People with anxiety, autism, blindness or low vision, deaf and hard of hearing, mobility challenges, chemical sensitivities, or PTSD may face unique challenges visiting a dental office. Now with the additional barrier — the COVID-19 pandemic — many people are postponing or cancelling routine dental appointments.
Dr. Helena Caballero, a dentist in Northern California, discusses oral health and hygiene, how COVID-19 has changed dentistry, and modifications for people with disabilities.
For additional information, you can download Creating Disability Friendly Dental Practices from The Independence Center. For those with Parkinson’s Disease, additional information is provided to maintain dental health. For those with neurological disorders, there is an article, “Dental Visits Made Easier” offering helpful tips.
Here is an article that discusses the little dental coverage that Medicare offers.
If you, or someone you know, has a muscle or nerve condition such as Multiple Sclerosis, Spinal Cord Injury, Amputation, Osteoarthritis, Parkinson’s Disease, or a neuromuscular disease (i.e. myotonic dystrophy, SMA, Charcot Marie Tooth, Becker’s, ALS, etc.), here’s an opportunity to participate in a research study. No trips to a medical center or donation of muscle tissue required.
The Department of Rehabilitation Medicine at the University of Washington Medical Center has a variety of studies with different criteria. For Factsheets produced by UW — after a study has concluded — check this website.
Listen to an earlier podcast episode with a UW Department of Rehabilitation Medicine Research Study Coordinator about Resilience and Aging with a Disability.
For additional information about research studies discussed in this episode:
It’s April Fool’s Day so we’re mixing things up with an unhelpful advice rant. One can’t be positive 100% of the time. Now is the opportunity to share about all of the weird things people have said about our health conditions — whether it was a friend, an aunt, or even a health care professional.
Perhaps well-intentioned but definitely not insightful nor helpful advice. Most people with some type of chronic health condition have had this experience.
A panel of three previous podcast guests share their stories — from the hilarious to the frightening. Nancy, Melissa, and Laurel let it all out.
Being diagnosed with a chronic, debilitating disease can certainly bring stress to one’s life. In fact, that stress can be significant enough to be called trauma.
How one handles this stress varies. Some people have amazing coping capacity and are hard-wired for resilience while others have more difficulty. None of it is easy.
Mary Holt, a Registered Nurse with a Master’s Degree in Counseling Psychology, shares her journey of loss and recovery and the profound impact a mindfulness meditation practice has had on her life and work. She brings this practice to the clinics where she helps patients and their families with neuromuscular and Parkinson’s disease.
welcome to glass half full with leslie krongold she shares her stories experiences and knowledge of living and coping with a chronic health condition learn about tools and resources and hear inspirational interviews that help you to live a life filled with quality and dignity with two decades of support group leadership leslie’s ready to help you make lemonade out of life’s lemons are you ready are you ready
hello listeners we’re nearing the end of february which means it’s almost international rare disease day i have a rare disease do you there are over 6 000 rare diseases i know i’ve met people with a disease so rare that they’ve never met anyone else with it i can’t even imagine what that would be like recently at my monthly support group we had a family joined us who had never met people outside of their family with myotonic dystrophy if you’re diagnosed and you live in or near a heavily populated city you will hopefully not have to wait too long before you meet others with the disease we have a patient advocacy organization that has an annual conference and this conference has given me the opportunity to meet others with the condition who live throughout the us and other parts of the world we’ve had people in the conference come from new zealand south america and of course you know a few european countries so rare disease day celebrated on february 28th is a day of advocacy getting out in the public to let others know about your disease last year a group of us met at senator dianne feinstein’s office in san francisco this year we’re joining others with rare diseases at a local museum and park so check the gospel website for links to learn more about rare disease day maybe there is an event happening in your neck in the wood and i will also include a couple links to podcasts that i did specifically about rare disease day today though is not about rare disease as i mentioned i’m part of a patient advocacy organization which meets in person annually usually in a different location throughout the country and last year we met in philadelphia and one of the sessions i attended was titled mindfulness as a disease management strategy now you can just imagine how that piqued my interest unfortunately the session was less than 45 minutes but i could tell the presenter had more to offer so i introduced myself gave her my podcast calling card it’s actually a postcard um if you want one let me know anyhow she and i recently had a chance to talk mary hope is a busy woman she works at two different philadelphia clinics and has a private practice in addition to her academic work she’s a registered nurse and has a master’s degree in counseling she has a lot of lived experience mary was a caregiver for her husband and experienced his loss at an early age with two young children to raise she’s also been in recovery from alcoholism for a number of years i have always worked in my nursing career uh with chronic pain and chronic illness that kind had always been my path and then there were actually a series of events that had happened personally in my life and i had not been working for a time while i was pregnant with my second child and yeah it was just knew i had to get back into the workforce my husband had become quite ill and i you know of course he was not able to work so i really had to kind of get back into the workforce um you know kind of help provide for us in a sense in my two children so i saw this job posting that was for a nurse coordinator i loved always being able to kind of have that integrative model so i love the coordination piece and it was neurology so it was it was the mda als center of hope um and at that time it was at diversity in philadelphia and that was back 2005 and then i started there as a nurse coordinator full time and i was probably seven years or so and had had a master’s encounter with a specialization in psychological trauma and bereavement so working with people that had you know a focus of course of chronic illness terminal illness that was really one of my passions so when the mental health specialist left that center then i kind of moved into that role in terms of being able to support the patients and the families yeah all throughout the journey really from time of diagnosis or from the time that we you know began with them and then journeying for as long as they stayed with us you know for a number of years the rest of my time my other full-time work i actually do three things so my other full-time work is working with parkinson’s and i’m a nurse educator a clinical educator with that population so i work with people that have parkinson’s and their families and i work with physicians movement disorder specialists and i do educate food i teach the families and the patients how to use a particular medicine medication and injectable medicine for parkinson’s and really how to live well you know as best as they can with their parkinson’s and then outside of that i am also i have a private