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Aging with Neurologic Conditions: Post-polio Syndr ...
Aging with Neurologic Conditions: Post-polio Syndr ...
Aging with Neurologic Conditions: Post-polio Syndrome, Cerebral Palsy, Spina Bifida
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Good morning and welcome to our 8 o'clock session. My name is Kristen Caldera and I'll be helping facilitate this session on adults with developmental disabilities and aging and I will have a few reminders for people. Please turn off your cell phones or put them in mute. There will be both an audio and a video recording. Remember to fill out your evaluation forms, that gives us really good feedback for how things went and what more you would like to hear about. And remember to visit the pavilion for other interactive opportunities. And with that, I think we'll get started. My first speaker is Dr. Lauren Shapiro. She's an associate professor of clinical medicine and rehabilitation at the University of Miami Miller School of Medicine, where she also serves as vice chair of quality, safety and compliance. She and I came together because I put out a call to the universe and said, is anyone interested in this topic? And she responded that she has a population of patients with polio, post polio. So with that, I will let her continue to let you know about her clinical practice and some things she's learned along the way. Good morning. Thank you for waking up so early. So I'm Lauren Shapiro. I am mostly an inpatient rehab physician, but for the past several years, I have had the privilege of caring for a large population of polio survivors in Miami, where of course we have a very diverse population. So many of our patients acquired their polio from South America, Central America. Objectives this morning, I'm very briefly going to review the demographics of polio survivors, very briefly discuss post polio syndrome, which could very easily be a two-hour session by itself, highlight conditions for which polio survivors are at increased risk for as they age, and then lastly, describe some appropriate preventive medicine screenings and interventions for this patient population. It's important to remember that survivors of polio are a very diverse group with regards to age, nation of origin, their experience with disability, their comorbidities, and their rehabilitation needs. In very brief review, since I'm also a public health person, polio virus is a very contagious enterovirus, which spreads from person to person, primarily via the fecal-oral route, and it can spread by droplets, although rarely does so. The majority of infected persons are asymptomatic, but they can still spread disease. One in four develop flu-like symptoms. Between one and 5% develop meningitis, and less than one in 200 develop paralysis due to spinal cord infection. Between two and 10% of these individuals will unfortunately die. Some will live with permanent disability, but very many fully recover, though some will later go on to develop post-polio syndrome. At this time, unfortunately, we do not have effective antiviral therapy to treat polio virus, so treatment is supportive and rehabilitation remains the mainstay. Many in this audience were not alive at the time, but between 1948 and 1955, there were multiple polio epidemics in the Western Hemisphere. Survivors of these outbreaks were infected between 67 and 74 years ago, so you can imagine many of these individuals are now in their 70s and 80s. The Salk vaccine was introduced in 1955, and then the incidence of polio in the U.S. and Canada declined precipitously, but it's important to remember that polio remained widespread in the Americas through the 1980s, so many survivors of these epidemics are now in their 50s and 60s, and many of them have immigrated to the United States, and in particular to Miami, where they're now in my clinics. In 1991, we had the last case of wild polio in Western Hemisphere reported in Peru, and the Americas were declared polio-free by the World Health Organization in 94. It took a little bit longer in the Eastern Hemisphere, but in 2020, in what was a tremendous public health accomplishment overshadowed by so many public health failures of that year, Africa was finally declared polio-free. And at that time, wild polio virus was considered endemic in just two countries, Afghanistan and Pakistan. But unfortunately, it's not over yet. More than 20 children have tested positive in Ukraine since late 2021, and two had flaccid paralysis. Israel reported its first polio case since 1989 in an unvaccinated 4-year-old, and polio virus was detected in the wastewater in both London and several counties in New York. There was also an unvaccinated man in Rothland County, New York, who developed paralytic polio in June. And beyond these concerning developments with regards to polio virus, it's also important to note that there have been rising rates of neuroinvasive West Nile virus, which can cause a poliomyelitis syndrome, and there are increasing reports of a post-polio syndrome occurring in survivors of West Nile virus. So when we look at polio survivors, the demographics are somewhat interesting. We have our older adults who are in their 70s and 80s. We have immigrants, largely from elsewhere in the Americas, but elsewhere from other countries as well, who are largely in their 50s and 60s. And we may see younger individuals, largely from the Middle East and Africa, as well as refugees from war-torn regions. And that's why it's important to remember this younger group of individuals, because aging will include their childbearing years, as most people are infected during childhood. It's important to remember that active polio infection can result in transplacental transmission and can rarely cause newborn paralysis. Moreover, survivors of poliomyelitis are at increased risk for adverse pregnancy outcomes, including higher rates of C-sections, lower mean birth weight, elevated risk of perinatal death, and higher rates of preeclampsia, vaginal bleeding, and UTIs. Nevertheless, successful pregnancies do occur, including those on non-invasive ventilation. There have been some really nice population studies out of Asia looking at polio survivors, and we do know that they are at increased risk of a whole host of conditions. They do have reduced exercise capacity and are at higher risk for hypertension, ischemic heart disease, peripheral vascular disease, altered body composition, stroke. And then we will be talking more about sleep disorders, osteoporosis and fractures, and post-polio syndrome. These patients very much need good primary care, at least age-appropriate screenings. I know the complete review of systems is kind of going by the wayside, but in this population it's particularly important. And we're noticing in our community that a lot of the primary care physicians have been advising polio survivors not to get COVID-19 vaccinations. There's absolutely no contraindication, and these are among the most pro-vaccine patients that I care for. So very briefly on post-polio syndrome, this refers to new weakness or muscle fatigability after a period of stability following acute polio, usually 15 years or greater, that progressively worsens. Some may experience weakness in muscles that control swallowing, speech, and respiration. And many patients report generalized fatigue and or musculoskeletal pain, though those symptoms are very much nonspecific. Post-polio syndrome is seen in about 40% of polio survivors, and it can even occur in those who had mild disease or even non-paralytic polio. The cause of the worsening weakness is not entirely clear. The terminal axonal sprouts that develop in the recovery phase may be degenerating over time. Some believe there's still persistence of infection or even a delayed immune response. The treatment of post-polio syndrome is largely rehabilitation. Clinic exercise is very helpful. Cardiovascular conditioning, fall prevention strategies, stretching, and instruction in energy conservation techniques can be very, very helpful. It is important to look for therapists that either have experience in dealing with individuals with post-polio syndrome, though this is becoming very rare, or are very adherent to the precautions you provide them. Patients do need to avoid muscle overuse, which may exacerbate weakness and fatigue. In our clinics, in addition to providing therapy referrals, we are often seeing people for equipment needs. Many need orthotic devices, evaluation for assistive devices and mobility aids. And for those for whom fatigue is really very problematic, we do often recommend travel chairs and even power chairs and scooters when appropriate. And many individuals also need pain management. The vast majority experience new or worsened fatigue, and this may be severe enough to interfere with their ADLs or ability to work, usually worse with