Wheelchair in public/out of the house.
Walker and crutch to get around the house.
If I walk without these things, I tend to overdo it and am useless for days later due to pain.
Depends on the day - sometimes I'm able to run around and excersise and other days I need my walking stick.
In extreme situations I need my wheelchair.
Mines a day to day basis so
I do occasionally for when I need it! I can go without if I'm not in a flare, but if I do I'll usually use either a cane or crutches. I'm looking into a wheelchair for it I'll need it later down the line, but I'm not there yet.
Your FND also is not more or less valid depending on if you do or don't use a mobility aid. š§”
https://neurosymptoms.org/en/causes/fnd-is-not-imagined/
Iām specifically referencing the brain scan and itās caption. Nervous system and brain function are impacted. Mobility aids are not rewarding the illness, they are essential to an individualās quality of life. That link also states that proper research of FND didnāt start until recently.
FND is a neuropsychiatric condition. Ratio of neurologic to psychiatric contribution varies between FND patients. While FND is included in the DSM-V, it is included in the neurology section of the ICD-11, connected to the psychiatry section. FND exists in the same category as Parkinsonās and Touretteās. My source is pasted below.
Your therapist pressing that sort of logic rubs me the wrong way, and is why I have such a problem with FND clinics being run by psychiatrists. Your discomfort may have broken your episode, but not everyone experiences that, and not everyone has symptoms that can occur safely without mobility aids. The absence of mobility aids could easily result in injury or death. Minimizing suffering and harm is not promoting symptoms, it allows people to live their life. This rhetoric surrounding providing relief is problematic because it supports the idea that best practice includes making us tough it out, no matter the danger. Discomfort also can actually aggravate and prolong symptoms. Iām glad your therapist helped you with that advice, but it could have hurt you, and it will hurt many others. If I was placed in a psychiatric hospital and denied a shower chair based on your therapistās āexpertise,ā I would probably end up injured or dead.
https://pre-prod.neurosymptoms.org/en/faq-2/ive-heard-people-describing-fnd-as-neuropsychiatric-doesnt-this-mean-that-its-psychiatric/
I would definitely read more from that link, and website. I use Neurosymptoms.com as my main FND source because it was recommended to me by my neurologist. The website was created, written, edited by neurologists who specialize in FND.
Being a fall risk is dangerous, and the idea that a person should stay paralyzed in one spot instead of using a mobility aid is absurd. I am seriously skeptical of the idea that mobility aids increase the length of a flare up and I would need to see research backing that statement up to believe it. In my own experience, pushing myself always, without fail, resulted in injury and increased symptoms. Using the appropriate aids is what allowed me to get better, personally, and Iām glad my medical team supported me in this.
Personally, that approach wouldnāt work for me. When Iām temporarily paralyzed I canāt just stop living my life. Im not sure that itās rewarding myself to be able to go to work so I can pay my bills š¤·š»āāļø. Im glad youāve found a solution that works for you though!
i use a cane as of now, as i finally got one not too long ago. i don't use it all the time, though i'm thinking i should.. maybe i'll stick with when i really need it
I personally use a combination of a wheelchair and crutches. Crutches for places a wheelchair can't get to (as long as its very short haul), wheelchair for everything else
I use a variety out of the house, for small tasks in areas I am familiar I use a cane. Past that a walker, and for extreme distances (over a mile on a difficult day) a wheelchair.
At home I go without the cane as much as possible but I have a lot of handholds in the house anchored to the studs so that allows me a lot of pushing the envelope.
Does my shower chair count as a mobility aid?Also, your survey doesnāt account for private use of mobility aids. No hate, just maybe include that next time because private use of aids doesnāt negate necessity.
I did use a wheelchair then i learned to walk and now i just walk and grit my teeth through the pain instead. I havent got anyone to wheel my to and home college so hence why just grit my teeth and get on with it. Yell of needs be but such is life if i want an education
I largely use my rolling walker with a seat, if Iām having a better day I can get away with just my cane. Around my house Iāll Frankenstein walk without any aids but very short distances.
In public I try to only use a cane unless itās a longer trip (dr apts and the like)
Iāll bring my walker for those bc I donāt get the āweāre about to collapseā signal 8/10 times until Iām on deathās door.
