#duchennemusculardystrophy

[orthotv]

🔰Pediatric Orthopedics Active learning Session - 42

📚Topic : An Update: Orthopedic Management of Duchenne Muscular Dystrophy

🗓️Date & Time : 16th April 2024 Tuesday 8:00-9:00 pm IST

💻Click here to watch: http://tinyurl.com/OrthoTV-POALS-42

👨‍⚕️ Speaker : Dr Jason Howard Delaware, USA

🤝 OrthoTV Team: Dr Ashok Shyam, Dr Neeraj Bijlani

📺 Streaming Live on OrthoTV www.orthotvonline.com

👨‍💻 Join OrthoTV - https://linktr.ee/OrthoTV

[rahrahkaz]

Conclusion: We Can’t Do It All

Although I’m not completely fulfilling my 2023 goal of monthly blogs, I’m giving myself grace and not grief. This is a phrase that I have come to grow and love and accept, that I learned from my kids school, Our Lady of Peace a few years back. Mr. Paul Berry used these words as we navigated the COVID school years. It just works, doesn’t it? Give Grace, Not Grief. I have found this helpful as I encounter feelings of frustration daily. This ranges from watching my boys lose the ability to do things they could do the day before to countless fights with insurance to feeling unequipped to have two boys that will be wheelchair bound in the not-so-distant future (barring any life-altering treatments that they would need almost immediately).

However, I have found it equally helpful, if not more helpful, for me to apply it to myself. Duchenne has a way of pulling me in so many directions, and it’s so exhausting. I recall upon diagnosis about 5 years ago that I declared I would do ANYTHING to help my boys stay ambulatory and stay alive. I would move across the country, I would move to a different country, I would quit my job, I would sell everything I owned, I would advocate, I would prioritize them and what they need above my own needs, always. While some of that is still true, it’s also not practical as a human with a job, a husband, 2 other kids, a home I love, and family and friends that I adore and need to see. It’s also been so evident that unless I place some of my own needs above my boys, I will not be able to give them the love, support and physical assistance that they need. So here I am, 5 years later, giving myself grace, not grief for allowing myself to prioritize my own needs at times.

Where I have struggled the most is with the to do’s for the boys. It truly is a list that never ends and I’ve recently realized, I just can’t do it all. We, as a family, just can’t do it all. And so I’ve allowed myself to give us grace, and not grief. I’ll share some examples for those that may be able to relate.

 -  Caleb has headgear that he was instructed to wear nightly before getting his braces. Caleb didn’t like falling asleep with his headgear, so this required us to attempt to wake him up before we went to bed, trying to pry open his mouth, get rubber bands on what seemed like the smallest hooks in the world, while hoping he didn’t chomp down and then attaching this contraption to the front of his head. Then telling him to go back to sleep. I found myself stressed every night as this time approached or pushing out my bed time so that I wouldn’t have to execute the headgear routine. Nope! I’m not letting headgear add stress to my already stressful life. So we did it on our time. Some weeks it was every other night, other weeks it was not at all. Sometimes we negotiated with him that he needed either his nighttime braces (on his feet) or his headgear, and let him choose. Yes, this meant more weeks overall, but it eased stress for all involved.  Give grace, not grief.

 -   Nighttime braces are another pain point. Both boys are supposed to wear their nighttime braces every single night. While they tolerate them (mostly) they beg to have nights without them. So we have an agreed upon wear pattern for Caleb (right leg, both legs, none) that we felt like was a good compromise. Meanwhile Dunky, who has a mind of his own, will not go to sleep with them on at all. So I was to go in before I go to bed and try to put on his braces while he is sleeping. This is no easy task and I started to dread it and get more stressed as my bedtime became near. Nope! Not letting nighttime braces add stress to my already stressful life. So I found my own cadence. I do one foot each night and sometimes I allow myself to do none and that’s okay! Give grace, not grief.