practice in terms of life coaching speaking mindfulness practice and things like that so i’ve always had a desire to have uh and my you know goal still one of my goals is to be able to do that more to be able to reach people in a way that to have a greater impact in terms of helping people so i when i was working originally with a neurology team and during that time i had had a meditation practice of my own i’ve been sober for a bit over 12 25 years and i’ve had a meditation practice of my own for a number of years and when i was at jefferson i was working with chronic pain patients and they had a center for uh integrative medicine so i went there and i took a mindfulness course a mindfulness meditation it was actually a stress management course and at that time i fully impacted and shifted my whole experience in my own life my professional work my recovery my own personal health in such dramatic ways that i went on for more training and really have been teaching and doing that practice and really focusing a ton of my work professionally around stress stress management and how it relates to our health and also how mindfulness can be a foundational piece of that in terms of helping people live well in the midst of chronic illness and terminal illness so what is psychological trauma when it’s boiled down it is trauma if we look at just trauma in and of itself is something whether it be an experience a situation or an event that overwhelms the system right overwhelm the system physically of course it could overwhelm the system of course which is my my specialization psychologically and mentally emotionally spiritually as well so that can come from a certain particular event it can also come from chronic exposure to certain things whether they be you know external or potentially internal you know somebody is chronically experiencing anything you know negative perceived as negative to the point where it over overwhelms our ability to kind of integrate our experiences on a healthy level for us to be able to function kind of day in and day out in a healthy way yeah because when i hear the term trauma i think of people with ptsd or um some sort of sexual abuse i generally might and i’m not you know a professional in psychological or mental health but i um i think of it as like an incident or series of incidents that are traumatizing but the way you’ve defined it it sounds as if just the diagnosis of a progressive chronic illness can serve as trauma
absolutely yes absolutely i’ve experienced that with people you know when we say in particular when we you know potentially give somebody the diagnosis of als or something um what can happen is that i mean on the flip side of this too i you know i don’t know if we’ll talk about it but is also the amazing resiliency of the human spirit in terms of being able to you know kind of integrate and wrap our brains around certain things and being able to function in the midst of these kind of crises these crises that happen in our lives but you know when somebody is you know faced with a situation that is in many ways i’m going to say potentially but can many ways alter their existence and how they perceive that it can absolutely be traumatic i was actually just this weekend i was working with our team our multidisciplinary team and in terms of the and talking about the effects of you know continually working with the population of you know in neuromuscular conditions and neurodegenerative conditions that you know it is a traumatic environment because we’re continually working with emotions that may arise from time to time such as frustration powerlessness not being able to make an effect potentially loss grief sadness you know and that can be incredibly distressing to the you know our mental capacity and our psychological capacity to be able to manage so how do you define resilience so i would define resilience as the amazing capacity which always seems to surprise me the amazing the amazing capacity of the human being and the human spirit to be able to integrate and rise above
what may be perceived as incredibly negative circumstances and find meaning continue to move forward um serve continue to serve in some way not that all of these are necessary but these are the things that i see in the people that i work with and the families that i really tiny amount like couldn’t even fathom what it’s like yet you are serving the world rising above taking your experience and helping others that is to me incredibly resilient because some people fold i also see a lot of people fold and i don’t believe that there’s a good a right or wrong necessarily we all do with the capacity that we have um but when you ask about resiliency it’s definitely i think you’re a living example of that so the session you read at the conference this year how i met you was titled mindfulness as a disease management strategy so i think we’ve led up to this right you talked about how mindfulness helped you and you your training and i’m assuming you’ve implemented it in all the work you do does a mindfulness training or does it as a strategy help build resilience for me personally you know mindfulness is kind of a buzzword around healthcare around the corporate world somewhat um and it really is a way of it really is a way of relating to the world you know i mean when i so i practice minds when yes there are strategies within mindfulness and from the bigger scheme it really is a way of relating to our life and our life experiences and ourselves and others um so it definitely can build resiliency because what mindfulness gives us is number one it gives us awareness so i’m not a and the other thing i want to say is it’s a practice so it’s something that is certainly cultivated over time i am absolutely not an expert it is something i practice every day um every moment of my life that i can become more aware so it gives us an awareness so we’re not just acting on autopilot so we have some sense of you know when we’re going down the rabbit hole per se so it gives us awareness and then it has this underpinning in terms of non-judgment and compassion so it offers me the opportunity to meet my life and my life experiences to number one become aware of my you know how i’m perceiving something and how i’m relating to it and then it gives me ways of coping with openness and non-judgment and compassion for self for others and for kind of life as a whole which is simple in words yet incredibly in light so yes it can 100 yeah build resiliency how do you do that in the clinic setting i mean i i’ve been to the interdisciplinary clinics in san francisco and at stanford you know for my disease and i imagine they’re kind of similar and you know i went for years i haven’t gone recently but i had a pt who i saw you know uh every year for many years and one of the last times i saw her and unfortunately she had to leave the clinic she moved away but she started talking about mindfulness meditation and i was blown away because it was such a departure from anything she spoke about before so i’m wondering you know is it something that the other clinicians are talking about too or is it just you that’s actually yeah that’s a great question so it is um it just depends on everybody’s level of comfortability uh in our life right now it’s not something that everybody talks about people they are becoming more aware of it and more i would say open to it you know whether that is because of you know kind of what i do you know i talk about there so i would love to see it one day as kind of a standard of care um interesting and really offering people ways to manage you know all of i mean you think i’m just thinking about the physical therapist so if your physical therapist is there talking about mindfulness meditation that shows huge kind of integration to me that says you know there’s a lot of integration there in terms of what can help support you that she’s not just just addressing you linearly