Category: Technology

  • What is AAC (Augmentative and Alternative Communication)?

    My guest for this Glass Half Full podcast episode is Patrick Regan. Patrick is a young man living in Alaska with SMA (spinal muscle atrophy) who uses AAC to communicate. We’ve gotten to know each other through online BORP classes — Tai Chi and Pilates.

    Our communication previous to our Zoom podcast recording was through Zoom’s chat. Patrick is not able to speak and uses technology to communicate via text or assisted speech.

    Our podcast recording was the first time I actually saw him live since he usually has a photo of himself in the Zoom window. And he varies the photos so I’ve seen him dressed up for different themes especially in the Rumba with Tina dance class.

    Anyhow, Patrick has proven himself to be quite tech savvy and I wanted to learn more about the AAC (Augmentative and Alternative Communication) he uses.

    To watch this recording on YouTube, click here.

  • Hug A Tree & Live Longer

    Hug A Tree & Live Longer

    This month we have both Earth Day and Arbor Day so it’s high time to be amongst the trees. Even if you are hunkered down in the safety of your home during the pandemic, you can still derive healing benefits from gazing out of your window at nature’s bounty. If your window faces man-made materials, there is science proving that a photograph of trees can impact you in a positive physical and emotional way.

    Verla Fortier, RN, author of Take Back Your Outside Mindset: Live Longer, Prevent Dementia, and Control Your Chronic Illness, shares some of the research she found about the healing powers of trees and nature. Diagnosed with systemic lupus, she was told to stay indoors to avoid the sun. And she did. Until she witnessed a noncompliant online support group participant.

    Katherine Chen, meditation teacher, talks about Bodhi Meditation and its connection to nature.

    If you can, go outside and hug a tree. And if you’re not sure what kind of tree you’re hugging, download a smartphone app:

