Rectal Prolapse, Dyscalculia & Dyspraxia: The Connective Tissue Connection | Office Hours (Ep 177)

Transcripts are auto-generated and may contain errors Dr. Linda Bluestein: [00:00:00] Learning a cognitive processing is also something that a lot of people struggle with. So although general intelligence amongst EDS and HSD patients is typically above average, the following problems can contribute to learning difficulties. Welcome to. Every bendy body to the Bendy Bodies podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility md, a Mayo Clinic trained expert in connective tissue disorders dedicated to helping you navigate joint hypermobility and live your best life. In today's office hours, I'll be answering some of your most pressing questions, and thank you so very much for submitting those questions because it really helps us know what you want to hear about. If you're watching the video or if you're listening, you're going to see or hear new faces and [00:01:00] voices on office hours. For my team at Human Content today, one of those producers, Shahnti, will be joining us. Hi Shahnti. It's so good to see you. Hi, Dr. Bluestein. Thanks for having me. Of course, of course. Um, we thought it would be fun to give you a behind the scenes look for this office hours episode, so they'll be popping in to read some of your questions and keep things rolling. Um, Shahnti, thank you so much for being here and for wearing VIP Bendy Bodies merch. Can you show us what that looks like? Absolutely check this out. Yeah, so if you would also like a VIP shirt, let us know and we will see how we can get those, um, available for order. Please stick around until the very end so you don't miss any of our special hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Here we go. Before we begin today's episode, I want to honor the life and legacy of John Furman, founder of Chronic Pain Partners and a pivotal leader in the EDS community. [00:02:00] John created chronic pain partners, also known as EDS awareness in 2011, after losing his wife Carol to misdiagnosed EDS, and after his daughter, Deanna was also diagnosed with Hypermobile EDS. His goal was to ensure that no other family experienced what he did. He dedicated the rest of his life to advocacy. Building over 100 support groups across the United States, launching the first Major EDS webinar series, developing CME programs, and creating extensive educational resources long before widespread awareness existed. John was also the person who first drew me into EDS advocacy Together. We created the first online EDS CME program and since 2018, I have served as the volunteer medical consultant for his nonprofit. I learned a tremendous amount from John. He invested his retirement savings, his time, and his heart into this community. He was deeply loyal, direct, and committed to doing what was best for people with [00:03:00] EDS. If you would like to honor John's legacy, you can share memories or messages on the chronic pain partners website. And donations to his name can be made to support the continuation of the work he began. So now I would like to address some of your questions. Um, Shahnti, would you like to read the first question for us? Of Shahnti Brook: course this message is from Sean. Sean writes, I'm happy to have discovered the podcast on Spotify, and I absolutely love it. Unfortunately, Sean says, I suffer from H EDS and HSD. I have rectal prolapse and have had five different surgeries to repair it. The last was robotic surgery with biodegradable mesh as I am allergic to many things, and so we did not use the plastic form. It only lasted five weeks. My collector surgeon is wonderful, but we are at a loss. I was wondering if you one knew of a surgery treatment that actually works for H EDS HSD [00:04:00] individuals, and two, if you have a referral to a successful Colorado rectal surgeon. I live in Michigan, but I'm willing to go anywhere for treatment. I understand how these patients must feel. Dr. Linda Bluestein: Yeah, it's so, so rough. And Sean, I'm so sorry that you're going through this recurrent rectal prolapse is so, so hard, and especially if you've been through five surgeries, that's, that's really tough 'cause each one of those is going to be painful and involves so much healing. And, uh, so that's. My heart goes out to you 'cause it must be so hard to be in this situation. We're gonna try to share some tips that might be helpful for Sean and other people who are experiencing pelvic floor prolapse. 'cause we know this is very common with hypermobile EDS and HSD. So what are some things to be thinking about? The first thing we're gonna think about is what operation will best fit your mechanics and not just the prolapse. Before any repair, you want to ask [00:05:00] for a full pelvic floor and motility workup to tailor surgery appropriately. Some of the things that can be done included dynamic MRI or fluoroscopic defecography. You want to look for multi compartment prolapse, tsal, and internal intussusception. You also want to look at anal, rectal, mammo and balloon expulsion, and if constipation is prominent, you wanna look at colonic transit testing. You can also ask for endo anal ultrasound to check for specter deficits, and this can help determine whether you would do better with an abdominal recop, plasty, the ventral approach, or through the abdomen versus a perineal procedure, which is when you come from down below in the perineum or your saddle area, or a combined plan with urogynecology. I also want to point out that if a person has tethered cord syndrome, which is very common with people with hypermobile EDS and HSD, that can also greatly impact your ability to enter your bowels [00:06:00] and can impact your pelvic floor or tone, et cetera. So I highly recommend that you also check out the episode with Dr. Petra Klinger, which we will link in the show notes. Okay. So from the standpoint of doing an anterior or ventral, um, surgery opexy, um, with non-permanent reinforcement or suture