Cannabis and Facio Scapulo Humeral Muscular Dystrophy, Minnesota. I rebuilt my entire body from severe debilitation and chronic intractable pain once associated with FSHD.
@ianmarks86142 күн бұрын
Can anyone set up a walk and roll fundraiser ? am I live in northern Ireland and there very little support here in northern Ireland I was diagnosed 17years ago in my early 20s and am still to meet or speak to anyone with my condition would love to compare my experiences with someone who understands . Even know 95% of people have a parent with fshd .I am not in that group I am I'm the 5% of people who dont I think my mother is a carrier . I have not seen a doctor or physical therapist in years even know I ask .I have had shoulder blade stabilisation operation and was not even offered physio even know I asked .only to find out the fshd society recommed it . I am honestly jealous of people in the USA I had to research about ankle braces after developing foot drop and I have limited options has I dont work and can not afford expensive one .I use one with elastic strap connected to shoes . But would love 1 with shin support as there is a lot of muscle wastage in my shin any suggestions on websites where I could buy 1 at affordable prize
@zinullahkhan-tb1ur5 күн бұрын
I am fshd patient plz help me
@bobski11518 күн бұрын
Thank you for the information. There were a couple of foods I never ate and I am giving them all a try now.
so after thousands of repetitions walking over a year or two could you wean off because stronger? i had stroke w a little foot drop got a little better but fell broke hip now weak starting over hyperextending i hate afo and would eventually like no assistive device
@gregorypetka879922 күн бұрын
Love you Larisa, so awesome inside and out, always follow you , Your super awesome
@ginaesrar994523 күн бұрын
Cannabis and Facio Scapulo Humeral Muscular Dystrophy, Minnesota. I have been able to rebuild my entire body with cannabis, combined with a multi-disciplinary approach. Cannabis is safer and more effective than Losmapimod, AOC1020, and anything else in clinical trial. I also developed my own style of art, and have gone back to work out of complete disability and dragged out divorce process...
@neerajsinghbjpnetalucknow279323 күн бұрын
Very Important Information,🙏🙏🙏
@ginaesrar994524 күн бұрын
I rebuilt my entire body from everthing FSHD ever did to it with cannabis and a multi-disciplinary approach. Cannabis and Facio Scapulo Humeral Muscular Dystrophy, Minnesota.
@iurydemelloaraujo2024Ай бұрын
Highlights foi os resultados que a Avidity apresentou, finalmente, parece que falta pouco para vida voltar. Precisamos de uma aprovação antecipada, os resultados são excelentes e nós não temos nada. 🙏🙏
@mariyamma-it4tmАй бұрын
Fshd
@kaptankaptan5653Ай бұрын
Thanks for these episodes that help us to understand how to live with the disease and different lifestyles.
@jorgeuriellopezcaballero2223Ай бұрын
Sorry for my grammar and spelling mistakes. I didn’t turn on my english board.
@jorgeuriellopezcaballero2223Ай бұрын
Hey guys! I am Jorge from Mexico and I am your fan 🎉 I started to follow you and si really amazing what you are doing: thank you for MAKE VISIBLE GREAT PERSONS THAT ARE LIVING WITH FSHD. I was diagnosed in my earlies 15. Since that time till now I can handle very well my fshd… but when I was 42 weackless appeaers with strengh. I was in Rome and when I haved to run take the bus I fall down. Now I am arriving to my 50’s and I achieved a lot of problems and dilemas that my family don’t understand even my mom and my sister have fshd. Also I am fighting to get out form drugs; At the very first time the drugs give me strenght and the power to move quickly even to go up and down stairs by myself. However all the perplejo se my drug adiction and give me a lot of possible solutions but when I ask for help for my fshd they only say that doesn’t really maters and that’s what REALLY MATERS. Well thank you for your increíble programa that makes visible this very strange desease and help us to make bealive to the others that even the most easy things are dificultades for us, ex. Walk with out fall everywhere in every time and they don’t tel me: keep on with your drugs up you dead… Have a nice Sunday guys.
@gamaltaher9714Ай бұрын
Thanks
@ginaesrar9945Ай бұрын
I've been able to rebuild my body, transition out of Ankle Foot Orthotic braces, and fully recover from bilateral Scapulo Thoracic Fusions with cannabis, combined with a multi disciplinary approach. Cannabis and Facio Scapulo Humeral Muscular Dystrophy, Minnesota.
