Glass Half Full with Leslie Krongold, Ed.D.

Category: Cardiovascular Disease

Stroke, Heart Failure

  • Rock Climbing & Acquired Disability Peer Support Group

    Rock Climbing & Acquired Disability Peer Support Group

    Christina Leffmann, or Roma as she prefers to be called, is passionate about indoor and outdoor rock climbing as well as the Acquired Disability Peer Support Group she started. In June Roma traveled to Salt Lake City to participate in Paraclimbing National Championships (you can see Roma climbing at 12:30 in the video).

    In her early 20s Roma experienced a series of strokes and identifies as having an acquired disability which is different than being born with a disability or aging into a disability. Currently she works for the Center for Independent Living and has an active life with a daily stretch routine, swimming, and weekly cycling. And rock climbing, of course.

    Earlier this year Roma shared her movement practice at one of the weekly Zoom meetings as part of the May Movement Challenge.

  • 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

  • My Beautiful Heart ????

    My Beautiful Heart ????

    An echocardiogram technician told me I have a beautiful heart and that got me going. What makes for good heart health? What role do genetics, lifestyle, and environment play?

    Dr. Erica Pitsch talks about the Framingham Heart Study, John talks about congestive heart failure and Mended Hearts, and Saurabh shares how yoga and meditation help his stress level and coping with myotonic muscular dystrophy. For additional tips on heart health, check out the Harvard Heart Letter.

    Earlier podcast episodes you may find of interest:

    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 every year there are a few diagnostic tests i need because of my myotonic dystrophy some of these tests are to monitor my heart because many of us with myotonic dystrophy have electrical conduction issues and eventually require a pacemaker a couple of weeks ago i was at my local Kaiser Permanente hospital getting an echocardiogram if you’re unfamiliar with this test it’s not painful it’s just a bit awkward you lay or lie half naked on your side the technician rubs something like Vaseline on your upper body and presses deeply with a probe while looking at a screen displaying your beating heart my session lasted for about 30 minutes

    Mary Lou, my echo echocardiogram technician, commented that i had a beautiful heart this was a surprise i didn’t interpret it as a flirtation but a great conversation starter i asked her what other hearts look like what made mine so beautiful she told me about dirty looking hearts from years of smoking she sees a lot of hearts and assured me that there are many differences i envisioned her writing poetry based on the beating heart she looks at for hours and hours each week later that day as i swelled with the news about my beautiful heart i realized valentine’s day was approaching and that’s how this episode came about i suspect the health of our hearts is due to many factors some genetics some lifestyle choices and some environmental factors we have little control over according to the American Heart Association ideal cardiovascular health is a combination of four healthy behaviors and three health measurements the behaviors are not smoking maintaining a healthy weight exercising regularly and eating a healthy diet the measurements include total cholesterol under 200 milligrams per deciliter blood pressure under 120 over 80. and fasting blood sugar under 100

    Not adhering to those guidelines can result in all sorts of problems including heart failure stroke diabetes and the list goes on in fact in a recent issue of the university of California Berkeley wellness letter there’s an article about the relationship between heart health and brain health many studies have found that cardiovascular risk factors in middle age are associated with the likelihood of developing dementia later in life back to the behaviors i don’t have anything to say about smoking or healthy weight but diet and exercise are something I can speak to

    You can probably find many dietary plans focused on heart health on the internet in producing some of the newsletters i read i found something about nuts this is based on a Swedish study that found people who snack on nuts three or more times each week had a lower risk of atrial fibrillation so add nuts to your diet in an Australian study with nearly 1 000 older women those that ate three or more servings of vegetables each day fared better than those who ate two or fewer servings each day the study also found cruciferous vegetables that would be like broccoli cauliflower those were the most beneficial one of my favorite newsletters is Dr. Andrew Weil self-healing a few years ago in an article titled rethinking dietary fats and heart health he gave a thumbs up to butter and a thumbs down to red meat and processed meats in terms of their impact on cardiovascular health in the tufts university health and nutrition letter i made a minute study with middle-aged men those who ate higher amounts of protein were at a higher risk of heart failure than those who ate less protein and i think we’re really talking about animal protein so maybe just maybe my heart is beautiful because i gave up meat over 30 years ago

