Journeying beyond Parkinson’s
Published on: Monday, April 29, 2024
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Alice and the association members doing physical activities in a group setting.
When she was diagnosed with Parkinson’s Disease (PD) five years ago, it felt like her world had been turned upside down.
Suddenly, the tasks that once came easily to her became more challenging, and she worried about how her condition would affect her ability to care for her loved ones.
Alice experienced a lack of energy, often described as fatigue or tiredness, which is one of the symptoms of Parkinson’s Disease. It’s not just physical exhaustion but can also involve mental fatigue.
Parkinson’s Disease is primarily characterised by motor symptoms like tremors, stiffness and slowness of movement.
However, it also presents a range of non-motor symptoms, and fatigue is one of them. Such fatigue can be quite debilitating and is often reported as one of the most troublesome symptoms by individuals with Parkinson’s.
Did you know?
- According to the Parkinson’s Foundation, more than 10 million people live with Parkinson’s worldwide
- The risk for Parkinson’s increases with age. The average age of onset is 70.
- Male are twice as likely to develop Parkinson’s than female.
- Research has shown a link between environmental toxins and chemicals and Parkinson’s.
- Parkinson’s is different for everyone. No two people have the same exact symptoms.
Despite the initial shock and uncertainty, Alice refused to let Parkinson’s define her. With the support of her family, she adapted to her new reality and found creative ways to continue fulfilling her roles as a wife and mother.
She communicated openly with her family about her limitations and together they found ways to divide household tasks more evenly. She embraced new strategies to help her manage her symptoms.
She worked closely with her healthcare team to find the right combination of medications to control her fatigue and tiredness. She also incorporated physical therapy and exercise into her daily routine to help maintain her mobility and independence for as long as possible.
Alice also found solace in connecting with others who are living with Parkinson’s.
She searched for a support group in Kota Kinabalu and came across the Parkinson Association of West Coast Sabah (PAWS) through its Facebook page and decided to join them.
The association serves as a platform for People with Parkinson’s (PWP) by bringing them together through fellowships, sharing sessions, home visits, health talks, exercise sessions which is exactly what Alice is looking for.
Here, she found understanding and camaraderie among people who were facing similar challenges.
Through these connections, Alice realised that she is not alone in her journey and that there is strength in community.
Alice made many new friends in PAWS. One of them is Danny, another sufferer of Parkinson’s.
Living with Parkinson’s wasn’t easy for Danny as well. Simple tasks that once seemed effortless became more difficult.
Stiffness in his muscles made movement slow and the unpredictable fluctuations in their symptoms added an extra layer of uncertainty to each day.
Yet, despite these obstacles, Danny refused to let Parkinson’s define him. With the support of his loved ones and healthcare team, he embarked on a journey of adaptation and resilience.
He is very disciplined in his workouts and exercises, and walks at least 1 hour each morning every day, which he has been doing for the past five years without fail.
Today, Danny is the Chairman of the Parkinson Association of West Coast Sabah (PAWS).
He is determined to achieve the mission of the Association, which is to promote awareness and understanding of Parkinson’s to the community, and to offer holistic care to PWPs and their caregivers as they journey through life with the disease.
Over time, both Alice and Danny discovered that Parkinson’s has not diminished their spirit; if anything, it has strengthened it.
They found resilience they never knew they had and a deeper appreciation for the precious moments of life.
And though Parkinson’s remained a part of their story, it was only one chapter in a life filled with courage, perseverance, and hope.
# The Parkinson Association of West Coast Sabah (PAWS) is organising an Awareness Talk on Parkinson’s Disease in collaboration with Gleneagles Hospital Kota Kinabalu on May 18 (Saturday). Contact our Careline 011-10706633 for further information.
Keywords:
Parkinson Disease
Parkinson Disease
