International Parkinson and Movement Disorder Society’s Post

In the February edition of Mivision Magazine, I teamed with researchers Lauren Ayton and Karyn Galvin to share the latest insights into Usher syndrome. In the article titled "Improving Care for People with Usher Syndrome", we cover diagnosis, management and what the future looks like in terms of ongoing research. You can read the full article here: https://lnkd.in/erECX6Pn

The hummingbird said: I'm doing the best I can. [Full story by Wangari Maathai and others (skip if you know the story): A big forest is on fire. All the animals come out, transfixed. They watch helplessly as the forest burns, feeling overwhelmed and powerless; except for one little hummingbird, who says: I'm going to do something about the fire! She flies to the nearest river, takes a drop of water, and drops it on the fire, then goes up and repeats the action again and again. The other animals, including much larger ones like the elephants, who could carry much more water, stand there helpless, questioning the hummingbird: "What do you think you can do? You are too small. This fire is too big. Your wings are too small and your beak is too tiny, allowing you to carry only a small drop of water at a time." The hummingbird responds: I am doing the best I can.] The patient remained happy and optimistic about her future despite her #BrainSee test score being interpreted by doctor as high risk for progressing to Alzheimer's dementia within 5 years. She said: "Good news is, it's not too late. I'm not demented yet and can still manage my daily activities. I will do the best I can to improve my condition. My neurodegeneration isn't as big as a wildfire, and I can do a lot more than a hummingbird." She smiles and leaves the doctor's office, leaving all of us in awe. "Will we be this cheerful when we grow old?" the doctor wondered. Currently the waiting time for a #BrainSee test in our clinic is 3 weeks (we are doing our best to decrease the wait time). But if your family member or friend already has a doctor to prescribe them #BrainSee test, they can get the test done as early as next week. Qualified doctors to prescribe #BrainSee test are: primary care physicians, family physicians, internal medicine specialists, neurologists, geriatricians, and physiatrists. Prescription form is here: https://lnkd.in/dFfPnq4u, they just need to sign and send it to us at support@brainsee.ai. Regardless of the prescribing doctor, we'll be there to support the patient during the whole process from their first doctor's visit until they get the #BrainSee test results and next steps. Learn more: https://lnkd.in/dhBgwj9E

Our Symptoms & Science webinar, 'Sip, Swallow, and Support: Managing Dysphagia in Lewy Body Dementia,' is now available on LBDAtv. In this session, Dr. Darla Freeman, a speech-language pathologist, described how #Lewybodydementia affects swallowing and the complications that can be caused by this, sharing valuable techniques to manage and cope with these symptoms effectively. Watch on LBDAtv at https://ow.ly/7zRH50Tzzs7

🔵 NEW Study Group for CranioSacral Therapists 🔵 EFFECTIVELY SUPPORTING INDIVIDUALS WITH ALZHEIMER’S AND DEMENTIA USING CRANIOSACRAL THERAPY 👉👉 OPEN TO ALL CST LEVELS (FROM CST 1 ON UP) Nearly 7 million Americans are living with Alzheimer’s and that number swells when we start to include all the other cognitive decline health challenges facing Americans today. Cognitive decline, Alzheimer’s, and Vascular Dementia are becoming so prevalent that very few families are free of the reach of these devastating health challenges. But it does not have to be that way. If you have family members, patients, or clients facing these health challenges then please join me and Guest Speaker Michael Morgan, CST-D, an Upledger Instructor, who has made Alzheimer’s and related diseases his area of expertise. The discussion will include our role as CranioSacral therapists and what we can do to support those who are affected by this crippling widespread health issue in our culture today. Join us for an information-packed study group – with hands-on practice woven into the day, as always. More details and link to register>> https://lnkd.in/etfW7Etd

