TreatingCBS
@TreatingCBS
Don Sladek has terminal Corticobasal Syndrome(CBS), & took Biogen's drug BIIB092 in a clinical trial. It was efficacious. After 10 months, he’s resumed BIIB092.
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Michael explains the agony of caregiving and loving eloquent. Every neurologist should follow him.
This Might Be Our Last Christmas. by Michael Whelan This is the first time we didn’t have a Christmas tree. Ever! No lights to untangle. No ornaments waiting in their boxes. Rebecca not having to wonder if I'd fall off the roof once again. Through the years I've become the Greg…
I wish our Rx list was as entertaining. Zoloft-anxiety Keppra-rigidity, tremors Gabapentin-pain Clonazepam-anxiety, sleep, tremors Carbidopa-Levodopa 25-250-rigidity, stiffness. On max dose Entacapone-added with Carbidopa to boost effect
THE PHARMACEUTICAL SAVANT. by Michael Whelan (Yes, A Beautiful Mind) but with 26 pills and no Nobel committee in sight Rebecca doesn’t take medication. She takes 26 pills a day. Twenty. Six. That’s not a prescription — that’s Coachella for pharmaceuticals. And who’s in…
My husband, a vet, participated in the #TauBasket trial with #Biogen’s #Gosuranemab. The drug helped with #Corticobasal and another man with #CTE. UCSF did not publish, and the drug is no longer made. youtu.be/VIrd9idWX2M and website treatingcbs.com…
On #DayOfTheDeployed, DAV honors the brave men and women currently serving far from home. Their courage, dedication and sacrifice remind us that freedom comes at great sacrifice for some. To all who are deployed, and to those waiting for their safe return, we salute you.
Every day - but especially on this #DayOfTheDeployed - please keep in mind the thousands and thousands of U.S. #military personnel serving throughout the world - and far from home. You & your families are in our thoughts & have our deepest gratitude.
And while this can be true, #Biogen’s #Gosuranemab worked like jet fuel for my husband youtu.be/VIrd9idWX2M and website treatingcbs.com
A “rehabilitative approach” to functional neurological disorder, so that, as an FND patient, “I can be still be me as much as possible”. A trailblazing lecture by Mark Edwards at the #MDS Congress in Honolulu. 🙏🏻
My husband has Corticobasal Syndrome & will donate. His brother had FTLD. He committed suicide with a gunshot to the chest. Unfortunately the coroner had started the autopsy process by the time we connected to Robin and were unable to donate. Please contact before death.
Thinking about the future of brain health means thinking about donating your brain to science. Every donation helps researchers unlock answers that can change lives for generations to come. If you’re considering this important gift, reach out to Robin Riddle and the Brain Support…
SAD DAY FOR ME! Earlier today I received a call that one of my few best friends passed away. It caught me so off guard. It broke my heart. He was two years younger, healthy and a man who was always there for Rebecca and me. He was my role model. You see, I have thousands of…
Ironically, tau protein is mentioned with FTLD. Dr. Miller is aware of my husband’s benefit. Unfortunately, UCSF did not publish, and the drug is no longer made. YouTube video youtu.be/VIrd9idWX2M Website treatingcbs.com treatingcbs.com/evidence-medic… Dare to investigate
Tonight on ABC at 8 PM ET - my full sit down with Emma Heming Willis. She opened up to me for the first time about Bruce’s heartbreaking frontotemporal dementia diagnosis and on the roadmap is she hoping to give other caregivers. I hope you’ll join us.
No autotune, no fancy lights, no tricks—just pure talent. So beautiful! 🎶💖 Stand By Me, (Cuenta Conmigo) | The Buzztones | ( Versión a capela de Ben E King). 🎶
CAREGIVING!! A powerful & scary word. @mikejwhelan eloquently shares his raw emotions. I would encourage all to follow him. He needs financial help and has written a book that can be shared with adults and kids, where each reader will absorb it through their own prism.
Don was diagnosed with Corticobasal Syndrome in 2014 and his memories started to disappear. In 2019, he was on #Biogen’s #Gosuranemab and his memories returned.