only. So if you're going to try to avoid putting in any kind of mesh, um, here are some things to consider. Uh, first of all, laparoscopic or robotic ventral opexy avoids wide posterior mobilization, which can worsen constipation. So if you're going in through the abdomen, you don't have to mobilize as many tissues in the posterior part of the body where the rectum is. If you don't tolerate synthetic mesh, you wanna consider, um, with discussing with your surgeon, biologic or absorbable options or suture only fixation to the sacrum. As I discussed recently though, in a podcast episode, a lot of us with mast cell activation, even with biologic or absorbable options, we will still reject those [00:07:00] and our immune system will activate and cause those things to spit out. I talked about my spitting sutures from my forehead. So, uh, if you've ever had sutures before and if you've had any kind of issues with spitting sutures, see if you can get a copy of those operative notes so you can find out what kind of suture it was. Recurrent risk is higher without permanent material, but in hypermobile EDS, the trade-off can be worth it if reactions or erosion are a concern. You also want to ask specifically about low tension fixation, smaller implants and techniques to minimize traction on fragile tissues. That was part of the problem with my forehead by the way. It was under so much tension that, um, that that's part of, I think why the whole thing opened and kind of came apart. Okay. So if the approach is going to be peral, so that's coming from below, um, in the area where like we call that the saddle area. Also, if you're going to do an external approach, some of the things that you want to think about. There's an approach called the Delorme, um, which [00:08:00] is a mucosal sleeve resection that can help mucosal or internal prolapse with less deep dissection. There's another approach called the ELT Meyer, which is a perineal rectal. Sigmoid, which is an option for full thickness prolapse in carefully selected patients. In hypermobile EDS recurrence is a risk and success depends on optimizing constipation and any kind of disc syner. And in minimizing strain. We also want to address upstream drivers of recurrence, things like constipation and outlet obstruction. We wanna prioritize osmotic laxatives like polyethylene glycol, and magnesium as tolerated. You want a soft stool consistency, definitely gentle toileting posture, whether it's the feet on the stool or some other kind of, um, sitting type of device that can change the way your body is positioned in order to evacuate your bowels and also pelvic floor physical therapy. We also want to be thinking about cough and Valsalva. We [00:09:00] wanna treat any kind of chronic cough because that's going to put more pressure on the perineum. We want to avoid heavy lifting, and you want to make sure that if you are doing any kind of weight lifting, that you are doing exhalation during the effort for breathing rather than like holding your breath and bearing down, which is gonna put more strain on your perineum. If you have pots, postural, orthostatic tachycardia syndrome or dysautonomia, you want to work on optimizing your hemodynamics so that you have less straining. Some people have syncope on the toilet, which we want to of course avoid. We want to make sure that we optimize our fluids, salt, and compression, and use medications if needed. It's really important to coordinate with urogynecology and rectify any co prolapses at the same time, if at all appropriate, and also utilize native tissues or carefully chosen graft. There are some tweaks that we want to do that are specific to hypermobile EDS, such as position and handling. We want meticulous padding and avoiding hip over [00:10:00] abduction. So that's when the hips are, you know, normally people are in stirrups for this kind of procedure, and so their legs are apart. Um, and we want to make sure, number one, that we minimize, that we wanna minimize traction on. All parts of the body. Um, but we also wanna put people into position after verifying that the surgeon is ready to start. Um, especially at teaching institutions, sometimes a surgeon will be bouncing back and forth between several different rooms. Um, and this is true for all EDS patients, regardless of the type of surgery that they're going to have. Um, we don't want people sitting in a abnormal position for longer than is absolutely necessary. If you're an anesthesiologist and you're listening to this, or a nurse anesthetist, make sure that you know that your surgeon is ready before you put. Somebody with EDS into the surgical position. Um, when it comes to sutures and closure, we want to favor long lasting absorbable sutures with the caveats that I mentioned below using interrupted tension-free closure. Um, also consider adjunct skin adhesive. If you have ever had a problem [00:11:00] either with suture or with skin adhesive, try to get a copy of those records and get as much detail as possible to share with your surgical team. In advance, the more notice that people have more that they can prepare. Um, you also want to consider, have you had any problems with local anesthesia resistance in the past, and do you have any signs or symptoms of, uh, temporomandibular dysfunction or cervical instability? If you have pots, you wanna consider more aggressive hydration, and we want to be, of course, very gentle with every person's airway, however. We know that some people are at higher risk of developing a complication than other people, so definitely check out a previous episode where I discussed the pros and cons of wearing a cervical collar to surgery. We also wanna think about. How can we best support the body for healing? So we want to optimize hydration, protein, vitamin C, zinc. We want to manage anemia, consider estrogen status and postpartum hormones [00:12:00] if relevant. Um, I did wanna share one product really quickly. I don't have any financial relationship with them, but I used this