Glenn Ribotsky, a Board member with the Western Neuropathy Association, shares his dramatic initiation as a patient into the world of peripheral neuropathy. Now, 18 years later he advocates and offers support to others experiencing the often, invisible pain of a neuropathy.
For those of you that came here looking for a photo mentioned in the podcast, it will turn up. Check back in a week. Thanks!
Excerpt
I’m actually one of those people. I’m fortunate in that I can actually distinguish, in my case the symptoms, and I’ll talk about why among different types of neuropathy. But I have problems where I have cervical spine impingement on my spinal cord, but I also have peripheral neuropathy. The impingement from the cord, though, tends to create symptoms that are much more localized because it said certain levels of the spine, in my case from C5 to C 7. In terms of that nomenclature, those symptoms are basically neck backs of shoulders and down the arms, whereas the more systemic peripheral things are body wide and the symptoms also are somewhat different. I mean, I get more typical compressive symptoms out of the cervical spine stuff as opposed to the other small fiber neuropathy. I have and define those terms for people, which is much more of a burning pain.
Traditionally the month of October is the time to become aware of people with disabilities — either a visible or invisible disability — but here we’re drawing attention to all those who face physical and mental health challenges. With 1 in 10 Americans diagnosed with a rare disorder (whether it’s a visible or invisible disability) and all of the others making up ~ 25% of Americans with chronic health conditions, let’s practice an awareness on a daily basis.
Sunny Ammerman, NORD Ambassador for Indiana, talks about spoon theory, her role as a Patient Advocate for NORD and the Pituitary Network Association, and her blog, InsomniaDoodles.
Telling a patient story can be a highly emotional task for anyone. Thankfully, there are people who can help. Emily Newberry – author, speaker, coach – at the Kaiser Permanente in Oregon, is one of those people.
Emily was a natural story teller having spent part of her youth helping others tell their stories through song. Over the years she’s perfected the craft and simplified the process. It’s not rocket science, she says, just remember two facts and a feeling.
As part of Kaiser’s Person & Family Centered Care, high impact storytelling is important for patients as well as healthcare professionals. A patient story can create a call for action.
Featured are four people — with their own unique health conditions — that are coping and making the best of the quarantine and pandemic.
Luda Gogolushko, who has SMA Type 3 and lives in Southern California, continues to write and publish from the safety of her home.
Lindsey Kizer, in North Carolina, gets to telecommute for her job and tries to maintain self-care routines to avoid narcoleptic flare ups.
Jay Carr, with myotonic dystrophy in Virginia, spends more time with his teenage son during the lockdown. He also cheers others with his humorous Facebook posts and musical interludes.
Peter Slobodnik, outside of Sacramento, keeps himself busy by making masks for friends and family while also planning an advocacy bike ride to draw attention to his rare disease, Hereditary Spastic Paraplegia.
Each of these podcast guests has found their own way to cope with the pandemic.
What is a Patient Advocate? A patient advocate can be an actual patient with a mental and/or physical health condition, a caregiver for someone with a health condition, or a paid professional advocating on behalf of others with a health condition.
Andrea L. Klein, of Cleveland, Tennessee, has collagen six intermediate congenital muscular dystrophy. She started a Facebook group, Breathe with MD Support Group, for people with a neuromuscular disease who struggle with respiratory health. Recently, she established a nonprofit organization with the same name.
Melissa Talwar, of Pasadena, California, has struggled with fibromyalgia since she was 14 years old. Her experiences with different medications and their alarming side effects catapulted her into focused research on the condition and potential treatments. After volunteering with a patient advocacy organization and then traveling around the U.S. to meet others with fibromyalgia, Melissa also established a nonprofit organization.
February 28 is International Rare Disease Day. There are over 6,000 rare diseases or disorders with 80% having genetic origins. Global events are planned to draw attention to the need for medical research.
This brief, light-hearted podcast episode shares a few less critical aspects to having a rare disease. For a deeper dive, check out last year’s Rare Disease podcast episode.