 -   New medications are also a stressor. We were advised to start Caleb on growth hormone therapy nearly one year ago. I knew this would be an insurance fight that I just wasn’t ready to embark on as I was already fighting other medications with insurance. So I didn’t. Six months went by and during our check-in with endocrinology and asking about why we hadn’t yet started, I allowed myself grace instead of beating myself up. I simply said, “I didn’t have the time or energy to focus on it.” I NEVER would have imagined allowing myself to say that upon diagnosis. I would do everything promptly and as I was told, but the reality is I am human with so many demands and competing priorities, and sometimes I just get to choose. Give grace, not grief.

 -   Dunky struggles with his eyes. Ophthalmology is a specialty all Duchenne kiddos see as cataracts are yet another side effect of those lovely steroids. But Dunky has extra complexities as something called exotropia, meaning the outward drifting of his eyes. Unfortunately, he thinks he looks “stupid” in his glasses and refuses to wear them despite the truth that they are so flipping adorable. Watch out world because his next request was if he has pink glasses, he will wear them. I didn’t realize we were one year late for his next Ophthalmology appointment until an annual well visit reminded us his eyes are bad. In my defense (although I don’t need defense when I have grace), no one called me to schedule this appointment. Apparently, I’m just supposed to remember or be organized enough to know to schedule the appointment. Dunky will likely need surgery and of course we can’t get an appt until September. I started to beat myself up, but then I stopped and paused, and gave myself grace. Stay tuned for updates on next steps.

I must say embracing this phrase has been empowering for me. I’m not going to beat myself up over everything that I’m not doing. I’m going to celebrate all of the things that I am doing, both for myself and my family. It’s allowed me to recalibrate my priorities so that the most important things become the focus. The most important things are not nightly headgear or wearing nighttime braces on both feet, but it’s seeing the smiles in my boys faces when they make a request and I simply say “yes.”

On July 26th, Caleb will be going into surgery for a tendon transfer in his right foot in hopes he gets a bit more time on his feet before he is wheelchair bound. We are nervous but know that we have done all we can to weigh the options and have consulted with the best of the best. We feel so blessed to have our boys under the care of the best providers that are more than a clinical care team, they are a large part of our boys’ lives that we have grown to love over the years. We will keep you updated on the surgery and would welcome love and support during this time and the recovery after.

Duchenne is a beast. It is sad, terrifying, frustrating and exhausting, just to name a few. Everyday their needs get greater and I wonder how I will be able to continue to help them. Just recently I had someone say, “you still pick them up?”  Yes! I do, because I don’t have a choice! I tell my boys every single day, “I will always be here to help you, no matter what!”

July 7, 2023

[treebreadcares]

Double ABCX Model Of Caregiver Stressors And Perceived Resources

Background Duchenne and Becker muscular dystrophies, collectively referred to as dystrophinopathies, are recessive X-linked disorders characterized by progressive muscle weakness and ultimately cardiac and respiratory failure. Immediate family members are often primary caregivers of individuals with a dystrophinopathy. Methods We explored the impact of this role by inviting primary caregivers (n=209) of males diagnosed with childhood-onset dystrophinopathy who were identified by the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) to complete a mailed questionnaire measuring perceived social support and stress, spirituality, and family quality of life (FQoL). Bivariate and multivariate analyses examined associations between study variables using the Double ABCX model as an analytic framework. Results Higher stressor pile-up was associated with lower perceived social support (r=-0.29, p Read the full article

[medtravellers]

MedTravellers is pioneering stem cell therapy as a primary alternative treatment for Duchenne Muscular Dystrophy and other rare diseases. Explore advanced care options today.