when I was healing from my, uh, forehead surgery and it's called Juven, and it is in my Amazon store. This really helped me a lot. I was taking supplements as I always do, um, before I started using the juven and I was like a month outta my surgery, my incision was still open. It had dehisced, and my husband said to me, well, I wonder if you should take some of that juven. I was like, yeah, great idea. So I started taking it and that's when my incision finally closed. So it could be a coincidence, but I really think that it helps and I definitely would take it again if I have other surgery. Okay, so some other considerations for non-surgical or adjunct options. We want to really think about thoughtful pelvic floor physical therapy with a therapist who really understands connective tissue disorders. I know Sean, you've probably already had multiple courses of physical therapy, so this might not apply as much to you, but for [00:13:00] people who have not yet had surgery and or maybe their post-op and they're not doing as well as they would like, definitely investigate pelvic floor physical therapy. There's also some neuromodulation that can be done with sacral or tibial nerve stimulation when incontinence is a major symptom and anatomy is borderline. You can also consider bulking agents for focal internal prolapse or rectus seal related seepage. Um, in selected cases, pessaries are usually more helpful for vaginal prolapse, but they can also help reduce strain dynamics. Sean, I wish I could tell you the perfect surgeon to go to here in Colorado, but I don't have personal or professional, um, experience with a surgeon of that nature, a colorectal surgeon, so I wouldn't be able to make any specific recommendations. There are. Though some, uh, very big centers that have, uh, you know, pelvic floor and colorectal and urogynecology like the University of Michigan, Cleveland Clinic, Mayo Clinic, university of Chicago, Northwestern University of Wisconsin, [00:14:00] um, et cetera. Uh, so you might wanna consider one of those places and definitely one of the best things you can do is go on. Facebook or another site look for EDS support groups. Um, again, John Furman was involved in creating so many EDS support groups, and that's such a great place to really get EDS specific recommendations. So definitely ask in those support groups for a colorectal surgeon that people would recommend. So here's some questions that you should ask. Number one, how many redo recopies and peroneal repairs do you perform yearly? Of course, the higher the volume, the more likely the person is going to have a lot of expertise and success with your surgery. Two. Um, how comfortable are they with mesh free or biologic ventral opexy? Number three, do they co-manage with urogynecology and pelvic floor pt? Number four, what is their standard pre-op motility or defecography protocol? And number five, do they [00:15:00] have any hypermobile EDS specific anesthesia and closure practices? In terms of what to bring to the consult, you want to bring your one pager that has your medical history on it. You may also want to include another document that has the dates of your surgeries, the techniques the materials used, and any complications that you might've experienced. If you can get a copy of the operative notes, that would also be helpful, although they might be able to access those if they're on a system using Epic software. And you have checked the box for Epic everywhere. Um, other things that you want to include include imaging and out reports. Definitely make sure that you include a list of allergies and intolerances, especially including anything with sutures or adhesive reactions. Definitely make sure you mention any problems with local anesthetics in the past, whether it be delayed onset, need for a higher dose, need for a specific local anesthetic, et cetera. And I would also recommend bringing a one to two week stool and strain diary and list of laxatives tried. [00:16:00] And lastly, I would bring a summary of POTS and MCAS treatments that you are currently on and what your current functional limitations are. So the bottom line there is. A possibility of success. But of course, with each subsequent surgery, we do worry more and more about getting the mechanics right and the possibility of an enduring repair. Uh, whenever possible, we want to really get a very full pre-op testing, uh, performed. We want to choose a low tension tailored repair, often a ventral rec opexy with biologic or suture only fixation if mesh is a problem. Thirdly, aggressive managing of the drivers of strain like constipation, pots, cough, et cetera, and meticulous tissue handling. Okay, Shahnti, should we take a quick break right now? Shahnti Brook: I think we should take a quick break. Gave a lot of really great information and I think that, uh, Sean can, you know, find a lot of good resources from that. Dr. Linda Bluestein: Well, Sean, I hope that you find that helpful. We're going to take a quick break and when we come back we are going to talk about [00:17:00] Neurodiversity and Hypermobile EDS and HSD. We'll be right back. I'm super excited to tell you about the Bendy Bodies boutique. I'm so proud of our fierce styles and flexible designs. These are created by hypermobile artists. For hypermobile shoppers, there are so many fun items from clothing, accessories, home goods, and my favorite are the bags. I especially love the weakened or tote with one of the EDS tough designs. Whether you're shopping for yourself or someone you love, there's so many options to choose from. A portion of the proceeds goes to support EDS nonprofit organizations. For more information, please visit bendy bodies boutique.com. Thank you so much for listening to Bendy Bodies. We really appreciate your support. It really helps the podcast when you like, subscribe and comment on YouTube and follow rate and review on all audio platforms. This helps us reach so many more people and spread the information to everyone. Thank you so much again, and enjoy the rest of the episode.