overexertion or stress. It's tempting to try medications to treat the fatigue. There was a very recent Cochrane review that came out, I think just last month, and there have been no beneficial effects when they looked at IVIG, amantadine, prednisone, periodostigmine, or modafinil, and inconsistent evidence for limetrigine. It's important to point out that the post-polio patient doesn't necessarily have post-polio syndrome. Patients with late effects of polio may have symptoms common in post-polio syndrome without actually having it. You know, fatigue and musculoskeletal pain are very common symptoms, even as people get older, without post-polio syndrome. And then deconditioning can have a tremendous effect. I noticed after lockdown was lifted during the pandemic, I had a number of people who lived with chronic polio sequelae but did not actually have post-polio syndrome who thought they had post-polio syndrome, but in reality they just became very deconditioned by lack of activity during that time period. And with therapeutic exercise, they eventually returned to their baseline. PPS is a diagnosis of exclusion. You do need to have that stable period before a decline. It's important to exclude other potential causes of symptoms, particularly in the older individuals. Maybe it's heart disease, anemia, thyroid problems. They may have another neurologic disorder, and musculoskeletal conditions are very common. And as I mentioned earlier, deconditioning is also very common, certainly exacerbated by the events of 2020. Weakness, pain, and fatigue can contribute to their reduced physical activity, resulting in deconditioning, and that in turn then increases their risk for cardiovascular diseases, obesity, and complications of immobility. It's important to remember that it's not just the patients with post-polio syndrome, but all individuals who have recovered from polio who have reduced submaximal exercise capacity on exercise testing. Cardiopulmonary endurance training is safe and effective, and in this population has been shown to improve oxygen consumption, result in perceived greater endurance, and reduce fatigue performing activities of daily living. Dysphagia can occur in post-polio syndrome, in which case it will likely progressively worsen and result in aspiration. It's more common when individuals also have dysarthria and or dysphonia, and it can be very helpful to refer these individuals for speech therapy. Respiratory issues can also occur in post-polio syndrome, fortunately very rare. It can result in new weakness of their respiratory muscles. Suggestive signs and symptoms include morning headache, difficulty sleeping, daytime somnolence, and shortness of breath. It can be worsened by obesity and other lung diseases, perhaps from scoliosis, and these are cases that we like to collaborate with our colleagues in pulmonology regarding their care. Sleep disorders are also extraordinarily common and contribute to fatigue. They're very much treatable in this patient population. I'm very quick to order overnight sleep studies. I have yet to get a totally normal one in this patient population, and they benefit greatly from CPAP or BiPAP. Agonist leg syndrome is also extraordinarily common in those both with and without post-polio syndrome, so I do routinely inquire when I'm seeing these individuals in clinic if they have that urge to move their legs at night, do they have that creepy crawly sensation, because they do respond very well to dopamine agonist medication. Pain disorders are also very common. More than half of polio survivors report chronic muscle and joint pain. They often have sore muscles from overuse. They may develop scoliosis, degenerative joint disease, and injuries from falls. Some do meet criteria for fibromyalgia, in which case they do tend to respond to those medications with amitriptyline being the best studied. I wanted to present a recent case of mine that really, I think, highlights some of the difficulties and challenges in caring for polio survivors who are getting older and are at risk for other conditions. So this is a gentleman I first met in February 2019. At that time, he was 72 years old. He had polio at the age of seven, but eventually fully recovered. He was diagnosed with post-polio syndrome in 2018 after a short period, or I shouldn't say that short, a gradual progression of worsening gait and left foot drop. He was actually in a post-polio syndrome treatment study with IVIG, and he had a very comprehensive workup to rule out other causes. When I first met him, you know, I recommended a carbon fiber AFO. We ordered him a rollator, sent him to physical therapy with an experienced therapist, and he did very, very well. Then early in the pandemic, I saw him a few times over telehealth, and he did acknowledge after the period of lockdown, needing more rest breaks when he started walking outdoors again, but it very much seemed like, even though he had post-polio syndrome, that deconditioning was playing a role, and as he increased his activity again, he did very well. Then in November of 2021, he contacted me fairly urgently and told me he developed very severe left eye neuropathic pain after a swim, and then a few hours later, noticed worsening left lower extremity weakness and numbness, and in a brief time after that, could no longer rise to stand unassisted. He of course called his primary care physician, who told him to, quote unquote, see his polio doctor, but of course, this had nothing to do with his polio. He obtained an MRI and it showed spinal stenosis, a very large disc bulge that was compressing the left L5 nerve root. He underwent anectomies, he recovered very nicely, and he's now back at his prior baseline. You also want to be on the lookout for neuropathies, which can also significantly impede someone's function, and you don't want to just chalk that up to post-polio syndrome. Upper limb entrapment neuropathies are extremely common, both carpal tunnel and ulnar neuropathies at the elbow and wrist. That's more common in those who are overweight or obese, and in those who use a cane crutch or wheelchair. Polio survivors with hand numbness or weakness definitely need to be evaluated by a physician, preferably a physiatrist. Splints can be very helpful with their pain and numbness. They may benefit from hand therapy, but unfortunately, carpal tunnel release surgery does not seem to significantly improve their function. And osteoporosis and osteopenia are also extremely common in this population. The highest risk is among post-menopausal women, but also among middle-aged men. So certainly if they have weakness that's unilateral or asymmetrical, bone density tends to be lower on the weaker side. Polio survivors should definitely undergo dexascans, both men and women. I do always order these when I first meet these individuals, recognizing that most of the polio survivors we're treating are in their late 40s or higher. Dexascans with bisphosphonate medications improve femoral neck bone density and fracture risk. This is a dexascan of a patient I met probably about two years ago. She was about 50 years old and had polio as a child in South America. She had residual left lower limb weakness. She had never had a dexascan before, and her T-score on her very first scan was minus 5.2. So please look out for this, and I do refer these to our osteoporosis experts to help manage. Over one-third of polio survivors sustain at least one bony fracture due to a fall. Hip fractures are particularly common in this group. The majority of those that need surgery for a hip fracture do not return to their pre-injury walking capacity. So these patients benefit greatly from fracture prevention programs. That includes treatment of their osteoporosis, instruction in fall prevention strategies, home modifications, bathroom safety equipment when appropriate, and weight-bearing exercise when feasible. So I ran through a lot of material very quickly, but important takeaway points. People with sequelae of poliomyelitis are a very diverse group. Many but certainly not all have post-polio syndrome, but they all do have some needs in common. They need exercise programs tailored to their ability levels, access to rehabilitation services and equipment generally throughout their lives, definitely access to appropriate screening tests, most especially for bone density, and healthcare professionals, not just physiatrists, but primary care physicians and therapists as well that really understand the condition and the complications for which they are at risk. I just want to remind everyone that this Monday is World Polio Day, and there'll be some interesting material on npolio.org, and I thank you very much for your attention. Thank you. overuse and I tell them to let the patient be the guide. Often the patients can kind of know when they're doing too much. I'll also sometimes even send them articles. I do have a