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How do you give back? In previous podcast episodes we heard from Amy – a music philanthropist – who sings to raise money for causes she believes in, Chris – a software engineer – who has been involved with a nonprofit organization that helped him as a youth, and Hazel – a retired government employee – who teaches others about service dogs.
Today’s episode features Susan, diagnosed with breast cancer in 1987, who helped the Women’s Cancer Resource Center thrive; first as a volunteer and then as its first executive director.
Maybe you have a firm grasp on what Patient Advocacy is all about? This episode explores different ways people with disabilities, their allies, and their caregivers practice advocacy. Whether you’re searching for the best healthcare options, leading a support group, mentoring newbies, meeting with legislators, or using social media to get a message out — it’s all about advocacy.
Nancy and her friends meet Senator Cory Booker at a national Parkinson’s Disease Advocacy Conference
Nancy Husari, a retired college instructor with Parkinson’s disease, felt empowered by her advocacy experiences at California’s state capitol and in Washington, DC. Brook McCall, Grassroots Advocacy Manager for the United Spinal Association talks about her work. Marla Murasko, a Down Syndrome Mom Advocate, shares her advice and experience using social media platforms for advocacy. Nina G., comedian, professional speaker, storyteller, writer and educator, discusses how to be a disability ally.
Loose Transcription
Hello and welcome to our episode about Advocacy. I’ve been thinking about this topic for a few months and have asked previous podcast guests about it – how do they define advocacy and what actions do they take toward advocacy – because I believe advocacy can have multiple interpretations. There is no one correct answer. This episode didn’t gel for me until I heard about a friend who went to Washington, DC for an advocacy conference. More on that friend later.
I admit that perhaps my first idea of advocacy included images of going to a state capitol or local offices for government officials, or legislators, and asking for something. Years ago, when I was on my city’s library board, I did just that with a group of library-loving citizens. It was informative but it didn’t jazz me. Perhaps I lack that type of advocacy in my DNA? Not that I question its importance but…I’ve found my inclination toward helping my fellow patients – my community – a more suitable endeavor.
Just what is an Advocate? The dictionary definition says an advocate is someone who speaks or writes in favor of something…they recommend something publicly. My life as an advocate began when I assumed the role of support group facilitator. I began to learn more about neuromuscular disease and how it impacts others – patients with different conditions than mine, their caregivers and families. I listened to these stories and integrated them with my own story and experience and over the years have helped to create programs and opportunities to not just suit my needs and desires but perhaps others who may not have the energy or opportunity to advocate for themselves.
It is my hope that through the stories of my four guests you’ll learn about advocacy efforts that may be suitable for you. Not everyone can go to Washington DC and speak with senators but perhaps you can write a letter, make a phone call, use social media, or cultivate a network of allies?
The first guest is my friend, Nancy Husari. I know Nancy from my local community here in Alameda. We met at a yoga class years ago and she’s in my book club. Nancy is a recently retired community college instructor. I asked Nancy if she calls herself an artist and her response – in line with her whimsically dry sense of humor – is that she prefers being called a FLÂNEUSE. That’s F – L – A – N – E – U – S – E with a little thingy over the A. It’s French; I wasn’t familiar with the word. You can look it up. I thought she was referring to the nasal decongestant…but…no.
Nancy was diagnosed with Parkinson’s disease nearly 5 years ago. She didn’t share the news with me until a year or so after her diagnosis. She was still working full-time and her public acknowledgement of the condition took time as I’m sure many of you are all familiar with this process. Here’s our conversation about advocacy.
Nancy
I’ve been political active since the Vietnam war. A big part was through my Union. Lobbying advocacy was with Headwaters Forest when they were cutting down the Redwood trees in 1995. Our union got involved in it. what happened we got involved; the main thing was to divest state retirement teacher’s funds from a corporation. The first time we had cross pollination between labor and environment. They were both being screwed. I ended up being the person to speak in southern California. I was quoted in the newspaper. I saw a small group of people can really make a difference. You don’t really have to know anything or be an expert. All you have to do is show up and try. Later that turned in…I saw how we got what we wanted there. When the opportunity came for me to get involved with Parkinson’s, it was a natural fit for me.
