I’m so glad to hear someone else with FND talking about this. I’ve gone through the cycle of pt and relearning to walk twice in the past two years. And have had doctors tell me not to use mobility aids because it will harm me in the long term but mobility aids allow me to continue living my life, especially when we have no way to stop my symptoms from coming back.
I'm glad there's others out there who feel the same way. We do what we can to make our life as good as possible. I wish the doctors and specialists could understand that! I absolutely love my wheelchair and can't imagine life without it now!
@@YeyOrNeightwo years too late but i also know the struggles of mobility when it comes to FND I went from using a cane, to eventually needing a wheelchair full time to then moving to a motorised wheelchair full time while occasionally using a quad cane for what limited mobility I still have It sucks so I feel you
So glad to have helped! There really isn't enough information out there and doctors are often not very informed or have outdated opinions that really don't help us! Hopefully things will improve in time!
Quality of life is so important. Far too often clinicians focus on trying to fix you and make you normal, but it can be very damaging for your mental health. I think there is a lot of ableism in the medical community.
I've noticed that a lot. Since I got my wheelchair my quality of life shot up exponentially and in some ways I'd much rather continue to learn skills to improve that than struggle to control my symptoms in order to look "normal". At the end of the day, I think you just have to take what you can from the medical team and apply what works for you. It's your life at the end of the day! 💜
Quality of life is so important. Sharing the ways of being mobile is wonderful and so important. I love that you have used various mobility aids so that you can have quality of life. I have SCI, but I too wear myself out if I don't follow what my body needs. These fnd series are so educational. Thank you
I'm so glad you've enjoyed it!! It's amazing how much cross over there is between different disabilities! We're all in this together 💜 and we find a way through 😃
Hi thanks for your ideas on quality of life.. having been diagnosed with FND in 2013 and instantly discharged from neurology at my local hospital I've been doing it alone for 8 years I have a selection of walking sticks crutches and a folding self propelled wheelchair and attempt to get some quality of Life using what I need to at the time. I'm also full time carer for my wife who has severe multiple sclerosis so the challenges are what they are. keep looking for that quality of Life and don't let the FND spoil your spirit..
I'm sorry to hear you were discharged immediately and left to suffer alone for all that time, that's essentially how it was for me Toodlepip there's your diagnosis have a nice life
@vallarfaxgaming it wasn't much fun back when they did the discharge without support but because of their lack of support I have found better ways to cope with the fnd and now I understand so much more about it by learning the hard way...I'm in a good situation now it hasn't been an easy process to get here...hope you have found your good place to
I am in my 50s now, but first started having balance problems as a teenager. (In the mid-80s) Would fall going downhill or running trying to play soccer. Didn’t use anything to help until 30s used a cane for many years, then forearm crutches, but couldn’t break fall very well. Now been in wheelchair for a decade. I wasn’t diagnosed with FMD until 2018 and also have progressive myoclonic epilepsy which affects walking. Nobody has told me no mobility aids. Quality and not injury is more important
I so agree with you, ive been struggling walking for 3 years and had other things found but the spine dr couldn't see why i can't walk. I went to A&E once and got asked who told you to get the rotator and i replied no one i cant walk i keep telling the dr but they don't listen. Even a month before FND was diagnosed was saying to my dad going to need a wheelchair to get to the shops and behind and was totally fed up of doing something small and then being unable to walk the rest of the day. i have a son now and tried mother and baby group last week and couldn't walk for the rest of the day. i have to use a crutch as standard due to a knee problem and elhers/ hyper mobile joints. Use the smart crutch and just one to push the pram with my other hand and last week was the first time someone said wow that must be tough. The standard crutch nearly split my hands in two. Seeing the neuropsychiatrist next week after seeing the Neurologist a couple of weeks ago and ruled out other nerve problems and MS which is nice after the NHS just said your fat and sugar slightly high so its your problem. i was 30kg lighter when i started saying i couldn't walk.
Thank you for this.. honestly I respect your outlook so much because I would have given him a look to kill, listening to that about avoidance strategy & then some. Lol. I have those crutches called gutter crutches lol. They aren't as jazzy as those though.. I would love the yellow ones! I've been thinking about putting some colour on them to brighten them up a lil. How do you deal with professionals telling you "you aren't helping yourself"? I feel suicidal when I hear that. I know that sounds dramatic but that's honestly how I feel when for 8 years every day, every minute that is all I do. Having this illness is a full time job just managing your mental state with it too. I don't have a life except going on my scooter when I'm good enough to get out of bed or using my crutches to walk around my block. It's boring but every time I can do that on really good days I feel like I've climbed a mountain & on a natural high lol. Thank you for sharing. I'm really happy you have a good quality of life as best you can.. you give me hope.