Contact Us: +91-880-2029988 www.medtravellers.com

#StemCellTherapy #DuchenneMuscularDystrophy #RareDiseases #AlternativeTreatment #RegenerativeMedicine #MedTravellers #HealthcareInnovation #PatientCare #AdvancedTreatment #StemCellResearch

[wheellifestories]

Never underestimate the heart of a champion 🏆 • • • "Week 4 drills done 2 days into I leave to Minnesota for team USA Selection camp I can’t wait I’m pumped." - @troy_c95 • • • Send your pics & videos to @WheelLifeStories or tag #WheelLifeStories for a feature! || Visit our website at WheelLifeStories.com! ||#repost #wheelchaircommunity #adaptivecommunity #disabilityawareness #adaptiveathlete #iamadaptive #wheelchairdontcare #wheelchairlife #duchennemusculardystrophy #wheelchairskillz #wheelchairathlete ⁣#wheelchairsports #adaptivesports #practicemakesperfect #wheelchairsoccer #wheelchairability #abilitynotdisability #nolimits #liveyourlife #wheelchairguy #amazingpeople #keeppushing #handicappable #differentlyabled #disABILITY #unstoppable #adaptandconquer #wheelchairmotivation #nevergiveup https://www.instagram.com/p/B5LGsGVpsGa/?igshid=13uldp7pcgfs9

[growingbrain]

Duchenne Muscular Dystrophy Treatment in Vadodara

Duchenne Muscular Dystrophy (DMD) is a common inherited neuromuscular disorder that affects all races and ethnicities. 

DMD appears in young boys, usually between ages 2 and 5. It causes muscle loss that gets worse over time.

 Visit Dr. Smruti Patel to get the best treatment for Duchenne Muscular Dystrophy (DMD) or Muscular Weakness in kids in Vadodara, Gujarat. 

 For More information: 

 Visit Our Website: www.growingbrain.in 

 Call On:  0265 3514313 OR 9727816476 

 Email us: growingbrainclinic@gmail.com

[servicedogforum]

September 7th is Duchenne Muscular Day. Follow us on Facebook to support disability awareness! #disability #disabilities #disabilityawareness #disabilityinclusion #invisibledisabilities #health #medical #equality #inclusion #servicedog #servicedogs #duchenne #duchennemusculardystrophy #musculardystrophy #musculardystrophyawareness https://www.instagram.com/p/CThdR_FreDO/?utm_medium=tumblr

[stemcellindia01]

Currently treated as intractable problem but bone marrow cell transplant is saving lives of children and giving them better quality of life. for further details contact Dr B S Rajput, consultant orthopaedic and stem cell transplant surgeon at Mumbai.

[henryskat2014]

Any excuse to get #Glam in #COVIDtimes Me & "Sash-a" went to the @alexs_wish #Unmasquerade Celebration ~ a #VirtualBall to raise money and awareness for #duchennemusculardystrophy Such an enormous amount of money raised in one night and the figure keeps rising. Proud to be part of this fantastic celebration. Thank you for having me :) Kat ~ #MsGreatBritainFinalist2021 #MsGreatBritain2ndRU 🇬🇧 #AlexsWish #curingduchenne #kathenry #MsGB2021 #GB2021 #BeGreat #TeamKat #TeamGB #GreatBritain #pageantland #missosologyuk #pageantgirl #MsGreatBritain2021 #RoadToMsGB #RoadToMsGB2021 https://www.instagram.com/p/CHyatxHpE57/?igshid=lj9725k72zh4

[stemcelltherapydmd]

Stem cell therapy in duchenne muscular dystrophy (dmd) Stem cell therapy in duchenne muscular dystrophy. Dr Rajput is best known for the Stem Cell Treatment he does to treat his patients. He is the Best Orthopaedic and Stem Cell Transplant Surgeon in India. Visit Us - http://stemcelltherapyindmd.in/

[dppspain]

#Repost @pulserasduchenneporelmundo • • • • • Al igual que todos, ahora a las Pulseras Duchenne también les toca quedarse en casa!!! Hazlo por el bien de todos! Si estos días también quieres colaborar con nosotros, hazte fotos con las pulseras en casa y etiquétanos #quedateencasa #pulserasduchenneencasa #duchenne #duchennemusculardystrophy #quédateencasa @dppspain https://www.instagram.com/p/B9uLnXbqIVM/?igshid=qekfim5apcwf

