Results of a patient-led research project
Editor’s note: This is part three of a three-part series of articles from Dr. Kevin Austin, Adjunct Professor in the Health Futures Institute’s Personalized Medicine Centre at Murdoch University, Australia. He lives with IBM and turned his research skills toward a study to understand the priorities of those living with myositis and their care partners.
By Kevin Austin
In part 1 of this series, we revealed the priorities and challenges for Australian IBM patients, carers, and families. In part 2, we found that IBM patients and carers were not coping well at all with living and managing the daily risks and challenges. In this final installment, we discuss what happened after the completion of our research project and how we went about putting words into actions with managing challenges faced by patients and carers living with IBM.
In assessing the challenges for IBM patients and carers and revealing that they are not coping well with them, we wanted to develop a blueprint for how to improve coping for these individuals. With the help of some knowledgeable consultants, a small team of IBM patients and carers who were interested in driving change followed a process focused on identifying activities to improve mental health.
The working group identified some interesting suggestions for improving your personal ability to cope, particularly with mental health, which are summarized below:
- Myositis patients and their caregivers face significant mental health challenges due to the debilitating nature of the disease.
- The condition severely impacts daily life, causing restrictions in mobility, socialization, and independence.
- As the disease progresses, patients often lose their ability to perform basic tasks, leading to a loss of dignity and increased reliance on caregivers.
- This situation creates emotional strain for patients, carers, and families, resulting in feelings of frustration, disappointment, depression, and anger.
Together with a review of the literature, the strategies we generated for improving your personal ability to cope revealed some interesting suggestions, particularly with mental health. An online or AI search can provide more information and resources related to these ideas.
Be kind to yourself
- “I just look for a window and go through it”
- Pace yourself – lighten your load – take on less, so you can cope
- “Pause for your cause”
- Celebrate all that you can
- Look after yourself
Mindfulness and meditation
- Guided meditation sessions
- Mindfulness apps and resources
- Deep breathing exercises
- Deep relaxation exercises
Cognitive behavioral therapy (CBT)
- CBT workbooks
- Online CBT courses
- Group CBT sessions via Zoom
Stress management
- Stress management workshops
- Progressive muscle relaxation techniques
- Time management and energy conservation tools
Emotional support
- Buddy system for peer support
- Virtual support group meetings
- Caregiver-specific support sessions
- Accessible professional support from clinical psychologists, in person and online
- Support network
Creative therapies
- Art therapy sessions
- Music therapy resources
- Journaling prompts and exercises
- Woodworking
- A Men’s Shed – community space where men come together to work on projects, socialize, and support each other
Physical wellness and movement
- Tailored and group exercise
- Movement programs
- Tai Chi
Social engagement
- Virtual book clubs
- Online interest groups (e.g., photography, gardening)
- Volunteer opportunities
Educational resources
- Webinars on myositis functional management
- Mini “how-to” videos on daily living skills
- Regular updates on research progress
- IBM-FRS – IBM Functional Rating Scale for keeping track of progression
Practical support
- Home modification checklists
- Equipment selection guidance – series of one-page fliers on selection criteria
- Accessibility improvement resources
Goal setting and personal development
- Goal-setting worksheets
- Positive affirmation exercises
- Personal development courses
- Adding meaning into your life – our changed reality
- Bucket list that’s realistic
Relaxation techniques
- Deep relaxation audio guides
- Yoga for limited mobility
- Aromatherapy resources
Technology assistance
- Training on assistive technologies
- Introduction to helpful apps (e.g., speech-to-text)
- Virtual reality experiences for relaxation
- One-page flyers on equipment selection guides
Financial wellness
- Workshops on managing healthcare costs
- Resources for accessing financial support
- Budgeting tools for chronic illness management
Spiritual wellbeing
- Meditation resources
- Online spiritual support groups
- Guides on finding meaning and purpose
Sleep hygiene
- Sleep hygiene education
- Relaxation techniques for better sleep
- Resources for managing sleep with physical limitations
Grief and loss support
- Coping with loss of abilities workshops
- Support groups for dealing with chronic illness grief
- Resources on acceptance and adaptation
Relationship support
- Communication workshops for patients and carers
- Resources for maintaining intimacy with physical limitations
- Family counselling options
Cognitive stimulation
- Brain training exercises
- Language learning resources
- Puzzles and games adapted for limited mobility
Humor and positivity
- Laughter yoga sessions
- Positive psychology workshops
- Humor therapy resources
Crisis management
- Development of personal crisis plans
- Access to crisis hotlines
- Resources for emergency mental health support
Accessing existing free self-help resources
- MindSpot – contact@mindspot.org.au
- Australian Federal Department of Health
- Mental Health America (MHA)
- National Alliance on Mental Illness (NAMI) helpline
- There may be other resources in your location
Nutrition and non-inflammatory diets
- Dietitian
- Nutrition planning tools
- Changing to non-inflammatory diets (Keto diet etc)
- Homogenization of foods
Adaptive cooking classes
- Cooking classes
Immersion in nature
- Bush walks
- Forest walks
- Forest bathing
- Coastal walks
- Fishing
- Metal detecting
Conclusion
By implementing these strategies, individuals and healthcare providers/supporters can significantly enhance the quality of life for IBM patients and their carers. The focus on accessibility, awareness, mental health support, peer networking, healthcare access, equipment resources, research, community involvement, caregiver support, and information on ethical considerations, like voluntary euthanasia, will create a supportive environment that promotes wellbeing and resilience.
Some useful stuff here but what strikes me most is the comprehensive list of things I used to enjoy doing but can no longer do with IBM – Bush Walks – Coastal Walks – Mens Shed – Fishing – Wood Working – Tai Chi…
You could add in Immersion in wellness. E bike riding. I find it better than walking and riding Rail trails with friends are alot of fun. Turned 70 this year and managed a 70klm ride with friends. .All riders want to do a rail trail ride again. With a e bike you can adjust your power level to your disability and getting out is great for the body and soul. Where possible I ride everyday at least 12 ks.
Hi Peter, I am with you on the ‘doing with friends’ activities. It is interesting you can still ride. I can’t, so looking at recumbent trikes. Check out my comment on this blog. Look after yourself.
Following from Peter’s comment above…
My wife and I visited the Dwellingup (Western Australia) Trail and Visitors Centre yesterday exploring the possibility of using a recumbent trike (pedal powered) on the fairly recently established ‘mountain bike’ trails. I have walked the Bibulmun, paddled the Avon Descent many times, and used to love mountain biking. These were all done in groups – I just love participating in group activities. I can no longer ride a conventional bike. During the visit we were advised of an NFP organisation called Break the Boundary, established about 6 years ago I think. They are a voluntary organisation supporting people with physical and intellectual challenges who wish to participate in adaptive hiking and mountain bike activities, the latter seemingly using hand or pedal powered recumbent trikes. These can be fitted with electric motor assist, like an e-bike. Just this evening I have been exploring this. I am ‘excited’ about the prospect of participating as it sure beats the ergonometer at the gym.