right with a solo focus you know acknowledging the fact that you are simply as a being right you have a mind you have a body and you have a heart so how then can we because they don’t none of them operate individually so how is it then that we can take our health care management and also approach people you know i really meet people in the sense that you know that we each really do have the capacity within ourselves to kind of answer all the questions that we have and we do have the resources within us um whether we need to find some more outside but we really do have a that within us so i meet people hopefully with that uh intention that you really do have everything that you need um and my role with you is then just to help you uncover that and get clear what’s your relationship with yourself you know that’s a big thing so when i’m seeing people in clinic a lot of our conversation is around um what’s the you know what is the relationship with the illness you know a lot of people are you know fine you know quite they they’re angry they’re and those emotions sometimes are controlling them in ways that they are not even aware of and impacting choices that they make choices that they don’t make whether they’re going to use their walker or not use their walker whether they’re going to accept a feeding tube or not accept the feeding tube so how to how how help them explore the reasons underneath that why is it that you don’t want to use the walker when you’ve fallen three times right no not in a fault-finding way but just to help them explore that oh you know it means that um you know that much worse in my illness or i’m giving into it or you know what will people think of me i’m weak you know all sorts of things so um yeah so i really try to help them you know to provide a space for that to arise because the body does hold you know there’s a book called the body holds the score or keeps the score and it really i mean you know our bodies just like it needs to you know all these negative emotions they all kind of you know they can i mean whether we’re giving a space for them or not they need to come out some way right so especially people that have physical conditions you know like you all the people that i work with i i stress that it’s even more so important and myself you know i it is more so important if we already have a physical condition or a medical condition that we you know somehow manage the stressors and you know negative emotions in our lives when they arise because our body is already kind of working somewhat double time um you know to manage and you know negative emotions build up or not given space can just impact that in a profound way there’s a lot of research around that as well in terms of the cascade of events with the you know neural chemicals that kind of run through our body so i hope to just meet people you know i hope to just provide a space where people feel that they can uh you know be real and really explore what they need to so then they can make the best decisions that they can you know for themselves whether it’s using the walker or not using the walker having the feeding tube or not having the feeding tube so a lot of my work in the clinic is around life choices all the choices we have to make yeah i invite you to check out mary’s website especially if you live anywhere near philadelphia she teaches a variety of classes i wish i could take thanks for listening i hope you’re able to take away something you heard in today’s podcast and apply it to your life take care of yourself and i i hope to see you online in our facebook group on youtube instagram or on the glass f4 website thank you for listening to glass half full leslie invites you to leave a rating and review on itunes this helps spread the word to others dealing with chronic health issues for show notes updates and more visit the website glass half full dot online
Two friends from grade school share their stories of a diagnosis of a neurological condition. Marc has Multiple Sclerosis and Steve has Parkinson’s disease. I have a form of muscular dystrophy called myotonic dystrophy. It’s purely coincidental we all went to the same synagogue; there is no correlation between being Jewish and having a neurological condition.
Both Marc and Steve maintain positive attitudes. Marc has educated himself thoroughly about MS. Steve has tried different exercise programs customized for people with Parkinson’s and now facilitates a support group.
Steve has a travel planning business; you can visit his website.
Transcript
welcome to glass half full with leslie krongold she shares her stories experiences and knowledge of living and coping with a chronic health condition learn about tools and resources and hear inspirational interviews that help you to live a life filled with quality and dignity with two decades of support group leadership leslie’s ready to help you make lemonade out of life’s lemons are you ready are you ready hello and welcome to the next to last episode for 2019. i’m planning to get the last episode out in just a few days before i head out on my holiday road trip
so this episode has an unusual title neuro zoology which i will explain to you my two guests are both guys i knew from high school actually i think we met in middle school in south florida the first one is mark and the second guest is steve in the in the past few years each of them told me about their neurological conditions i think it was probably through facebook and mark has multiple sclerosis and steve has parkinson’s disease and each one asked me to maintain their privacy until recently they knew i was interviewing them for this podcast episode i i wasn’t spying on them i promise so we all grew up in south florida went to the same middle and senior high schools and developed neurological conditions in our adulthood and we actually all went to the same synagogue at first i was going to call the episode neuro jews sounds like you know super heroes and then steve suggested neuro duology and i kind of like the sound of that so there was absolutely no known correlation between being jewish and having a neurological condition you know that right okay we’re we’re just having a little pun fun my first conversation is with mark who still lives in florida and steve now lives in new york anyhow so mark no longer works full time i believe he and his wife have three children though i think they’re more like teenagers and young adults i haven’t i haven’t seen mark in many many years but our high school reunion is next year so i hope to see him i asked mark how he discovered he has ms so i woke up one morning i woke up one morning and the part below my knees and the part uh this the part below my elbows were numb and the numbness was like you know if you sort of lean on a place too long and your hand arm goes to sleep and you have to shake it out and or you lean on something like you sit on your leg and it goes numb and you sort of like have to shake it out to get going well i woke up that way and i was like that’s kind of weird and it didn’t go away and so i think it might have been a friday on monday i went in to see a neurologist that a neurologist said there are a couple of ways to confirm whether you have ms ms is can be confirmed by basically doing taking fluids out of your spine and doing a test or like the name sounds you have more than one episode on more than one date so he did an mri i had active lesions at the time a demolition of uh the tissue and it looked like i had had a couple of points that in the past had been uh part of it he said it’s probably ms but until we see another active lesion or a next episode we can’t absolutely say ms and he says at this time we’re gonna just go ahead and not put you on the medication well uh i’m gonna say within a month i had another lesion did another mri and uh they confirmed that i had ms so it really just started with my below my knees and below my arms not being able to