The Person Behind the Disease: Parkinson’s Disease

Imagine being in a room alone, having sat, wheelchair bound, for hours, without a bathroom break or a meal. It’s a painful scenario, but one very true to many inEthiopia. It’s a scenario that is played in so many of the low-income homes across our city, and with very little recognition of it’s existence as a prevalent threat to our society, and to our economy as well. There are thousands of people living with the disease in Ethiopia but with no real outreach program for the support they need. Parkinson’s disease is malicious in its manifestations of its symptoms in a patient. The challenges that the individual has to undertake and that the effects the disease has on the immediate family, is not an easy task. It is one that requires commitment to the therapies and medications that are available. A commitment to getting professional trainings on how to ease the tasks that ultimately become difficult to achieve, and a commitment to maintaining a positive attitude. AWiB’s 2018 Woman of Excellence recipient Mrs. KibraKebede has managed to look past her disease and has committed herself to bringing awareness to the disease to give as much back to others in her same condition. She see’s beyond the disease and remembers to focus on the person behind the disease instead.

What is Parkinson’s disease?

Parkinson’s disease (PD) is a degenerative disorder of the central nervous system both chronic and progressive in that it persists over a long period of time and it’s symptoms become worse over time. Right after Alzheimer’s disease, PD is stated to be the second most common age-related neurodegenerative disorder with an estimate of 10 million people affected worldwide, although, that figure is not exact due to many factors. PD has been researched worldwide but not enough statistical figures, facts and information exists for the disease occurrence in Africa. People with the diseasemay begin to notice problems with stiffness in their limbs or the trunk of their bodies, problems with their movement, tremors and impaired balance; all when particular nerve cells in the brain begin to weaken or die. Through time as the symptoms persist, people may find it difficult to walk, talk, or complete simple tasks, although theses symptoms are not pertinent to Parkinson’s alone.

Symptoms arise as a result of the loss of neurons (nerve cells) found near the base of the brain, which produces an important brain chemical known as dopamine. Dopamine is responsible for producing purposeful and smooth movement in people. Studies show that people with PD have lost 60 to 80 percent or even more of these dopamine-producing cells. Scientist have identified several genetic mutations to be associated with PD, exposure to certain toxins such as those miners are exposed to, and abnormalities in the mitochondria, which are the energy-producing components of cells.

Attaining an exact figure of the actual cases of PD continues to be a problem for researchers and scientist to this day, as the disease’s symptoms are more often associated with those of normal aging and many do not seek medical attention early enough; even medical professionals face challenges with giving such a diagnosis because PD does not have a definite test as such. One definite risk factor for PD is age, with an average onset of the disease being 60 years of age and a 5 to 10 percent chance for early onset at 50 years of age; 15 to 20 percent of people with PD have a known relative with the disease. In very rare cases does the disease appear in individuals before the age of 20 with symptoms usually able to improve with the use of medication.

In addition to Parkinson’s disease being a medical and health problem, it is also a social and an economical problem as well, in that it places the patient under full dependency of their family or caretakers, further impoverishing already low income families affected by PD. PD is also associated with psychiatric and cognitive disturbances that include anxiety, psychotic symptoms and depression. These manifested symptoms have great effects on the course of the disease for each individual and the medical management taken for each.

What are the symptoms of Parkinson’s disease?

Tremors, rigidity, bradykinesia and postural instability are the four main symptoms of PD. Characteristically the tremor associated with PD takes the form of a back-and-forth rhythmic motion. The rigidity aspect, causes certain muscles to remain constantly contracted and tense, making the individual feel stiff and causing aches. Bradykinesia is the slowing of spontaneous and automatic movements, which make it particularly frustrating to the individual because it makes the simplest of tasks very difficult. Postural instability is impaired balance and it is what causes individuals to easily fall.

Early signs of PD can happen slowly and may be too subtle to recognize. Friends and family members may be the first to notice that the individual lacks their normal facial expression and animation and is moving slower than usual. Affected individuals may begin to feel mild tremors; their speech might become softer and slower. As the disease continues to progress, daily activities become more difficult to achieve as once used to. On top of these primary symptoms, PD is also accompanied by other symptoms, some of which can be treated through physical therapy and the use of medication. These symptoms includes difficulty with chewing and swallowing, constipation and urinary issues, sleeping problems, sudden drop in blood pressure, muscle cramps, skin problems, loss of energy, fatigue, changes in speech, emotional changes, and pain.

