FND NOW YOU SEE IT NOW YOU DON'T
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- Опубликовано: 12 мар 2017
- Hi! I'm Larissa and this is my new channel to chronicle the daily battle that is chronic, disability. This is an outlet to be able to share with friends and family the often invisible and isolating condition I have, FND/FMD (amongst other things) It's also a place to encourage others in the struggle of hardship!
You can also follow us on
Twitter: / thelarryandy
FND HOPE WEBSITE.
www.fndhope.org
FND ACTION WEBSITE.
www.fndaction.org.uk
A great resource.
www.neurosymptoms.org
Oh my goodness! It's like we are the same person! Today makes 6 weeks since this all started for me. I've seen 11 Drs and no answers. I know its FND. Thank you for your videos.
You are a brave brave woman, keep being true to who you want to be! ❤
I also find when a person stresses me or inget mad I get real fatigued , left side feels weak
Thanks for sharing. I have FND and I get the spasms and fatigue. It’s hard to manage but finding others who suffer helps. I’m so glad you can stay positive. I found thinking of it as an endurance race helpful. 👍.
Thank you for your post. I have had fmd for five years now. I am sorry for what you have, but its nice to know other people with the same things. I know exactly what you are talking about. I love the idea of changing your minds path by doing something different. Keep on going, Chris
So glad I found this video. It is just like you are taking straight to me and so much of what you say relates to me. I think this is the closest I have come to someone just like me within the FND community. Yes I get some different symptoms but honestly I get what you were going through .
Thanks Vicky ❤️
You are an inspiration! do you know that? your positive outlook and how you've learnt so much about FND and how to counteract and or re train your brain really brought what I'd read on behalf of my daughter to life. Thank You.
I was diagnosed with fnd a few days ago, and this video is so helpful…everyone that I know doesn’t really understand how it feels since it’s hard to explain for me…but I could relate to everything you said and this made me feel better🤍
Thank you for sharing.
Thanks so much for posting this Behind The Scenes video! I'm glad you didn't edit out things cause it helps to know and see what others experience. So I love the authenticity of the "director's cut". We love you! I'm working my way through all your videos as part of today's allotted FND research time (a tip I got from your other video). The tip about stuttering and word finding really helped me. I'll try it next time to not focus on the word I was trying to say but go for a different one.
+Lentilboots Wow. I'm so humbled by your comments. Just wow. Thank you. Bless you. What's your name? Hehe
I'm Lenny in the Facebook group :)
Hi I have chronic fatigue and functional dystonia , non epileptic seizures , memory loss , difficulty walking , sleep apnoea , central apnoea , I have difficulty with facial weakness where my mouth droops one side looking like a stroke . which
Lately it started to weaken my eyelids affects my eyelids to sleep 💤 for such a long time after that . Everyday I struggle with an onslaught of these symptoms and I really want to record myself . Sometimes I can’t talk and other times my speech isnt recognised . I have also been diagnosed with a tic which aggravates me and before a seizure I have recognised it’s like my mind empty’s of words and I completely forget what Im talking about . For me this generally indicates a seizure . I wonder does anyone struggle with these symptoms?
Wow so much good stuff here... and you know... I get those involuntary movements!!! I feel like I'm being jerked around so weirdly... and it feels like theres ants underneath my skin!!! Thank you so much for your videos! Gosh I'm so glad I'm not alone
Do u use Facebook? If so, add me!
There are FND groups on FB, great support. 🥰
Omg the ants yes.
I miss driving I know that :( but I'm hoping I can get back to it one day. Yep, right there with you. When I'm spasming I look like a drug addict after a fix 🤔 to top it off ( this spell has lasted 5 months so far) I need a bath but don't have the energy, my hair needs washing and I'm in my pjs and had to be taken to hospital ...looking like a tramp! Totally embarrassing. I hope I get some treatment soon but everything you've said is me haha. Big hugs xxx
Hugs to you, darling!
Thank you Larissa, for your kindness, in sharing your video on FND today 👍😘A great help! Tony (FND guy in Ireland)
Hi Larissa. Thank you so much for sharing your story. I have FND and have most of the symptoms you experience. It sure aint easy but we keep going. Thanks!!!
+Clare Manning Thank you so much Clare for reaching out. It's so great to know we are not alone!
The spasms are so painful. I had a big seizure that lasted 45 minutes today. Was rushed to major trauma unit and after blood tests, the doc I saw reckons it could be FND. I have the nose scrunching too!
I hate how it’s now you see it now you don’t. That is one reason that I’ve actually decided to start a RUclips channel. To show others how much I can vary from being not able to talk to seeming okay. Thank you for also being one to spread awareness! I have screaming, laughing, sound effect like noises, stutter, can’t speak sometimes. Get frozen sometimes. I do limbo oddly, lol. Anyways, I follow you. I hope all is well overall
Thanks Brian. Yes it's quite a shock when people who haven't seen symptoms, then see them . Good luck on your channel my friend. Thanks for your support!
larissa, knowing you a little before, you are so incredibly strong. Your strength will stay strong because of the Lord. keep doing all you do. These videos are inspiring not only to people that have your condition but for others that just need the courage to keep going in life. Continue to stick with God. you are perfect the way you are, and are beautiful in all your ways.
