"From the Outside"
Parkinson's Support Resources
Resources and Tools You Need To Support Someone With PD
I've created this page to help bring together information and support tools for family and carers of someone diagnosed and living with Parkinson's Disease (PD).
My mum was diagnosed with PD in 2012 and we have found that the journey requires the patient and family to source the information needed to understand the condition, and how to help someone successfully live with it. Whilst she has a great neurologist and medical network, there are so many things that go unexplained regarding the journey from diagnosis to implementing a new way of living, what options are available for holistic and natural treatment, and what the symptom spectrum contains.
Each person's journey is different, and therefore the challenge can be in a lot of 'trial and error' for the patient and support network.
Whilst I am by no means a medical professional or expert of PD, I openly share my experience as a daughter and carer, and provide a 'hub' of information gathered from websites and books to provide a one-stop resource that you and your family and friends may find useful.
Please feel free to reach out if you have any questions or are needing something that we haven't included on this page yet.
"Parkinson's can be the wake-up call to transform yourself into a better person."
Understanding Parkinson's
Parkinson's Disease is a neurological disorder that affects millions of people worldwide. It primarily impacts the brain, leading to changes in movement and coordination. While the exact cause remains unclear, it is believed to result from a combination of genetic and environmental factors.
The hallmark symptoms of Parkinson's Disease include tremors (shaking), stiffness, and slow movements. These symptoms occur due to a decrease in dopamine, a chemical in the brain responsible for smooth muscle movements.
As the disease progresses, individuals may also experience difficulty with balance and coordination, making everyday activities challenging. Additionally, some may encounter non-motor symptoms like depression, anxiety, and trouble sleeping.
Although there is no cure for Parkinson's Disease, several treatments, such as medications, physical therapy, and lifestyle adjustments, can help manage symptoms and improve the quality of life for those affected. Ongoing research aims to better understand the disease and develop more effective therapies.
Support and understanding from family, friends, and healthcare professionals are essential in providing a better life for people living with Parkinson's Disease. By raising awareness and fostering research efforts, we can strive towards a future with improved treatments and, ultimately, a cure.
Life Can Still Be Great
Being diagnosed with Parkinson's Disease can undoubtedly bring challenges, but it's essential to recognise that life continues after the diagnosis. Parkinson's is a chronic condition, meaning it persists over time, but it doesn't define or limit who you are as a person.
People with Parkinson's can lead fulfilling lives and engage in various activities, including work, hobbies, and spending time with loved ones. While the disease may present some hurdles, advancements in medical care and lifestyle adjustments can help manage symptoms effectively.
Maintaining a positive outlook and staying proactive about managing the condition are crucial factors in living well with Parkinson's. Regular exercise, such as walking, swimming, or yoga, can improve mobility, strength, and balance. Physical therapy and speech therapy can also play an important role in enhancing daily life.
Remember that each person's experience with Parkinson's is unique. Some individuals may have mild symptoms and experience slow progression, while others may face more significant challenges. Surrounding yourself with a supportive network of friends, family, and healthcare professionals can make a world of difference in coping with the ups and downs of the disease.
Although Parkinson's currently has no cure, ongoing research is continually bringing new insights and potential treatments. Participating in clinical trials or supporting Parkinson's research organisations can contribute to finding better therapies and, one day, a cure.
Living with Parkinson's Disease requires adaptation, patience, and resilience, but it also offers opportunities for personal growth and new perspectives on life. With the right support and a positive mindset, people with Parkinson's can continue to cherish meaningful moments and create cherished memories throughout their journey.
Coming Soon
A firsthand look at the challenges and triumphs faced by carer's of individuals with Parkinson's. Insights from a carer's viewpoint promises to shed light on the often underrepresented aspects of this condition.
Readers will have the opportunity to understand the emotional journey of caring for someone with Parkinson's, capturing the moments of strength, vulnerability, and resilience. You'll gain insights into the day-to-day realities, the impact on family dynamics, and the sacrifices made by carers will resonate with others in similar roles, offering comfort and reassurance.
Through our story, readers will gain a profound understanding of the physical and emotional toll that Parkinson's takes on both the person with the disease and their dedicated carer. You will gain valuable lessons on coping strategies, fostering open communication, and finding support in difficult times.
Furthermore, raising awareness about the crucial role carers play in supporting individuals with Parkinson's Disease. By highlighting the challenges and rewards of caregiving, together we can foster empathy and understanding of PD, encouraging a more compassionate and supportive society.
DOWNLOADABLE TRACKERS
Medication Tracker
Print off and place on fridge or kitchen bench to track intake of medication. Can also capture meal timing in the tracker.
Sleep Tracker
Print off and place next to bed or on kitchen bench to track hours of sleep and quality. You'll notice correlations with your energy.
Energy Tracker
Print off and place next to relaxation chair or on kitchen bench to reflect on energy levels throughout the day and week.
Best Self Activities Tracker
Print off and place on fridge or hallway table as a prompt to help you be your best self. Don't forget to include some fun!
DOWNLOADABLE CHECKLISTS
Daily Gratitude Checklist
Use this checklist as prompts for your journaling. Go through the prompts one by one and write the first thing that comes to mind.
Productivity Checklist
Remove the stress of trying to achieve everything, all at once. This checklist gives you permission to do things at your pace.
Self Talk Checklist
At times the negative self-talk party moves in and takes over. This checklist helps work through the downs and celebrate the ups.
Daily Self Love Checklist
Adding some self-love structure to your day helps bring connection back to you - the whole human, not your PD diagnosis.
OUR LIST OF RESOURCES
Books about Parkinson's
This compilation of book titles and authors is a mixture of reference and study books, personal biographies and individual journeys, and some humour - because PD doesn't have to stop you from seeing the lighter side of life.
Podcasts about Parkinson's
This list of podcasts provides insight on the journey of PD, personal reflections and
research and clinical information.
Contact us to be a guest on our upcoming Podcast
"From the Outside"
Movies about Parkinson's
This list contains movies, documentaries, short films and YouTube videos about PD. Having a slow day - pop your slippers on, grab a cup of tea and enjoy a movie taking a lighter look at PD and how the world looks from both sides.
Events about Parkinson's
Our event list will be focusing on Australian events including seminars, workshops, community events and celebrations.
Contact us to be listed on our annual planner.
ONLINE EXERCISE RESOURCES
PD Warrior
PD Warrior is your support network, education channel, enabler, confidence giver and motivational coach. With us, you’ll learn how to move well, believe in yourself and live better with Parkinson’s.
Power for Parkinson's
Free fitness, dance, and singing classes for people with Parkinson's Disease and their care partners in the Austin, Texas area and around the world.
Rock Steady Boxing
Rock Steady Boxing gives people with Parkinson’s Disease hope by improving their quality of life through a non-contact boxing based fitness curriculum.
Dance for Parkinson's
Dance classes for people with Parkinson’s disease. Participants are empowered to explore movement and music in ways that are refreshing, enjoyable, stimulating and creative.
CREATIVE ACTIVITY RESOURCES
Painting With Parkinsons
This innovative art therapy program is designed specifically for people living with Parkinson's. There is no requirement to be proficient in art and rather than being taught or directed, the unique methodology supports participants to become absorbed in their own work which results in beautiful, individual artworks.