I was too busy having Parkinson’s, working, and commuting. It’s a natural fit for me. What is advocacy? To me it takes political action into a specific realm with communication with our legislators…specific asks about policy. For me it means face-to-face meetings with staffers and legislatures. Advocacy does have all those meanings. My cat has small cell lymphoma and I am acting as his advocate. We all need an advocate to help us through the healthcare system. We’re doing it as a community.
what was your engagement with the structure, Parkinson’s disease organizational structure? We’re really lucky in the east bay to have PD Active – it’s not political like Michael J. Fox is. PD Active has a good support group, has a lot of exercise classes, and getting into a mentoring system. So people who are newly diagnosed have someone to show them the ropes. I needed that. I put it together piecemeal for myself. I would say I started this before going to Washington DC, I unofficially act as a mentor. I tell them about the options, medications, support groups…I think I pretty much covered it. I believe people have to take that first step. Get a moving disorder specialist. I just paid for a third opinion. There’s no diagnosis for Parkinson’s; there’s no bio marker. Only get an autopsy. It’s connected to advocacy work. I talk to people about exercise because that’s really important with Parkinsons; it’s not just everyone should get exercise. It’s as important as the drugs. Also just being an example telling people when they are first diagnosed they’re going to be really upset. But for me it has gotten better. I’m still able to do what I want to do…but I used to be able to put on a backpack…long hike for me is 5 miles. It’s not the end of the world. That’s how I see my role as an unofficial mentor to people. It was called Parkinson’s Policy Forum and run through MJF Foundation. It was really a great experience. I got an email from…do you want to apply for the forum? I did not think I would be accepted. I didn’t know anyone that would write that letter. I mentioned that I did lobbying in Sacramento. I was accepted. It was well organized, speakers, they taught us general things…Cory Booker spoke about his father who had Parkinson’s. they told us the Dos and Don’ts. It was empowering to be in a room with hundreds of people who have the same disability that I have. Maybe some were in wheelchairs. You have on and off periods. When the meds wear off, you really feel it. I saw a group of dynamic people that you didn’t need to explain things to. It was uplifting, energizing. I like being around people with the same disability and are real go-getters, being the same people they were before.
In an earlier podcast episode exploring how weather affects our health, I spoke with Brook McCall. Brook is the Grassroots Advocacy Manager for the organization United Spinal Association. During that conversation, I took the opportunity to ask Brook what advocacy means for her.
Brook
I am working with the United Spinal…it’s a relatively new program. A network. We have someone in most states. Point person for advocacy. Make connections with legislators, working relationships going forward. Advocacy is an awareness. It’s anything we’re doing to make people understand what we need for our unique lives. Making sure we have allies. People know…simple things out there to make our lives better. [what was your path to becoming a vocal advocate?] agreed! I’ve been amazed lately. For me it was a slower process. When I was in the hospital for my injury; it was the first time I was in a hospital. I learned about the insurance system. I was mind-boggled. I had family, resources. I empathize the same things are being navigated by people without the resources. I just ended up going back to school, I studied public health. How many more advocates are needed? You need to speak to the policy makers. I remember that conversation. Over the years I’ve been able to get more involved.
Brook mentioned allies. The term, disability ally, also came up during my conversation with Nina G. Nina G. was featured in our previous episode, laughter is the best medicine, because Nina is a stand-up comic. But Nina wears many hats in addition to being a comedian – she is a professional speaker, storyteller, writer and educator. Nina, who grew up with a learning disability and is a stutterer, brings her humor to help people confront and understand disability culture, access, and empowerment. She is certainly an Advocate for the disabled community so I asked her to explain the term, disability ally.