    Enough about diet let’s turn to physical activity physical therapy professor Erica Pitsch at the UCSF school of medicine had this to say during a recent interview i’ve seen a lot of people that you know it was multiple diagnoses that have a good exercise ethic and they tend to fare better and there was actually a study number of years ago called the Framingham heart study which followed people for decades and people who exercise have less probability of dying of anything and was it in general thousands of people in the city yeah oh no in the us okay yeah great this is yeah it’s called the Framingham oh now i gotta google it now Framingham heart study but yeah no it’s it’s the exercise improves overall survival in general you can find the link to the Framingham study on the glass cellphone website as well as links to two previous podcast episodes with professor Pitsch one is about stroke survival and the other episode is all about balance and falling i admit it’s difficult to glean the best dietary advice from research since one month there’s a study that finds eating eggs to be nutritious and the next month there’s another study advising against eating eggs but with physical exercise it seems fairly conclusive that movement is key whether it’s walking working out at a gym or just remaining active in your home doing chores in 2017 there was the PURE study and PURE is an acronym for prospective urban rural epidemiology study it was written about by the American college of cardiology and the article library found that just 150 minutes of physical activity each week reduces cardiovascular disease and deaths so i mean ultimately you’re still going to die but during the study’s time there was an eminence of prolonged life when compared with a group of people not exercising for at least 150 minutes per week okay so that’s 22 minutes of exercise each day i can do that are you up for that challenge let that be your valentine’s day gift to yourself and your loved ones

    As i mentioned we don’t have complete control over all the factors that may result in heart complications my beautiful heart may have benefited from my father’s genetics because i know my mom’s genetics passed on the myotonic dystrophy gene

    For this episode i wanted to include a few people i know with heart conditions the first is John, a retired attorney in Oakland, who was diagnosed with congestive heart failure in 2017. I met John on a patient advisory council and Kaiser Permanente for the previous really year i had been declining in terms of my ability to breathe and my ability to walk in distance at all i used to be a backpacker and I could walk you know five or six miles a day with 50 pounds on my back at altitude and that was that was great it was one of my favorite things to do and gradually i began having less and less ability to walk until it got to the point where i really couldn’t walk more than maybe 100 yards or something without having to stop for breath so any one night i was in bed laying on my back and i felt that i didn’t i couldn’t breathe i mean i had to breathe but i didn’t have enough air so my wife suggested i go in which i should have done a long time ago but it just never occurred to me that i had a heart thing because I’ve always been healthy and right away they figured it out that i had what’s called congestive heart failure which means that the heart is not pumping efficiently so what that meant and why i felt an air hunger was that i had a lot of fluid in my lungs the heart wasn’t pushing the fluid throughout the body and my lungs were filled with fluid and that’s why i couldn’t get enough air to feel like i could properly breathe a lot of heart people with congestive heart failure they have to sleep at a recline or even sitting up for that reason so it’s a life-threatening thing it’s it’s it’s not uncommon and uh and they have a whole great big protocol at Kaiser to to deal with it and they have done that and I’ve been treated quite well and they put in a device which regulates my ventricles the lower chambers of the heart to get them to be synchronous which is one of my problems was they were beating a different time and then if I’m at a higher risk to go down with a with a heart attack so it has a defibrillator built into the device that i carry around in my chest with wires that go down into the heart to pick up the electrical information from the heart and put it into the computer and you know and it does its job and one of our advisory council meetings where we both volunteer at Kaiser John mentioned a group he attends mended hearts so i asked him about it you can go on their website it’s a national organization and it was started in Oakland by a cardiologist at Sutter hospital and i haven’t learned all the things that they do but the things that i have learned are they have a meeting once a month they bring in a speaker of some sort or some sort of a presentation sometimes it has to do with hearts and sometimes it has to do with something else like the last one was about you know life enhancement one of these life coach people and so she put on her talk that’s one piece of it the other piece obviously is that it’s a sort of an affinity group where people who have some kind of a heart issue go to meet other people who have some kind of a heart issue so that was actually the reason that i was interested in it was some peer contacts with people the third thing that they do is is they have a visitation program so you’re trained as a visitor you have to learn different things that they want you to know about like you know HIPPA rules and the things that you do and don’t say to a patient and you don’t comment on their treatment or whether that’s good or bad various things like that and so what happens is you sign up and you go like four hours a week and you just show up the nurses on the floor have already asked different people well there’s somebody from men at hearts coming would you like to talk to him or her and they say yes or no so once that’s happened then you show up and the nurse says the lady in room 13 wants to talk to you and that’s what you do is you go in there and just talk so it’s obviously a support kind of a thing but the idea behind it is that if you’re a person who has some heart condition and you’re in the hospital you’re an inpatient it’s really helpful to have somebody who’s also had some kind of a heart condition come and talk to you up here not one of the medical people i think that’s the biggest thing is the visitation