Supporting a loved one after a stroke requires significant physical and emotional effort from families, caregivers, and friends. Recovery varies for each patient, and understanding this process is crucial. Set Realistic Expectations: Discuss recovery expectations with a neurologist early on. Stroke recovery can involve complications like weakness, vision problems, aphasia, and cognitive issues. Recognize what your loved one can realistically do and be prepared for ongoing reassessment. Be Patient: Up to one-third of stroke patients experience aphasia, which affects communication. Give them time to express themselves without rushing to fill in words. Patience is key in managing this condition. Be Receptive: Ask directly how you can help and listen to their needs. Balance offering assistance and allowing independence. Attending therapy sessions can help understand their limitations and capabilities. Seek Your Own Support: Caregivers also need support. Cedars-Sinai offers monthly support groups for stroke survivors and caregivers, providing a supportive environment for everyone involved in recovery. Understanding and patience are crucial in supporting a loved one’s stroke recovery journey. #neurology #stroke #support With the Specialist combines artificial intelligence with a board certified neurologist to enhance neurological care in the primary care setting, bringing the neurology consult to you. #withthespecialist #aiinhealthcare #innovation https://lnkd.in/gjRnbNkE https://lnkd.in/gExrwg2P

Join us for a Mind+ Neurology Wellness Workshop hosted by Sarah Arndt, Certified Health Coach School can be tough. Managing migraine disease can make school even harder for your child. During this presentation, our goal is to help you even the playing field so your child can get the education they deserve. We'll cover: Migraine 101: Learn how to identify migraine in children and adolescents. Find out what symptoms to look out for. Spoiler alert! It's not always head pain! Get Help: Make the doctor appointment, get diagnosed, and get the support you need! Next Steps: Find out how parents can request special accommodations at school to care for their children suffering with migraine. Register for this free presentation today! https://bit.ly/3TSYvX2

In honour of Aortic Dissection Awareness Month, GADA hosted a special expert panel webinar. This educational event focused on the latest in aortic dissection diagnosis, treatment, and the critical role of genetic testing and mental health management. There was also some time addressing questions with each expert from the audience. Our panelists, including top cardiovascular surgeons, geneticists, and mental health experts, covered key topics such as: • Accurate diagnosis and medical management of aortic dissections • Advances in surgical treatment • Importance of genetic testing and screening • Coping mechanisms for PTSD, anxiety, and grief Watch the webinar replay on our YouTube channel now: https://lnkd.in/gNyPedWg #AorticDissection #AorticHealth #GeneticTesting #MentalHealth #Webinar #AorticAwareness #aortaed #smad3 #ACTA2 #Loeysdietzsyndrome #marfansyndrome

https://lnkd.in/gUChsGHj A new substack: Lessons my patients taught me: the grace of just getting on with it

I would like to share the second video in a series about Parkinson’s Disease and the AA/Black Community with Dr. Hiral Shah, MD, MDS and Kermit Smith, a member of PD Movers. Checkout the video below From GoodRx: Living With Parkinson’s Disease: The Importance of Staying Connected With Loved Ones Support from friends and family can lead to improved outcomes for people with Parkinson’s. Learn more about Parkinson’s disease support groups in this video. https://lnkd.in/gFDkFgrN #parkinsonsdisease #yopd #Parkinsonsresources #Parkinsonsawareness  #Neurology  #brainhealth  #health  #healthandwellness  #wellness  #wpc #Parkinsons #BlackwithPD #AfricanAmericanwithPD #clinicaltrials  #pdmovers #parkinsonresearch #blackpd #100blackmen #100blackwomen #blacksororities #blackfraternities  #naacp  #urbanleague #rainbowpush #blackcaucus #BlackExcellence #SIG-BlackDiaspora #AfricanAmericanwithPD #underservedcommunities  #underengaged  #PDawareness #BlackwithPD #AfricanAmericanwithPD

Each year, over five million people suffer severe TBIs, making recovery prediction challenging. Families often decide on life-sustaining treatment within 72 hours, relying on clinicians' subjective prognoses. This decision varies widely and affects research outcomes. A study in the Journal of Neurotrauma using TRACK-TBI data found notable survival and partial independence rates at six months, highlighting the need for better prognostic tools and decision-making in TBI care. #TraumaticBrainInjury #PatientAdvocacy #CriticalCare