    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 yesterday was earth day and tomorrow is armor day did you realize that arbor day is a holiday when people are encouraged to plant trees it started in 1872 with a man named j sterling morton in nebraska when he proposed the tree planting holidays and i guess it took off my love of trees has grown over the last few years i had my first forest bathing experience i virtually met verla fortier who wrote a book about the healing benefits of trees i started practicing bhagwa meditation which involves walking around a tree and the past six weeks the trees around my neighborhood represent the greater world outside of my home on our daily walks i’ve grown to really love a few specific trees and i’m motivated to learn more about different types of trees last month human furla in the podcast episode coping with coronavirus trees yoga and essential oils today you learn more about her journey to wellness brother brother lives in canada and spent her professional career as a nurse i asked her what led her to become a nurse probably started when my i was in high school my dad was diagnosed with ms and quite quickly moved from one cane to two canes to then a wheelchair and he was just such a lovely guy that i wanted to be around him and help him my mom taught me how to transfer him you know from the back uh you know things like that and uh you know i would get him up and then brace his knees against mine and push his knees back so he could stand up and then get him into the chair and then we’d laugh and i remember him just swallowing taking some time and then saying you know you did a great job there good for you and then giving me a big smile and that that was so nice and that happened so often whenever i helped him with anything and uh was such a positive sort of it was a natural for me to go into nursing and my mom was the same way so there was three of us girls the whole family we all we all did very well with with his ms and with and we were happy to have him um like a little hot shot i started out in the hospitals and the technical side of things in intensive care and all that and then quite soon became well i went over to india and found out that healthcare was more about you know public health and shelter and food and water so when i came i was much more interested in primary care so i don’t know how things are set up but in canada the government pays for the health care so all the money goes to hospitals and then they’re very well funded and then the rest of it goes to uh doctor’s offices so my interest was in getting more of that money and resources back into the community where we all are and sort of enriching that brother moved up the corporate ladder in her career and also taught at a university i asked her when her health took a downward turn to tell you the truth i was not really aware of how i was feeling uh for a very very very long time i i remember that we were this happy little family um you know this nuclear family mom dad and two little boys in large home in suburbia and then one day my ex-husband walked out the door and i had two little kids and i knew that i needed to keep them in their home and in their community so i walked over next door to the university and picked up a an additional full-time position there so i was i loved it i mean i loved i loved all the work and looking after the kids but i was just looking after everybody else’s needs for 10 or 15 years i think and if i had symptoms i just only just i didn’t do anything but work and look after the kids and sleep and it really wasn’t until they were university age that i just felt profoundly tired and i just thought you know i was 63 i thought i’m just aging and i found it difficult to walk but i always had but when i went to the gym that worked that you know that helped and um but i had i was i wasn’t able i was 63 so i really wasn’t able to do my work anymore at the university i just felt too tired and so i thought i think i’ll just go home to my to my town so i retired early and i thought oh i just can’t wait to get there you know i was thinking of all these uh things i would do swim in the lake and lie in the warm white sand and walk in the woods and you know i was really looking forward to it um yeah and then then that’s when i got my uh diagnosis i was diagnosed with uh systemic lupus and on the my blood work showed that i was on the you know the serious side of that and and when i saw my doctor i was just going in for a routine i had this rash on my face and uh but then she long time and she kept finding more rashes that i’d ignored and then she found big bald patches that i’d been covering up and ignoring too on the top of my head and then she asked me how was my joints and nerve pain and i guess yes i had that and and then she reached for my hands and she said we’ll do biopsy blood work but we’re looking at systemic lupus and um and she said and stay out of the sun because that could symptoms so at that moment i was just um i felt like all my dreams were of retirement were shattered right yeah so i but go home yeah i did go home and then i stayed inside was diagnosed with systemic lupus and on the my blood work showed that i was on the um you know the serious side of that and and when i saw my doctor i was just going in for a routine i had this rash on my face and but then she long time and she kept finding more rashes that i’d ignored and then she found big bald patches that i’d been covering up and ignoring too on the top of my head and then she asked me how was my joints and nerve pain and i guess yes i had that and and then she reached for my hands and she said we’ll do biopsy blood work but we’re looking at systemic lupus and um and she said and stay out of the sun because that could symptoms so at that moment i was just um i felt like all my dreams were of retirement were shattered right yeah so i but go home yeah i did go home and then i stayed inside having read verla’s book i knew there was a happy ending i asked her how she came around to taking a chance and not following the doctor’s orders what convinced her that the outdoors had something healing to offer her remember the day leslie i was just lying in bed scrolling through i joined every online lupus support group i could and i was i’m so used to leading them that i wasn’t even used to being so i didn’t even comment or anything i just scrolled and uh people were talking this one day about how we were all inside feeling like vampires and we had to avoid the sun because they do tell lupus patients that and uh then there was this one healthy looking person pretty healthy who had lupus and she said ongoing outside so far so good i put on my hat and sunscreen and and i thought what and by this time i really didn’t care anymore i thought i don’t even care if i get it you know if i damage my dna or whatever it is i’m going to go so i just was angry it was high noon i grabbed my hat and slapped on a bit of sunscreen and headed out i didn’t care and

