Some of the other areas are restricted to those who have signed on as volunteers, but you should be able to see enough to help you decide if you are interested. If you think you are interested I would recommend you contact one of the people listed in your State Leaders Directory and have a discussion about their experiences.
In the meantime, I am looking forward to continuing my efforts on behalf of the APF Action Network. I will be attending a Summit for all volunteers in Minneapolis this April. I have been a volunteer for almost one year and have already spoken at conferences, met with legislators, provided written testimony to the FDA on proposed policies and written to several US Senate and members of the House of Representatives in support of the National Pain Care Policy Act. I have been interviewed by several publications and was a panelist on a web-based talk show, www.letstalkpain.org.
In conclusion I can say that the year is starting off well. Yes, my pain and physical challenges are still there and they still limit what I can do, but I plan to continue to push through it all as much as possible and take back some of what I used to have. I’ll let you know how I do.
I just want to say God bless you for the work you are doing for all of us. I am an advocate with the National Patient Advocate Foundation. I have not been able to do any physical advocacy because of my limited physical capabilities and being a caregiver for my partner with Parkinsonism. I do contact government officials by email on important issues. I have helped patients get assistance with medical needs.
We need so many more volunteers that do the wonderful work you do. I think Leader is a wonderful tag. You and others are leading the way for our future.
Huggles,
Ann
Thank you for your comments and kind words. Your work as an advocate is vital to assuring that policies and regulations that affect those of us with physical illnesses and challenges reflect the real needs and issues that we face every day. Elected officials may not read all the letters and emails they receive, but they do know how many they receive on each side of an issue and I believe factor that into their decision making. Your work is critical and I hope you can continue it.
I am fortunate that my physical challenges are still limited enough so I can visit with officials in their office, attend conference and speak in front of groups, and I hope to continue doing this work for as long as my body allows. MS is a progressive disease so the future is questionable, but isn't that true for everyone? I can't stop doing things today because I may not be able to do it tomorrow. Of course some days are more difficult than others and we all have to pace ourselves.
Your role as care partner is something few people can understand unless they have lived it themselves. My Mom had advanced Parkinson's and I know the toll it can take on both body and mind, so I applaud you caring for your partner while battling your own physical problems.
I wish you all the best with your health and with all you are trying to do to assist all of us with physical challenges.
Best,
Denise