Things That Make My Life With FND A Little Bit Easier
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- เผยแพร่เมื่อ 5 ก.พ. 2025
- Hey fam! Back with another video on things that make my life a bit easier. I really do apologize for my mumbling I wasnt feeling good and I was very very tired. Just trying to post no matter what! Much love to you all.
My girlfriend, who was recently diagnosed with FND, uses a pair of Bose over-the-ear headphones. She's had sound sensitivity issues for years that she's always assumed were related to PTSD but may actually be due to the FND. There are two types of noise canceling, Active Noise Cancellation (ANC) and Passive Noise Cancellation (PNC). Passive Noise Cancellation creates a seal around your ear to block outside noise. Active Noise Cancelation uses microphones to monitor background noise and then creates an inverse sound wave to cancel it out. Some headphones do one or the other, and some do both.
If she's really struggling with noise sensitivity, she will use earplugs and the Bose ANC headphones together.
Wow thanks for all the info!
Than you for this. I was diagnosed with fnd 3 months ago. Didn't know noise was an issue. Thought I was crazy. Now I can explain to people yet another one of my symptoms and why.
17:35 Thank you for your videos, they really add to our understanding of our Granddaughter’s condition. She lost the use of her legs just after her 22nd birthday last August and has not regained it since. She was diagnosed as having FND after a month in hospital .She uses the FND info cards and also more detailed sheets for ambulance and hospital staff.
Awe thank you for watching, Im so sorry to hear about your granddaughter.. I hope you find ease
I was wondering what the FND cards are that you spoke about? I have FDN and I am wondering if these might be helpful for me. Thank you!
@kalvinkybird9736 do you mind if I ask what information sheets for Ambulance etc do you mean and is there somewhere I can get it please? 🙏🏻. I am in Australia 🇦🇺 and it is still so not recognised by so many even doctors, I was diagnosed with cancer just before Christmas and the stress has exacerbated my FND symptoms and when I was in having my chemo 2 weeks ago I could feel a seizure coming on and the nurse asked me why I was having trouble speaking etc, ( I didn’t have my FND card on me), I said I was having an FND seizure and she had no idea what I was talking about, she had to go and get my oncologist.
I am sending healing thoughts and prayers to your granddaughter ❤❤
Cassey your amazing and I relate to what your saying as I have had FND for 5 years and get seizures too and no one knows how to handle it, I usually always with someone now in case I have a seizure , be strong girl 😊
I have non epaletic seizures as well and FND
Eating is also a problem I have. I dont have the energy to want to chew, use the microwave, take the food out of the fridge, etc, but then i get weaker as the day goes on. I can make coffee in the morning, so maybe if your parents bring a smoothie or smooth hot soup it's easier to drink. Or if I can just get someone to put the food in front of me and manage to get a piece in my mouth I can tell how hungry I actually am and continue eating. Yogurt and bananas are easier and give me a bit of energy.
I have this trouble also, but the choking/something stuck in my throat feeling puts me off eating.
I thought I was going crazy when this started happening but when I had my appointment with my neurologist she explained it was one of the symptoms and I am supposed to see a speech therapist as they can teach someone with FND how to swallow.
It is nice to see someone else near my age with FND. Thank you for your videos.
You are so welcome!
Thank you for the tips, they were helpful.
I've also just been trying to make myself more comfortable day to day and letting myself wear more comfortable clothes.
I have a weighted blanket and stuffed animal I try to keep available and they help a lot.
I like the idea of getting comfortable clothes to wear that you can still nap in, I have a problem of staying in my pajamas to long too because I sleep a lot. 😆
I think the headphones your thinking of are called ear defenders or ear muffs, they sell them on Amazon, most don't have speakers they just block noise.
Noise is a big stress trigger for me too.
Hey, Thanks for watching and sharing :) I will check those headphones out!!
Thank you for posting these videos! I have FND and have never met someone else with this disorder. Seeing your videos makes me realize I'm not the only one.
Thank you for watching!
I have a rollator that can be used as a wheelchair (not one I can wheel myself though unfortunately) and it helps so much. I can stop and just lean on it if I start fading while I’m walking, and I can sit down whenever I want. If I’m paralyzed or spasming or just too weak I can get someone to push me, and if half of my body is unresponsive I can often still hobble along well enough that no one panics or draws attention to me. It’s also way easier to get around with and use on transit than a wheelchair, especially since mine folds up.