MORE FROM MY INTERVIEWS WITH REBECCA When the Wind Changes Direction. I know I’m losing her. Not in a dramatic rush, but in whispers—in forgotten names and misbuttoned coats, in the way time now folds in on itself, leaving both of us stranded between what was and what’s…
“Why Am I Smarter Than Her Doctors? When the Love of Your Life Is Fading and Medicine Has No Answers." by Michael J. Whelan I don’t have an M.D. or a Ph.D. after my name. But I was pre-med—in the top 10% of my class—in both college and graduate school... 45 years ago. I read…
And sadly very few care other than the individual patient…definitely not the clinical trials, the colleges, MDs, scientists, pharma, nor those that donate millions. YouTube youtu.be/VIrd9idWX2M website treatingcbs.com Evidence treatingcbs.com/evidence-medic…
Go out and get that story. You will never get anywhere sitting on your dead tail. Not just any story not just any picture but The clinical story and The clinical picture- this is the business of neurology
And then is my husband with the neurodegenerative disease #Corticobasal Syndrome who participated in a clinical trial with #Biogen’s #Gosuranemab and no one will acknowledge its benefit. treatingcbs.com/evidence-medic… youtu.be/VIrd9idWX2M treatingcbs.com
Just a reminder, when you are talking about clinical trials remember that 90% of people living with ALS do not qualify.
I’m not a scientist nor an MD, just the spouse of a veteran with a 4-r tauopathy, #CBS #Corticobasal Syndrome. #Biogen’s #Gosuranemab worked for him. treatingcbs.com/evidence-medic… Video youtu.be/VIrd9idWX2M Website treatingcbs.com
Former NIA neuroscience head Eliezer Masliah faces allegations of data falsification in more than 120 publications involving more than 500 co-authors. An NIH investigation has substantiated two instances so far. The research community awaits more fallout. ow.ly/UBCN50TOKyi
There are other drugs like #Biogen’s #Gosuranemab that also help with quality of life for #neurodegenerative diseases like #CorticobasalSyndrome and yet no one has the courage to look at the evidence treatingcbs.com/evidence-medic… while the Cartels in the marijuana trade ruin CA.
I have been reporting on cannabis since 2013 – making seven documentaries. And I’ll never forget the girl who made me see the true medical potential for this plant: Charlotte Figi. She had intractable seizures that could only be tamed by CBD oil. But, to further unlock this…
Some people believe that #pesticide use in the world has declined in the past years. I am afraid that quite the opposite is true. ourworldindata.org/pesticides
Brains DO NOT matter in today’s world. When there is a medication like #Biogen’s #Gosuranemab to help #veterans suffering from #AgentOrange #neurodegenerative diseases and the #VA won’t get involved. Do not be confused NO ONE cares! treatingcbs.com/evidence-medic…
#AANAM2024 with @nsanar talking to @drsanjaygupta . Glad journalism is being put front and center, neurologists have an important role communicating to the public why brains matter in current events
Ironic no one is interested in @Biogen’s #Gosuranemab. Don’s PSP score 39 (Oct 2020) by Jan 2021, his score dropped to 19. Unheard of in the world of neurodegeneration! And maintained between 13-15 for over three years!! youtu.be/VIrd9idWX2M and treatingcbs.com
Fascinating read to kick-start the new year! APOE2 risk and APOE4 protective in PSP?🧐 Whole-Genome Sequencing Analysis Reveals New Susceptibility Loci and Structural Variants Associated with Progressive Supranuclear Palsy medrxiv.org/content/10.110…
Complete waste of time. VA is not interested in tx. that works. @biogen’s #Gosuranemab has improved quality of life for #neurodegenterative #Corticobasal Syndrome and showed promise in pt with #TBI and no way to communicate to anyone in decision making.
As 2023 comes to an end, we want to thank the 1,000,000+ Veterans in VA’s #MillionVeteranProgram who are helping to change the future of health care. MVP is making important discoveries because of Veterans like you. Learn more at mvp.va.gov.
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