feel see you were scared no it scared the wrong word for it i was concerned something else was going on something was going on and i’m reasonable and when i always tell people just act as a reasonable person will and if a reasonable progression is to go see a doctor about what’s going on that’s what you do and i talked over with my wife and she’s like yeah i think the right doctor is a neurologist and that’s where i went so i mean if you wake up one morning and you can’t feel your arms you say well you know maybe i’ll wait a day maybe whatever i did or you know pitch nerve or whatever it’ll go away now in the ms world uh if something is happening for more than two days on the third day they want you to seek uh attention usually that’s in the form of depending on your doctor a steroid drip and an ib to stop or lessen the impact of the demonetization so i luckily had gone and had sought early treatment because it did stop that in its tracks well floated enough so that there was no more damage and then um it’s all about how much of the feeling returns when the episode ends so that’s how it started uh and that was 2006. so had you ever had you known uh family or friends with ms before your diagnosis no i was the first person i knew that had ms i don’t even remember hearing rumors about other people but of course once you have it you start to hear more and more but no i was the first person i knew who had it i remember thinking that you know this is 2006. so i remember thinking that i don’t want to make things worse and so i struggled a little bit with whether or not since it happened while i was sleeping whether or not the way i was sleeping was causing anything of course i was naive at the time and so other than trying to do the right things i didn’t really freak out to be honest with you what i all i did was i went to the websites and i read as much as i could read about all the medications read about all the treatments read about what a diagnosis is um i got myself educated and i’m way more educated than most people on it right now and in that first month i would say i read hundreds of pages on ms like literally hundreds well huh did you uh when did you decide to tell your children well it’s the weird thing is i tell my kids everything i mean they know absolutely everything i’m pretty sure i told them that first year but not just right away i’m going to say i probably told them by the end of 2006 but i don’t think i did exactly right away um no i take that back we had a trip planned in august and this happened in early early june and i remember telling them in august and saying to them that nobody else knows because we’re going to a family wedding nice and talk to them and say hey this is private don’t say anything about you know anything that’s going on with regards to that and so i talked to them about it then so i’m gonna say i waited probably just two months so i’m not sure when you and i connected and and you told me i feel like it was maybe three or so years ago but maybe it was more or maybe it was just about three years ago but i know that you asked me not yeah you asked me not to tell anyone or i i didn’t of course i wondered like what’s changed for you since then because obviously you you’re doing this podcast you know uh interview so something changed i’m not sure you know that life isn’t just about an evolution of growth and change and changing your perceptions on things and i think one of the things that’s changed for me in that time frame is i have way different outlooks on the way you should live your life the way that you should go forward in other people and i think that ultimately i decided that i wasn’t going to hide it but i wasn’t going to flaunt it and so i thought you know what you asked me once i’ll circle back to it it had been in the back of my mind anyway for when you first asked i was just hesitant at the time because uh quite honestly i figured that we probably know 300 of the same people you know something some absurd amount initial hesitancy and i think i’ve decided along the way that there’s probably enough people who do know that it’s probably not that much of an issue anymore to come out but i think the reason i overall never said things to people and i still don’t prime at a to a large extent leslie is because and maybe you can be reflective of this that the first thing out of people’s mouths are how you feeling i i i don’t live my life harping on how are you feeling answers um i’d rather just be perceived as you know uh yeah just being able to you know have a normal conversation instead of always harping back to you know a disease or or a symptom or something that’s pulling i just don’t i just don’t like harping on stuff like that i i tend to gravitate towards positive things and stay away from negative things um and it i just don’t feel comfortable talking about myself that way a lot of times so that’s probably one of the reasons that i was hesitant anyway all along have you been able to connect with others with ms perhaps younger folks or people you know newly diagnosed i guess it goes without saying in a way having read all about the stuff i’m very well educated on it and being very well educated on it sometimes when you talk with people who aren’t ms patients they don’t quite understand they have a perception of that i should be in a wheelchair that i shouldn’t be walking that i shouldn’t be doing this and everything like that and i’ll give you a little side story on that and then there’s the other side is that uh the people who are newly they just want to get educated so i tended not to really be in a lot of support groups or anything like that i’d let my neurologist know if he had some briefly that some of the people have expectations of what your physical symptoms and restraint should be and um i was carpooling with a another mother or kids to school last year and i said hey i’ve got to do an mri uh and something in like march or something and she said no problem i’ll get them at the end of the day today and then something in passing i mentioned like yeah just you know i had headaches today and stuff like that it’s sometimes it’s a side effect you know that you get and so she then heard me it’s like oh yeah that’s right you have ms her she decided that it was no longer safe for her daughter to be driven by me around you know i so you can’t change people’s perceptions sometimes because it never would get resolved i gave her every logical explanation i could but you know she was trying to say well what does it feel like early on i said you know i once heard somebody in adt say what their neuropathy felt like and i said it’s very similar the pains are very similar the issues are very similar but i don’t have neuropathy i have ms i don’t know in her head where it got all jumbled i don’t know how much it was a discussion at home with her husband but it just fell apart when she learned i had ms and i think that’s kind of ridiculous to be honest with you but everybody has their own neuroses let’s put it or bring their own issues to the table but i sort of think that’s ridiculous because people are people you know i asked mark if he’s tried any alternative modalities to relieve some of his symptoms early on i had trouble sleeping i don’t know whether or not because the numbness you know there’s a there’s a period of uh self-awareness and when you quiet down at night and it’s just you thinking and you’re not moving you can sort of feel that there is numbness and it doesn’t feel right you can you can sort of hyper focus and i could fall asleep with my arm under the pillow and it would get 10 times worse than being numb and uh those types of things and you just know you’re not yourself so first thing i did is i reached for um acupuncture and i went to acupuncture and i told myself so that worked for me my wife was like you should go to a chiropractor too i was like what for so i went to a chiropractor and he’s like you know if