Thatís the question Jackie Hunt Christensen wants to ask youówhether you have Parkinsonís, love someone who does, or treat those with the disease.
Living in Minneapolis with her husband and their two sons, Jackie is the state director for the Parkinsonís Action Network in Minnesota and vice president of the National Parkinson Foundation Minnesota. More than 15 years ago, she was diagnosed with young-onset Parkinsonís, but continued working as an environmental health activist. After she turned 40, she decided to focus more on her own health and family, channeling her passion for activism into the Parkinsonís community. Her first effort to raise awareness about PD was to host a house party for Michael J. Foxís final episode of ďSpin CityĒ in 2002. Since then, she has published two books about living with Parkinsonísóa guide for the newly diagnosed and for those who undergo Deep Brain Stimulation (DBS) surgery.
In anticipation of this Octoberís World Parkinson Congress (WPC), Jackie developed a survey about the impact of Parkinsonís on relationships and interpersonal communications. From this survey, she will use the data to create a poster to present at the WPC. And she needs your help. She says, ďIíve been thrilled by the number of responses Iíve already received. But I hope to get even more, so I can represent as many experiences as possible.Ē
Jackie hopes to inspire more discussion around Parkinsonís non-motor symptoms, such as facial masking and issues with speech. She says, ďI was first made aware of these symptoms about 18 months after my diagnosis, when my husband asked, ĎAre you mad about something?í I said, ĎNo, why do you ask?í And he said itís because I look mad all the time. It wasnít until I talked to my doctor that I realized this was a common symptom of Parkinsonís.Ē
After Jackie had DBS, she regained some of her facial expressions. However, her voice remains weak. To help her address this, she asks her family to tell her when they canít hear her. She jokes, ďMy younger son is a teenager now. So I have to differentiate when he doesnít respond to meóis it because he actually canít hear me, or because heís simply ignoring me like a teenager?Ē
Although DBS has significantly improved her quality of life, Jackie worries that some people may initially find her unapproachable, due to her facial masking or ďflatĒ voice. And she is often frustrated by peopleís reaction to her halting speech. ďThey tend to complete my sentences for me. And I hate that.Ē As a Parkinsonís advocate, she says she sees too many people speaking on behalf of patients, rather than allowing patients to speak for themselves. ďThat makes living with the disease even more isolating,Ē she says.
Through her survey and presentation at the WPC, Jackie hopes to help combat this. In particular, she hopes the information she gathers will prompt researchers to look more closely at these lesser known symptoms, which can have a tremendous impact on the lives of patientsóand their loved ones.
Share your experiences by taking part in this survey. †††