Hi Everyone,
I'm wondering if FND has caused anyone else to lose their ability to walk and to balance. To years ago my normal gait disappeared and was replaced with very slow gait, shuffling gait, and festinating gait. About six months ago my sense of balance also vanished.
Because of my inability to walk normally and to balance, I must now use a walker, which is no fun.
All input warmly welcomed. I'm especially interested in therapies for these conditions.
Thanks to all.
I got a referral for PT from doctors to help. It's now a matter of my insurance not being a pain and covering it.
Hi Sgaetna2013
I'm sorry to hear that you're having walking difficulty. From my experience, you can definitely experience drastic changes like you have. Things that helped me include: Massaging, physiotherapy and having someone physically show you how to walk by taking your leg and moving it as you would do normally. Sometimes there's a disconnect in the brain, so you actually need someone to show abd tell how to walk. I sometimes still experience inability to walk and it happens so out of the blue. That's when I would ask my family to walk for me with my legs until I can manage again. I hope this helps you in some way.
Warm regards
Hi , yes I started with a weak leg n limp on one side ,over18months it got worse each month , now I’m using crutches as my balance n strength is not good , I havnt had a good day since I was diagnosed 18months ago , now having to go private due to waiting list on nhs to see a nuerologist that I was referred to on nhs 🙄, for second opinion on diagnoses , appointment on Monday 9th , will keep u posted 👍
Hello.I’m so sorry for your experience. It’s scary and frustrating.
When I was first hit by FND my legs paralysed by pins and needles crawling up my legs in 20 minutes. I had physio in hospital and learnt to walk with a zimmer. It is now 4 years on and although I walk unaided I resemble John Wayne and I stagger a lot. I get appalling pain in my feet and lower legs and they are always cold. My balance is poor although I feel lucky that I can get about most days.
As one who walked a great deal and loved to dance, I still feel really sad about not feeling in control of where my legs go, not being able to wear attractive shoes and not walking on rough ground.
The only thing that helps me at all is using as many distractions as possible and always using very supportive boots and warm socks.
I really wish you well.
Hi I had FND seizures and on and off my legs will not work as they would normally, sometimes having to drag one leg, the other leg would not work but this one is different. I tried some unweighted exercises this helped a little, when talking to neurology they recommended walking backwards and dancing to make the brain rethink how to walk. This has not always helped me but it could help you.
If anyone wants me to send a video of my achievements through the first and second year with @liviagariani Pilates on line, please keep in contact and I will send it to you as it seems I can’t post a video here. I am now living a normal and independent life, thanks to her.
Hope it helps!
On April 5 2021 I had the first covid vaccine 2 days later I felt pins and needles sensation in my right shoulder and similar but more like an electric current in my legs. By day 4 I could not walk with my normal gait more stiff legged and balance and stability issues. Fatigue started shortly there after, and when tired slurred speech at times. I tried getting into a neurologist but had to wait until December, after brain and full spinal MRI, nerve testing blood work etc. I was diagnosed with FND in February 2022. I just recently started speech therapy and a physical therapy called Z Health to hopefully remap signals from the brain to reconnect, train and regain my ability to walk with a normal gait, restore balance and stability which is of course my hope. Prior to April 2021 I was an avid hiker I hope to again.
Was denied physiotherapist and occupation therapy requested by my GP. Because of a post code lottery. After struggling for 4 months. I have difficulty walking and use a mobility scooter. Have made an appointment to see my consultant in May to discuss the dilemma I face.Contacted my MP but have had no positive response. I just live in the wrong county to access therapy to aid my FND.
Hi I agree with Catz128, being physically moved into a normal walking position helped me and then in Neuro Rehab I was shown the correct sequence of how to walk normally. I learned that there are 2 centres of gait control in the body, the Brain does the more complicated stuff like slopes, uneven ground, avoiding obstacles, balance and the Spine controls the basic motors of the legs to effectively put one foot in front of the other.
The problem with FND seems to be where the Brain is called upon to help out too much and this interference causes the Brain to become overload with confusing signals.
Have your eyesight checked.
Have your ears checked for any balance control instability.
Have your heart checked for any beat or pressure shifts.
If all these areas are okay, then it is a case of trying not to panic that things are not moving correctly, but taking nice steady breathing and persevering with letting the Spine do the basics without engaging the Brain too much. Yes, it takes a lot of courage, practice and commitment to change what essentially your Brain thinks is normal, but remember even a Non-FND affected person has to coordinate 200+ muscles/movements to take even 1 single strep forward - humans really are not well evolved to walk upright without a lot of effort!
Practical exercises you might want to try:
1) Try not to maintain one posture for too long i.e do not sit/lay/stand for more than 20-30 mins without getting up and moving.
2) If a task makes things much worse, try and split it into smaller activity bites to combat the Brain signal overload.
3) Slow down your pace - Go at your own comfortable pace, not the pace of others, try and not be embarrassed is key. Yes, I know it sounds crazy because you already are at a physically slow pace anyway, but I am talking about keeping a good medium level of activity, no boom-bust type activity both for movement and mental tasks. You can get fatigued just by using your mental Brain and not moving - did you know that?
