Come together and appreciate the power of knowing we are grateful being connected – in our families and sharing together how we get on, pressing through jitters, tremor, freezing, social frustration, and needing time to get our words out and convey how we truly feel inside.
- We may seek our usual schedule and have a feeling of being physically yanked backward, unable to derive the energy we need to maintain an active lifestyle. This can cause a sense of misunderstanding and conflict within ourselves as we reason through wanting to be with others yet expecting difficulty doing so.
- A lack of enjoyment is tough to express clearly to significant others. Those around us cannot “see our thoughts” and may distance themselves from us feeling uncertain about how to interact with us.
- The mystery of Parkinson’s Disease is experienced on an individual basis as we look for order, the energy to muster a productive day, and finding ourselves looking back on what we used to do.
- Knowing what we used to do can cause a low mood and added disinterest – exactly the wrong direction for pleasure and finding enhanced ways to override tight muscles, dyskensia, tremor, “dysregulation” and not knowing when we may have an off period.
- Not knowing the rhythm of our on and off times can feel like we are not in charge and lead to turning off emotionally, let alone having an off phase during the day.
- The challenges of becoming stuck and frustrated, irritated and embarrassed, feeling out of control, and trying to keep up with who we have always been can be exhausting and lead us to back away from maintaining our scheduled activity. Knowing this can be an outcome of living with Parkinsons, we can usher in extra effort to be mindful and find both peace within ourselves and joy around us.
- Asking for accommodation is a learned experience and can bring those we love “next to us” when we take the lead and explain and ask for what we need. Those we love do not want to appear unable or unhelpful, nor do they want to pry and take over.
- Let’s learn to be as awesome as we are and take the joy of knowing one another as an advantage. The Parkinsons community is powerful and has the gift of understanding, accepting challenges, seeking new knowledge for care and resolving unmet needs.
- Do everything possible to make accommodations for yourself and those around you. Try not to give in and seek feelings of pleasure. Tackle becoming infuriated and seek to be there for yourself with wisdom and self-control. Push through at every turn.
