Having Parkinson’s and Tips for Coping Daily

Having a disability, such as Parkinson’s disease, in the workplace can prove to be very challenging. This degenerative disease affects the motor system, resulting in tremors, rigidity, bradykinesia (slowness of movement), instability and fatigue. The number of individuals with disabilities and chronic diseases in the workforce is increasing due to longer life expectancy rates.

It is the government’s responsibility to take on an active role in providing both emotional and financial support for those in need. In Canada, The Ontario Human Rights Code fights against ableism in the workplace – the discrimination against those with disabilities. It also ensures that people with disabilities in the workforce receive proper services and the necessary adjustments that would allow them to receive equal access to the same opportunities as the rest of the working force.

Studies show that PD patients tend to retire earlier than anticipated (Koerts et al, 2016). The average diagnosis age is 55 years and the longer they stay in the labor force, the harsher their symptoms progress. As a result, it becomes more challenging to perform certain tasks and duties. A PD patient’s “working capacity” (Martikainen, et al, 2006) eventually decreases and they require major adjustments in the workplace. PD patients may ask for work adjustments, such as extra breaks, option of working from home and taking on fewer responsibilities. However, these adjustments may not be enough to help them meet certain expectations. As the disease progresses, they are faced with severe symptoms preventing them from moving forward. This may lead to work dissatisfaction, which is a key factor in their decision for pursuing early retirement.

When studying the impact of having PD in the workplace, one must consider the direct and indirect costs to society. Direct costs include costs such as treatment and medications while indirect costs involve early retirement, reduced income, unemployment and the impact PD has on one’s mental health.

Many studies reveal that factors other than the diagnosis can impact an individual’s employment status. When diagnosed with PD, the challenges do not only stop at the physical level, but also spill over to the individual’s financial and mental health. Koerts et al. (2016) found that level of income depends on the age of onset, “patients who were younger than the age of 60 received a lower monthly income than individuals without PD of a similar age”. This is indicates that those with PD are more likely to be in a worse off financial state than their colleagues.

From a psychological perspective, PD patients tend to avoid public spaces due to their movement disorder being perceived as disruptive and erratic. It is psychologically problematic for one to constantly feel anxious of being in public spaces, afraid to attend work gatherings and meetings, and receive unwanted attention. Therefore, PD patients tend to leave their jobs earlier than they have to because of emotional distress. Unfortunately, the diagnosis coupled with the loss of employment does not alleviate distress.

In conclusion, PD creates many challenges for an individual in the labor force. While the direct costs may seem significant, it is the indirect costs that truly pose the greater problem to our society. Working with PD can be difficult and have psychological implications that force many PD patients to retire early. Work adjustments are important to improve an individual’s “working capacity”, however, some adjustments may not be enough to meet their work expectation. Is the government’s effort to reduce these challenges effective?

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Tai Chi, an exercise involving yoga and meditation, is an excellent way for Parkinson’s disease patients to improve balance and motor control. This exercise known for its health benefits and would not only allow PD patients to regain control over their lives, but also increase working capacity and functionality.  If interested in Tai Chi, our blog covers the exercise more thoroughly along with other options in the post “Exercise, Not Only for the Realm of Athletes”

Sources:

Banks , P., & Lawrence, M. (2006). The Disability Discrimination Act, a necessary, but not sufficient safeguard for people with progressive conditions in the workplace? The experiences of younger people with Parkinson’s disease. Disability and Rehabilitation, 28(1), 13-24.

Koerts, J. et al. (2016). Working capacity of patients with Parkinson’s disease – A systematic review. Parkinsonism and Related Disorders, 27, 9-24.

Martikainen, K. K. (2006). Parkinson’s Disease and Working Capacity. Movement  Disorders, 21(12), 2187-2191.

Wayne, P. (2013, May 03). Tai chi improves balance and motor control in Parkinson’s disease. Havard Health Publishing 

(2016) Policy on ablesim and discrimination based on disability, Ontario Humans Rights Commission

Children with Essential Tremor

Children with Essential Tremor

Essential Tremor (ET) is the most common movement disorder, which is often typecast as an illness of the elderly. Nevertheless, this is far from reality. ET may affect people from all ages and is prevalent among 4.6%-5.3% of the childhood population and children are often misdiagnosed due to the stereotype. ET has a hereditary trait, as a study carried in 2004 by Joseph Jankovic showed that out of a sample of 39 children, 79.5% reported at least one relative with tremor. Furthermore, the mean age at onset of the 39 patients was 8.8±5.0 years and mean age at evaluation was 20.3±14.4 years.

ET has disturbing effects on the quality of life of people who suffer from the disease. 20% of children have kinetic tremor only (i.e. tremor present only when the hands are moving), 5% have postural tremor only (i.e. tremor is visible when the hands are held outstretched), and 75% have both. It can prompt depression and also cause social anxiety. For children it can be even tougher to handle since ET may present difficulties preforming school activities as well as being in front of their peers. It can challenge them by making writing, typing, drawing, or even eating a hardship and additionally, peers may make it harder on them since they can make harsh comments. This may lead to children with ET to avoid their peers, or even refuse to try the simplest tasks. One way to avoid this is to be open about the condition with the child’s classmates and boosting self-esteem early on. Family members that suffer from ET can also be of great help and give them advice. Therefore, they will be aware about the condition and this may avoid them making fun of the child suffering from ET. Children may also get shy causing anxiety, which may cause an increase in tremors. Children are often given small doses of propranolol (20-60 mg) to improve the tremors, however there haven’t been any controlled trials to prove it helps children with the tremors.

The frequency of the tremor in children has a lower frequency from ages 7-12 years than from 14-16 years. It goes from an average of 5.3 Hz to 9.0 Hz respectively. An interesting observation is that when putting a 300-gram weight on the fingers of children with ages 7-12 years, the tremor increases in frequency from the 5.3 Hz to 8.2 Hz, whereas in teenagers and adults it has no effect on tremor frequency. Also, tremor in children can be associated with dystonia, which is a condition where there are sustain muscle spasms. Moreover, an over-active thyroid gland may also cause tremor. Consequently, a blood sample for thyroid function tests may be necessary.

If you are a parent of a child with ET, or a young person with ET we invite you to comment down below any questions, thoughts or stories. We would like this to be a place of discussion and, if possible, a way to reach out for help or to get any doubts answered. These connections should lead to a greater understanding, a support network, and opportunities to share advice with other parents or young people suffering from ET.