As my FND symptoms have progressed.... weakness, tremor and dizziness, and now constant knee buckling, I've had to resort to using a walking stick. I've tried to disguise my problems, but the stick has caused more attention to all of the above. Friends and acquaintances, who have zero knowlege of FND are now asking, "what's up with the stick?" I have no idea how to respond.
Suggestions would be most welcome!
Hi there i’m Lucy from Brighton and I’m almost 10 years along this FND journey so here goes …
Ive had/ have on bad days a left leg limp and move very slowly some days…very stiff after sitting etc but no seizures or anything fortunately
Firstly good for you using the aids you need to get about as much as your can 
I read somewhere, maybe on the FNDhope.org super helpful website, that you find you ideally need three answers up your sleeve
1- a very short one for those acaquitances who just ask as they see the stick …. and you only need a short reply
My mobility seems to be better some days than others at the mo ….. if they ask for more .. I say I’m having some tests.
2- a medium reply for friends etc colleagues -
I say my central nervous system mal functions at times that’s all. Affecting my mobility.
3- a longer reply for good friends and close family
… as no 2 but with more detail if you feel they are interested and may have empathy.
I have found some folk that you expect to empathise, often don’t and that’s ok too.
I’m not sure how long you’ve had this going on…?.
I have long days out, when I use a mobility scooter ( only just got around to getting one 2nd hand!) Then days out on a train maybe to London ! then I use my stick, and wheelchair IF I take a plane…… but mostly now, I can manage with the limp and a few stairs even… and I try !! to PACE myself …. tho I do work full time too
Ocassionally I get remarks, when I use a blue badge parking bay too … but you get a thick skin I guess, we all have too!
I’m not sure if this is helpful but I do hope so
Stay strong
Lucy x
Thanks, Lucy...very helpful...I'm going to use your suggestions! Symptoms have been multi-year and ever changing, but definite diagnosis was made about 8 months ago. As you said, some days are better than others. Love the better ones!
Hmmm, I doubt anyone would say (re other mobility aids) 'what's up with the glasses?' so my reply would be 'funny, you don't look like an ableist to me, but luckily there's a cure for that'.
Hi Poseypink
So nice to meet you i went from walking with surport of someones arm to then a walking stick then to a wheelchair sometimes i use both all depends on how i am that day and like yourself i got a ton of questions thrown at me about the stick or the chair and it hurt and having to keep explaining it all the time got to me.
Now i do not fill that i have to Justify Answering to anyone if you need to use it, then use it. Do not fill you owe anyone a Explanation.
Fnd is hard enough on a day to day basis without extra rubbish frown ourway
Take care
Tabe
Thanks for all the replies. To be clear, no one is asking out of anything but concern as they are not used to seeing me this way. It's such a complicated thing to explain...
Hello Poseypink.
I must say I really like your user name!
Regarding your use of a walking stick or any other assistive devises, I recommend being honest but short and sweet “I am feeling a bit unsteady on my feet, sooo, better safe than sorry.”
I do not understand why you are keeping FND symptoms under wraps because folks don’t understand FND. People close to you should want to understand whatever is causing difficulty in their loved one’s life ask them to look up FND, ask you questions, and learn. I find FND Hope a great learning site
I hope the image at top of my reply will help folks understand. I find visuals often help people learn.
HenriettaPoultryfoot
HenriettaPoultryFoot again. Here’s another image. It shows the wide array of symptoms that FND warriors may experience.
A bit late to the thread, I think you have some great suggestions there. A couple made me smile.
I actually try and avoid talking about it where possibly because I think some comments (even from best friends) can be upsetting (although they have your best interests at heart) or I end up questioning my actions and sometimes it just goes over their head as they have no understanding or desire to understand. That, or they loose interest and start another conversation.
Until someone has walked in your shoes they have no right to judge.
Does FND cause gastroparesis? What else will FND do to me?
confused
Neurologists best for FND