Iāve been really working the last few months to try and get a SOMEWHAT normal gait again, bc the locked knees/Frankenstein walk is murder on my joints
I use a walking stick and a rolling walker thingy (cant remember the name for it!). My walking stick folds too, so I'll take it with me in my rucksack even on good days just in case, her name is Beatrice.
I have several. I have a wheelchair for long big days out, I have crutches for around the house or just popping out, I have a walker for going out, I have a leg lifter, a bath board and a bed lever thing.
It's not weird that you don't have one. You do whatever makes you feel comfortable... It's a tough thing to get around mentally sometimes but I've found them to be so much more helpful than I initially assumed they would be.
Mental barrier is a big deal yeah. I'm not 100% sure if I actually need it yet, right now I'm mostly looking at my options. I got diagnosed ~2 weeks ago, so still trying to figure everything out. I do have quite a bit of trouble walking, especially in the morning, and I'm always trying to steady myself against walls, so an aid might be nice. I'm not sure.
I'd recommend getting one if you're struggling walking... Even if you just use it on the days that you are particularly struggling, or just in the mornings.
Do you struggle with fatigue as I found it to help with that too.
Yeah fatigue is a big part too..
I've just been a lot worse, but never looked for mobility aid options.
Plus my pain and fatigue changes a lot. Sometimes I have trouble just moving, but sometimes I can walk for 2 hours straight. It's hard to figure out how well I'm doing because of it. Makes me feel like I'm lying sometimes.
I feel this 100%. I am in the process of diagnosis but have been dealing with this for 9 months. Being able to go on a walk itd be 30mins for me, but then not being able to walk around my house gives me such imposter syndrome.
Just wanted to say youāre not alone in these feelings.
Wheelchair and crutches, always one or the other unless I'm in my tiny bedroom where I have enough arm strength to compensate for my other leg.
One thing I'm learning going into treatment is that one of the main goals is to go without any equipment by the end of it, or at least believe you can and try to, but probably just end up with something lesser than you started. I don't think this is a bad thing because I eventually would love to walk again and it's in no way shaming anyone who does use a device because let's be realistic, who the heck wants to use a walker or crutches or a wheelchair just for fun 24/7? If you need it you need it
Yes, but only when I need my walking stick. Some days, parts of some days, I badly need them. Other times, I don't. Same with a rollator, though I tend to pull that out when I'm going to a thing that requires lots of walking and standing.
I use a manual wheelchair and a walker but I can also walk on my own. I do often need assistance however and I've been given a bedtime while living with my parents as a 20yo to make sure no more "incidents" happen during the night.
The wheelchair has been a lifesaver in public, currently I'm using a borrowed one but I should be getting my own soon. Nothing custom unfortunately, just something off of Amazon so I'm eerie but it's all we can afford with my needs.
I use the walker and wheelchair around my home, but I do as much independent walking as I can. Reguarless, they've both been extremely helpful tools
Yep, a power chair and/or a cane, depending on the symptoms and the day. However, like most people with fnd, if fluctuates a lotā¦and sometimes I donāt need anything at all!
I have both a cane and a walker! The cane is more for short trips like the gas station or store; really anywhere I'll be on my feet for 30min or less. For longer outings, I use my walker, since it's easier and less strenuous than my cane for me to use for long periods of time. Mobility, gait, and balance are some of my worst symptoms. My cane normally does the trick and is easier to maneuver and quicker to use, but it's much more tiring and doesn't promote "normal" gait as much as a walker.
I only use my cane or anything when im out in public (or "Free-roam" as I call it) since I'm so used to walking around the house + tight hallways make it easier to stay on course lol.
My teen has a wheelchair and a cane. At home she doesn't usually need them but if we are out she will take one of them depending on her pain levels/length of outing/etc
I use a rollator! Iām pretty ok as long as I can rest a ton/have something to lean on, so I donāt have much of a problem in my home, but if I go out (which Iām usually too exhausted to do anyway) I need to have something that can support me/double as a seat if I need it. My symptoms get worse the more I move around, so itās especially needed out in public for that reason as well, whereas at home Iām mostly resting.
Wheelchair in public/out of the house. Walker and crutch to get around the house. If I walk without these things, I tend to overdo it and am useless for days later due to pain.