couple of therapists I know are very good at this and I don't need to educate, but they're so rare these days, but definitely avoid overuse. And usually like a quick note, if the patient tells you that their earlier session caused a setback, you need to dial down. I work in Miami, so I apologize. I do have some snowbirds, but they do, they all migrate south for the winter, sorry. Okay. One question, one question I had, is there a role or when are you ordering EMGs on these patients? I don't necessarily do it routinely, but if I have any doubt that there is something else contributing, then absolutely. If I think they might have a radiculopathy or upper limb entrapment neuropathy, then I'd be quick to order it. I feel like that's a question that comes to me a lot. Well, do I need another EMG? What's that going to show? Is it going to show my polio is worse? I think it's going to show you had polio. Okay. Thank you. If you think of any more questions, we'll come back as well. All right. Hello again. For those of you new joining us, thank you again for coming to this early morning session. My name is Kristen Caldera. Thank you to those attending virtually as well as in person today, and a special shout out to my crew from the University of Wisconsin. Thanks for coming at eight in the morning. So I will be discussing the topic of aging in adults with cerebral palsy, and I want to tell you a little bit about my practice. I've worked at the University of Wisconsin-Madison for 10 years, and I focus on neurorehabilitation of adults with TBI, SCI, stroke, MS, but I also have a special niche in caring for adults with developmental disabilities, and these individuals make up about 40% of my practice. When I started, I didn't have any special fellowship training or special training for this population, and when I would go into clinic, I had a lot of questions. What makes this group unique? How is this group different from those other populations that I treat? So I hope to share with you some of what I've learned as well as some of the current research, what's behind what we know about these patients today, which has helped guide me through clinic. So I have the privilege of following Dr. Shapiro and being sandwiched between our last speaker as well, and she covered many of the rehabilitation principles for individuals with post-polio syndrome. Many of these principles, such as conservation of energy and assistive devices, also apply to this population of adults with cerebral palsy. So today I really want to see if we can get a better understanding of what to expect when seeing adults with CP in clinic, and although this topic is very broad, we're going to cover some small parts of it. So we're going to explore the perception of aging and function in adults with cerebral palsy, and I'm going to refer to that as CP, investigate the occurrence of pain in adults with cerebral palsy, and discuss the presentation and incidence of cervical myelopathy. So let's start with reviewing the definition of cerebral palsy. CP is a non-progressive disorder of movement and posture due to a one-time injury of the immature brain of a fetus or an infant, and you're going to hear me say that multiple times, non-progressive disorder. CP is the most common disability in childhood. The world prevalence of CP, depending on your sources, are one to four per 1,000 live births. The population of adults living with CP is growing, and CP actually affects, at this point, more adults than children. I hope that doesn't surprise people. It's very true. CP is not just a condition of children. It is important that we, as physiatrists who care for adults, are also knowledgeable about the aging process and care of these individuals. So let's start with a case. This could be a patient in any general physiatry clinic or in a neurorehab clinic. This is a 42-year-old male, spastic hemipredic cerebral palsy, gross motor functional scale of 2, presents with decreased walking in the community and trouble standing at work. He notes trouble sleeping as well. He thinks his CP might be getting worse. Briefly, GMFCS is a functionally-based system to standardize gross motor function in a child with CP, and I do recognize that this is not standardized in adults, but it is how I sometimes will track what their motor function is in my clinic with adults as well and compare it to what they may have in their notes as children. So although CP is due to a one-time insult to the developing brain affecting motor and posture and is, indeed, neurologically static, it's important to note that there are secondary and associated conditions following neurologic injury. Secondary conditions develop as a result of the primary condition. For instance, the infant had an injury of the brain, which resulted in right hemiparesis. Over time, spasticity develops, and later soft tissue contractures develop, and later an aquinal valgus foot deformity develops. These were not present at the time of injury to the brain, but did develop from it. And they certainly do remain factors in mobility as people age. Associated conditions occur with increased prevalence in individuals with CP. These are not disorders of movement or posture, necessarily, as defined by CP, but certainly do influence a person's health and function and are important to consider when we're addressing aging. In my clinical practice, patients and caregivers often present with more difficulty walking or requiring more assistance from caregivers or experiencing more pain. The patient and family often come into clinic and lead with, is my CP getting worse? Is it normal? Is it common? So let's look at a study by Benner who asked this question. Do adults with CP perceive a deterioration in their health and function as adults? This is a prospective cohort study in the Netherlands. There were 49 adults with CP in a single rehabilitation center who all completed questionnaires at baseline, four-year follow-up, and 14-year follow-up. If the adult could not complete the questionnaire due to a physical or cognitive limitation, their proxy completed the survey. The questionnaire addressed the adult's perceived health, asking, do you feel healthy? Do you worry about your health? Do problems with your health limit your activities? These are all questions that we could be asking in clinic, so let's see what this group answered. They also asked about the presence of pain and fatigue, and they asked about their function both in activities of daily living as well as walking in the home and in the community. When asked if they worry about their health or if their health problems limit their activity, there was a significant difference at the four-year follow-up to the 14-year follow-up, where they did have more worry. When asked if there was an increased perception of pain, there was between their four-year follow-up and their 14-year follow-up. They measured the functional level using the Barthel Index, which looks at independence in mobility as well as transferring, as well as self-care activities like dressing and feeding and toileting. We use this index in a number of neurologic conditions. In both cases, they found that at 14-year follow-up, there was a perceived decline in mobility as well as self-care. It's important to note that these adults were 35 to 45 years old, young adults who are perceiving a decline in their health, their mobility, and their self-care. There was a significant difference in the perceived ability to walk indoor distances as well as outdoor distances. Interestingly, there was not a difference in the perceived walking when they would walk greater than 100 meters. And the authors of this study suspected that this could be due to the fact that they were already using mobility devices for longer distances. So in summary, according to this study, middle-aged adults do perceive a change in their mobility and function along with increased pain and are worried about this, which may bring them to your clinic. Looking more at the occurrence of pain in this population, Vanderslap performed a systematic review and meta-analysis of 17 international studies to look at the prevalence of pain in adults with cerebral palsy. In all, there were greater than 1,200 participants with a mean age of 34 years old. In this figure, you can see that there was an overall mean pain prevalence of 70%. Another study looking at the occurrence of pain in adults with cerebral palsy was done by Rodby Busquet. The study was out of Sweden, where they have the CPUP, the Swedish Cerebral Palsy Follow-Up Program. It's a national follow-up program and registry for people with CP and was started in 1994. It has a 98% participation rate. I think that's incredible. Patients are seen in follow-up every one to three years, depending on their levels of impairment, at which time they do assessments, which include joint range of motion, gross and fine motor function, communication