Arianna Hawk Thanks! love you!
hello larissa thank you, i have finally got a diagnosise. you videos really help me make sense and not feel so alone, but tips about what can help are useful, my mother tryed to have me sectio into a mental institution. hopefully fter my ot's and physios spoke to her i hope it hoped, defribulators in hospitals trigger me off , thank you you really helping me keep going chick :-)
I've noticed that light doesn't trigger my symptoms but I'm super sensitive to it. But i do have to watch the themes and visuals of movies and music because it will trigger symptoms. Mindfulness is key for a lot of things.
T Bonner Mindfulness is key! You are correct! 💋
Please define mindfulness. I've had movement problems since I was about 12 starting with not being able to button a shirt or pour juice & also in gait - no balance from cane to forearm crutches and a few years ago to a wheelchair because I kept falling & breaking my glasses. In '92 I was diagnosed at Mayo Clinic with ataxia for the walking - no assistance needed then, and the hand tremors that were now making it hard to eat. Diagnosed myoclonus for the jerks in my arms. So started in about '82. Now I'm almost 50 and 3 months ago neurologist told me it was FMD. So confusing. Has anyone else had such a long period of time between symptoms & diagnosis? Once again, what is mindfulness? If it's useful I need to know! I have both epileptic & non epileptic seizures so not even sure what to do about meds.
@@kristenwhite2701 I believe mindfulness in this sort of situation is to divert your mind away from your symptoms. Its very easy to have lots of negative thoughts when you have a condition like FND and I suppose mindfulness is not allowing the condition to own you but for you to own/be in control of this condition.
I've had FND for eight years Kristen but was only diagnosed recently. I used to get a lot of aura migraines, then I got meningitis which I believe triggered this.
I had every test known to man. I had all those tests repeated on numerous occasions (My FND relapses back and forth) with nothing to show. When I was first diagnosed I thought, what nonsense, this is just another way of suggesting its not real. Then I spoke to a neurologist who said, "If you were having a migraine and I suggested you could snap out of it, you would think I'm crazy. We can only diagnose migraine through symptoms and we know its real and we know its a software issue. NFD is like a migraine, the symptoms are just very different.
Im now happy to have a diagnosis. For years I believed I had some serious illness that they were missing... thank goodness I don't!
I don't have the severe jerking. I do get eyes being sore, stuttering over words, confusion when thinking and multitasking at times is difficult
Larissa I had this happen severely in October. It's terrible.It feels like a knife going through you. My sister asked my other sister if I was acting.:-/ I am working with a neuro PT and manual therapist too. I have dystautonomia. I got a cold this week and it's setting off my sijs. Crap.
Thankyou for you video I have FND
I've had FND for 2 years around about and I thought I got better but have had a bad day today again. Thank you for this video, you gave me the idea to try and mimic my movement, also I like your idea to try and find another word when struggling with a word. So thank you for this video 😘
December is 4 years for me. I can't believe it!
@@TheLarryAndy it is so hard on the body, you must be so fed up with it
Hi I also have fnd ,thanks for the videos.x
+Tracy Ann f.n.d Smedley Thanks for watching! Keep up the fight! 💋
Love your intimate description. I;m south of you in San Diego
beverly parker Thank you so much! hi down there in sunny San Diego!
you are so fun and refresshing..the sweet honesty is going to encourage so many...
I had FND for 11 years now. I know how you feel
Hahaha!!! Thesaurus! Truth!!! 😜
Wow! I love your video, Larissa. Thank you for sharing your story of encouragement, strength, and hope in the midst of hardship. I too am dealing with a chronic disability. So I understand the warrior within to endure such a plight and continue to move forward with a compassionate heart for others who are also suffering. I truly hope the best for you on your life journey. :) Knowledge empowers insight, understanding, compassion, and hope. www.incmedia.org
Thank you so much ❤️
Was your FND caused by any trauma Larissa and do you believe in that theory???Also does Fibromyalgia and FND both exist with each other or do you think it's one or the other.....Great video too thanks
Jennifer Davies Hi Jennifer. We have two videos about FND VS. CD (those different theories)
Good questions... I'm not entirely certain, though I'm fairly confident it's linked to my neck and severe pain unchecked for so long. I think fibro fits under the same umbrella as all are sending and receiving system issues . 💋
Is there times where you can go on for days or weeks where your doing ( as I like to call it ) the jerking? I have a very similar thing going on. For me I jerk full body all the time and that makes everyday life very difficult. Do you have any tips on how to hold it back? Or control it better?
+Fang Light hi there. First I'm no doctor and these are just things that have helped me. Two things came to mind. Being aware of letting muscle tension go and not stiffening them up helped some in the reduction of the severity of the movements. And also mimicking over the movements with intentional movements can help break the cycle. Like if your arms fly up. Then you willingly tell your brain to do those movements and redo them with you telling your brain. Does that make sense? It helps to break the dysregulation and show your brain you are showing it how to follow properly. This I learned from the neurosymptoms . Org
Xoxo
The Life Trekkers thank you! I kind of do something like this. I can dance sometimes and all of my jerking stops even if all I'm using is my feet. This isn't always the case because it can become very powerful and it is full body for me. And thank you again for replying to me. Lately it's really been hitting me emotionally and hearing from you helps a lot.
Fang Light I've been going through a lot in life lately and it's definitely important for us all to stick together and encourage one another
The Life Trekkers I very much so agree. But it's hard to talk to anyone about it because it's so rare and no one I know personally had it.
+Fang Light Do you use Facebook? I left...but there are amazing support groups there with many amazing FND Warriors
Did they check your daily cortisol levels?
I have no idea.
newbe here
Hi! Xo