Nina
What is a disability ally? I have two friends – Hope and Elizabeth – how to be an ally for someone who stutters. If you want to be an ally to someone with a disability, you ask how do you want me to help? a big part of it to look at yourself and why do I want to be an ally. Is it about me? Steve Danner is a little person. We went to Seattle we went to NBC stand up for diversity which neither of us advanced on; what I noticed when we were everywhere people started at him. They get stared at constantly. This was so friggin awful. I started to stare at the people who were staring at him. I’m making this about me. This is me being angry. We talked about it. we want to be an ally to different people, in different groups. I think it needs to come down to genuine places. A drunk comic said to me…Dave sat there and was annoyed for me. He explained it’s a brain thing and has nothing to do with you. that to me is being an ally and they can just take it because it’s a relationship they have.
Each of these guests you’ve heard from has a disability. You don’t have to have a disability to advocate on behalf of people with disabilities. Like Nina described, there are disability allies. And there are also caregivers who make advocacy one of their goals. Marla Murasko is a Down Syndrome Mom Advocate and Inclusion Influencer. She uses social media as her main form of advocacy.
Marla
I started out with Facebook. That’s where my community was – mothers of children with Down’s syndrome. Social media is constantly changing. Instagram being visual; I need to share my message of inclusion, it’s easier for me to do it on Instagram. Drive people back to your blog. Instagram stories. Use it to bring real life to your blog. I’m connecting more and having more intimate relationships with families on Instagram. Businesses are drawn to it. I feel I need to be. I do Facebook Lives. The patient leader or advocate…
I think LinkedIn can be vital to health advocates if they are looking to connect with companies, health industry leaders. Share stories on, may get organizations to collaborate with you. they may invite you to speak at events. Have a presence on LinkdedIn. I’m taking what I put on my blog I put it on LinkedIn.
I’d love to hear from listeners about their advocacy experiences. Feel free to comment on the podcast notes for this episode on the Glass Half Full website. I’m sure we haven’t covered all the ways people can advocate for themselves or their loved ones.
No matter how you choose to express yourself as an Advocate I think it means taking the next step from being alone with your condition or disability. Stepping outside yourself, perhaps outside your comfort zone. You may never aspire to visit your State Capitol to speak with legislators but don’t dismiss it as a possibility. Here are some final words from Nancy and they are definitely motivational…
Nancy
I would encourage anyone who knows and loves someone with a neurological disease to get involved with advocacy whether it’s just signing letters, staying informed. From my experience, it really works. The more personal the interaction is…an email is great…face to face…I’m getting a lot of bang for my democratic buck. They really do what people say. They’re open to the constituents. Pictures are good. …when you see the off periods, it’s really devastating
According to Wikipedia, a patient advocacy organization is, “an area of specialization in health care concerned with advocacy for patients, survivors, and carers. The patient advocate may be an individual or an organization, often, though not always, concerned with one specific group of disorders.
I’m an active member of two patient advocacy organizations. One of them had their annual patient conference last week in San Francisco. The conference location changes each year to provide opportunities for families to attend that may not have the resources to fly across the country. It was either the 8th or 9th annual conference and I’ve attended nearly all of them. Each year the conference draws more researchers and pharmaceutical company’s involvement but, thankfully, the heart of the conference remains with the patients.
I really don’t like using the word, patients, because it doesn’t necessary define us. And we’re certainly not sufferers or victims. We have a rare, genetic disease and it nearly always impacts several family members. The annual conference is more like a family gathering.
Over the years I’ve developed friendships with many of my myotonic dystrophy carriers and their families. I can really say I know someone almost in every U.S. state with the disease. It’s fascinating to realize that many of these folks I never would have met had it not been for this disease. Some live in more rural areas of the country. Others live in big cities but lead a very different life from mine. Yet at least once each year we gather together, share knowledge, laugh, eat easy-to-chew food, and maybe clink our glass of wine or beer.
Last weekend I came home from the conference exhausted but today I remembered the wonderful feeling of being surrounded by people who each understood why I walk a certain way, why my energy waxes and wanes, as well as why I carry around small servings of soft food.
How do you give back? In previous podcast episodes we heard from 
According to Wikipedia, a patient advocacy organization is, “an area of specialization in health care concerned with advocacy for patients, survivors, and carers. The patient advocate may be an individual or an organization, often, though not always, concerned with one specific group of disorders.