abilities, eating and drinking abilities, spasticity skills, pain, fractures, use of assistive devices, and other assessments. Using this registry, Rodby performed a cross-sectional study from the data of over 2,500 adults with CP, ages 16 to 80 years old. Using self-reported questionnaires and self and proxy, both self and proxy report of pain, as well as its severity, location, and whether it interfered with activities, work, or sleep, they found that adults with CP self-reported a 70% occurrence of pain, when by proxy report there was a reported 63% occurrence of pain. This made me question if we're doing an overall adequate job looking and asking and recognizing pain in patients who may be nonverbal. Looking at this figure here, also note how many different areas were reported as painful. The neck, spine, upper and lower extremities, this certainly can be applicable in our practice where we need to be aware of the many areas which can be affected by pain. Pain interfering with activities and work or sleep was reported in 600 of nearly 1,000 With a variation in how much it interfered, again, it's important for us to ask these questions in our clinical practice of these individuals and their caregivers. These studies point to the importance of recalling that CP itself is a static neurologic condition. However, an individual's experience of their disability, mobility, and walking can certainly change over time. However, there are things that are not neurologically stable, which we're going to talk about. And one of those culprits can be cervical myelopathy, and we need to look for it. If you hear someone talk about new neurologic symptoms, this is something you need to think about. Parita performed a prospective observational study and reviewed cervical spine radiographs of 180 adult patients with athetoid CP and compared these with 417 control radiographs. What they found was that there was an eight-fold increase in cervical degeneration, dysdegeneration, dysathetic instability at C4-5, as well as 2-millimeter increase in cervical canal narrowing in patients with CP versus the control group. A follow-up study with another group with Huang performed a cross-sectional study of over 400 adults with CP in a single center, evaluating the occurrence of symptomatic cervical spinal stenosis, say that 10 times fast, in adults with CP. Patients were determined to have symptomatic CSS if they endorsed symptoms consistent with that and had radiologic evidence of cervical spinal stenosis, so they needed to have both. They found symptomatic CSS in 7.5% of patients. I also found it interesting that there were two patients that had symptomatic CSS who were less than 30 years old and 10 were less than 50 years old. It reminded me to be aware of this condition and that it's not just a condition of our older adults with CP. Another interesting finding from this study was the overlap of the presenting symptoms, including involvement of the arm and leg, neck, or incontinence. You can see how it can be difficult to tease out these new neurologic symptoms in patients that already have an upper motor neuron injury, such as CP. So be aware and alert of new weakness, or maybe they changed the hand that they are dominant with. Maybe they're preferring to drive their wheelchair with their other hand or having more difficulty with buttoning or zipping or just their fine motor control as well. So in summary with this study, it's more common in adults with CP than in the general population to have symptomatic CSS. We need to have a high suspicion. I don't have discrete recommendations for screening, so just be aware. In these studies, they started with x-rays and then they progressed to MRIs or CT scans. The treatment can be surgical, and it's important that we not miss this. And post-treatment, they remain your patients because we need to continue to manage their movement disorders. So let's go back to our case. To our middle-aged adult who presented with a change in mobility, let me share some more information about him. He's his own guardian, though does have supportive services for finances and transportation and medical decision making. He communicates verbally, although with some minor dysarthria. After further discussion, he says he's been having pain for the last year in his knee on his strong side, which has been getting worse. He now has pain when standing and walking. It's waking him from sleep, and to decrease the pain, he's been walking less. So he started with an x-ray, and again, 42 years old. His spastic hemiparetic side is on the right, and here you can see in his left knee, which is painful, he has significant lateral joint arthritis. He was already quite active in an exercise program, really your model patient, including water walking, guided resistance exercises at the gym. He was compliant with his exercises with his physical therapist, he tried knee braces, he tried topical medications, he had tried weight loss. And in that last year, he had gone from just using a hinged AFO to relying heavily on a cane for home and community distances. So after a long discussion, he was referred to orthopedic surgery, and he did undergo a total knee arthroplasty. Following the surgery, we worked hard to get him admitted to inpatient rehab. I'm looking at my inpatient rehab friends. He worked with PT and OT. While this is not always the case for a total knee arthroplasty, in his case, due to his hemiparesis, he needed to use a walker post-operatively because this was a new skill for him and was difficult. He was then discharged home, and six months later, he's nearly back to baseline. This was a success story for this 42-year-old adult, and I do reflect on my experience caring for him and wonder if he hadn't been able to clearly verbalize to me that it was really his knee pain that was affecting him, would I have looked at it differently? Would a caregiver have looked at it differently? It probably would have been much more difficult to find the cause. In addition, maybe I should have also been thinking about cervical myelopathy had I not had this obvious x-ray, but it would have been on my differential had he presented to clinic this way as well, just with the decline in function and walking less at home and in the community. So my take-home points, CP is neurologically static. Adults with CP perceive a deterioration in their health, mobility, and daily living, and remember, this is in the mid-30s, mid-40s. More research certainly needs to be done into the causes as well as what we can do to preserve function. Many of the points shared by Dr. Shapiro concerning energy conservation, equipment, and exercise certainly are applicable. It's important to ask adults about their perceived function. Pain is indeed common in adults with CP. More research is needed into what type of pain, including mechanical, but also neuropathic and myofascial. We need to be diligent about asking caregivers and adults who are nonverbal about their pain as well. There are pain scales that can help address some of these things, and these scales include observation of behaviors such as grimacing. Cervical myelopathy occurs in adults, and clinicians need to be knowledgeable about the possible presentation, as some clinical and functional changes may be subtle. It does not just occur in later adulthood, and it does warrant evaluation. And finally, take a great functional history. These patients, when you're seeing them over time, are a little easier to solve because you know what they were doing five years ago, and then three years ago, and then when their complaint comes today, you're like, oh, you really are having a change. It is a little bit more challenging when it's your first day in clinic and they tell you that they've had a functional change and you don't know where they started, but I encourage you, be a great physiatrist and take a great functional history. Thank you very much. So Dr. Caldera, we have a question from the live stream for you. Oh, well, good morning. I'm sure from Seattle, because it's probably four in the morning there. Oh, maybe, I don't know. Does the CSS present equally across all GMFCS levels? In that study, I believe it did. I cannot say that 100%, but I believe in that study, it did not make any difference which GMFCS level they were. Interesting. So the there is not a specific. So the question was why are patients with cerebral palsy? Getting having more cervical spinal stenosis and there is not a definitive answer What was but what what was suspected? Is it mechanical issues and stresses? that are causing that because One of the things that they also found is that even after treatment if the and these were patients with athetoid CP that were in that study if you did not treat the movement disorder including neck dystonia after the fusion for instance that they had It would come back their fusion wouldn't hold so we