you give me 10 weeks i might be able to open up some of the uh things that are i don’t even know how he put it but it he made it sound like i’ll be able to open up the pathways of your nervous system by allowing your uh structure to be realigned correctly i was like wait i don’t think you quite understand the nerves aren’t there to be allowed to breathe so but i did give them a little bit of a try and of course it did nothing so what kind of advice if any do you have for someone newly diagnosed with ms well i think the first thing you do is you get yourself educated um obviously there are uh different what the medications are what the choices are and to find yourself a neurologist who will spend the time necessary to answer your questions instead of just push you out of the office because he has an appointment in five minutes so that would be my overnight you have time to learn everything you have time to make decisions just getting a new diagnosis doesn’t mean oh my god i have to change tomorrow or i have to do something in the next two weeks or this you don’t you just proceed as a reasonable person word if they tell you that you need to get an mri to go ahead and confirm what’s going on you schedule it you do it
when you look at somebody who has ms and given that i just said that the attack could be in so many different places that you have to sort of realize that there is a broader spectrum within the disease that doesn’t mean that somebody is necessarily going to live the stereotypical worst case lifestyle or is going to die and i think that having that sympathy towards other people because you’re gonna have to uh learn that others will have their own preconceived notion towards you will give you a little bit of a better aspect of what’s going on the other thing i’d almost pinpoint every lesion i’ve had and say man that was a during a period of time where i just was not under a lot of stress and so to me i think that if i was going to give advice keep things around you that are positive don’t surround yourself with negative reduce your stress that i’m talking to you today and that is something that helps you feel better about yourself and what you’re doing a midst of everything else that’s going on and i think that’s always a good thing when you can feel good about some other things that you do for your you know to for other people and you can feel good about yourself like yeah i’m fine man no worries i’m good and so i just think that that overall surrounding yourself with that positivity and that experience leads to better health and i don’t know i mean that might sound crazy to a lot of people but i just i just feel him and trying to stay positive and my kids have noticed the change as well in the last couple of years and um they’re like work as well anymore to just lose your temper but uh the second reason is because what good’s it gonna do right so steve as i mentioned lives in new york in fact i saw him just about two years ago on a trip to new york we had lunch and caught up it had been many years since we’d seen each other maybe since we graduated high school anyhow his work for most of his career was computer related and i know a few years ago his organization downsized and he decided to start a venture that he’s long been interested in travel planning so there’s a link to his website in the podcast notes so i know a few years ago uh you know you sort of personally came out to me as having been diagnosed and you didn’t want to talk about it but then i saw you a couple years ago and it seemed like you were talking more about it where are you at now with you know discussing your condition
um i don’t talk about it with too many people because some of the reactions i get to well well they don’t want to really seem like they’re just like the way they respond like oh that’s too bad and kind of blow it off they don’t realize that they could they could really be offensive but that happens a lot and i you know i’ll tell i’ll tell some closer people to me and you know i know they’re they’re they actually have feelings and care about each other so you know the the acquaintances i have on facebook they don’t they don’t really need need to know about medical conditions of each other can you tell me what led to your diagnosis of parkinson’s you know when did you have your first symptoms were you diagnosed with any other conditions and then you know gradually found out that wasn’t correct tell me tell me about that journey may not be in chronic chronological order i got diagnosed in 2012 with parkinson’s
my wife she sent me to my primary care doctor said you got to go to he goes no i’m usually wrong 100 chance it might be parkinson’s disease and you know i i know parkinson’s diseases i think michael j fox says i don’t know much more than that and i’m like really he goes yeah but i’m usually wrong about these things so i went to a neurologist a neurologist he tested me with a bunch of tests which don’t really tell you if you have parkinson’s or not but it rules out other illnesses but the true test is when you use a levodopa carbidopa if you react to that then that’s like yeah that’s then you have parkinson’s because it’s the treatment for it so i went back to my primary doctor and i said yeah did you you know did you really think it was 100 chance because no i knew exactly what it was i just want to freak you out i have a pretty good primary doctor it’s like i hear stories that people get a real run around like you have this illness you have bad illness and it’s like it could take years before they come up with parkinson’s and you know while they’re suffering and taking the wrong medications yeah what led up to that was i had non-motor symptoms there was a mood changes
obsessing over different things and this was going this was going on over several years before 2012. so you know this you can go year and like not get diagnosed for years like that’s weird i don’t you know you don’t really pay much attention it’s like i don’t smell things anymore i didn’t realize that
friends at work like my pals at work noticed there were some weird things going on but they didn’t really say anything because after i got on medication my boss made a comment hey steve’s back and i thought that was that was very weird and i you know i was talking to my wife about that and like it’s weird right my boss said steve’s back and she kind of she got it right away like you know the pers person with my my personality changes isn’t the person that she met and then all of a sudden he’s back like after after one day of being on the medication there’s also other symptoms like sleep problems i was acting out dreams like waving my own uh interesting one i lost like 10 10 15 20 pounds real fast and the guy running the department he’s like you lost a lot of weight steve and he pauses and he’s like i hope it’s all for good reasons it’s like he kind of got it too there was something weird going on but he didn’t say anything did you seek out any support groups because i know parkinson’s has a lot of different programs you know all the movement classes tell me some of the things you’ve tried and what has helped and what you you know found no use or or help from i went to several support groups and exercise programs when i mentioned the lack of initial lack of of initiative and apathy that’s that’s really a strong part of the young onset parkinson’s disease groups i’d go to the meetings and it was just me and the organizer then a month later i go to the meeting and me and the organizer and so so i’m like what’s what’s with the city of millions of people don’t they they must have they must have some people with young onset parkinson’s that want to go to a group or maybe they just don’t want to hear about it i’ve got an email address we all exchanged email addresses over a couple of months so i had a list of email addresses and i was like all of a sudden i feel like i’m the organizer of the group so i’m emailing people and i’m helping people out because i’ve been been diagnosed since 2012 this people that just got diagnosed a year a year and a half ago maybe just even a couple of months ago and they’re scared and they were like what’s going on i want to hear from somebody that’s not 90 years old you know what’s going on with you so i’m i’m actually unofficially running the young onset parkinson’s group for new york city and i’m looking for yeah and i’m looking for a new location to meet so i’m looking for like a meeting space up this way and i’m trying to get creative and not like go into a hospital environment so i’m looking for i’m looking for a meeting space at one of the museums i think that’d be really cool
