Volunteering for GBS/CIDP

    • June 6, 2018 at 10:31 pm

      Hi all,
      Has anyone ever done any volunteering for GBS/CIDP? What all is involved?
      I have done lobbying in New York state, in the state capital, Albany, for the UAW (Union of Auto, Aeronautical, and Agricultural Implements Workers). We don’t get anything other than our usual factory pay, and room and board for the 3 days we are staying i an Albany hotel, and transportation there and back from Buffalo on a bus. We get about 6 topics to discuss with legislators, with which appointments have been set up for us by the union. We also have some speakers come in on the first day, to inform us on the finer details of the topics we will be bringing to our state legislators.
      My dad had CIDP, and passed away five years ago, due to aspiration pneumonia. He suddenly lost the ability to swallow, but at that point, was confined to a hospital bed my mom had brought into the house. She moved him to the shower and his Lazy Boy in the living room, via a Hoyer lift. She dressed and bathed him, and also fed him, as he had lost the ability to do so himself.
      I saw how hard my mother had it, caring for my dad at home. She reused to put him in a nursing home, as she knew he’d never get the intense care he could give him at home. Nursing homes never have enough nurses, aides, or access to PT (certainly not for GB/CIDP patients), but thats another topic.
      I also saw the hard time my dad had, in getting his condition diagnosed. Luckily, the University of Buffalo Medical School Neurology Department is recognized by the folks here at the GBS/CIDP as being a Center of Excellence. Once a doctor (who was not a neurologist) felt my dad’s problem was possibly GBS, and referred him to UB Medical School, my father was able to get diagnosed correctly, and start IV/IG. He had a time of improvement, where he went from using a wheelchair, to being able to walk up and down stairs by himself. Unfortunately, he suffered a relapse, and continued to worsen.
      So…I have seen, that we need more money devoted to research and treatment, to educating general physicians in recognizing the signs of these conditions, and in referring patients promptly to the appropriate specialists. Caregivers need both financial, and concrete support. I have seen advertising on tv, a state funded program in NY, that pays family caregivers. But, is a program like this available in every state and terratory of the US? Is the pay, a living wage? If the caregiver has to quit a job to provide care for a family member, and they are paid under this program, an they qualify for thier own health insurance through the government? A lot of questions I need to call my state legislators about, and very possibly, complain about!
      HAs anyone lobbied for GBS/CIDP? I could, of course, contact the folks at the Foundation, and I will, but what about all of you in the forums? Whats your take on lobbying, if you’ve done it?