[00:18:00] Okay, we're back. Um, Shahnti, it is so great that you're here. I'm so happy that you're here. So do you have the next question for us? Shahnti Brook: Yes, Linda. Uh, we have a great question from Meg. Meg is asking about vision dyspraxia and its overlap with hypermobility. Here's Meg's question. I'm a college student who has dealt with extensive hypermobility in most of her joints for as long as she or her parents can actually recall. I'm, I'm also diagnosed with multiple learning disabilities along, uh, along with the dyspraxia and convergence insufficiency of the eyes. I was wondering if EDS and conte and connective tissue disorders have any impact on the visual system. Or if dyspraxia is a common diagnosis that people with connective tissue disorders get labeled with as children. Thank you for your advice. I love listening to your podcast, poor Meg. That sounds like a bunch of stuff to really deal with all through her life. Dr. Linda Bluestein: Yes, yes, [00:19:00] absolutely. And I will say right off the bat, these kinds of conditions are super, super common with EDS, which is why we're going to talk about this today. So important, I hear about this all the time. I would say probably. Every single day that I'm seeing patients or clients, I am hearing about people experiencing some kind of, uh, neurodivergence. So super common neurodevelopmental and learning related challenges such as dyspraxia and convergence insufficiency are extremely common. These issues arise from a combination of neurological proprioceptive and connective tissue related mechanisms, not from differences in intelligence or effort. So that's a really important point. Okay, so let's talk about the relationship between EDS and neurodivergence. So we know that EDS affects not just connective tissues in joint and skin, but also in the eyes, the nervous system and vascular tissues. This can lead to neuromotor visual and sensory processing difficulties that contribute to what appear as [00:20:00] learning challenges, but are really access or integration problems rather than cognitive deficits. Some common co-occurring neurodevelopmental features include dyspraxia, which is also known as developmental coordination disorder, convergence insufficiency, and other binocular vision disorders, and that's related to the eyes working together dysgraphia, which is difficulty with handwriting. Dyslexia, which is difficulty with reading and dyscalculia, which is difficulty with numbers. We also see executive function difficulties, sensory processing, sensitivity, or overload. So let's talk a little bit more about dyspraxia, otherwise known as developmental coordination disorder and how it relates to EDS. So dyspraxia is caused by impaired motor planning and coordination, not muscle weakness alone. In EDS. The proprioceptive feedback, which is the way that the body knows where it is in space without looking is impaired due to ligament laxity and delayed signal transmission. Poor prop percept makes it harder to calibrate fine and gross motor actions, [00:21:00] such as handwriting, tying shoes, balance and rhythm. Some of the common features that we see with this are clumsiness, frequently dropping things, poor balance or posture, difficulty with multi-step motor sequences, fatigue with writing or fine motor tasks, slow or consistent handwriting and note taking. And what's interesting is, um, as we've talked about a lot on this show, a lot of dancers have joint hypermobility. They don't all have connective tissue disorders, of course, but for me as well, when I was younger and I was dancing, I was super coordinated in dance, but I was super uncoordinated outside of dance. Shahnti Brook: Interesting. Dr. Linda Bluestein: Yeah. Isn't that interesting? So a lot of dancers will be able to relate to this. Like, wait, this is so weird. I've always wondered why I'm coordinated in dance, but not outside of dance. Um, so what are some of the things that we can do? We can work with occupational therapists that specialize in sensory and motor integration. We can work on our proprioceptive and balanced training, whether it be through Pilates, aquatic therapy, or dance based rehab. We can do [00:22:00] task segmentation and assistive technology. Um, we can use dictation software. We can work on our typing. We can use larger writing tools. And also working on fatigue management is important using shorter writing sessions and ergonomic supports. Let's talk about convergence, insufficiency, and visual processing. Um, I'm shocked how frequently I see this in my patients. So by definition, um, this is a difficulty coordinating both eyes to focus on near tasks such as reading, writing, or computer use. This is very common in EDS due to connective tissue laxity and the extraocular muscles and poor ocular-motor control. Some of the symptoms include eye strain, headaches. Double or blurred vision with reading, difficulty maintaining place when reading, skipping lines or words, poor reading, endurance sensitivity to light or motion. And part of the challenge is that a lot of these things can also occur with, um, migraine. They can occur with cranial cervical instability, CSF leak and a variety of [00:23:00] other things that people with EDS are at increased risk for. So what can we do about this? There are neuro ophthalmologists and neuro optometrists that could do a detailed evaluation looking for developmental or functional vision problems, not just refractive correction. You can employ vision therapy for eye tracking, focusing and convergence exercises, sometimes prism. Lenses or reading glasses are prescribed. And lastly, you can consider environmental adjustments such as appropriate lighting, large print screen filters, and frequent visual breaks. Okay, learning a cognitive processing is also something that a lot of people struggle with. So although general intelligence amongst EDS and HSD patients is typically above average, the following problems can contribute to learning difficulties. Number one, pain and fatigue can reduce attention and working memory capacity. Number two, autonomic dysfunction such as pots can cause cognitive brain fog, slower processing, and reduced stamina.