There are currently 1,415 Maltese people diagnosed with Parkinson’s Disease – but these are only the ones we know about.
Talking to Newsbook.com.mt as part of World Parkinson’s Day, the founder of the VO ‘Step Up for Parkinson’s, Natalie Muschamp, explains that currently there is very minimal data available on Parkinson’s patients in Malta.
Until now, what statistical data can be accessed on their numbers has come by way of Malta’s pharmaceutical companies providing the information about the number of buyers of the Parkinson’s medication. This gives insight into approximate figures, however, more research is required in this field.
Muschamp says that these numbers are predicted to be higher in Malta, as there are people in early stages of the disease who do not know they have it or have not yet been diagnosed. This number is then doubled when you include caregivers, bringing it closer to 3,000 people, she explains.
‘More and more people are facing the early onset of Parkinson’s Disease. We need to do more research on this since people with Parkinsons are not suffering on their own.’
It is important that we build a way to build awareness and to deal with the disease.
Awareness and positivity through dance
Step Up for Parkinson’s has been providing dance classes for sufferers and their caregivers in Malta since March 2017. What started as a pilot project in 2016 has morphed into a fully-fledged voluntary organisation providing specialized movement classes to various locations in Malta, as a means of improving the Quality of Life of its participants.
Muschamp explains that after witnessing how the disease had impacted the life of her aunt’s partner and on her aunt herself, she was inspired to find a way that used her own profession as a dancer, with a determination to understand and create better awareness about Parkinson’s.
Armed with the training on how dance had been used to treat Parkinson’s sufferers in the US, Muschamp went back to research at the university to study how it could help not only the person with Parkinson’s Disease, but also the Caregiver. Since then, she has dedicated herself to creating awareness and using her skills to help Maltese sufferers of the disease and their carers.
From 8 initial participants, the free service has grown to 160 people and 95 regular attendees from all across Malta.
Connecting the body, connecting people
Although much research still needs to be done, the current understanding is that the neuro transmitters in the brain struggle to send the necessary dopamine resulting in the body freezing and struggling to move, even creating erratic and uncontrolled movement in some and speech tremors in others. Then over time, sufferers start to lose their facial expressions and their voice. Some people reach the point where they can’t walk, ending up in a wheelchair and eventually bed-ridden.
But, through copying and mirroring dance movements, those neuron transmitters in the brain have the potential to begin to reactivate.
‘Much like in a dance class, our participants are regaining their balance and stretching and extending their bodies and rebuilding muscle memory as a result. Dancing is helping their self-esteem, regain their identity and agency. They are also dancing in a group and when they come with their caregiver, the activity allows them to let go of the disease and better connect with each other.’
We need to understand this better
Muschamp explains that Parkinson’s Disease is the 2nd largest neuro-degenerative disease next to Alzheimer’s, but still little is known about it.
‘They are stuck inside their own body, unable to express themselves or show expression. But their mind is still there. It is not the same as Alzheimer’s.’ Muschamp explains.
She adds that Parkinson’s is a life changing disease which impacts the lives of not only the sufferer but also the caregiver and the families, friends and colleagues which surround them.
‘There are around 10 million people globally suffering with the disease, and with a rapidly increasing aging population , that number is expected to double by 2030.’
For now, she is determined to keep building the connections within her participants, mentally, physically and socially.
You can reach out to the organisation here or call 99200822