How is Parkinson’s disease diagnosed?

Currently diagnosis is based on medical history and neurological examination as no laboratory or blood test yet exists that can detect PD. Unfortunately many doctors are challenged with diagnosing PD because many of the early symptoms are dismissed as normal effects of aging. Generally the life expectancy of an individual with PD is the same for those without the disease, but unfortunately during the later stages of PD medications no longer function as effectively and may cause serious complications.

Due to the progressive nature of PD, it is impossible to foretell the direction, which the disease will take for every individual, as each is unique. Neurologist have come up with a standard scale called the Hoehn and Yahr scale, that helps them describe how the symptoms have progressed in an individual.

Stage One – symptoms are apparent on one side of the body only

Stage Two – both sides of the body are affected but no impairment of balance yet

Stage Three – physically independent and balance impairment

Stage Four – severe disability but still able to stand or walk unassisted

Stage Five–wheel-chair bound or bedridden unless assisted

Parkinson’s disease proves to be a very difficult disease to predict or prevent and so researchers have opted to look for what they call a biomarker; a biological abnormality that all persons with PD may share in common and that could be in turn detected by different screening techniques or simple chemical tests. Researchers hope that this can help them identify people with high risk of getting the disease and hopefully help to find treatments that can possibly stop the disease in its early stages. Since a lot of PD’s symptoms are potentially caused by these early stages, gaining extra insight with this biomarker technique, and the many new researches being launched towards this disease, might be the key to helping individuals better cope with the symptoms or even possibly fully treating the symptoms in totality.

Coping with Parkinson’s disease

The changes associated with individuals affected with Parkinson’s disease can be difficult to cope with and hard to accept for the affected themselves and the external family and friends as well. Not only does it affect the individual’s quality of life, it worsens the individual’s and the family’s financial condition as well. It has been estimated that in Ethiopia, the prevalence of “pain” in PD patients is undertreated, unrecognized and amongst the highest in the world. Another small group study on the prevalence of “depression” on PD patients here in Ethiopia proved that over 50% of PD patients are on anti-depression medication.

Daily routines begin to be affected such as basic self-care, homecare and even socializing with people. One of the best ways of helping affected individuals and friends of families of individuals with the disease are support groups. Fortunately for Ethiopia we have Parkinson Patients Support Organization – Ethiopia founded by our very own 2018 Woman of Excellence recipient Mrs. KibraKebede.

Parkinson Patients Support Organization – Ethiopia (PPSO-E)

A non-profit organization created to spread the awareness of Parkinson’s disease and to

provide a center for support and informational aid to those affected and dealing with the disease in their personal circles. This organization’s motto is “serving to rejuvenate hope” and relentlessly pushing for the recognition of the disease at large with their slogan “we exist too”. Their main aim is to help patients living with the disease gain different therapeutic measures that can help ease their conditions. And to help family members understand the disease and how to better cope with the challenges it brings upon the household. The organization goes from hospital to hospital searching for patients with the symptoms and working closely with doctors to detect and diagnose the disease. They also go from household to household of known PD affected individuals and help them with basic aid and relaying information as to how to use the many therapeutic and medicinal options that are available to PD patients.

Established in May 2011, PPSO-E stands as the only organization founded in Ethiopia and the second in Africa, with the aim to cater to the unmet needs of PD patients. With the help of funding from their international partners, specifically a German association called Bread for the World, they are able to provide limited medication and funds needed for dire cases of PD patients. Unfortunately no statistical data or sufficient enough information about the disease and its prevalence in Ethiopia exists for adequate awareness reach to the Ethiopian public. In addition to the lack of information on the disease, there is the stigma that is also associated with the disease’s symptoms forcing many to hide and not seek medical attention, especially early enough. PPSO-E is currently working with their German partner to build a large support center specific to needs of PD patients and their families and caretakers.