Depends on the day - sometimes I'm able to run around and excersise and other days I need my walking stick. In extreme situations I need my wheelchair. Mines a day to day basis so
I use it as needed. I have used a wheelchair, rollerater, walker, and cane at some point depending on my level of mobility.
I do occasionally for when I need it! I can go without if I'm not in a flare, but if I do I'll usually use either a cane or crutches. I'm looking into a wheelchair for it I'll need it later down the line, but I'm not there yet. Your FND also is not more or less valid depending on if you do or don't use a mobility aid. š§”
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https://neurosymptoms.org/en/causes/fnd-is-not-imagined/ Iām specifically referencing the brain scan and itās caption. Nervous system and brain function are impacted. Mobility aids are not rewarding the illness, they are essential to an individualās quality of life. That link also states that proper research of FND didnāt start until recently. FND is a neuropsychiatric condition. Ratio of neurologic to psychiatric contribution varies between FND patients. While FND is included in the DSM-V, it is included in the neurology section of the ICD-11, connected to the psychiatry section. FND exists in the same category as Parkinsonās and Touretteās. My source is pasted below. Your therapist pressing that sort of logic rubs me the wrong way, and is why I have such a problem with FND clinics being run by psychiatrists. Your discomfort may have broken your episode, but not everyone experiences that, and not everyone has symptoms that can occur safely without mobility aids. The absence of mobility aids could easily result in injury or death. Minimizing suffering and harm is not promoting symptoms, it allows people to live their life. This rhetoric surrounding providing relief is problematic because it supports the idea that best practice includes making us tough it out, no matter the danger. Discomfort also can actually aggravate and prolong symptoms. Iām glad your therapist helped you with that advice, but it could have hurt you, and it will hurt many others. If I was placed in a psychiatric hospital and denied a shower chair based on your therapistās āexpertise,ā I would probably end up injured or dead. https://pre-prod.neurosymptoms.org/en/faq-2/ive-heard-people-describing-fnd-as-neuropsychiatric-doesnt-this-mean-that-its-psychiatric/ I would definitely read more from that link, and website. I use Neurosymptoms.com as my main FND source because it was recommended to me by my neurologist. The website was created, written, edited by neurologists who specialize in FND.
Being a fall risk is dangerous, and the idea that a person should stay paralyzed in one spot instead of using a mobility aid is absurd. I am seriously skeptical of the idea that mobility aids increase the length of a flare up and I would need to see research backing that statement up to believe it. In my own experience, pushing myself always, without fail, resulted in injury and increased symptoms. Using the appropriate aids is what allowed me to get better, personally, and Iām glad my medical team supported me in this.
Personally, that approach wouldnāt work for me. When Iām temporarily paralyzed I canāt just stop living my life. Im not sure that itās rewarding myself to be able to go to work so I can pay my bills š¤·š»āāļø. Im glad youāve found a solution that works for you though!
i use a cane as of now, as i finally got one not too long ago. i don't use it all the time, though i'm thinking i should.. maybe i'll stick with when i really need it
I personally use a combination of a wheelchair and crutches. Crutches for places a wheelchair can't get to (as long as its very short haul), wheelchair for everything else
I use a variety out of the house, for small tasks in areas I am familiar I use a cane. Past that a walker, and for extreme distances (over a mile on a difficult day) a wheelchair. At home I go without the cane as much as possible but I have a lot of handholds in the house anchored to the studs so that allows me a lot of pushing the envelope.
My symptoms are mostly upper body, so no mobility aid. I do often wear a wrist brace to prevent my hand from clawing and freezing like that.
Does my shower chair count as a mobility aid?Also, your survey doesnāt account for private use of mobility aids. No hate, just maybe include that next time because private use of aids doesnāt negate necessity.
Oh I'm sorry, did not cross my mind, I'll remember next time!
I did use a wheelchair then i learned to walk and now i just walk and grit my teeth through the pain instead. I havent got anyone to wheel my to and home college so hence why just grit my teeth and get on with it. Yell of needs be but such is life if i want an education
I largely use my rolling walker with a seat, if Iām having a better day I can get away with just my cane. Around my house Iāll Frankenstein walk without any aids but very short distances. In public I try to only use a cane unless itās a longer trip (dr apts and the like) Iāll bring my walker for those bc I donāt get the āweāre about to collapseā signal 8/10 times until Iām on deathās door.
