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Living with Parkinson’s disease can be a long term illness that will change over time. It is not a death sentence, your life doesn’t have to stop and many live well for a long time. You can have many years of lesser symptoms living a better quality of life in the way you want to.
Building a team of supporters with medical and non- medical professionals is one of the most important tasks you can do for yourself.
It’s all about building a network of specialists, family and friends so you’re guaranteed the best quality of care for the long term.
You don’t have to face the disease alone; feeling like you will become a burden on others, losing your independence or becoming isolated in your home. It is uncharted territory for everyone and it’s a process that takes time but can be your lifesaver .
For me, having cared for several family members over many years, the support team became my lifesaver and the most beneficial. When a good team of specialists and lifestyle experts come together on your behalf tapping into resources that you don’t know, the results are enormously reassuring.
Besides having a team, it is important for you to remember that foremost, you are your own best advocate for managing your care because you know best what your needs are to be met.
Here are 5 reasons you need a personalized team of supporters:
- Be Prepared
Learn about the disease, specialists, medications and the varying stages that will affect you. Know the details, what’s coming and how best you and a support team can help you. You can talk to other Parkies and find out what they’re doing. You can also join a support group.
Include in your network of specialists:
- A neurologist who specializes in conditions of the brain. He or she can confirm your diagnosis and establish an appropriate treatment plan.
- Consult a movement disorder specialist, a neurologist doctor with additional training in movement disorders. Movement disorder specialists may be more familiar with Parkinson’s disease and can guide you further.
- Include your GP or primary physician who will be with you all the way as you go through different stages of care.
- For non-motor symptoms include specialists that can support physical and mental issues that come up such as physiotherapist, social worker. psychologist, nutritionist, biological dentist (to remove amalgams) and speech therapist.
2) Tap into Resources
Learn how the system works; know your rights and caregiver rights. Do some research about new technology to help you through stages and symptoms, clinical trials that are going on and studies that you can participate in. Remember, you are your own best advocate!
3) Learn how lifestyle can improve your symptoms.
You have your own interests, hobbies and social activities that you enjoy in your day to day life. Just because you have been diagnosed with Parkinson’s doesn’t mean you’re life stops! Keep going!
THINK OUTSIDE OF THE BOX!
What other skills do you need in your team?
- Include a nutritionist on your team so you can be guided about the best foods to eat (Ask Me!) and learn why your diet impacts how you feel each day!
- Add a personal fitness trainer to your team who will get you moving on daily exercise and help you through difficult moments of physical stiffness and rigidity. Studies have shown that exercise has enormous affects for delaying and managing symptoms.
- Reduce your stress because stress can aggravate Parkinson’s symptoms causing additional strain on you and your loved ones. Promoting good mental health practices with mindfulness, mediation and relaxation techniques will guide you through those tough days and encourage positive thinking, another lifesaver!
- Include in your team of professionals alternative therapies such as a naturopathic doctor or acupuncturist, a yoga teacher, art teacher, financial advisor or your religious/spiritual leader. Include whoever is in your life that matters to you most. It will change as your illness progresses, and people will come and go so it’s not made in stone.
- Don’t be angry, be positive because there are many options with new technologies and research that is improving the way people are living with Parkinson’s everyday!
4) Community EQUALS Immunity! Include your community to be there for you at every step of the way! Connecting with your community of people and socializing daily during this time supports your goal of being your own best advocate and investing in the process of your self-care.
Your community is an excellent resource to develop a CIRCLE OF FRIENDS. You can will want to have a network of friends and family to turn to who understand your situation and who will be there for you in good and tough times. They may be your primary caregivers of a spouse, a family member, friend or paid caregivers. Rotate your support team regularly since people need time off and relief from caregiving to prevent burn-out, anger and distrust. You can designate someone to oversee this part so you’re not caught up in the personality dynamics. Remember know their rights and caregiver rights. Keep it fresh and focused on keeping you healthy with a positive mindset and quality care.
5) Pay it Forward.
As you educate yourself about the disease and the process of care, pay it forward to your team, circle of friends and caregivers about what you are learning, what the best foods are to eat, invite them when pursuing your daily exercise, tell them how you’re monitoring your meds at the same time every day and encourage discussion of meaningful conversation. Your team wants to be included in your journey and making communication an important part of your relationships promotes openness, honesty and a positive mindset and builds trust and long term commitment.
Connecting in deeper ways and you will discover who are you’re biggest fans!
A final quote I’d like to share with you from Davis Phinney former cycling champion and founder of the David Phinney Foundation says, “We can’t control that we have Parkinson’s, but we can control how we live with Parkinson’s.” “Living well is a choice, and there is a great deal you can do right now.”
Taking charge of your healthcare is no small feat and I applaud you for all that you have done and worked hard for to this point.
your team is ALSO an extension of your values and goals. Think outside the box about what matters to you most.
It will make all the difference to feeling secure, cared for and keeping a positive attitude.
- Mosaic Homecare Services,
- Rehab Magazine.ca (Fall 2015, The Meaning of Me)
- David Phinney Foundation, Every Victory Counts
- The effects of a mindfulness-based lifestyle program for adults with Parkinson’s disease
Have an amazing Week, and in good health,