[00:24:00] Number three, neuroinflammation and mast cell activation can exacerbate brain fog and word finding problems. And number four, sleep disturbances can lead to poor retension and executive dysfunction. These can mimic A DHD or mild cognitive impairment, but are secondary to physiologic instability, not primary neurocognitive decline. What are some interventions that we can think about? Number one, treat underlying dysautonomia and MCAS to improve cognitive clarity. Number two, work on chunking, repetition, and multimodal instructions such as combining auditory and visual cues. Number three, um, ask for accommodations for extra time for reading, testing, or note taking. Um, next noise reduction or tinted lenses to reduce sensory overload. And lastly, speech to text. Tools to bypass fine motor strain. A multidisciplinary evaluation can be very helpful. So working with a neuropsychologist can perform, uh, cognitive and academic testing that helps define strengths and [00:25:00] weaknesses. You can work with an occupational therapist that will help you with motor planning, sensory integration, handwriting, and visual motor coordination. You can work with a physical therapist that can help you with core stability, balance prop perception, and created strengthening. Working with a neuro optometrist or ophthalmologist can help with visual tracking convergence and ocular-motor rehab. And lastly, educational psychologists or learning specialists can help you tailor your work or school accommodations. So, Meg, I hope that was helpful. Information, learning difficulties in EDS are so common and they often stem from motor planning. Um, dys like dyspraxia, visual coordination like convergence, insufficiency, and cognitive fatigue, not intellectual impairment. These reflect connective tissue. Related proprioceptive, autonomic and neuro dysfunctions and multimodal therapies can greatly improve function and confidence. Okay, do we have another question? Shahnti Brook: Okay, so we have another great question for you. [00:26:00] Um, Maureen, uh, who has been listening to your podcast since its inception, and she says The information you provide your audience is invaluable and I would have to agree. She is asking about EDS and, um, she writes in, um, about one of her children. One of her children was diagnosed with, um, hypermobility EDS at 15 and has dealt with a long list of complications, including eye issues like retinal lattice degeneration, which has required laser treatment. She wonders if eye health and ophthalmology could be explored more deeply on the show since she hasn't really, um, seen that covered as much. Related to EDS. Maureen also brings up dyscalculia. A learning difference that's rarely discussed in the United States and expensive to diagnose and treat. She's curious why there's such a limited access here compared to countries like France and Canada where diagnosis, intervention are more affordable and available. Some tricky questions in there for you. [00:27:00] Yeah, Dr. Linda Bluestein: yeah, yeah. I, I fir first of all, Maureen, thank you so much for the kind words. I really appreciate that and definitely I do plan to cover ophthalmology more in the future. Please let me know if you have guest suggestions, because we always try to find somebody with. A high level of expertise. So if you have Maureen, if you or anyone else has suggestions for an ophthalmologist to talk about eye issues in EDS, please let me know. Otherwise, Shahnti is, has been working on, uh, finding someone and we have some ideas ourselves. But we're always open to suggestions. Okay, so let's talk about dyscalculia and how it relates to EDS. So first of all, dyscalculia is sometimes called math, dyslexia, but it's actually a specific learning difference involving number sense and quantitative reasoning. So people with dyscalculia might struggle with. Understanding quantities, like what five feels like, sequencing or following steps in math operations, estimating time, distance, or money, [00:28:00] memorizing math facts or formulas. Spatial organizations such as lining up numbers or keeping track of columns. And this affects actually about the same amount of people as dyslexia, five to 7% of the general population, which. Is really surprising because Maureen is right that there's so much less attention paid to dyscalculia than there is paid to dyslexia. So her, I really appreciate your question, Maureen. So why is this relevant in EDS and hypermobility so many people with EDS or HSD have co-occurring neurodevelopmental traits as we've just discussed? Contributing mechanisms may include visual-spatial, and proprioceptive challenges. Joint instability and poor spatial awareness definitely can affect perception of distance, direction, and patterns. Working memory and executive function difficulties. CR things like chronic pain, fatigue, or denomi can reduce cognitive bandwidth. For stepwise tasks, things like ocular-motor or convergence issues like we just talked about, um, can cause visual instability that can disrupt spatial [00:29:00] organization of numbers on a page, for example. And also we see things like cerebellar and cortical connectivity differences. Research suggests that shared pathways between coordination, timing, and numerical processing make these processes difficult. So what are some signs to look for? Trouble learning multiplication tables or with mental math confusion about left, right, or directional concepts. Difficulty estimating time, like how long will this take? Anxiety when handling money, scheduling or navigation and adults. This can involve avoiding budgeting, difficulty following medication schedules, or getting lost easily. How can we support people with dyscalculia? In school or in work, we can use things like visual