think that it possibly is a Part of the movement disorder. Is it part of the muscle imbalances the joint? I mean also, why did the 42 year old have a knee that looked like that, right? That would be the suspicion But again when I was looking at what's pain what's you know, what is cervical myelopathy? We are just starting to uncover the tip of the iceberg saying yes, it does have an increased occurrence We really need to look at why and I think we can say well they move different They have different stresses. Of course, that's what it is. But I think there's more. Is it just the stresses stationary? Is it that they're ambulating more? Is it that how they're ambulating? Is it how they're seated? Those questions are not answered yet Another question With the advent of our interventions of tone management and orthopedic interventions To help with lever arm dysfunction Do you feel like the the pain as We treat adolescents and they go into adulthood is Gonna be less severe Because we're trying to address this early or Is is there a prospect that these things are inevitable? What What is your experience so there's a number of articles on for our pediatric physiatrists Right that talk about we should do this Derotational osteotomy of the hips so that we don't have all this hip pain later so that people can walk better for a number Of reasons we don't get this articulation We don't have that answer yet though, especially with some of the tone management If you you know that wonderful study that came out that I said, oh my gosh, they have a 90% participation rate We're following two thousand, you know thousands of people that was just since 1994 I mean, that's that's not enough time to see how our new interventions are gonna look in our adult population and I think that we just need to keep looking at these studies long term and I See these patients all the time and for me I was like, oh well Yeah, pain is of course common of all, you know All my mid are not all but many of my mid 20s 30s 40 year olds But then I thought what what are my pediatric colleagues thinking when they're when they're recommending these these surgeries Are they thinking that there's gonna be less pain and I don't think we have that answer yet In clinic when somebody for instance does come in for with hip pain though One of the things I do is I try to treat the dystonia or the spasticity around that joint And I know I didn't go into the treatment Of kind of how I'm managing this. I really just wanted to answer the question Are there real studies out there giving us an idea of whether there should whether we should be asking about pain Is there a high occurrence? Is there a change in function? So I was kind of giving you chapter one That's really interesting. Was everyone able to hear that? No. Do you want to repeat that into the microphone? I love having pediatric physiatrists show up. I was noting that it's not only athetosis and dystonia that results with cervical stenosis. It's also spasticity and I've seen hemiplegics who have cervical stenosis and it is spasticity, not dystonia. So don't think it's just with dystonia and athetosis. And the other question about treating spasticity and if that's making a difference, there have been a couple of studies with control groups that didn't have rhizotomy and groups that had rhizotomy and there has not been a difference in quality There's a question from our live audience out there. Given that most CP patients have weakness in upper motor neuron signs as their baseline physical exam, do you at times determine the need for a c-spine MRI based on history alone? And I read that also to piggyback off of our last comment. So I currently do have a patient in clinic who's in his mid-60s and presented with, my feet are just kind of sticking to the floor. And he has spastic diplegic CP. As a child, he was a GMFCS 2. He's a 3 now. And I started with x-rays, flexion extension, saw a lot of movement, spondylolisthesis, so I'm getting an MRI now. And that's pure spasticity, bilateral lower extremities. And his exam, I felt like he was a little, he had a little bit more spasticity, but it also felt like maybe it was just a little more stiffness of the muscles. So that's what I'm, you know, I started with an x-ray and I'm going to get an MRI. So I think sometimes you can't tease out. So if you're hearing them tell you, and you don't always get to hear them if they're nonverbal, if you're hearing someone, you know, even their caregivers tell you their function is changing, you need to go look. Okay. So if there are any more questions, we can follow those up at the end. But it is now my pleasure to introduce our next speaker. Sorry, one last question. So I was going, I wanted to ask, from your perspective, is there any benefit in getting screening cervical x-rays or for some type of baseline? Or do you only pursue that if the patient is symptomatic? So as I said, there's no current definitive screening like we have in some of our other populations. Like in, who am I thinking of that we're looking for? Atlanta occipital. Someone give me the word. Thank you. Down syndrome. See, it's the lights. They make you forget things. Yeah. So in Down syndrome, we do have screening protocols for that. There are not. But, you know, it's like a lot of what we do. Do we have screening protocols for what we do in patients with spinal cord injury to look for their osteoporosis? What do we do with the 42-year-old with post-polio, you know, that has osteoporosis? So there's, you know, there's not always a screening protocol, but that's what I really want to hammer. Get your functional history. If there's a change, go look and see what's going on. And it is easy to get an x-ray. And it's funny because they'll be like, what do you need? What do you want? You're neural. What do you do? You want flexion extension films? Yes, I do. It's exactly what I want. Okay. Okay. I'm super excited. Can you guys tell? So as I said, with Dr. Shapiro, I put a call out to the universe and she answered. And this guy kind of walked into my life as well. When you work with residents and fellows, just remember that someday they're going to point you out and ask that you pair up with someone. So when I asked, can anyone talk about spina bifida, I have so many questions about spina bifida. One of our fellow, one of our new attendings who was a fellow said, I know a guy. And that guy is Dr. Rez Fareed, who is a clinical professor of physical medicine and rehabilitation at the University of Missouri. He's the vice chair of clinical operations and director of medical student programming. And he has his certification, subspecialty certification in pediatric physical medicine rehabilitation, as well as, of course, adult care. So I welcome you and thank you already for coming. Thank you very much. She left out that I have a partner in pediatric rehabilitation who will not see adults. And so she gets to dictate who everybody sees. And so when the kids grow up, there's nobody to see them. And that's how I ended up seeing them. It's a pleasure to be here. We're going to talk about some things related to spina bifida. And I was just trying to think in preparation for this, what did I not know? And I still don't know a lot. And what things I learned along the way. So I wanted to have an introduction to some of the things that I've seen that I've said, I didn't know how that worked. And what I see from the residents. I want to share this open source picture first. Because it speaks to the heart of what I see when I see kids with CP and kids and adults with spina bifida or any other disabilities. And that is that they want to be treated just like everybody else. They don't want to live with their mother. They want to have relationships. They want to have fun. And this is an open source picture from a charity in the U.K. And I saw this picture and I thought, wow, isn't that great? And then I said, wow, isn't that something I've never seen for my patients? Have I ever seen my patients being included in mud runs or super fun activities outside of special camps or special trips? I have some charities that will take kids on hunting or fishing trips, et cetera. But very few opportunities were there with their peer group. Unfortunately, the able-bodied population is not as willing to socialize, to interact, and to welcome in those adults with disabilities. We all know it. We don't want to admit it, perhaps. But we need to be aware of it. Because these are the troubles that our kids face. I've never seen a patient like this having such a joyous time out in the community doing all the things that the able-bodied kids and adults are doing. So that is the prevailing thought that I want everybody to take home, if nothing else. Spina bifida used to be a terribly deadly disease. But then some things changed. The first thing that changed was VP shunts in the 1950s. And then clean intermittent