How Can You Help Your Parkinson's Community?

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A diagnosis of Parkinson’s disease is something that millions of people around the world face. For those of us that have been diagnosed, we wake up each day to the physical and emotional challenges the symptoms of PD inevitably brings. April is Parkinson’s disease awareness month, a time for reflection and proactivity. How can we make a difference to this community that we belong to?

  1. Reach out to someone else with Parkinson’s disease. We are not islands unto ourselves. We do best when surrounded by caring individuals who are there to support us and help us face the obstacles this disease brings. Receiving that support from someone who shares a similar life experience is particularly invaluable. Try and play that role for someone else in your community, someone who may earlier on in their PD journey or someone who is going through a particularly challenging time perhaps. There are many options for connecting with others – in-person support groups, informal settings, or online for example.
  1. Share your knowledge and practical advice with others. The challenges may not be any easier, but our life experience can benefit from recognizing that this journey is one that we share with a whole community of individuals living with Parkinson’s. And there is much to be learned from sharing our disease experience with each other, not only from a coping standpoint but also with regards to more practical challenges. Practical tips on for example, how to non-medicinally cope with stiffness or ways to effectively exercise and stretch can be helpful. As are stories and advice regarding real life situations such as job challenges or disclosure. Although we are all unique in our experiences with Parkinson’s, our needs and our response to interventions, we can truly benefit by learning from each other.
  2. Educate those that are not informed about Parkinson’s. Months dedicated to specific disease awareness are a natural time to share information with those that may not be as familiar with the illness. It is a time to educate the general public about Parkinson’s. Not only factual information about the symptoms, the disease management and complications that may arise but also how this disease affects life in general. This patient narrative is extremely valuable in engaging and motivating others to become involved with a cause. Adding a personal story can certainly humanize what can sometimes be fairly abstract when defined by facts alone.
  1. Fundraise. It takes a significant amount of money for a drug to make it from the lab to the pharmacy shelf. Government funding is unfortunately inadequate in this process, which then hinders research into potentially viable treatments. It will take a significant amount of money and fundraising support to move research forward towards symptomatic or curative treatment.  But you can help by supporting organizations involved in allocating money raised towards research. Attend an event or take on your own fundraising initiative.
  1. Participate in clinical trials. The importance of this point must not be understated. Clinical trial enrollment is absolutely vital. Parkinson’s disease research cannot move forward without willing participants. Essentially better treatments will not exist without our support as a community. There are many types of clinical trials to be involved with, some more demanding and involved than others. But each and every one leads to a better understanding of this disease and how we can best address the symptoms that we face as well as searching for that ultimate cure.
  2. Become an advocate. Become an agent of change on a political level. Join a grassroots advocacy movement and campaign for changes in the amount of funding or attention allocated towards supporting the Parkinson's community and medical research.

Obviously, Parkinson’s disease is not limited to one month a year. Instead, it is a challenge that those of us with this disease face on a daily basis. However, Parkinson’s disease awareness month is certainly a time to evaluate how we are contributing to this cause and to further our involvement not only for our benefit but also for the benefit of the entire Parkinson’s community.

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