Oh trust me I was not impressed with her comment! Yeah the smart crutches are great if you have hypermobility especially as you can alter the angles to help put less strain on all your joints. Go for it with the jazzing yours up sounds like a great plan 😃 !! It is definitely really challenging at times, especially when we have a condition that doctors don't fully understand yet. I found surrounding myself with others with different disabilities that lead amazing functional lives really helped me as I learnt a lot of coping strategies for when symptoms got worse. It's also super important to pace your energy to avoid the boom and bust cycle that we so easily get into. But that is much easier said than done and I still push myself too hard on occasion. Being around people who are supportive and understanding can make all the difference too💜. You can do this... you will get there!
My doctors told me the don't want me usei g mobility aids because they don't want me to think in disabled. I showed them the ADA definition of disabled and told them under the ADA I'm considered disabled. They didn't get me anything so I am doing my own research now
Yes the reality is we are disabled so ignoring that isn't going to be helpful. Disability isn't a bad thing and I love my wheelchair now as it enables me to do so much more! I hope you've found something that works well for you 💕
I was just diagnosed with FND Monday. Been using a wheelchair for the past 3 months as I can't walk without my bottom of my feet or ankles hurting. I can't walk more then a few steps without needing to use my Inhaler or even if I'm doing things that take a lot of energy I'll need to use my inhaler. One of my biggest fears right now is that actually going to physical therapy is going to drain me of what little energy I do have.. Especially when they want to see me twice a week..
I don’t know what to do because my walking is so impaired. I was on the floor not long ago and just stuck. Some days I’m in so much pain from walking down the street and back and the next day, exhausted all because my neuropsychologist has deemed it a ‘safety crutch’ to use a mobility aid. I’ve been trying to do ‘doable daily’ tasks each day but my walking can just be so debilitating. I guess there’s no right or wrong answer of course but it’s like my world has gotten so small already at 21 and I’m so tired of the immense effort to be able to do the absolute basics. I wouldn’t want to go against a professional’s advice (I’ve waited over two years for it) but also, I have no life!
I agree with you. I, m having a hard time finding FND hope in the USA . At age 70 and M2F etc. Where can I go in the eastern Atlantic area to get answers.? Thanks be well. Josie
I’m so glad to hear someone else with FND talking about this. I’ve gone through the cycle of pt and relearning to walk twice in the past two years. And have had doctors tell me not to use mobility aids because it will harm me in the long term but mobility aids allow me to continue living my life, especially when we have no way to stop my symptoms from coming back.
I'm glad there's others out there who feel the same way. We do what we can to make our life as good as possible. I wish the doctors and specialists could understand that! I absolutely love my wheelchair and can't imagine life without it now!
@@YeyOrNeightwo years too late but i also know the struggles of mobility when it comes to FND
I went from using a cane, to eventually needing a wheelchair full time to then moving to a motorised wheelchair full time while occasionally using a quad cane for what limited mobility I still have
It sucks so I feel you
Found our more from you than any doctors thankyou
So glad to have helped! There really isn't enough information out there and doctors are often not very informed or have outdated opinions that really don't help us! Hopefully things will improve in time!
Quality of life is so important. Far too often clinicians focus on trying to fix you and make you normal, but it can be very damaging for your mental health. I think there is a lot of ableism in the medical community.
I've noticed that a lot. Since I got my wheelchair my quality of life shot up exponentially and in some ways I'd much rather continue to learn skills to improve that than struggle to control my symptoms in order to look "normal". At the end of the day, I think you just have to take what you can from the medical team and apply what works for you. It's your life at the end of the day! 💜
Quality of life is so important. Sharing the ways of being mobile is wonderful and so important. I love that you have used various mobility aids so that you can have quality of life. I have SCI, but I too wear myself out if I don't follow what my body needs. These fnd series are so educational. Thank you
I'm so glad you've enjoyed it!! It's amazing how much cross over there is between different disabilities! We're all in this together 💜 and we find a way through 😃
Hi thanks for your ideas on quality of life.. having been diagnosed with FND in 2013 and instantly discharged from neurology at my local hospital I've been doing it alone for 8 years I have a selection of walking sticks crutches and a folding self propelled wheelchair and attempt to get some quality of Life using what I need to at the time. I'm also full time carer for my wife who has severe multiple sclerosis so the challenges are what they are. keep looking for that quality of Life and don't let the FND spoil your spirit..
I'm sorry to hear you were discharged immediately and left to suffer alone for all that time, that's essentially how it was for me
Toodlepip there's your diagnosis have a nice life
@vallarfaxgaming it wasn't much fun back when they did the discharge without support but because of their lack of support I have found better ways to cope with the fnd and now I understand so much more about it by learning the hard way...I'm in a good situation now it hasn't been an easy process to get here...hope you have found your good place to
I am in my 50s now, but first started having balance problems as a teenager. (In the mid-80s) Would fall going downhill or running trying to play soccer. Didn’t use anything to help until 30s used a cane for many years, then forearm crutches, but couldn’t break fall very well. Now been in wheelchair for a decade. I wasn’t diagnosed with FMD until 2018 and also have progressive myoclonic epilepsy which affects walking. Nobody has told me no mobility aids. Quality and not injury is more important
I agree with you in regards to staying mobile, it's just facing the facts imo.