supports, charts, color coding, number lines and manipulatives. We can use technology aids like calculators, phone apps, calendar reminders, and time trackers. I'm so heavily reliant on all of these things. The time trackers, the calendar reminders, the notes, apps, all of these things. [00:30:00] Um, we can ask for extra time on tests and step-by-step instructions. We can pair verbal and visual cues that can help us narrate math steps aloud while writing them down. Um, clinically or at home, we can consider neuropsychological testing to confirm strengths and weaknesses. We can consider occupational therapy or educational therapy for visual, spatial and sequencing skills, and definitely breaks are essential. This can help with fatigue, pain, or dys adenoma that can worsen math performance. So you definitely wanna build in pacing and hydration breaks. We also want to normalize and empower people that are experiencing dyscalculia. We want to emphasize that dyscalculia is neurologic and not a reflection of intelligence or effort. Uh, many with dyscalculia actually can excel in creative, verbal and big picture thinking. And in the EDS community, these individuals often develop strong pattern recognition and adaptive problem solving in other areas. We also want to highlight the need for understanding, not shame. Learning differences are [00:31:00] so, so common and they're part of the neurodiversity spectrum. And I also wanna point out that even if someone is doing well in school, we should be keeping our eye out for these kind of problems. I wasn't diagnosed with a DHD until I was in my forties, um, but there were signs of it going back into childhood, but I did well enough at school, so nobody was looking for that. Okay, so let's talk briefly about how Dyscalculia is diagnosed. Dyscalculia is diagnosed by formal testing by a licensed psychologist, neuropsychologist, or educational specialist, and these evaluations can include a cognitive assessment for IQ and problem solving, academic achievement testing, especially math calculation reasoning and fluency, working memory and processing speed measures, and review of developmental, medical and educational history. What are the diagnostic criteria? A diagnosis of dyscalculia is made when math performance is significantly below. Expectations for age, education, and intelligence difficulties have persisted for at least six months despite [00:32:00] appropriate instruction problems interfere with academic achievement or daily life. And these issues are not explained by other conditions such as vision problems, lack of schooling, or intellectual disability. This aligns with the DSM five criteria for specific learning disorder with impairment In mathematics. There are a variety of people that can diagnose dyscalculia, including neuropsychologists. They tend to be the most comprehensive and they often include cognitive and attention profiles. Um, I often recommend neuro. Cognitive testing and neuropsychiatric testing for my patients because I feel like we very often miss A DHD. Um, autism we might miss, um, per, you know, personality disorders and other things that could greatly influence how people are interfacing with the world and having that information can be super helpful. We also want to work with an educational psychologist. They usually focus more on learning and school performance. We could also have a school-based evaluation through an IEP or 5 0 4 plan or a private. Evaluation that's more flexible, but there's a higher [00:33:00] out-of-pocket cost. Since Maureen did bring up cost, I want to mention that. So first of all, if you go through a public school psychologist, it's probably going to be free. Um, it might be hard to access this, but this could be available if learning difficulties affect educational progress. Um, but the results might take months to achieve the scheduling and the results. If you go through a private psychologist or neuropsychologist, um, like a licensed PhD, this could cost between 1,030 $500. Your insurance may or may not cover it, but this could include full cognitive and academic battery of testing. You might be able to get this scheduled faster. You might get a more detailed report. Which could be helpful not only for accommodations, but for things like, you know, determining other, other, um, modalities that you might want to employ. So that could be really useful. Um, you could also consider a university training clinic. Sometimes if you work with a graduate clinician that's supervised by a licensed psychologist, that could cut the cost down significantly to 300 [00:34:00] $800. Um, it could have a lower cost, but longer waiting times. And lastly, there are lots of different online assessments that people can do. The cost of those is significantly less, like a hundred to $400, but that would be for screening only and cannot be used for a formal diagnosis. Definitely check with your insurance because insurance coverage is going to vary greatly. Some plans will reimburse evaluations if coded as neurodevelopmental or cognitive disorders rather than purely educational. Some of the next steps that you could consider after diagnosis include educational accommodations such as extended time, use of calculators, tutoring, visual aids, multisensory math instruction. You could also consider therapeutic support, educational therapy, cognitive training for working memory and occupational therapy. If coordination is also affected, I would recommend a reevaluation every three to five years or so, or if educational demands change. So our takeaway here is that, um, math time and spatial reasoning can often be a struggle. And this is not laziness [00:35:00] or lack of effort. It could be dyscalculia, a brain-based difference that often coexists with EDS and other invisible conditions. Understanding it better can allow us to build better supports and reclaim confidence. So, as you know, we end every episode with a hypermobility hack, and today I have two hacks for you. We're going to