4) Try balance testing movements (with caution) i.e stand and lift one foot off the ground a little and then swap and lift the other, making sure you keep your main body still as possible or stand and shift your weight from one side to the other to reaffirm to your Brain that your legs/feet are contacting with the ground - this helps me walk more sometimes as it reconnects the positive feedback momentarily.
5) Think neck or twisting of the body as a delicate movement, nothing sharp or sudden this will confirm stability to the Brain and movement should be less tight.
6) Do not stress the small stuff, so you dropped something or could not reach a chair when you wanted too - accept there are going to be hiccups, breath, laugh rather than cry, try again and move your mind on to other things.
There are so many FND sufferers out there who want normality back.
Well I have done all that wishing, medical consults, physio practice, done the available Neuro Rehab and honestly FND is not a forgiving quick fix kinda condition. You end up accepting, adjusting, adapting your life to work round the limitations to get a new sense of normal, that you can cope with in all situations. It can take years, so give yourself permission to seek those life adjustments on your own terms and timescale.
Look for the calm in the Storm!
Hi Brokendeer
Thanks for sharing your insights. I did not know how exactly the discord between the brain and legs occur. That's very helpful.
Thank you for sharing this, I have also noticed that practicing those exercises help because I've been trying to do those on my own without knowing that it would help me start to get back to being with my normal ways. I love everything you said to do because I didn't know it had anything to do with FND, I was always told that I have POTS and things like my heart rate changing and my blood pressure and everything was caused by it and my doctors would tell me to not sit or stand for too long and to go slow but I think I actually have FND and not POTS so this helps me know more about it. Thank you
I’ve lost the ability to weight bear on my left leg and as my arms and legs give out I cannot use crutches.
I know lots of people in a similar situation to you
I'm sorry to hear about losing your balance and having gait problems. I also have been suffering from gait for a few years now with buckling knees and having a hard time walking after FND seizures. I have to use a walker if I'm walking long distances or standing for a long time I need to have it with me and for shorter distances or if I'm having a better day then I can use my cane. Honestly nothing has helped my legs that much other than doing yoga and trying to strengthen my legs like everybody tells me to do. I'm sorry if I'm not much help but I hope you find something to help you. Don't be ashamed of using mobility devices because they are here to help you and just embrace everything you need to do to help yourself, that will help if you have confidence and self acceptance. I wish you the best.
Hi VR053,
I really appreciated your comment. I use a walker and a rollator in my house, but I still haven't conquered the embarrassment/shame hurdle of using these devices outside my home. Irrationally or not, I feel age 68 is too young to have to use these devices in public. Did you undergo a similar reluctance? If so, what helped you overcome it?
Yours is one of the most meaningful comments I have received to my post. Thanks so much.
Hi! That's great to hear that you appreciated it. Yeah it's hard to overcome the shame and embarrassment because it's not "normal" to society for younger people to use mobility devices which we should change the perspective on. Yes I went through the same thing like I would feel bad for my loved ones to have to help me with the mobility devices or just be around me in public with them because I felt like a burden and like I was slowing them down. I still kind of feel that way sometimes especially around people who don't understand or want to help or know what's going on, but I've gotten better and feeling more confident with them around those who do care and want to help. So some things that have helped me overcome it is decorating your devices or getting ones that make you feel the most like you, mentally kind of create a bubble around you and your device and don't let anybody's preference or opinion break down that bubble because even a little glare can knock you down so it helped me in school to create that bubble in my mind and act like nobody could tear it down because it was my confidence and self isolation from bad opinions. Another thing that has helped is accept the help from your loved ones whenever they offer it or just ask them to help if they can and don't tell yourself that you are a burden or slowing them down or too much to handle. And lastly, accept yourself the way you are and who you are becoming and know that there is nothing wrong with you and anybody that tells you different, they are the problem to society not you. The other thing is whenever somebody makes a rude comment about you and your conditions, maybe say something back to them or ignore them but either way let go of what they said and just let go of them if they don't have respect for you. Don't let others drag you down, and especially don't let yourself drag you down because you deserve to be at the highest point above everybody else because of everything you've been through. Even though you feel this way, I'm still proud of you for asking for advice and still being here and not giving up. I'm glad to hear my post is one of the most meaningful to you, that makes my day. I hope this one helps you as well, just let me know your thoughts and anymore questions. You got this.
Hi VR053,
Initially, I didn't think joining this comment board would be helpful, but it is SO helpful, most especially your comments. I love your idea of decorating my mobility devices! I wish it were possible to buy mobility devices that are art pieces in themselves; you see some gorgeous custom canes online, and you know the first thing an onlooker would see would be the beauty of the device and then realize the purpose of the cane.
I'm almost afraid to say it, but I seem to be going through a bit of a remission in the past few days, so right now I don't need to use my mobility devices. But you will be the first person I tell when I overcome my embarrassment/shame enough to use these devices outside my home.
When I am ready for my first venture outdoors with my rollator, I am going to ask my wonderful PT to walk with me to a nearby Starbucks: moral support and physical support if I need it.
Thanks so much for your generosity.
Barb
Hi!I'm so glad to hear that I'm helping you. Yeah I bought a cane that has roses all over it to help me feel better about using it because I love roses. Oh ok I understand. That would make me so happy to be the first to hear about it, thank you so much. That sounds fun to do, I wish I could walk to a Starbucks with you and cheer eachother on.
Of course, I love to help and have new friends.
You got this Barb!
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