catheterizations in the 70s. And now neonatal surgeries are being done between weeks 19 and 26 in utero. We don't know those new surgeries. So we don't know if that's going to improve survivability. It's another advancement in care that some of your patients may have received at some point in their lives when you inherit them either in childhood or adulthood. We're now aware of the high prevalence of latex allergies. So the survival has improved a lot. But still, when you're talking to families and talking to loved ones, as kids with disabilities get older, they may now outlive their parents. So their parents have to have a plan. And that's an uncomfortable conversation that I have with, again, kids with CP and kids with other disabilities. You know, parents, I realize you're here to help your child and grow into adulthood. But we deserve, these patients deserve for us to have that conversation with them early on that says, well, what's going to happen when you can't do all the things you're doing now? Because you're going to get older and your back's going to be sore and they're still going to need things. And it's going to be better for all if you have a plan in place to help them. If you have an estate, a trust, something set up, perhaps a guardian, a subsequent guardian that's going to help make decisions for them or help them out if something were to happen to you. I've had, of course, parents dying from cardiac disease or car accidents unexpectedly that have left their children or adults with disabilities in great despair. So please encourage them to have those conversations. The average age now is up to 40, depending on the level of cerebral palsy. We didn't really talk about that. But those kids with the most severest form may only live to 20 to 25 years. But as you heard from Kristen, those with better ambulatory skills can live well into the 50s or 60s or beyond. So they still might need some of that supervision. And I hope you'll encourage their family members to seek that professional legal help as early as possible. So unfortunately, as alluded to with that picture, my patients, yes, they're in the middle of Missouri. Small town. Smaller resources. Smaller ability to interact, perhaps. But more social isolation. Limited employment options. Limited social interaction. Limited options for independent living. But if they're going to live independently, they're going to need a lot of resources. They're going to need modifications to their home. And agencies are available to make those kind of changes. I have one patient in particular. He's managed to procure all kinds of resources so that he can still maintain his ability to live on his own, even though he really doesn't have a job. But he's still able to maintain his own household and take care of his own business. These patients generally have a slightly lower than average IQ. And they have a lot of orthopedic, neurologic, or urologic limitations, depending on their level of injury. And so I wanted to familiarize ourselves with that situation, too. So kids and adults with spina bifida have a number of bladder procedures that are sometimes thrust upon them, sometimes necessarily. That might include kind of redirecting the way the bladder works. So in the able-bodied population, it's kind of like it is for patients with spasticity with a muscle spindle. The bladder fills. It sends feedback into the brain. The brain modulates that information and says, well, not really necessary that we empty our bladder right now. But at some point, the bladder gets to a point where the brain says, wow, it's time to go now. Can I find a socially acceptable time and place to relax my sphincter and let the detrusor relax? And that's how most of the able-bodied population works. In the spina bifida population, that signal is not modulated as well. So the signal may be to empty the bladder before it's generally full. And so there might be some leakage and overactivity. So there are some procedures done to try to relax that bladder to make the bladder perhaps bigger capacity or to reduce the feedback that is given from the bladder itself to try to limit the frequency with which the bladder empties unexpectedly. That can include augmenting the bladder with a piece of colon or ilium. It might include using a piece of the appendix and attaching it, sewing it into the bladder and having it come out the belly button so that that can be catheterizable perhaps more easily than a traditional intermittent catheterization. There are some surgeries that can be done. I know that our urologic colleagues, I don't think any PM and R colleagues are doing injections into botulinum toxin bladder injections, but my urology colleagues are doing that. Whether that's 30 sites, you know, every centimeter or so, or now looking at 10 sites and seeing if that's just as effective, but certainly through a cystoscopy and then injecting those sites into the bladder to help relax bladder wall. And that's every six-month interval in general. My university doesn't do rhizotomies, but a sacral rhizotomy reducing the amount of sensory feedback from the bladder so the brain doesn't receive as many signals just like it might for spasticity can be done. And then this last option is sacral neuromodulation. Now this photo that I've included here is a patient of mine with cerebral palsy, sorry. So ignore the back of the pump on the right-hand side of the screen. The purpose of this picture was to show you what an interstem device looks like for sacral neuromodulation. So that's a Medtronic device that is set up over the sensory fibers of S3 to reduce the amount of feedback from the bladder and thereby allow the overactive bladder activity to be reduced. So I have a patient who had that and I just wanted people to see the leads and what it looks like and etc. Again it's a CP patient, my apologies. That's all I had to show at that time. Then for bowel issues, much like our patients with spinal cord injury, but they seem to be more resistant to bowel programs in my mind, but I wanted to throw out the options of course between disimpaction and enemas. And by the way, as a former member of the corporate industry relations committee I guess for AAPMNR, I know that the many enemies people are here supporting the academy today, so thank them if you see them. Coloplast is the maker of Paristine down at the bottom. They are not here, so make sure if you see a rep from them that you scold them strongly for not coming and showing your support for your profession. This specific question, one of the questions that Kristen had was, hey Rez, I've got these patients who have this MACE procedure where they take the appendix, because we always sacrifice the appendix, and connect it to the proximal part of the colon so the people can have their enemas and flush through that way. And she's like, you know we have some of those people, is that any good? And my reflexive answer was, of course, it's fantastic. What are we talking about? I don't know if I have any patients that have it, but that was just my first impression. And then I did the research on it and thought, huh, Kristen, yeah, you're right. The reports highly vary between the amount of success that patients have continence with their Malone Antigrade colonic enema. So I have to say I'm sad to report I don't have a definitive answer. I've read two different studies that gave me two totally different responses to how well that worked. So I would be hesitant to say that's the definitive plan for patients with bowel issues related to spina bifida. They still might have some incontinence and their level of satisfaction is probably in that 50-50 range. Pirostein is a newer procedure. It's a transanal irrigation system. It requires special education from the company, so you can't just order it. They have to have training for the nurse to come out and work with the patient. I think when I last talked to one of my patients, it was like $800. It was difficult to get insurance to cover. But it is essentially this picture over here on the right where you fill this bag with room temperature or body temperature water, and they have a lubricated plug that goes in the rectum that then expands, and you can irrigate some fluid into the colon, and you remove the device and wait about 15 or 30 minutes, and then fluid and stool will come out and may keep them, you know, clean for 24 to 48 hours was the talk about that. So... But again, they didn't come here to support your meeting, so please reach out to them, and hopefully they'll come next time. And last are just patients who get colostomies. VP shunts. So VP shunts were one of those things I didn't know a whole lot about when I was much younger, and even though I'm older now, I still don't know a whole lot about them. So I wanted to share some of my experiences with that. The... Of course, almost every kid with spina bifida, 90-some