Parkinson’s disease (PD). This is a disease we hardly hear of in Ghana but the truth is that there are people suffering from it. The focus on diseases that affect movement in Ghana has been on stroke.
But Head of the Neurology Department at the Korle Bu Teaching Hospital, Dr Albert Akpalu, says the disease is on the increase and although there are no statistics in Ghana, Parkinson’s disease is estimated to form 12 per cent of diseases seen at neurology clinics in Accra and eight per cent in Kumasi. There is a clinic in Sogakofe that sees PD patients.
For instance, records at the Neurology Clinic at the Korle Bu Teaching Hospital show that there have been more than 650 new patients since 2000.
Although the disease is associated with the elderly, Dr Akpalu says there are cases of young people between the ages of 25 and 45.
Initially PD was thought to be rare in Africa, but a paper on the disease in sub-Saharan Africa authored by Cilia et al notes that “Parkinson’s disease (PD) incidence is going to increase in sub-Saharan Africa countries as a consequence of a demographic transition.”
What is Parkinson’s disease?
PD is a progressing disorder (the condition gets worse over time) of the nervous system. Health experts say it begins slowly and sometimes the only visible symptom may be a slight tremor in just one hand. Often times, the disorder causes stiffness or slow movement.
The world celebrated PD day on April 11.
Signs and symptoms of PD are unique to the individual. It varies from person to person. At the onset of the disease, the signs and symptoms may be mild and may go unnoticed. The signs and symptoms include tremor which is one of the main signs. A tremor or shaking often in the hand or fingers even when it is at rest or relaxed; slow movement also known as bradykinesia, muscle stiffness, impaired posture and balance; decreased ability to perform unconscious movements, such as blinking, smiling or swinging the arms while walking, speech and writing problems.
Information available on the website of the National Institute of Neurological Disorders and Stroke says: “The four primary symptoms of PD are tremor or trembling in hands, arms, legs, jaw and face; rigidity or stiffness of the limbs and trunk; bradykinesia or slowness of movement and postural instability or impaired balance and coordination. As these symptoms become more pronounced, patients may have difficulty walking, talking or completing other simple tasks. PD usually affects people over the age of 60. Early symptoms of PD are subtle and occur gradually. In some people, the disease progresses more quickly than in others. As the disease progresses, the shaking or tremor, which affects the majority of people with PD, may begin to interfere with daily activities. Other symptoms may include depression and other emotional changes; difficulty in swallowing, chewing, speaking and urinary problems or constipation, as well as skin problems and sleep disruptions.”
Health experts say “in Parkinson's disease, certain nerve cells (neurons) in the brain gradually break down or die. Many of the symptoms are due to a loss of neurons that produce a chemical messenger in the brain called dopamine. When dopamine levels decrease, it causes abnormal brain activity, leading to signs of Parkinson's disease.”
Although the cause of PD is not known, genetic factors may contribute to the disease process. Scientists have discovered specific genetic mutations that can cause PD. Also, exposure to particular herbicides and pesticides may slightly increase the risk of developing PD later in life.
Dr Akpalu says it is important to know the cardinal symptoms of PD, since early treatment slows progression. Also, a locally available therapy of Mucuna pruriens (bean as a food supplement) is being explored as a safe alternative.
Fifteen years ago, Kojo was diagnosed with PD. He says the disease has really impacted on his life.
“I realise that there are so many things that I am not able to do anymore. I used to play the saxophone and guitar and now because the fingers are trembling I stopped. I used to be very active in music performance but now I perform in the background.”
However, he says he tries not to give up completely and continues to do music on a low key and teach kids how to play the keyboard.
One of the challenges with PD is the slowness of movement and this, according to Kojo, affected his work. He had problems with deadlines and because he was close to retirement, his employers were kind enough to allow him to stay on till he retired.
Kojo says his family has been very caring and supportive for which he is grateful to God.
One problem Kojo identified is the kind of look or reception people with PD receive in public when they begin to show some signs and symptoms of the disease such as the tremors and challenges with movement. That, he said, had prevented people with PD from going out and be seen. They stay at home and their conditions get worse.
Another challenge is the cost of medication. He indicated he has a drug bill of about ¢3,000 cedis every month. Due to this a number of people with PD do not make themselves available to be seen by a medical doctor and would rather resort to traditional means.
A carer of a PD patient, Naa, and Dr Akpalu share similar sentiments with Kojo. PD medications are expensive and are also not on the national health insurance scheme.
Their plea is for the scheme to be reviewed to take on board medicines for PD, since there are a lot of people suffering from the disease and are unable to access health care.
For her part, Naa, who has been taking care of her husband with PD, says it has not been easy doing so.
“Knowing someone who was active and suddenly saddled with this state is difficult to grasp. I find it difficult to accept what has happened. I always pray for more understanding into the condition; to exercise more patience and be more kind and gentle to him,” she said.
Physiotherapy and PD
Since PD has no cure, one of the activities to manage it is physiotherapy. A senior physiotherapist at the Korle Bu Teaching Hospital, Ms Mary Agoriwo, says everyone needs to be active and when it comes to diseases, exercise forms part of treatment.
For PD patients, she says the complications that come with the disease such as tight muscles, stiffness of joints, tremors and walking difficulties call for physiotherapy to guide the patient deal with his/her specific problem.
“The condition is unique to everyone so you have to address each patient’s specific needs. For instance, the rigidity or tightness of muscles demands exercises that relax them,” she added.
She says exercise for PD patients is very beneficial because it improves flexibility for mobility. The exercises, she noted, teach, among others, how to safely get in and out of bed or a chair and to improve daily activities such as using the restroom, taking a bath, feeding and dressing up.
The exercises build up stability, strength and coordination of the patient to prevent falls. Due to the rigidity, a patient’s breathing may be affected, so there are exercises to take care of cardiovascular endurance and walking as well.
Ms Agoriwo notes that there is a challenge with the number of therapists with some knowledge of managing the condition. She said one recommendation is for anyone suffering from PD to have physiotherapy by a physiotherapist who has PD specific knowledge because of the complexity of the disease.
However, currently in Ghana, there are only two therapists who have had training in managing PD and they are based in Korle Bu. Due to this, the therapists are over-burdened with work and it also takes a long time for patients to meet the therapists which is not the best. Also, due to the slow movement of patients, it takes a long time (about two hours for a continuing patient) to have a physiotherapy session.
Dr Akpalu says there is a PD in Africa project which is supplying medication and training staff nurses, physiotherapists and psychologists in conjunction with Parkinson’s Disease Institute in Milan.
PD Support Group in Ghana
This group was formed in June 2016. It is a self-managed friendly group of people living with PD, caregivers/partners, health professionals and volunteers. The group provides a platform for PD patients to, among others, meet and share their experiences, interact with health professionals and encourage mutual support and self-help.
The group also seeks legitimate support from appropriate sources for group members.