I so agree with you, ive been struggling walking for 3 years and had other things found but the spine dr couldn't see why i can't walk. I went to A&E once and got asked who told you to get the rotator and i replied no one i cant walk i keep telling the dr but they don't listen. Even a month before FND was diagnosed was saying to my dad going to need a wheelchair to get to the shops and behind and was totally fed up of doing something small and then being unable to walk the rest of the day. i have a son now and tried mother and baby group last week and couldn't walk for the rest of the day. i have to use a crutch as standard due to a knee problem and elhers/ hyper mobile joints. Use the smart crutch and just one to push the pram with my other hand and last week was the first time someone said wow that must be tough. The standard crutch nearly split my hands in two. Seeing the neuropsychiatrist next week after seeing the Neurologist a couple of weeks ago and ruled out other nerve problems and MS which is nice after the NHS just said your fat and sugar slightly high so its your problem. i was 30kg lighter when i started saying i couldn't walk.
Thank you for this.. honestly I respect your outlook so much because I would have given him a look to kill, listening to that about avoidance strategy & then some. Lol. I have those crutches called gutter crutches lol. They aren't as jazzy as those though.. I would love the yellow ones! I've been thinking about putting some colour on them to brighten them up a lil. How do you deal with professionals telling you "you aren't helping yourself"? I feel suicidal when I hear that. I know that sounds dramatic but that's honestly how I feel when for 8 years every day, every minute that is all I do. Having this illness is a full time job just managing your mental state with it too. I don't have a life except going on my scooter when I'm good enough to get out of bed or using my crutches to walk around my block. It's boring but every time I can do that on really good days I feel like I've climbed a mountain & on a natural high lol. Thank you for sharing. I'm really happy you have a good quality of life as best you can.. you give me hope.
Oh trust me I was not impressed with her comment! Yeah the smart crutches are great if you have hypermobility especially as you can alter the angles to help put less strain on all your joints. Go for it with the jazzing yours up sounds like a great plan 😃 !!
It is definitely really challenging at times, especially when we have a condition that doctors don't fully understand yet. I found surrounding myself with others with different disabilities that lead amazing functional lives really helped me as I learnt a lot of coping strategies for when symptoms got worse. It's also super important to pace your energy to avoid the boom and bust cycle that we so easily get into. But that is much easier said than done and I still push myself too hard on occasion. Being around people who are supportive and understanding can make all the difference too💜. You can do this... you will get there!
Please keep up your videos
I'm trying 💕... got lots of footage as I've carried on filming I just struggle to get the editing done!
My doctors told me the don't want me usei g mobility aids because they don't want me to think in disabled. I showed them the ADA definition of disabled and told them under the ADA I'm considered disabled. They didn't get me anything so I am doing my own research now
Yes the reality is we are disabled so ignoring that isn't going to be helpful. Disability isn't a bad thing and I love my wheelchair now as it enables me to do so much more! I hope you've found something that works well for you 💕
I was just diagnosed with FND Monday. Been using a wheelchair for the past 3 months as I can't walk without my bottom of my feet or ankles hurting. I can't walk more then a few steps without needing to use my Inhaler or even if I'm doing things that take a lot of energy I'll need to use my inhaler. One of my biggest fears right now is that actually going to physical therapy is going to drain me of what little energy I do have.. Especially when they want to see me twice a week..
Hey! Can I ask what to say if I'm told "It only plays into the narrative that you're sick"
It's hott here in Texas to. 🥵
Yeah I'm struggling sooooo much with the heat but I bet it's 10 times worse over there!!
I don’t know what to do because my walking is so impaired. I was on the floor not long ago and just stuck. Some days I’m in so much pain from walking down the street and back and the next day, exhausted all because my neuropsychologist has deemed it a ‘safety crutch’ to use a mobility aid. I’ve been trying to do ‘doable daily’ tasks each day but my walking can just be so debilitating. I guess there’s no right or wrong answer of course but it’s like my world has gotten so small already at 21 and I’m so tired of the immense effort to be able to do the absolute basics. I wouldn’t want to go against a professional’s advice (I’ve waited over two years for it) but also, I have no life!
I agree with you. I, m having a hard time finding FND hope in the USA . At age 70 and M2F etc. Where can I go in the eastern Atlantic area to get answers.? Thanks be well. Josie
If you are still looking there are drs in Boston and a research project there also.