and one guy showed up and me but we had conversation he was he was asking a lot of questions and i was i was happy to share my experiences and it was it was a great support group meeting it was two people it doesn’t doesn’t doesn’t take 30 people in a room to make a good meeting you know it’s like it’s not not the nothing asses in the seat it’s the quality of the people coming in so there is another guy he keeps emailing how many people were there how many people were there and i’m like you know it’s like what is there a cover charge ten dollars a person like it’s it’s all in the quality of your conversation
i was doing a weekly yoga class and i found one that was charging just like a free class in the community around here i was i tried i tried boxing dude it’s not that’s not a contact boxing like you put the gloves on you get a bag and that that really aggravated my my elbows so i don’t know what i was doing wrong but i’m willing to try that one again i did a or i’m still doing it there’s a dance class at juilliard dance class dance dance for parkinson’s is the group and they they hosted the free class and you just got to get evaluated and you go to the class every every week you you do a little you don’t do much dancing it’s like that’s like an extreme thing but you you move around you’re stretching out your muscles and getting out of your house and most most of all i do walking i could walk three four or five miles a day and it’s only because i’m getting lost and i’m looking for no that’s not true i’m just kidding no it’s like you know i’m fortunate to be in new york city where it’s a walking city and i live and live towards the north end of town and i’ll just i could walk easily two to three miles and just keep going down the streets or maybe if it’s a nice day i’ll walk through central park but i i like the city city walking better than the park walking park i like to sit in
so what kind of advice would you offer someone newly diagnosed don’t freak out whatever people tell you may or may not be true for you uh every every single person with parkinson’s has a different type of different type of progression and their symptoms are different some people shake like their hands are shaky they can’t pick up a glass of water without spilling it some some people don’t have any shaking and some people have internal shaking that’s that’s my main advice i went to a support group right after i got diagnosed and they had a guest speaker come in and she was like do any of you have dissed this and this and i was looking around and like nobody really responds well you’ll get it she was like the wicked witch of parkinson’s yeah she she ran a group in another city and she was just speaking in in our group especially like you know if you you don’t have anything nice to say to a group of people that just got diagnosed just don’t don’t say it yeah just shut up
i hope you’ve enjoyed meeting mark and steve i don’t believe they’re in touch with each other but i found it very interesting that their perspectives are similar if you have a comment about the episode i hope you’ll visit the glascefl website and share your comment below the podcast notes so stay tuned in a few days for the final podcast episode of the year and it’s all about
sleep thank you for listening to glass half full leslie invites you to leave a rating and review on itunes this helps spread the word to others dealing with chronic health issues for show notes updates and more visit the website glass half full dot online.online
Practicing Pilates can be done on a mat or with any number of devices such as the Reformer. Shannon Knorr, a yoga and Pilates instructor, talks about therapeutic Pilates to help with body alignment, pain relief, and more. Julia Carver, a Pilates and Movement Therapist, works with veterans who have experienced PTSD and other trauma to help them with neural reconnection.
For people with muscle weakening conditions, like muscular dystrophy, Pilates can help strengthen core muscles.
Vocal problems can occur for people with all types of conditions — Parkinson’s disease, muscular dystrophy, stroke. Acute laryngitis is very common while chronic laryngitis affects over 20% of the population.
Christine received a diagnosis of spasmodic dysphonia and now experiences some relief with botox shots. Hanna, who has SMA type 1, uses assistive technology to help her communicate. Check out her website to watch a video demonstrating how she uses the technology.
Transcript
welcome to glass half full with leslie krongold she shares her stories experiences and knowledge of living and coping with a chronic health condition learn about tools and resources and hear inspirational interviews that help you to live a life filled with quality and dignity with two decades of support group leadership leslie’s ready to help you make lemonade out of life’s lemons are you ready are you ready
hello and welcome to the podcast i’ve been toying with this topic of vocal problems for a while but after being sick for three weeks and not being able to communicate verbally for much of that time i realized it was time to tackle the topic
i have a couple of guests i’ve interviewed no experts no speech therapists just people who have shall we say challenges using their voice to communicate a lot of people experience this at some point in their lives for example laryngitis there was acute and chronic laryngitis the only factor that i could find was for chronic laryngitis which stated that 21 of the population may develop chronic laryngitis that’s really surprising so i’ll assume that a much larger percentage of people will experience acute laryngitis i certainly have laryngitis is an inflammation of your larynx or voice box it happens from overuse irritation or infection your vocal cords are within your voice box and are vital to your breathing swallowing and talking
all i know is that when i have some type of respiratory condition i have difficulty speaking because i cough and choke and if i’m able to squeak out a few words they’re really hard to hear and understand i also suppose men difficulty is more related to having a muscle disease which affects my breathing swallowing and talking and by the way chiquita is making noise in the background um she doesn’t like when i talk about problems of any kind so just ignore her she’ll stop after a while thankfully i’ve recovered but i know my voice is weakened and i notice this if i listen to my earlier podcast episodes from three years ago
in the past three weeks i curtailed much of my interaction with humans except for my spouse i found some relief using a couple of technology tools one is using the text to speech feature in microsoft word when i had something substantive to communicate i sat at my computer composed the lengthy message and had jessica sit down and listen to one of four assistants communicate for me you’ve been listening to samantha
but perhaps you’d rather listen to victoria victoria speaks a little slower though there is a pacing feature available for each of the voices to mix things up no one says i can’t have alex speak for me or fred fred likes to speak for me too but sometimes i just want to shut him up shut up read okay