[abigailrosehill]

Sorry it's late, work got me good yesterday! @missgb_official countdown: @alexs_wish #alexswish is a charity set up by the Hallam family after their son Alex was diagnosed with Duchenne Muscular Dystrophy. Emma, Alex's mum, came to our Masterclass day back in November to talk to us all about what the charity is doing to make this quote a reality. Before becoming a Ms Great Britain finalist, I had heard of Duchenne but wasn't clued up beyond the degenerative nature of the condition, so learning more about Duchenne and working with Alex's Wish has been so enlightening. Swipe ➡️ for more! #roadtomsGreatBritain #RoadtoGB #countdown #msgreatbritain #missgb #missgreatbritain #begreat #msgreatbritainfinalist2020 #abigailformsgreatbritain #abigailrosehill #duchennemusculardystrophy #duchenne #cureduchenne #charity #fundraiser #fundraising #awareness #supportcharity #supportsmallcharities #ukcharities #pageantgirl #pageant #beautyqueen #model https://www.instagram.com/p/B75xc0sALNr/?igshid=sdyw9gwhfm2s

[mavenbuilt]

October #mavenbuilt contest winner! We’re changing up the rules a bit for this month’s winner. Our good friend @miss.jessieallen took this great photo, but we think the swag award goes to Steven - he has a box of Maven swag heading his way! To submit your photos, tag #mavenbuilt or #mavenoptics and you'll be entered to win a sweet box of Maven swag! New winners every month! #Repost @miss.jessieallen In all my years of guiding, I don’t believe I’ve ever cried the whole way home after dropping guests off at the airport until today. Steven brightened so many lives during his adventure with us in Wyoming. This charming, witty, joyful human became my buddy pretty quickly, and I feel honored to have guided him on an exciting muley hunt. Thank you to The Outdoor Dream Foundation for providing this adventure for Steven and for enriching all of our lives in the process. I hope that by sharing this, one of you readers might feel compelled to learn more about ODF and see how you can help a child fulfill an outdoor dream too! #outdoordreamfoundation #muledeer #hunting #duchennemusculardystrophy #wyoming #sitkagear #sickforit #mavenbuilt #wildernessathlete (at Lander, Wyoming) https://www.instagram.com/p/B4ixZATlnqa/?igshid=1qalucc8fotsq

[growingbrain]

Duchenne Muscular Dystrophy Treatment in Vadodara

Duchenne Muscular Dystrophy (DMD) is a common inherited neuromuscular disorder that affects all races and ethnicities. 

DMD appears in young boys, usually between ages 2 and 5. It causes muscle loss that gets worse over time. 

Visit Dr. Smruti Patel to get the best treatment for Duchenne Muscular Dystrophy (DMD) or Muscular Weakness in kids in Vadodara, Gujarat. 

 For More information: 

 Visit Our Website: www.growingbrain.in 

 Call On:  0265 3514313 OR 9727816476 

 Email us: growingbrainclinic@gmail.com

[danmarinophoto]

Were you at Pietro’s Fight Night Round VII on Friday to help support ending Duchenne Muscular Dystrophy? _ See all of the photos on http://events.danmarinophoto.com (or click on our link in profile). _ Pietro in now 10 years old and is fighting the good fight along with his amazing parents, brother and extended family network. Learn more and please consider helping - visit @pietrosfight . . . . . . #enddmd #duchennemusculardystrophy #fightnight #pietrosfight #elcaribecaterers #event #fundraiser #danmarinophoto #DanielMarino #DanielMarinoStudio #brooklyn #nyc #eventphotographer #nycphotographer (at El Caribe Caterers) https://www.instagram.com/p/BvKYd75h3hW/?utm_source=ig_tumblr_share&igshid=1bcf2kly4kx7d