percent, are going to get shunts these days. They can be fixed flow or programmable. So some of them will have a little magnet transducer that can adjust the flow, and some will not. Neurosurgery largely managed them. I don't manage any of them. Very few... I mean, my neurosurgical practice colleagues like to have those shunts checked every year. I think that's a rarity. I think most patients... Despite the fact that we know, certainly in the kid population, that shunts fail all the time. They don't do much better in adulthood, and we should be monitoring them. We should recognize signs and symptoms of shunt malfunction and infection, and then recognize if we have a shunt issue and we've had shunt issues. Maybe there are some other procedures that could be done to reduce the amount of CSF overproduction, perhaps. So that's where maybe adding a third ventricle ventriculostomy or a choroid plexus cauterization might be of some benefit in those populations in which a shunt has failed once or multiple times, and they're no longer interested in going that route. It is the second most common reason for hospitalization in spina bifida is a shunt issue, the first still being UTI. So you have to have it high on your list of things that are going on. You have to have a high sensitivity of what kinds of problems happen with these patients. So whether it's headaches, vomiting, dizziness, drowsiness, etc., that should be something that comes to mind, whether you have to do serial eye exams or just serial checks, knowing your patients well enough to recognize if they're going to have a shunt issue is kind of critical these days. The other thing is tethered cord. Now, you know, in the PEDS population, oh, tethered cord, it happens when you're growing and then it kind of goes away, but alas, that's not the case, right? So adults, as they get in their 30s, are still at risk for tethered cord, and certainly if they've had tethered cord surgery before, they're at risk of dural adhesions and subsequent tethered cord. This is a patient of mine who has a sacral lipoma who's had at least four tethered cord releases. He has ongoing bladder and bowel issues, and so being aware that it's not just a childhood issue, patients have some issues coming up, changes in bladder, changes in sensation, changes in the bowel, you should be probably pretty quick to make sure they have a follow-up MRI to see if they are having additional issues with tethering or whether they need a, you know, a urodynamic study. Oh, I took this slide out early this morning. Interesting. Okay. Well, we're going to skip that, but we're actually going to leave one thing. With the tethered cord might be syringomyelia and scoliosis, so those need to be followed as well. My apologies. The reason I took this picture out was that the photo I downloaded from open source is a Chiari 1 and it really didn't fit. I couldn't find a good Chiari 2 picture, so I just decided to take the picture all out so I didn't confuse anybody and get yelled at. So, in the real presentation, somehow it still showed up. My bad. Let's see if we've still got time. There's always time for sex. So, as I mentioned earlier, kids with disabilities and adults with disabilities want to be just like the rest of us. So, everybody largely has an interest in having sex. They have an interest in having relationships. So, we need to sometimes have that difficult or uncomfortable discussion about trying to facilitate that. I had that patient I showed you earlier that had the interstem and the baclofen pump who had CP, got that baclofen pump because she had such adductor tone that she could not have sex and she wanted to have sex. So, she got a pump just so she could have sex, which I thought was awesome. Now, so I think the important part is that we in the able-bodied situations, you know, we want to make sure people live their life to their fullest and this is an important part for them as it is for everyone else and we shouldn't forget that. They can have erectile function. They might need medical assistance for that. So, we should be prepared to have that discussion with them and facilitate that talk in the future. We should also be able to say, well, you know, if you get pregnant and you have this shunt, that shunt could be obstructed. It could become dislodged, etc. Also, I wanted to mention, although I said VP shunt, those shunts, although peritoneal might be the most commonplace, can also end up in the atrium or the pleura, just much less commonly done. Another unfortunate discussion that we should have with patients that we're all remiss. We don't want to do, we don't want to have that talk. We don't want to tell our patients that they're not in prime physical condition, but many of them are overweight and portion size is critical to maintaining proper weight, which would facilitate improved ability to transfer and preservation of mobility down the road. So, you cannot be afraid to initiate that discussion early on. In fact, I'm shamed that I don't do it more often because I don't, I mean, I have daughters and I don't want to tell them, oh my gosh, you know, you're looking a little heavy, kid. But we need to find a subtle, proper way to smooth people into a life which they can improve and act and be more active at the highest level possible. And that's going to include caloric intake and portion size. They're not going to be able to exercise. I know many of you guys got up early this morning and did your fitness routines and all that stuff, but our patients can't do that. And so we have to find a way to help them live their life as well as possible. And that might improve any future issues with hypertension. So I think that's all great. I do fall on the outside of the bone health category. There aren't any studies on spina bifida patients with bone health. And in my particular, over the course of my practice life, I have seen more patients with osteonecrosis of the jaw than I have with fragility fractures. So I'm not a bisphosphonate prescriber. Sorry, Dr. Shapiro, I know I'm not bad, but you have to decide for yourself whether or not the risk versus benefits are important enough in your patient population. I just wanted to share. I did a literature search. There's not a whole lot there. So proceed as you wish. Other problems, right? So I mentioned patients get older. They lose some of their ambulatory skills. They are using wheelchairs. You know, a power wheelchair weighs somewhere in the neighborhood of 350 pounds. You can't get it. You have to have a special van. You have to have special transportation. It's hard on all the equipment. Wouldn't there be a better way to get some powered mobility or power assist mobility, perhaps a smart drive on your manual wheelchair? I have had a couple of patients. I always counseled against it, I guess. You might have seen ads on late night television for a little power wheelchair that weighs 50 pounds, it folds up, they can put in their trunk. The one I'm talking about is called a Zinger, but there are other copies now. I had a patient buy one on Amazon for $1,200. A Zinger is about $2,400 or so. And I had always said to these patients, oh, this sounds like a bad idea. You know, what happens when it breaks? And I thought, well, when your power chair breaks and I call new motion, it doesn't seem like they're real responsive. So maybe you should just roll the dice and try one of these things. And so I have several patients now who have these lighter weight power chairs that, you know, they don't have the Roho cushion, so to speak, but for a short amount of time to go in someplace really quickly to get out, it seems like these are becoming increasingly popular. I don't know how you're going to get them fixed once they break, but I haven't had to deal with that yet. So I'd say you should keep your mind open. New motion is not the answer to all of our or any of the other companies that sell DME. They don't seem to be the answer to all of our problems and maybe just be open-minded for some of these power assist options that might be lighter weight and lead to a better use. There are still risks for hospitalizations with pressure sores, including feet and ankles. So when they come in, you know, a couple of patients who don't use footrests, their feet are just dangling there. They just, you know, they don't pay any attention to them at all. So make sure when you see them that you inspect their feet, et cetera. And we already talked about anxiety and social withdrawal, so we'll leave that because we're out of time. List of references for your own review. Certainly have any questions. I'm certainly happy to hear from anybody about their own experiences as well. Thank you for having me. Thanks for the talk. Thanks. Yes, sir. So it's a good question, right? The I'm not sure the mechanism the mechanism we pressure everywhere not just cerebellum, you know, so Whether or not why they