Raising PD Awareness One Shuffling Step at a Time
It is that time of year again when people of all walks of life unite to celebrate PD warriors uniting as a single voice to raise awareness for a progressive neurodegenerative disease that affects more than 10 million people worldwide.
Despite all the advances in the last 20 years, we have just begun to scratch the surface. One way we can continue to peel the layers is by raising awareness. We have to take advantage of the fact that a big portion of disease knowledge comes from other patients like ourselves.
How do I become involved?
You may feel that you are too ill, not gifted enough, or simply not have the RIGHT stuff to become a Parkinson’s advocate!
I say that most of us when faced with a challenge of this magnitude in life (living or caring for someone with a chronic illness), none of us are ever really prepared. We learn as we go along. The important thing is the willingness of heart to persevere, be a mentor, a leader, a friend and a voice for those who can no longer speak.
Begin at the beginning
The desire to help others understand the ins and outs of PD as well as the energy to fight for changes that will bring forth a better life starts with self-love. First, we need to accept our diagnosis as another life experience from which we can learn and grow. Don't get me wrong, just because I have accepted living with PD does not mean I am not doing my best to kick its hiney, or that I don't get worried or frustrated about being forgetful, unable to multi-task, care for my daughter at times, or even practice my beloved profession. However, by owning our disease we can then become an asset to others who come after us, as I have attempted to do over the past few years. Not only can we educate each other but our physicians as well by sharing our experiences. This may require opening up about the things that are embarrassing, frustrating, down right infuriating, as well as the things that matter most to us in our daily lives.
Ways of advocating where you are
I understand that sometimes we are simply unable to travel or venture out because of illness. But, no matter your station in life or your stage of PD you can be a friend/mentor who is newly diagnosed just by sharing your knowledge and checking in on them which will also serve to combat any loneliness or depression you might experience. Of course there is always social media which can bridge any socioeconomic status or distance. This may also allow you to participate in research studies which do not require you leaving home or loved one alone.
Be a listener
We don’t really expect anyone to solve all of our problems or cure our illness, but a shoulder to cry on is a much appreciated and highly valued thing. This simple act of listening and encouraging someone is typically the first step to a long meaningful relationship returning confidence and worth to the person in need. You can do this over the phone or Skype, but it's much better and more effective in person.
Be a guide
You been there and know the perils all too well. But be careful not to impose or insist that they do things your way to arrive at the same destination. They must try out things for themselves in order to find their own unique voice in the midst of PD.
Only when we merge our knowledge with that of the experts can we have effective advocacy so that we can all live a more productive, healthier, happier lives despite PD.
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