PPSO-E’s Acting Director, says the most challenging factor they face as an association is the lack of enough understanding of the disease’s prevalence in the country. Although through the years that PPSO-E has been established, there is better awareness, unfortunately it is not enough to manage and handle the population’s actual needs. She says the association works closely with government health offices and medical professionals to promote the awareness of the disease.And to gather necessary data that the country, at large, needs in order to understand the importance of the disease’s recognition as a top priority. She says that specific policies should be mandated to the care of Parkinson’s infected individuals and the affected family members; as it touches on the economical aspect of the country in general. Without these statistical data, gaining funding and donor aid on a global level is extremely challenging. As far as the sustainability of the association goes, she says that the aim is to eventually hand over the association to the government and work towards opening liaison offices in major cities outside of Addis.

PPSO-E’s Project Assistant, says he has seen a lot of improvement in the patients that he has directly selected going from hospital to hospital and brought back to the association. He works with medical officials to look out for the warning signs of early onset of PD and also those that have progressed symptoms already. He gives training to the medical staff to be able to provide basic therapy, speech and physical, all depending on the individual’s case to help ease the discomfort and pain, both on the mental and physical aspect. He is saddened with the fact that the government has not placed enough priority on the matter of Parkinson’s and feels that it should be reviewed again as a country at large. One of the most rewarding aspects of his position at PPSO-E is to see the actual progress in the patients that take the therapy and the family members actual sense of relief that there is information and a support system in place to help them cope with their condition. Since being at PPSO-E, he has personally overseen the building of 18 toilets for patients that did not have proper facilities in their homes; this, he says has brought immense change in the patients lives and ease of using the bathroom.

PPSO-E’s Patient-Care Nurse, has worked there a little over two years and has seen tremendous change in the patients she works with daily. She is in charge of going from home to home to talk with patients and helps them with basic activities such as handing them their lunch or helping them go to the bathroom. She says the most challenging part of her job is to see the conditions in which many of the patients are left to live in due to the lack of extra help and care. She has witnessed patients that have had to sit all day long, wheel-chair bound, waiting on their children or a family member to arrive after a day’s work to hand them their plate of food and then physically help them go to the bathroom. It is agonizing work to know that so many of these patients exists without sufficient help to aid them in basic daily activities, most of which stems from the financial restrain many of the low-income individuals face. But she is filled with gratification when she sees patient’s face light up as she comes to visit them, because she says, just visiting them and acknowledging their presence means a lot to many who are already dealing with depression and anxiety manifested through the disease.

The biggest challenge PPSO-E faced, and still faces to a certain extent, is the recognition and awareness of the disease. Mrs. Kebede, also a Parkinson’s disease patient herself,relentlessly works towards promoting the awareness of the disease and continues to bring hope to the Ethiopian community of individuals affected by the disease. An annual walk has even been created on the 11th of April to spread the awareness of PD. The country has a long way to go to understand what the disease is and what the symptoms associated with it are. PPSO-E’s goal is to change the perception the disease has and to raise awareness to the public and health facilities in the country to recognize the symptoms early enough and provide primary care before symptoms get worse. Sadly, many people, to this day, in the country attribute the disease and its symptoms to a nerve problem, sometimes ignorantly blaming alcoholism and superstitiously considering it to be of “bad spirits” too. Changing the mind-set of the people in the country is the first true challenge and the next is gaining enough numerical data on the disease’s affect on the populace

References

Parkinson’s Disease: Hope Through Research. Office of Communications and Public Liaison National Institute of Neurological Disorders and Stroke, National Institutes of Health
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Parkinsons-Disease-Hope-Through-Research

Parkinson’s News Today

Okubadejo N.U.,Bower J.H., Rocca W.A., and Maraganore D.M. Parkinson’s disease in Africa: A systematic review of epidemiologic and genetic studies.

Parkinson Patients Support Organization – Ethiopia

http://parkinsonsethiopia.org/ethiopian-context/

Jama O.H., Yared M.Y., Guta Z.M., and James H.B. Prevalence of pain in patients with Parkinson’s disease in Addis Ababa, Ethiopia

https://www.sciencedirect.com/science/article/pii/S1353802018304267

Dawit K.W., Yared M.Y., Douglas G.P., and Fikre E.G. Prevalence of depression in Parkinson’s disease patients in Ethiopia

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4711030/

Helen Asfaw. (2014). The Psychological and Economic Impact of Parkinson’s Disease on People Infected and Affected by the Disease. Addis Ababa University, School of Social Work.

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