sitting in my computer can get to be a drag so there is a text-to-speech feature in notes on my iphone this can come in handy but be careful about spell check because it could make communication efforts even more difficult
so that’s how i got around for three weeks how do others do it vocal problems exist for others with neuromuscular disease parkinson’s disease stroke and a number of other conditions you’ve likely never heard of my friend christine who is a retired nurse and writer shares her story of getting an accurate diagnosis for her vocal problems
when did you notice something was unusual with your voice was it a a dramatic change did it happen gradually or did someone bring it to your attention i think maybe eight to ten years ago i noticed that my voice was different and it was very gradual no one else brought it to my attention but when i described it to my primary care physician she immediately said she knew what i was talking about so it was clear to her that something was going on and was she the one who diagnosed you no she referred me to an ear nose and throat doctor i think now they call them head and neck surgeons but that was the first step of a pretty long process trying to get diagnosed oh really so what did they first what did the ear nose and throat doctor think well the first one thought that it was probably either acid reflux or allergies and he prescribed a neti pot as you know sinus rinse device and medications for acid excess acid and that didn’t really make a big difference at all so um i you know my primary care physician moved on and i had a different one and she sent me to another ent doctor who sent me to a speech therapist he said i had some later i found out that he called it dysphonia but he didn’t tell me that he just said i’m going to send you to a speech therapist who can help you correct your speaking and so she saw me for about 10 or 12 sessions and she never mentioned spasmodic dysphonia and i didn’t see a lot of improvement i i hung in there because i thought maybe it was helping but it didn’t seem too really
well she just had me breathe breathe more effectively from my abdomen and make sure that i was really projecting my voice and leaning forward and she had me do different sound exercises that she said might help and i didn’t notice any change really and then one day i was talking to a friend and and she is in ohio and she told me that this npr radio personality diane reem sounded a lot like me and that she had this condition so i mean you know she couldn’t remember the name of it but that she had talked a lot about having some voice condition so i went into sleuthing mode and i eventually found diane riemann that she had spasmodic dysphonia and there is a national association that that deals with spasmodic dysphonia at dysphonia.org and i went there and i listened to some they have sample voices there on the website and i was just so stunned because it was like listening to myself so i um i sought out i on the website they because this condition only affects um they estimate about 50 000 people in this country so a lot of doctors haven’t really run into it in their practices so on their website they list doctors who have some knowledge of the condition so that’s how i got finally an official diagnosis and i started the treatments with botox which help with the the spasms that occur with this condition it’s a neurological thing that causes spasms in the muscles of the larynx that cause the voice to sound quite strained and the botox actually relaxes and paralyzes those muscles and doesn’t really for me work too well but it’s a small improvement and the the downside with botox is that you have a period where your voice is very soft and kind of breathy and i just had a treatment about two weeks ago so i’m in that phase right now how long does it last when do you how frequently do you get the shots
well this condition is not predictable everyone seems to have a different reaction they don’t have a specific dosage that they recommend for everyone so they start you out usually with a very small dose and then depending on how that works they increase it and people have quite different reactions some people go can only it only lasts for a month or two other people it lasts six months for me it seems like it’s two to three months that it lasts and it’s for me not a perfect treatment my current doctor who has a lot of experience with this told me that i have both spasmodic dysphonia and a vocal tremor and the botox only helps the spasmodic dysphonia which causes breaks in the voice but it so the botox helps the breaks but it doesn’t help the tremor so it’s only partially effective for me what if anything helps the tremor
nothing that i’ve found and so you went to a support group can you tell me about that you know what you know was it helpful the experience do you continue to go um yes i go whenever i can i think it’s because this condition is not very well known people who are diagnosed are really eager to talk to others who have it and find out how they’ve coped with it and what has helped and what hasn’t and which doctors have been helpful and which have not so i found it to be really good um we share our experience with whatever treatment protocol you know the frequency and the amount of botox and we talk about tools that we can use to minimize the impact of of the condition so yeah i i can’t think of anything negative about going it’s been really helpful for me when are some of the tools that you mentioned well for example the let me think the center for independent living in berkeley and alameda they have you can get a special telephone that helps you be heard better i haven’t tried it yet so i can’t speak to exactly what it does but they’ve been working on the technology for not just this condition but for many conditions related to voice and being able to be heard on the phone and so that was we had a speaker come who talked about that oh sometimes we do relaxation sessions and we’ve had speech therapists come who recommend certain practices when you’re trying to project your voice more effectively so that kind of thing that’s great does anybody know why it happens all of a sudden because i mean you spent right most of your life without it until wouldn’t you say about eight years ago yeah yeah um they don’t know what causes it some people actually get it as teenagers others it’s more commonly it more commonly develops in middle age and and older middle age and older they don’t really know there is a fair amount of research and the national association i mentioned is trying to fund some of that research i participated in a program through ucsf where they’re trying to look at what the causes are and you know determine how to address the problem more effectively you come from a large family none of your siblings have have this condition no no okay i i don’t know anyone else um in my family and you had told me some famous people who were the famous people you mentioned
well diane reim is one of them scott adams the cartoonist is one
susan collins the senator from maine if you listen to her you can hear the breaks and the hesitation in her voice john f kennedy jr the let’s see i guess he’s the son of robert kennedy he has it yeah that’s pretty good for having such a rare condition to have all these famous people i i you know my disease there’s no one famous so oh no really oh that’s funny i’m sure there are famous people they just i don’t know maybe because they’re not using their voices they can hide out more effectively
recently i read a blog post by a neurologist who had to leave for medical practice due to her advanced parkinson’s disease one of her symptoms hypophonia affects her voice making it soft and difficult to hear she’s been able to resolve this with an increase in medication of the vodopa and speech therapy