    i was walking for about five minutes and i started to just feel this relief you know i tell the kids it was like a in the pac-man game where you die and you get a new life i was just like powered up powered up and i i mean it just didn’t even feel real and i thought what first of all i didn’t want to go in again and then when i finally got in i remembered i had a bunch of nursing research skills and what anything in the universities that’s peer-reviewed on on trees or whatever so that’s when i started doing that and i kept going out regularly and then i just devoured the research the first piece of research i came upon was gregory bratman at stanford university and they were defining their terms and they were saying we’re going to look at this particular kind of thinking and it’s this thing called negative rumination and it’s the kind of thinking that goes what if um what if i didn’t get this disease if only there weren’t an epidemic why is my body breaking down why is this pandemic happening why do i have to be inside those kinds of questions and a parent regular kind of thinking that’s just the brain going haywire and they were tracking this and they said they wanted to know what happened if you go outside so they got a group and they put them in built um settings along a city street with just you know traffic and cement and then they put another group outside in around grass trees and shrubs in an urban environment and they found the people that were in the grass trees and shrubs just looking out on the san francisco bay area that they they had they did not have that broken record thinking it did not go to that part of the brain that i call the heartbreak hotel part of the brain it just did not happen whereas the people that were outside in the city streets that broken record thinking which we all have to some extent right it what i liked as a nurse is that they measured that part of the the brain they measured the blood flow that went there and when that blood flow goes there that’s when the thinking is activated but it didn’t so that that i loved and then those same researchers took it further and they said if this is happening within their that when we go outside we pay attention differently we softly focus on all kinds of things our eyes wander and that gives us our brain a break and when it’s getting a break it’s it’s resting and that’s what we need so that we don’t get that cognitive decline if we’ve got that that those thoughts circling around in our heads all the time the brain gets no rest and that leads to loss of shortened long-term memory loss of ability to concentrate loss of ability to problem solve and i think we all know this like when we’re worried about stuff we forget you know we we’re not paying attention we and just by going outside this don’t have to meditate or anything this just happens and so what they showed in the restoration theory it’s a real thing and when we go outside our brain rests revives and it improves our short and long term memory our ability to concentrate problem solve and learn new things and so that to me was huge because i was worried about dementia my mom had it um and it’s that kind of thinking where you look back and you feel embarrassed and this was a gift a gift i encourage you to read brother’s book which you’ll find the link to on the glass half full webpage she did a lot more research about the healing benefits of trees and green space earlier this year i signed up for a class offered at our local parks and recreation center called bodhi meditation i’ve never heard of this type of meditation but it sounded intriguing the practice essentially includes a circular walking around a pine tree alternating hand gestures and then there’s a seated guided meditation it was both energizing and relaxing unfortunately the class stopped meeting in early march due to the coronavirus i contacted the instructor catherine chen to ask her a few questions the version of this meditation that catherine teaches is named bodhi meditation because the leader of the organization is called grand master jin modi yet the practice is called energy Bagua

    actually Bagua is they all starting from Tao dal permited energy Bagua so and then chibagua and the regular bagua the same however and there’s some development they am differently for example energy Bagua has been benefit a lot of people to improve their health physical health and mental health in many ways around the world but a lot of a lot of different practices is aiming different because some people learning other practice they have a different goal for us our mission is to impart this body meditation technique and to help others to eventually improve their health and improve their happiness and so what is the role of trees in the practice of uh you know an energy bang or practice

    when we practice energy Bagua it’s actually is the philosophy of Tao with the young you know is the energy that of energy in our life and it’s also not the energy itself only it’s also the compassion the compassion towards yourself compassion towards others so when you practice energy Bagua is that you are actually a practice that with the nature you are kind of connect with the future and then you uh through the practice that kind of create a peaceful and very calm mind and that would benefit yourself physically at the same time and so when we did it in class because the weather wasn’t good you would always bring a potted tree what was your intention have you ever done it without a tree indoors or do you always you know bring some sort of potted tree inside we can see if two different two different aspects for example whenever we whenever we go to the nature when ever we go outdoor we see screen we see is the tree we see the flower the ocean the mountain that make people feel energetic feel good and and that kind of atmosphere and also the element of the future the nature is help us so when we doing energy Bagua we are feeling that we are join the nature and we also have the sense of connection with the nature and we do have the uh the people in occasion for example they travel to other country they of course couldn’t have a good tree that they choose to practice so a lot of them might be able to just do a few gestures in the hotel room but in the way they practice with the guided meditation and then guided the the way like when when i was practicing with you guys yeah that possible occasion that people don’t have a tree but they can still practice it’s first of all is the the matter of the mind and the nature and how you practice because meditation energy Bagua is seen as walking meditation is a state of meditation so when you’re practicing it if you don’t have a tree uh you have another way to practice but have a tree is preferable i would put that way well it was it was definitely a nice addition to learn more about bodhi meditation there is a link to a youtube video on the glassful website and i’ve also listed a few smartphone apps related to trees many of which Verla mentions in her book although many of us are still staying home and taking all necessary health precautions we still may have the opportunity to walk in green space around our neighborhoods of course this may not be possible for everyone if you live in an apartment building maybe you want to avoid elevators and being around people but there are studies that just looking outside your window at nature or even a photograph of nature can have a dramatic impact on your physical and mental well-being i invite you to be more intentional to make the time for this 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

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  • What is a Voice: Communication Challenges

    What is a Voice: Communication Challenges

    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

  • Self-Care Challenge Anew

    Self-Care Challenge Anew

    Happy New Year! I think it’s safe to greet someone with this salutation for the duration of January. Somewhere, sometime, someone said…”you’ve got the entire month of January to focus on the new year…”

    …and make those ubiquitous new year resolutions.