Thank you for sharing that Aria! Sounds like an awesome device
I have only just found your channel and I wanted to say thank you so much for sharing. I have just subscribed so I know when you post another video, hello 👋🏻 and thanks from Australia 🇦🇺 ❤
Hello Australia 🥰 thanks for tuning in!
Lounge suits are good cosy but versatile
Thank u for sharing your story s sometimes it’s hard can feel very isolated I’m trying my best to socialise but sencery over load I get lost in conversations we can do so much be kind to ourselves I say also my mantra is live in the moment it’s much easier way to live I find because living with FND is challenging it’s the unpredictable nature of it the way it just sits in there and then it strikes again it’s affected my confidence I hardly go out because I don’t want people to see it for three years iv hardly seen much this year I am trying to go out more I get so tired easily before I had Nead seizures they are bad but u sort of understand them u knew after seizure s they would stop and get a bit rest they nearly broke me but I learned triggers and different coping skills then in 20.21 I got very bad side effects from my second vaccine and so much or things happened and year later got diagnosed with FND it s hard to understand for sure kindness suzy
Hi Casey.
This card is amazing 🤩 and very use full for us.
Two months ago, I had a vagal chock just before my Frozen food seller. She’s a young woman and she was quite afraid . I suddenly fell on the ground before I could say anything. Fortunately, she knew that I was suffering from long Covid.
I Hope you understand my medical vocabulary I didn’t learn 30 years ago when I was a student.
😉
Take care of you Casey.
Friendly.
Chris.
bose quiet comfort headphones are the ones that are really common for autistic people. they are normal headphones with active noise cancelation and they are a lifesaver. i literally can not leave the house without them
@@samthescotsman thanks for the share 🫶
Thanks for sharing! Where did you get your medical card? I always get overwhelmed at Walmart. I've recently done an online course that has taught me how to calm my nervous system. I take a deep breath, followed by crossing my arms and stroking from my shoulders down to my elbows when I feel an attack coming on. That is one method but there are more to self regulate. I am curious as to why you are on so many medications. My neurologist told me medication does not help FND. He took me off of the Lyrica my family doctor put me on.
Hi Brenda thanks for writing and sharing! I got my card on etsy! just type in fnd medical card :) and thats a good idea! I should look into more self regulating practices. Thats a good question! Honestly dont know its tough.. I dont have a neurologist that looks after me I see a psychiatrist and im not 100% sure if they know what they are doing. I saw a visiting neurologist and he thought i was on the wrong meds but because he is not local he could not take me off my other ones so he just added one to the regimen.. Im not entirely sure if anyone knows how to treat it. I think they are trying to treat my anxiety and then by that they think they will be treating the fnd but I dont know that to be true.. its so tough
Yes my neurologist did the same, I was taken off Lyrica also. So many different opinions etc with doctors about FND. 😢
Thanks for sharing. 🙏
Thanks for sharing 🙏
My pleasure
Thank you for videos. I live alone. No support. Any advice? Just now talking to attorney about disability. Can't pay bill's. Don't know how am going to do this alone. Thans
Hi Carla. Thanks for watching. I would say look into community resources? I know in my town we have certain programs run by the government that help with things like groceries and day to day living. Disability is very helpful for sure. Im sorry to hear about your situation. Keep fighting!
Yes I feel the same
the headphones that autistics use are either ear defenders or active noise cancelling headphones. ear defenders look like headphones but are not electronic, they can't play music etc but block out noise. they are commonly used by construction workers but a good brand that make them look more aesthetic is alpine! they are marketed towards children but they fit my head as an adult. a very good (but also expensive) pair of noise cancelling headphones which are popular in the autism community are sony wh1000xm3 or sony wh1000xm4 - i highly recommend them! you can choose to use the noise cancelling when listening to music or other audio or have the option to use noise cancelling without any audio playing. there are also cool features like tap to speak and voice recognition which you can turn on/off
Awesome thank you so much for all the info! So helpful.
Think you for that 👍 9:11
Me to
Does anyone get angry b4 or after a dissociation. Top tip avoid screens getting over tired and pushing to do a list of things. Write one thing to do that day.
I definitely get angry after
Do u take medicine for functional neurological disorder ?
I'd love to connect. I have a little channel and I interview others with FND and how they manage it. ❤❤
There like defender’s
Follow me Cassey... I will do my bag "I call it Harry Potter Bag" that I carry.