get to a Neurodivergency hack in just a moment. But in the meantime, I want to tell you about a hack that I literally just learned yesterday. So if you're watching this on video, you probably noticed that my hair looks better than it has in the last few recordings. I just got my hair done yesterday, so my hair stylist knows that I always struggle with. Being in the shampoo bowl. I don't know Shahnti, if you've ever struggled with that, but I have. It hurts. It hurts. It hurts. I have chronic neck pain and I literally, when I moved to Colorado, I went to a new salon and their shampoo bowl was the most uncomfortable shampoo bowl I had ever been in. And I liked the stylist a lot. She was really nice. I thought she did a really great job, but I didn't go back because the shampoo bowl was so uncomfortable. Shahnti Brook: Oh, [00:36:00] that's bad. That's a bad one. It must really hurt. Dr. Linda Bluestein: It. It was, it was really, really bad. And I've had, you know, neck pain off and on, but I, I can manage it quite well. And so I'm really concerned about being in a shampoo bowl like that and putting myself into a flare that, you know, is gonna set, set me back. Right. So, yeah. So I really want to avoid that. So now I've been going to a new stylist and I've been going to her now for over two years. She's wonderful. Um, Jess, if you're listening. You're amazing. Um, and so when I saw her yesterday, she said. Do you wanna try going face down in the shampoo bowl? And she had just had a client who had had neck surgery and who could not at all go, uh, you know, face up in the shampoo bowl. So what she did was she put, um, a towel in front of the person's face and then she put towels around their neck and everything and then had them, um, face down. And we're gonna include pictures on the YouTube Genius. Yeah, on the YouTube. Yeah. Absolutely genius. So even with [00:37:00] her better shampoo bowl and using the padding, I've still struggled a bit with, um, with this. So like I get my hair foil to get my hair colored. I do the foil 'cause it doesn't then touch the scalp. Um, but anyway, I always sit up while she takes all the foil out. Sometimes I have to take breaks in the middle. So if this doesn't work for you, those are other things to ask. Like, can I minimize the amount of time in the shampoo bowl? Can I take breaks, um, et cetera. Um, so, and, and then also using extra padding of course also helps, but this face down technique, so let me describe it. So you've got, you know, a towel over your, over your eyes and you need to hold it fairly tight without putting too much pressure on your eyes. The towel will get wet, um, and the back of your neck will get wet. So, Shahnti, when she was doing this, I was literally giggling the entire time because the water like just tickled my neck so much. And I was like, almost like screaming. I thought like, people are gonna just wonder what is going on back there. Shahnti Brook: I can imagine like, you're like, there's water Dr. Linda Bluestein: everywhere. [00:38:00] Yeah. Yeah. It, I, my clothes didn't get wet, which was great, but it tickled my neck so much. Um, so we'll include pictures on the YouTube so that you can see what, what this looked like. But anyway, so, so I, I propped my elbows. Skin in the neck. Rust. So in the neck, rust. Instead of my neck, it's my elbows, and then my, and then my hands are over my face like this with the towel. Okay. Okay. Um, I did have to switch my legs. So like at one point I was on both knees, then I was on one knee. Mm-hmm. And I also was switching my back between like, um, I guess that would be cat, this would be Cal. So, camel, camel, camel, cat, right? Like that. So I was doing that with my back so that I wouldn't strain my lower back. Um, but it was much better for my neck and we got through it. And so I wanted to share that hack with everybody. What do you think of that? That one? That is a great one. Shahnti Brook: I might, I might actually ask if I could try that, because you know what, I've got like a lot of neck pain too, and like sitting in that is torture. It [00:39:00] is. Even when they put a towel behind you, it's torture. Yeah. It's Dr. Linda Bluestein: absolute torture. Yeah, it is torture. That's a good Shahnti Brook: idea. Dr. Linda Bluestein: Yeah. I, I don't know why it's so painful, but it is so painful and it seems like no matter what I've done in the past. It's not less painful. So I'm, I was so excited to share this hack when this happened yesterday. I was like, yay, I can share this hack tomorrow. Shahnti Brook: I love Dr. Linda Bluestein: it. Shahnti Brook: I love it. I think everyone, I think we, we all, we have to try it. Okay. I'm trying it next time. I'll let you know. Okay. Dr. Linda Bluestein: Try it, try it, try it next time. And, and I want, um, everyone listening right now, if you. Try this, please let me know. Or if you also have struggled with shampoo bowls, please let me know. If you have any other alternative ways that you have, uh, gotten around this problem, please send us a message. Please message us on social media. Go to the, you know, the bendy bodies podcast.com website. We love getting messages on on there. And that really helps us formulate the questions for these shows. So please give us your feedback. Uh, let us know what you've tried. [00:40:00] We love questions. Yes, we love questions. We love feedback. We love hearing from from all of you, so thank you. Thank you. Thank you for those messages. Okay, so the next hack we're gonna talk about is for people with Neurodivergency, which includes me. I have A-D-H-D-I. It's something that I did not know, as I mentioned, until I was in my forties. So, uh, it could, it could be a struggle for sure. And actually there was an article that came out today in Forbes. Um, somebody interviewed me about my A DHD me, they interviewed me and another physician about our A DHD and really wanted to focus on were there things where our A DHD actually was helpful. And I think for me it actually