@alfiejackalfiejack5040Ай бұрын
Can the vagus and phrenic nerves be affected by fshd?
@phillipbutch7724Ай бұрын
i am 69 and I got diagnosed in 2014. Now I am told to keep the heart and lungs healthy so I ride a stationary bike to get my blood pumping. I wonder how many individuals loved sports before the disease really slowed them down. I loved basketball as a kid. Keep fighting!!
@wjcorrinne4052Ай бұрын
I’ve had physical therapy numerous times before and after my diagnosis in May of 2017. About 2 years ago I heard that one of the facilities I’ve been to in the past was hiring a physical therapist that only worked with people with neurological conditions. It made a world of difference in that in the past I reached a point where my body would rebel against the therapy and be on a plateau. We couldn’t get past it and they’d tell me that there wasn’t much they could do as we’d gone as far as we could go. So they’d release me from treatments, Medicare has standards of progress, which played into it. With my current therapist we’ve worked around any plateau that we’ve encountered and that’s made all the difference. Even after two hip replacements since May 2023 I continue to make progress. Not as fast as I want but she points out to me where I began and where I am now and how well I’m doing. I let her bring any therapist in training to join in touch, ask questions, nothings off the table. I figure I’m helping others by being available.
@wjcorrinne4052Ай бұрын
Tim, Is FSHD really the most common type of MD? I’ve heard that it’s the second &/or third most common form? Some of the info has been 1 in 6-8K have it in the Netherlands and 1 in 10/11K here in the U.S. I usually miss your show because I’m generally in physical therapy for the better part of your program. I have FSHD and almost 2 years ago I began P/T with a therapist that only works with individuals with neurological issues. WHEN I first learned about her I had my neurologist write a script for working with this specific therapist. Since then I’ve had two hip replacements, one to replace a joint that was partially slipping out. In between my start to now it’s been either in relation to my hip issues &/or FSHD or both in conjunction with each other. This has helped me gradually work through those plateaus where in the past my body would rebel and therapist would tell me that we aren’t making progress and would stop the therapy. Medicare regulations were behind those decisions to stop. One of my therapy days was on a Wed for June so I’ve been able to watch. Otherwise I usually catch you on KZbin.
@ginaesrar9945Ай бұрын
Clinical trials are poison. Cannabis and FSHD....
@brainticАй бұрын
I've been waiting for 25 years for this. Hope this one makes it to market.
@jorgeuriellopezcaballero2223Ай бұрын
I´ve been waiting for more than 35 years!
@megaman7551Ай бұрын
Exciting news! Can't wait to hear the results of the 4 mg/kg part b study. Also they didn't mention anything about the mri results ( guess it's only been 4month so probably wouldn't show much)
@jorgeuriellopezcaballero2223Ай бұрын
I am very happy to be here! Grettings from México City
@jorgeuriellopezcaballero2223Ай бұрын
Great News! Thanks for sharing… Doctor´s explanation very understandable and clear. All of you are making And amazing expanation of fhsd desease… I will share with those who tell me: the problem is in your mind so hurra up and move dońt be lazzy
@taylorvandiver8554Ай бұрын
Great stuff as usual Tim!
@wwonwin7Ай бұрын
Hello everyone, I am Wang Wen and I am very happy to meet you all through this way. I hope everyone will pay attention to me and FSHD patients in China. I look forward to communicating with you all
@lindaprimm6672 ай бұрын
I so appreciate your attitude and encouragement. I can certainly start everyday with the intent of working out.
@georgewhitson50052 ай бұрын
Hi . I follow this channel in the hope i might learn something about myself. I am BRITISH 68 years old I have had a very physical life ie I was a gymnast at school I left at 15 i then joined the military at 16 I was a physical trainer for most of my 22 years as well as teaching other subjects. when I left in 1993. I was diagnosed in 1995 FSH Dystrophy I had a gymnastics accident in my teens a trapped nerve and neglect left me with losing 60% mass in my right shoulder 10 years ago I started to lose nearly 80% of my quads. my doctor informed me it happens? The good news I go to my local pool and do five days a week exercise for the past ten years. to Which my medical professionals are pleased. THANK you for listening. George
@ianmarks86142 ай бұрын
I am a massive fan of the fshd society . Because sometimes I have felt very alone as I have fshd type 2 but in 20 years I've never got the chance meet others with my condition. I don't have any family members who have it bar a 2nd cousin in Australia who I have never met or spoke to . But is very reassuring seeing other people on your channel with similar problems to myself. Truthly have learned more from this channel than any NHS doctor I have a neurologist but is really hard to get an appointment i have seen him once in 5 years . I live in northern Ireland and am jealous of people who live in north American because you seem to have a lot more treatment options. All they offer is powerful pain killer but I do worry about the damage they may be doing to my liver
@gilbertmosqueda28872 ай бұрын
Thank you for providing the community with another great interview
@elinorarras47253 ай бұрын
Love this fshd straight talk!