    i asked john how this experience has changed his life and what he now does to remain healthy they did a bunch of expensive things for me they did a catheterization where they run a camera on the end of a wire up into your heart and somehow manipulated around the different arteries to see whether there’s any kind of a blockage there was none i didn’t have any disease in my arteries so that was good because it wasn’t like okay well if you start eating this strictly vegan diet and leave out all of these different things which i really really didn’t want to do then you can you know maybe turn this around and i didn’t i wasn’t in that category they have a heart health nurse at Kaiser and she goes over all of the things that you should be doing and gives you a pretty extensive booklet about it you know like no salt and avoid this and that alcohol is one of the big ones no smoking that sort of thing so i now take about six seven pills every day that are for my heart to help it get work better not get better but work better and then when they put that device in my chest they told me that you know in around six months you’re going to start feeling a lot better and that is true i now I’m able to go to yoga twice a week for an hour and a half and today’s my yoga day and then I’ve started recently a personal training program at the y in an ideal case i’ll be able to go to the y three days a week and then i can use the swimming pool there and swim so i can have a lot of activity and i do have a lot of activity that’s what I’m doing right now and you know i just feel better i have more spring in my step people look at me and say there’s more color in my face my wife says well you’re standing up straighter and you don’t have a furrowed brow all the time and so yeah you look a lot better you know and that’s true i feel a whole lot better i don’t feel normal in terms of you know how i felt 10 years ago or but you know i do feel but for the fact that i that i tire easily i would feel pretty normal i don’t have any other issues during the day well thanks to modern medicine huh you bet yeah you bet and modern medicine has really come a long way i remember when i was growing up in the 70s hearing about so many men who died from heart attacks my own father had a heart attack close to 20 years ago he’s still thriving with the help of stents and drugs i also had uncles on my mother’s side of the family who died from sudden heart failure which was the common way people with myotonic dystrophy died which brings me back to the echocardiogram in kg and halter monitor i wear every year to see how my heart is doing in an earlier podcast episode all about adventure Rob who has myotonic dystrophy and his share of heart issues celebrated his recovery from cardiac surgery by climbing mount Everest now his story admit is a bit extreme but there are others in my patient community that are also thriving in spite of cardiac issues Saurabh who lives in San Francisco and works in the financial industry has a pacemaker he practices yoga and meditation to mitigate stress which exacerbates his heart condition and he also sees an ayurvedic practitioner as well as western doctors his treatment also includes an ayurvedic supplement called arjuna which is from the bark of the arjuna tree by the way ironically storm only lives a few miles from me but the phone connection had interference I’m trying to reduce some of the noise yeah so i was diagnosed with myotonic dystrophy in 2009 they pretty much had told me when i got diagnosed the most people who get this diagnosis tend to have heart issues and on the subsequent followers of cardiologists i had electrical conduction problems and they said they would need to follow up with me uh every six months yeah i was diagnosed with a problem called injured flutter initially which is irregular heartbeat and so i had to go and get a surgery done which corrected that but that led to a another form of irregular heart rate heat which is very common with people 60 years and older when i was 30 in that age as for literal population with atrial fibrillation i had to go on meditation because people with natural population tend to be at the highest stroke and i would follow up every six months around the heartbeat at some point time i started getting shot disease and my cardiologist suggested getting a photo monitor done for about two weeks and those two weeks the device that they put on me if i had a disease file which is supposed to press the button and when the results came out and i pressed the button when i was getting those dizzy spells they figured out that my heart was missing at that point time and because of the missing piece they decided to go in for the basement i don’t do a lot specifically for my heart health but i do things which try and be the healthier life overall this would also help my heart i exercise i do yoga and i also try and get some cardio exercises and uh you know i think the problem is the conduction problem so i definitely take that into account and not take my heart rate up too high when i exercise that you know i also meditate to keep stress away because i realize my regular beats were definitely [ __ ] up a lot around stressful situations so i meditate and that helps me manage my stress i did speak to an ayurvedic practitioner she suggested a medicine called arjuna which is supposed to protect your heart health in general use it as a substitute for anything in normal school um it’s easier to have it as a capsule there’s so much more to explore about the heart for example i wanted to include the role love and intimacy may play with heart health but i just didn’t have the time but i invite you to listen to an earlier podcast episode for valentine’s day with Dr. Danielle the link is on the Glass Half Full website and Dr. Sheypuk who holds the title of sexpert for the disabled community introduces the topic of dateable self-esteem the episode is called sassy in a wheelchair and now my valentine’s day gift to you

    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

  • Caregiving and Stroke: Two Topics Merge

    Ted, Teddy, and Kim

    November is the time to recognize Family Caregivers. One man’s caregiving story leads to a conversation about strokes – one  of the most debilitating medical conditions – and stroke recovery. Erica Pitsch, PT, MPT, DPT, NCS, of University of California, San Francisco, explains what happens during a stroke and what may be involved with stroke recovery and rehabilitation.

    Caregiver Resources include an earlier podcast episode with three family caregivers. You may also want to check out these national organizations: National Alliance for Caregiving and Caregiver Action Network. Be extra kind to your family caregivers this month.

    Dr. Pitsch works with stroke patients at this San Francisco location. To hear advice about balance and falling, listen to this earlier podcast episode. Check out the Balance Rap Song on the Glass Half Full YouTube channel.

    Stroke Warning Signs http://www.stroke.org/understand-stroke/recognizing-stroke/act-fast