How has Parkinson’s affected your relationship(s) with your spouse/significant other, your children and grandchildren, siblings, parents, relatives, or close friends?
Come join us on Wednesday, March 6, from 1.00 P.M. – 3.00 P.M. for an open discussion on how Parkinson’s has affected your relationships, for better or for worse, with those near and dear in your life. We are the speakers! Share as little or as much as you feel comfortable sharing.
Our growing group will now be meeting in the larger, brighter classroom we met in for February’s meeting. It’s a shorter walk from the parking lot if you use Entrance B into the building.
In welcoming many new members these past few months, it seems a good time to review our commitment to each other in our support of each other. Of utmost importance is confidentiality. To continue to have a safe place to discuss topics we can’t discuss elsewhere, we have to know: What is said and who said it, stays between us. When we leave the room, we leave what was discussed and who was there to discuss it behind closed doors.
Sharing our experiences regarding medical treatments, physical and mental health diagnoses, and medications (prescribed and over-the-counter) is a large part of the help and support we give each other. A brief reminder to consult your doctor before making any changes. Adding or stopping a new medication, as well as increasing or decreasing the dosages of existing medications, should be done with your doctor’s knowledge and supervision. (See also: What We Are and What We Are Not)
In response to a member suggestion to share some articles she thought of interest with the group, we have created a new page: Interesting Article Links. You can access it from the SHOW dropdown menu. Check back often as we plan to keep updating it and do send along anything you’d like us to add.
Trisha Stotler, who spoke to our group about Mindfulness and medication, and Carolyn Black-Bagdoyan, who spoke to us about yoga and held a yoga class some group members participated in last year, are holding a 6-week class: Growing Resilience: Mindfulness & Body Awareness for People with Parkinson’s Disease on Sundays from 2.00–3.30 p.m. in Vienna beginning April 7. Click on the class title for complete information. Several group members have already indicated they plan to sign up.
One of our members is looking for fellow clinical trial participants! Specifically she is interested in the Nilotinib study being run by Dr. Pagan at Georgetown University. She writes: “The first wave of participants will want to continue taking the drug after the study ends. Nilotinib can be expensive and it will take a few years before insurance companies will cover the cost. The 70 participants have given much of their time and energy, to say the least, to support the work of understanding the benefits of Nilotinib. The drug company that makes Nilotinib stands to profit from this drug. Uniting and showing our strength via numbers may catch the drug company’s eye and get them to help out participants with the high cost of these meds.” If you are interested in learning more, you can use the Contact Us form to get your information to her.
Here’s an opportunity to help with PD research locally. George Mason University is conducting a study on multi-tasking while walking. It involved a one-time session of about 2-1/2 hours at their Fairfax campus. If you are 60 years of age or older and interested in learning more or would like to participate, please contact Caity Bryson, PhD Student and Graduate Research Assistant, at 703-993-5041, or email cbryson2@gmu.edu.
Consider attending the PFNCA Symposium on March 23 from 9.00 a.m. to 4.30 p.m. Program and registration information is available on the Parkinson Foundation website.
I am really looking forward to this discussion because this disease does not only impact us but it impacts everybody we come into contact with throughout our lives whether they realize it or not
Thanks for sharing with us.