PDNY: New York City Resources and Information Service for People with Parkinsons Disease: Please join National MS Society in Patient Initiative re Drug Prices

PDNY: New York City Resources and Information Service for People with Parkinsons Disease: Please join National MS Society in Patient Initiative re Drug Prices

Dance for PD Free Dance for PD classes in All Nyc boroughs (and world)
Blogger: Leonore Gordon, LCSW

Brooklyn Parkinsons Group brooklynparkinsonsgroup.orgBrooklynparkinsongroup- Free exercise and dance classes, programs and support groups

Please join National MS Society in Patient Initiative re Drug Prices

Really important NY Times article: http://mobile.nytimes.com/2016/09/28/business/furor-over-drug-prices-puts-patient-advocacy-groups-in-bind.html?smid=fb-share&referer=http://m.facebook.com
PD patient advocacy groups! Feel free to substitute PD for MS in your own version addressed to elected officials, https://www.usa.gov/elected-officials https://www.usa.gov/elected-officials
But don't let the MS folks stand alone.

Parkinsons Advocates Report Apathy Symptoms Alleviated Through Contributing to Community

https://www.dropbox.com/s/79rwvwqoivctmm7/Poster%20ApathyPARKINSONS%20CONFERENCE%20%20WPC%20poster%209%2012%2016.pdf?dl=0

Key Findings & Conclusions/Implications and Future Goals as per Survey Results 

(54 respondents from ten countries, 8 from outside North America)

  

A) 76% of those surveyed experience Apathy symptoms as described in survey intro,    43% for a day or more

B) Only 33% of respondents report being clearly asked by their Movement Disorder neuro's if they've personally experienced Apathy symptoms, and only 21% of those surveyed had Apathy clearly explained to them as a PD symptom. A good number mistake Apathy for Depression. 

C) 83% of those surveyed felt Apathy had reduced their motivation to participate in physical, social and other activities which could benefit them 

D) 81% of those surveyed felt advocacy and volunteering  endeavors reduce their apathy symptoms, with 68% saying this was for a week or more, 

E) If offered, 92% would seize opportunities to help others in PD or other local communities, even from their homes. 

My conclusions (& Implications) from survey results 

1) Members of PD community need to better educate PD peers, our families, and our PD neuro's about differentiating Apathy from Depression, and to recognize and identify symptoms unique to PD-related Apathy . 

2) We need to teach our neuro's and other health care providers the importance of inquiring from their PWP patients whether they have Apathy symptoms

3) Recommend to PD organizations and Health Care practitioners that they explore the willingness of patients to contribute to their self-defined communities-including working from home- and emphasize the treatment value of this work as alleviating Apathy.  Next. Introduce idea to above groups of encouraging and/or recruiting PWPs with skills suited for needed positions benefitting the PD (or local and/or global community). 

4) Encourage family members in PWP's support systems to do the same as suggested above; to find ways the PWP can help others, including activities done from home such as joining MJ Fox/PAN to e-mail legislative alerts, sending get-well cards or making phone calls to sick members of local community, enlisting friends and family to join Unity Walks for PD and other disease group fundraising,  etc. 

%20WPC%20poster%209%2012%2016.pdf?dl=0