earlier this year i was at a seminar given by our local muscular dystrophy association office in san francisco i had the opportunity to meet a young woman with sma spinal muscle atrophy named hannah eid hannah was one of the presenters and discussed how she opened an able account an able account is a tax advantage savings account for individuals with disabilities and their families and these were created as a result of the passage of the stephen beck jr achieving a better life experience act of 2014 and abel able is the acronym i wasn’t so interested in the able account but what made hannah’s presentation so memorable is that she used computer technology to deliver it here’s a brief interview with hannah
at what age were you unable to use your voice
i have had a trick in ventilator since i was six months old so i’ve never been able to speak locally ever i’ve been using some sort of communication device ever since i was three years old and how old are you now
i’m 22. and so can you tell me about the technology that you use now to help you communicate
i use a communication device called adobe i use a switch with my right hand and it scans around the screen and i select the button i want
you select the button with your finger
yes and is this the same technology you used when you were a child or has it changed
i’ve been using a tobii device since january of 2018 and i absolutely love it it’s also a computer and that’s really cool because i don’t have to use laptop anymore before i use a device called dynavox and i could use any pc computer with a remote control code and access it and it was great for having a communication device and a computer in one is so convenient i also don’t feel limited vocabulary wise because the toby has great word prediction whereas with the dynavox i had preprogrammed words and the spelling prediction wasn’t great i do have set up pre-programmed phrases on my topi so i can talk quickly otherwise i type it out which takes more time but it’s worth it as you can see i like to talk well that so that’s wonderful that the technology has improved and it’s just helped you create uh you know be able to communicate more clearly and naturally
absolutely
so i didn’t have any more questions would you like to add anything
i do freelance web development so if you know anyone who needs the website i’m your gal okay so maybe you can send me a link to your website through facebook and i can include that of course
thank you so much for having me leslie you’re welcome i appreciate it hannah and i will see you on facebook
have a nice day thank you you too bye bye
although we each have different conditions we share a similar symptom albeit to varying degrees the big takeaway for me is that we can learn from each other we can learn about coping mechanisms assistive technologies and other resources tools or hacks thank you to christine hannah and that doctor with parkinson’s for sharing your stories
thank you for listening to glass half full leslie invites you to leave a rating and review on itunes this helps spread the word to others dealing with chronic health issues for show notes updates and more visit the website glass half full dot online glass half full dot online
A brand spanking new podcast episode will appear…hopefully before the end of the week. It will be Food = Medicine: Mushrooms. But, for now…check out these Food = Medicine podcast episodes:
An interview with Sandor Katz – the Fermentation King
Food = Medicine (1) – featuring two mostly plant-based consuming friends, one with DM1, the other with DM2
Food = Medicine (2) – an interview with Jill Nussinow, R.D., The Veggie Queen
Food = Medicine: Cooking with Love – featuring a chef who prepared special foods for her father with Parkinson’s disease, an organic farmer, and a chef who prepares foods with cannabis
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
In the continuing series, Food=Medicine, Cooking with Love explores different interpretations of how love can be a vital element in the food we eat. Whether it’s part of the mission of a local organic farm, a vegetarian chef preparing pureed, nutrient-dense food for her father with progressive Parkinson’s disease, or another chef infusing fine dining, multi-coursed meals with cannabis — each guest offers a fresh perspective for mindful eating.
Lacey Sher, owner/Chef of the Encuentro pop-up restaurant in Oakland, CA shares two recipes for nutrient-dense smoothies. Aleta Pierce, farm manager for Alameda Point Collaborative’s farm2market program, welcomes farm volunteers and CSA subscribers. Michael Magallanes, San Francisco-based chef, prepares meals for private clients.
Sweet and Green Protein Smoothie
hemp milk, coconut water, or spring water
handful organic fresh or frozen blueberries
handful organic fresh or frozen raspberries
4-5 leaves of lacinato kale or romaine
handful of parsley
2 scoops hemp protein
3 pitted dates
1/2 avocado
– add ingredients into your Vitamix or blender
– blend together until super smooth
– pour into your favorite to go jar or mug
– sip slow and enjoy!
Berry Banana Antioxidant Booster
This smoothie is full of colorful foods, such as berries and cacao, which are loaded with a wealth of vitamins and antioxidants to help the body stay strong and vital. Plus with B-vitamin dense maca, omega rich hemp seeds, and beauty boosting coconut oil, this smoothie is filling yet completely whole and natural, assuring optimal function of body and mind. Enjoy!
3 cups of water or herbal tea
1 cup frozen organic blueberries
1 cup frozen organic strawberries or raspberries
1 frozen or fresh organic banana
handful of cacao nibs
2 tablespoons raw coconut oil
1/3 cup hemp seeds
2 tablespoons maca
1/2 stick vanilla bean or ½ teaspoon vanilla extract
optional: 2 tablespoons spirulina, your favorite green powder, or vanilla
Sweetener of choice: 3 tablespoons honey or agave, 2-3 pitted dates, or 3 drops stevia (Stevia is very sweet and strong. Use the least amount to taste.)
– add ingredients into your Vitamix or blender
– blend together until super smooth
– pour into your favorite to go jar or mug
– sip slow and enjoy!
These are simple and delicious and folks can use less fruit for less sweetness. I also like to add different ingredients such as chia, moringa powder, sometimes different vegetables like cooked or raw sweet potatoes, substitute spinach for kale if I have it. So many options. ~ Lacey Sher
Resources for Dysphagia (Swallowing difficulties)
If you truly want to understand the mechanics of dysphagia, check out this recorded webinar with the author of the textbook, Dysphagia: Clinical Management in Adults and Children, Michael E. Groher, Ph.D. It’s about an hour in duration but you’ll have a much better understanding of what this condition is.
Here is a community-generated recipe guide for people with swallowing difficulties. Recipes were submitted by caregiving family members.
Here is a recorded panel discussion about food preparation for people with dysphagia. Additional resources can be found here.
More Food=Medicine Podcast Episodes
The first Food=Medicine podcast episode included Retired Navy Lieutenant Laura Root and Edibell Stone, LPC & health coach talking about their respective diets. The second Food=Medicine podcast episode featured Jill Nussinow, The Veggie Queen, at the Farm to Fermentation Festival. Jill is a Registered Dietician and author of cookbooks and DVDs. If you want to go deeper into an understanding of fermented foods and their healing properties, check out this episode with fermentation guru, Sandor Katz. This episode explores the ancient tradition of Ayurveda through one woman’s health and diet journey.
In the continuing series, Food=Medicine, Cooking with Love explores different interpretations of how love can be a vital element in the food we eat. Whether it’s part of the mission of a local organic farm, a vegetarian chef preparing pureed, nutrient-dense food for her father with progressive Parkinson’s disease, or another chef infusing fine dining, multi-coursed meals with cannabis — each guest offers a fresh perspective for mindful eating.