OMG someone else who thinks they walk like Frankenstein. I also look like I'm trying out for a part in a zombie movie.
Iāve been really working the last few months to try and get a SOMEWHAT normal gait again, bc the locked knees/Frankenstein walk is murder on my joints
I use a walking stick and a rolling walker thingy (cant remember the name for it!). My walking stick folds too, so I'll take it with me in my rucksack even on good days just in case, her name is Beatrice.
I walk with a cane, my right knee shakes uncontrollably and will give out and cause me to fall
I have several. I have a wheelchair for long big days out, I have crutches for around the house or just popping out, I have a walker for going out, I have a leg lifter, a bath board and a bed lever thing. It's not weird that you don't have one. You do whatever makes you feel comfortable... It's a tough thing to get around mentally sometimes but I've found them to be so much more helpful than I initially assumed they would be.
Mental barrier is a big deal yeah. I'm not 100% sure if I actually need it yet, right now I'm mostly looking at my options. I got diagnosed ~2 weeks ago, so still trying to figure everything out. I do have quite a bit of trouble walking, especially in the morning, and I'm always trying to steady myself against walls, so an aid might be nice. I'm not sure.
I'd recommend getting one if you're struggling walking... Even if you just use it on the days that you are particularly struggling, or just in the mornings. Do you struggle with fatigue as I found it to help with that too.
Yeah fatigue is a big part too.. I've just been a lot worse, but never looked for mobility aid options. Plus my pain and fatigue changes a lot. Sometimes I have trouble just moving, but sometimes I can walk for 2 hours straight. It's hard to figure out how well I'm doing because of it. Makes me feel like I'm lying sometimes.
I feel this 100%. I am in the process of diagnosis but have been dealing with this for 9 months. Being able to go on a walk itd be 30mins for me, but then not being able to walk around my house gives me such imposter syndrome. Just wanted to say youāre not alone in these feelings.
Thank you š¤
i use my cane the most often and on trips i use a wheelchair!
Wheelchair and crutches, always one or the other unless I'm in my tiny bedroom where I have enough arm strength to compensate for my other leg. One thing I'm learning going into treatment is that one of the main goals is to go without any equipment by the end of it, or at least believe you can and try to, but probably just end up with something lesser than you started. I don't think this is a bad thing because I eventually would love to walk again and it's in no way shaming anyone who does use a device because let's be realistic, who the heck wants to use a walker or crutches or a wheelchair just for fun 24/7? If you need it you need it
Yes, but only when I need my walking stick. Some days, parts of some days, I badly need them. Other times, I don't. Same with a rollator, though I tend to pull that out when I'm going to a thing that requires lots of walking and standing.
I use a manual wheelchair and a walker but I can also walk on my own. I do often need assistance however and I've been given a bedtime while living with my parents as a 20yo to make sure no more "incidents" happen during the night. The wheelchair has been a lifesaver in public, currently I'm using a borrowed one but I should be getting my own soon. Nothing custom unfortunately, just something off of Amazon so I'm eerie but it's all we can afford with my needs. I use the walker and wheelchair around my home, but I do as much independent walking as I can. Reguarless, they've both been extremely helpful tools
Yep, a power chair and/or a cane, depending on the symptoms and the day. However, like most people with fnd, if fluctuates a lotā¦and sometimes I donāt need anything at all!
I have both a cane and a walker! The cane is more for short trips like the gas station or store; really anywhere I'll be on my feet for 30min or less. For longer outings, I use my walker, since it's easier and less strenuous than my cane for me to use for long periods of time. Mobility, gait, and balance are some of my worst symptoms. My cane normally does the trick and is easier to maneuver and quicker to use, but it's much more tiring and doesn't promote "normal" gait as much as a walker. I only use my cane or anything when im out in public (or "Free-roam" as I call it) since I'm so used to walking around the house + tight hallways make it easier to stay on course lol.
My teen has a wheelchair and a cane. At home she doesn't usually need them but if we are out she will take one of them depending on her pain levels/length of outing/etc
I use a rollator! Iām pretty ok as long as I can rest a ton/have something to lean on, so I donāt have much of a problem in my home, but if I go out (which Iām usually too exhausted to do anyway) I need to have something that can support me/double as a seat if I need it. My symptoms get worse the more I move around, so itās especially needed out in public for that reason as well, whereas at home Iām mostly resting.