    How’s that process going for you? Have you made any new year resolutions? Have you resolved not to make resolutions? If you’d like to know my advice — and I hope you do — focus on small, baby steps for new year resolutions. I explain this in a blog post for Brain & Life magazine.

    A great starting point is assessing your current Self-Care routines. Have they been working for you? Have you maintained your exercise goals? Have you been eating the healthy, well-balanced diet you envisioned? Are you still feeling harried like a bundle of nerves?

    If you’re not currently using the Health Storylines Tool to assist your Self-Care, then this month is a great time to start. Just download the free app. I use it on both my desktop computer and smart phone. And I have my FitBit uploading daily data as well.


    Once you have the app installed, check out the Tools Library.

    Browse through all of the Tools; consider how best to use them to assist with your Self-Care plans.

    You’ll notice there are many Tools available for specific conditions such as asthma, cancer, diabetes, epilepsy, COPD, rheumatoid arthritis, ulcerative colitis, and hepatitis C.

    Whether or not your condition is listed, I suggest adding the Health Routine Builder Tool. Here you create your baby steps leading a path of success toward reaching your larger Self-Care goals.

    Join us on the monthly Self-Care Challenge. To review past blog posts, check out this page. For additional coaching with achieving your Self-Care baby steps and goals, become a part of the Glass Half Full Facebook group.

  • Social Media & Chronic Health Conditions: Patients and Caregivers

    Is using Social Media important to you? Which platform do you use to find support from others with the same chronic health condition? If you’re a caregiver, do you access an online group to connect with other caregivers? Maybe you use social media to help educate or advocate for a particular health condition? This podcast episode explores how a variety of patients, and caregivers, use Facebook, Instagram and other social media platforms to do what they need to do.

    You’ll hear from people with chronic health conditions: Toni Bernhard, best-selling author, and in 2001, initially diagnosed with an acute viral infection—but has yet to recover; Chris Schlecty, a Microsoft software engineer in Seattle, living with limb-girdle muscular dystrophy and Dean Sage, an attorney in San Diego, diagnosed with myotonic dystrophy.

    Also included are caregivers — Loraine Dressler, retired nurse and caregiver for family members and Marla Murasko, Down Syndrome Mom Advocate & Inclusion Influencer.

    In a post on the WEGO Health website, these links provide instructions on how to protect your private information on Facebook:

    Newsweek, Facebook Data: How to Protect Your Private Information

    Trusted Reviews, Facebook Privacy Settings: 18 changes you should make right away

    Mashable, How to See All the Weird Apps That Can See Your Data on Facebook

  • Sickness & Grief: Lessons Learned

    In the final stretch of fighting the FLU, I decided to explore why my immunity may have been off. It’s a story, a short story, that I hope is thought-provoking for you. 

    If you’re interested in learning more about building your immunity, check out this month’s featured book selection in the side bar. For more on respiratory health, make sure you listen to this podcast episode. Check out the latest news about the flu season from the CDC.

    If you want a reliable companion while fighting sickness, check out Alexa and the Echo Plus. Okay, Alexa is not a reasonable substitution for a human or pet but she never once complained that I was asking her too many questions.

    Not a bad companion when you’re bedridden.

  • Talkin’ Tech with a Software Engineer

    That software engineer is Chris Schlechty — a fellow member of the Muscular Dystrophy Association’s National Community Advisory Committee. We talk about home automation, on-demand services, apps, self-driving cars, smart devices, and Seattle’s microbrews.

    Check out the DO IT Center which is dedicated to empowering people with disabilities through technology and education. Chris has been involved with this organization since he was in high school.