@reneecampsall18983 ай бұрын
🙏🙏🙏
@jimwohlfeil-watson76563 ай бұрын
Cure pbbt🙄yeah right.
@alfiejackalfiejack50403 ай бұрын
how common is a wasted diaphragm in patients with fshd?
@alfiejackalfiejack50403 ай бұрын
Is a wasted diaphragm common in fshd sufferers?
@rickysneaks74243 ай бұрын
I've had LGMD since high-school. I'm 41 now, and still walking. I get to participate in about 10% of life. I think what hurts the most are people. They can't comprehend the struggle or the pain it causes just to exist. It didn't take me long to realize that it wasn't me that needed to accept my condition, it was the people around me. I chose myself to never quit, while others around me urged me to stop. For anyone struggling with any form of disease, don't look to others to find hope. Hope exists only in yourself. People will let you down and not think twice. If you want something bad enough, you'll find a way to get it. Friends, acquaintances, and even family will tell you to stop. But, you have to fight. Fight for every inch and every muscle. There will be pain. There will be heartache. But, at the end of the day, there will be you. Then you can ask yourself, was it worth it? You will be loved. I can promise you that.
@fatimakulsoom18204 ай бұрын
Can I ask question from Dr please?
@FSHDSociety4 ай бұрын
If you post your question, we can definitely pass it along. Thanks!
@fatimakulsoom18204 ай бұрын
@@FSHDSociety Sure please I would be grateful for you! Question _ Can hyperlordosis be cured or reverse in fshd ? Or how can we maintain through exercise. In this video I couldn't find proper exercise for hyperlordosis in fshd. Patient has hyperlordosis n because of that it's becoming difficult for doing daily activities. Pls ask her to mention the name of exercise through her experience of treating fshd patients. I will Google the name. Many of them I know but still wants advice of experienced doctor.
@FSHDSociety4 ай бұрын
@@fatimakulsoom1820 Hello, this would be a great question to ask one of our FSHD Navigator volunteers. You can find more information and contact our Navigators directly: www.fshdsociety.org/for-patients-families/fshd-navigator/
@hashassassin8304 ай бұрын
The skepticism over testosterone is unwarranted. I think it needs to be looked at more. I've certainly had results. There might be an overlooked interaction between it and fat infiltration. Also, women seem to be affected the most severely out of all patients, perhaps testosterone is a factor here as well?
@RanaeBeeker4 ай бұрын
Excellent meeting and information!!! Thanks to all, for your great work!
@ggram05514 ай бұрын
Any current or potential (near) future studies on combining Ace 0311 and Ace 083 simultaneously ?
@gilbertmosqueda28874 ай бұрын
Great interview. It’s always interesting to hear others with fshd.
@primavera5584 ай бұрын
Thank you so much this is very appreciated 😊
@AvantikaShrivastava5 ай бұрын
Hello from India! Loved this episode particularly because I work out almost every day and sometimes managing the disease gets overwhelming
@wjcorrinne40525 ай бұрын
It seems as if your voice track while aligns with your mouth, it is moving very fast. Code to twice as quickly as your normal rate of speaking?
@reginaspain40305 ай бұрын
Great awareness, thank you!
@barbslater19225 ай бұрын
I got diagnosed in my teens. It has slowly taking my mobility. Now in motorized and only walk with a walker in my home. Hard to keep a positive attitude!
@zebinmarais46975 ай бұрын
‘25 one year to go … is this still a realistic target? Or just a ploy to get hold of investment funds!
@sophiejohnston35015 ай бұрын
🙃 Promo`SM
@ingridortiz73475 ай бұрын
Hola, hace 30 años que recibí el diagnóstico, tengo 47, ya hace 2 años se me ha presentado más fuerte, uso bastón para caminar, mis piernas son cada vez más débiles y casi todos los días con dolor. Gracias a todos los que están trabajando en encontrar un tratamiento o la cura, espero estar para verlo y ser parate de ese gran descubrimiento 🙏. Saludos! 🌻