is because in some ways it helps me to see connections between things that I think maybe. Some more linear thinkers might not think about. So, um, so that was a really interesting article that just came out in Forbes, uh, I believe today. Okay, so our hack for neurodivergence is externalize everything. So why does this work? Both neurodivergent folks and people with [00:41:00] EDS often deal with executive dysfunction, fatigue and sensory overload. When we keep too much in our head. This burns precious cognitive energy, energy that you need for pain management, mobility, and daily living. This totally explains why I have. I have lists everywhere. Um, I have lists in my notes app. I have, I have an entire, yeah, I have this entire, like, you know, I always keep clipboards in multiple places in my house. Mm-hmm. So I can write everything down. So I already was externalizing, um, a lot of things, but I think there's gonna be some other hopeful, hopefully some other tips in here that people are gonna find helpful. Absolutely. Yeah. Okay, so what can we do? We can use visual cues instead of mental lists. Things like sticky notes, whiteboards or phone widgets that you see every day. And I will leave things sitting out as as a reminder that I need to do various different things, especially if it happens when I am like going to bed at night and I don't want to turn a light on to write [00:42:00] something down. I will instead like put my toothpaste in a weird spot so that when I go to reach for my toothpaste and it's in this weird spot, I go, wait, why is my toothpaste in this weird spot? Now, of course, that's not a specific. Like I don't, I have to try to, I have to remember why I did that, but at least it's something that is a cue, right? So, so that often helps. Okay. Also, we can create body double systems work alongside someone, virtually or in person to help us stay on tasks. We can build pre-decision kits. We can pre-pack our medication braces, snacks, or compression gear, so you don't have to rely on memory or last minute energy. So I always pre-pack my supplements and when I run out, if I don't have time to like do the big pre packing, I get so stressed out because then I have to remember. Every morning, every evening. Okay. Which are all of the things that I need to take. So I'm a big, big fan of pre packing the medication and supplements. Uh, we also can automate [00:43:00] routines with alarms, Alexa reminders, or if this, then that triggers. For example, if the heating pad turns off, then it's time for a hydration check. Um, Shaji, have you ever read the book Atomic Habits? No. Oh, it's a fantastic book. And actually that book is. They totally stress if this, then that. Um, so they, I like it. Yeah. So they, they talk a lot about like small habits and how that can make such a huge difference in your life. Atomic habits, that's where you get the name, small, small habits, but also, um, if you take a habit that you want to add and if you connect it with another habit that you're already doing, it's gonna make it more likely that you do it. I like it. I think I'm gonna have to read that one. Yeah, it's, it's in my, uh, favorite books list on Amazon. Perfect. So yeah, definitely check that out. And you can also pair this with micro pacing. Take breaks during your activities into smaller, more gentle chunks that can respect both your joints and your nervous system. Shahnti, thank you so much [00:44:00] for being here. It was really fun. Fun. Shahnti Brook: Thanks for having me. I love being here with you and answering all of our fans' questions and seeing, you know, all the fun things that they write in and share. Yes, Dr. Linda Bluestein: yes. We have the best fans. Thank you so much to each and every one of you for sharing the podcast, listening to the podcast, and giving us your feedback and your questions. We really, really value each and every one of you. Okay, well, that's it for today's episode. We love your fantastic questions. Please keep sending them into bey bodies podcast.com for a chance to be featured in a future episode. You can help us spread the word about joint hypermobility and connective tissue disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex conditions. Did you. You know that I also offer one-on-one support for both clients and healthcare professionals. Whether you're living with a connected tissue disorder or caring for someone who is, I've got your back. Check out my coaching and mentorship options on the servicesPage@hypermobilitymd.com. You can also find me Dr. Linda Bluestein on Instagram, Facebook, Twitter, or LinkedIn. At [00:45:00] Hypermobility MD you can find human content, my amazing producing team at Human Content Pods on TikTok at Instagram. You can also find full video episodes up every week on YouTube at Bendy Bodies. Podcast. I'm so glad you're enjoying the Bendy Bodies podcast. We love bringing on guests with unique perspectives to share. However, these unscripted discussions do not reflect the views or opinions held by me or the Bendy bodies team. Although we may share healthcare perspectives on the podcast, no statements shared on bendy bodies should be considered medical advice. Please always consult a qualified healthcare provider for your own care to learn about the Bendy Bodies program disclaimer and ethics policy submission verification and licensing terms and HIPAA release terms, or reach out with any questions. Please visit bendy bodies podcast.com. Bendy Bodies podcast is a human content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast. Thank you so much for watching. [00:46:00] If you enjoyed this video, give it a thumbs up and leave a comment below. I love getting your feedback. Make sure to hit that subscribe button and ring the bell so you will never miss an update. We've got plenty more exciting content coming your way, and if you're looking for more episodes, just click on one of the videos on the screen right now. Thanks again for tuning in and I'll see you in the next episode.