy sessions he used to take were helpful in allowing him to live a relatively normal life.

“Medication helps, too,” he added, “but there always seemed to be a possibility of negative side effects.

“I was started on a combination of drugs which included Pergolide, but following a discovery that it could damage the heart valve, I was prescribed a different medication which has many dangerous known side effects, such as sudden drowsiness, even possibly while driving.”

Sammut explained that the medications had to be taken several times a day but that they helped since they decreased stiffness periods substantially.  

“Luckily, all the medications were covered by the government, but a few years ago my neurologist suggested I take a slow release version of my medication, which had to be ingested fewer times during the day, but I had to buy these out of my own pocket, which cost me a good  €161 per pack, for 42 days,” he said.

Although the medications and therapy had been effective, Sammut said that the great leap in his quality of life came last July when he had Deep Brain Stimulation. 

“The surgery was performed by surgeon Ludvic Zrinzo, who lives and works in London, and although it didn’t cure the disease, it proved to make a huge difference in the way I live,” Sammut said, adding that the last four years prior to the operation proved to be some of the hardest.

“Eating was becoming more difficult, as using a spoon, fork or knife was increasingly becoming a problem. I also began having trouble rolling over or changing position in bed for instance, so that a really good sleep was near impossible,” Sammut explained. 

Sammut also said that enrolling in the Malta Parkinson’s Disease Association was one of the most encouraging things people with the condition could do.

“You can share experiences, hear informative talks and take part in activities organised by the MPDA and socialise with fellow patients,” Sammut said.

Dr Ferry said that there are many medications available to treat the symptoms of Parkinson’s, although none yet that actually reverse the effects of the disease.  

“The best known drug therapy for Parkinson’s disease is levodopa, which is a dopamine precursor but there are some drugs that are sometimes prescribed that can actually make the disease worse,” he said, explaining that some of these drugs block the effect of dopamine, a medication typically used to treat blood circulation problems.

Ferry added that the progression of Parkinson’s disease varies among different individuals. 

“Parkinson’s is chronic and slowly progressive, meaning that symptoms continue and worsen over a period of years, but it is not considered a fatal disease,” he explained adding that its causes had remained unknown. 

“Many experts think that the disease is caused by a combination of genetic and environmental factors, which may vary from person to person. In some people, genetic factors may play a role in making them more vulnerable to the condition, in others however, illness, an environmental toxin or another event may contribute to the disease developing.”

Ferry also argued that scientists have identified ageing as an important risk factor with a 2-4% risk for Parkinson’s among people aged over 60, compared with 1-2% in the general population.

Malta Parkinson’s Disease Association

The MPDA was founded in 2008 as the first association in Malta to provide support for persons living with Parkinson’s Disease (PD) along with their families. The association also holds monthly meetings to provide time for members to discuss anything they wish as well as listen to an interesting topic by one of the speakers on the day. 

www.maltaparkinsons.com

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