As with many other illnesses, Parkinson’s has a stigma (especially for those still working) that some people wish to avoid. They don’t tell anyone of their condition and brush off comments about tremors and other symptoms as something of a temporary nature due to a flue or rough night. They try to avoid social functions and may even work longer hours to cover up productivity issues. But like other illnesses it may be unavoidable to admit to those close to us the true nature of our condition. Even in Alcoholics Anonymous members protected by anonymity will eventually come out of the closet to firstly trusted group members and later to others in their social circle.
Personally I don’t think a PDAnonymous model using only first names in meeting and continue to be private about our condition. So what is the alternative? Let a little air out of the ego and prepare to join your community. Seek out similar people or a local support group that you can talk to. If you are on Facebook there are a number of discussion groups with thousands of members. Sit down with your family and/or close friends and tell them your story of diagnosis and treatment. If you have not yet done so, assemble a personal health care team that meets your specific needs. Don’t forget, you may not meet another person with the exact same symptoms, they say that “if you know one person with PD, you know one person with PD”.
You should be feeling a little better already once you have assembled your health care team and informed your inner circle of family & friends. That “Feeling Connected” starts to chase away the feeling of being alone which is said to be much deeper than loneliness. But you can go further and get even more connected by getting involved with activities to support your new found community. My wife immediately felt a connection to other caregivers in our group by volunteering to help with our Pie & Vinyl Sale. After a few hours in the kitchen making pies for the event she felt connected to other ladies in our chapter. It also made her want more connectivity as she expanded her knowledge of our reality through her new friends in our community.
The Parkinson’s Peterborough/Kawartha Chapter has chosen the theme of “Feeling Connected” for 2020. This is our 40th anniversary of service to our community and we will run our 25th SuperWalk fundraiser in September, 2020. Our community continues to grow but even though we are more connected electronically than even, we seem to be losing that personal more intimate connection that was developed with one-on-one conversations in the past. The telephone, when it was just a phone forced that one-on-one conversation that normally opened with a greeting and followed up by asking something like “how are you doing?”. The impersonal world of e-mails and messaging may be much more efficient but is it sustaining the emotional connection between us?
Our challenge this year will be to reach out in a more personable manner to reconnect with our members and supportive individuals in the community. Please join us in creating that “Feeling Connected” to everyone touched by Parkinson’s so no-one will suffer alone.