get nystagmus when they get increased increase in intracranial pressure not my wheelhouse but Recognizing that the neurologic change occurs and the snoring or the apnea related pressure I think would be the key part Anybody else having an answer to that his question Do we have any neurosurgeon? So, during when a shunt has gone bad, so when a shunt has gone bad, I've just sent them to neurosurgery and said, you know, let's get this fixed. I've used Diamox myself for altitude sickness prevention. It is fabulous for that purpose, and I've done it for CSF leaks in patients who have intrathecal devices, but in general, I think when a shunt goes bad, if their pressure could have been managed with Diamox, that should have been done early on, so you should probably just get the shunt fixed as quickly as possible. Anybody else? Questions about anything else? They just asked that we repeat the question to the microphone because the live stream audience can't hear. Okay. The question was about a mechanism of action related to nystagmus and intracranial pressure, which I could not necessarily answer. Oh, so the question is related to the segmentality of neuropathic pain in patients with spina bifida. And so in my patients, it's been, it has not been segmental. It's been generalized. And if I could impose on the person behind you, I noticed a smart drive power assist. Since I, since I saw you come in with it, you have an opinion about it as compared to a heavy duty power wheelchair. And saving your shoulders. Yeah. And how heavy is it? 12 and a half pounds. So, uh, and it just attaches to your wheelchair and off you go. Yeah. Thanks for letting me pick on you. I wanted to do that all day. Oh, one more question over here. Uh, thank you for your talk. Um, I have a question for you. Are there strategies that you have utilized for your patients who maybe are living in a skilled nursing facility or a long-term facility and helping to treat the metabolic syndrome, particularly for patients who may not have access to, you know, regular, you know, exercise routines, dietary professionals, et cetera. So yes, I, and that question doesn't need to be repeated because it was on the audio there. So, uh, I do have patients living. I don't have any living in skilled nursing. Well, I guess we probably do have some living in skilled nursing facilities and many are living in independent supported living and, uh, or on their own. I think it's, I always have the talk about portion size and I have that talk from my own experience that I exercised for a lot of, a lot of months and didn't notice a change to the degree that I should have until I made a, um, um, a change in portion size. So, so that part I think is critical and it's not that hard of a conversation to open with the patients from the get go. Now you're right. I don't want to have a bigger discussion about, uh, those from lower socioeconomic status, having a harder time buying healthier food, et cetera. But it's still, and it starts with portion size. Uh, I can't get them to exercise. There's very, I mean, we have a public place where they can go and exercise, but they can't get enough cardiovascular fitness work in to, uh, to impact their overall functional level. And it has to start long before they're 35 years old and already 30 years old. 35 years old and already 30 or 40 pounds overweight. It has to start as, as in, in the adolescent years or sooner. Uh, it has to involve parents early on and it has to be embedded in the child, uh, in regards to that. Now I don't, I don't have any patients that couldn't get a dietary referral, uh, if I were so inclined. Um, so I, uh, and, and that certainly would be warranted. I don't see why that wouldn't be, uh, it shouldn't be too hard to make that happen in most parts of our country. I think we have that luxury. So, um, I just happen to have those talks myself and ask, what are you eating and how much are you eating? Uh, you know, and invariably their family member perhaps is producing a plate that's full of food that doesn't need to be that full of food. I like to start, I like to start with, can you guys hear me? No. I like to start with, what are you drinking? And a lot of the times it's juice and chocolate milk. And if I ask them to make one change, it's to drink water. And then I go to portion size, but you would be, um, well, maybe you ask the question too. I mean, oh, I'm super healthy. I drink a lot of chocolate milk that has a lot of calories. So sometimes just that change can make a, you know, it's like, it's one simple little thing and it takes 20 seconds to talk to them about. I hear one other question here. Hi. Um, more of a comment. Uh, I see a lot of adults with CP as well. And just wanted to point out that, um, like what, uh, Dr, um, what you were just talking about with metabolic syndrome is really common in this adult CP population. So I'm also screening for that. Um, and if anyone wants to look at some great literature on like metabolic syndrome and other conditions in adults with CP, check out at her wits is work out of Michigan. Can you say that name one more time on the mic? Because I think, yeah, I know. Okay. Ed Hurwitz. Yes. Um, I reviewed a lot of that literature, have, I'm a huge fan. Um, I would encourage you if you do have questions about metabolic syndrome in adults with cerebral palsy, they are doing fantastic work out of the university of Michigan. So the question was related to gastric sleeve or bariatric surgery and I have not had any patients do that. Even though the surgery is much better than it was 15 or 20 years ago, I would have never recommended somebody having bariatric surgery years ago, but now it seems that they have it improved significantly, but I have not done that. Thank you. It seems portion size would be a lot easier to undergo than having that big surgery. Yeah. Our bariatric... Just to repeat the question, it was your experience with bariatric surgery. Our bariatric group would first do, of course, dietary management, medication, and then if that's unsuccessful, would go ahead to a gastric sleeve. We fortunately have a very good bariatric group in our hospital, so it's very much a pretty... It's becoming almost a first option, but we try to be conservative. Yeah. And now there are medications, whether it's metformin or semaglutide injections that there might be other things to try if you really wanted to get that gung-ho about things. All right. We'll call it there. Yeah. All right. Thank you everybody. Have a great day.
Video Summary
Summary 1:<br />In this video, Dr. Lauren Shapiro discusses the challenges faced by aging polio survivors, including the risk factors they face and preventive screenings and interventions available to them. She also explains post-polio syndrome and its symptoms, causes, and treatment options. Dr. Kristen Caldera focuses on adults with cerebral palsy (CP) and aging, discussing the secondary and associated conditions that may develop over time and the perception of aging and function in this population. She emphasizes the prevalence of pain in adults with CP and the importance of recognizing and addressing it. She also highlights the occurrence of cervical myelopathy in adults with CP and how it should be considered when new neurologic symptoms arise. Overall, the video provides insights into the unique challenges of aging in adults with developmental disabilities.<br /><br />Summary 2:<br />Dr. Rez Fareed's presentation focuses on adults with spina bifida and their various health issues. He discusses the social isolation, limited employment and independent living options, and lower average IQs that individuals with spina bifida often face. Dr. Fareed emphasizes the importance of addressing these issues and helping patients live their lives to the fullest. He also discusses common medical procedures for individuals with spina bifida, such as bladder procedures, bowel programs, and VP shunts. Regular monitoring of shunts and recognizing signs of malfunction is crucial. Additionally, Dr. Fareed highlights the importance of discussing sexual health, addressing metabolic syndrome and obesity, and using power assist mobility devices to maintain mobility for individuals who are no longer ambulatory. Early intervention and management are also emphasized to improve overall quality of life for individuals with spina bifida. <br /><br />Credits:<br />Video 1: <br />- Speaker: Dr. Lauren Shapiro (associate professor of clinical medicine and rehabilitation) <br />- Speaker: Dr. Kristen Caldera (physiatrist)<br /><br />Video 2:<br />- Speaker: Dr. Rez Fareed
Keywords
aging polio survivors
preventive screenings
post-polio syndrome
adults with cerebral palsy
pain in adults with CP
cervical myelopathy
aging in adults with developmental disabilities
spina bifida
health issues
medical procedures
sexual health
quality of life
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