Partial paralysis

[BlueLizard12]

I've been struggling with accepting my partial paralysis. It comes and goes, sometimes at random but, normally when I have seizures. I have always been very independent so this limiting me has been such a challenge to my mental and emotional well-being.

[CreativeBird]

Hey BlueLizard12, I hear and feel your share!

I have had flares of FND symptoms since I was a child so strangely I have self-mastered adaptive tools in my kit as 54 year old. My long-awaited diagnosis was only a few months ago during a severe flare :-). It's been an enlightening experience, to say the least!

So, what I can offer you is something of a tool for a coping and management mechanism:

Know that any anxiety (stimulation) around your observation of the symptoms will worsen your symptoms. Coffee amongst other food stimulants will do the same for me :-).

So, I find, to practice being kind to yourself, even after a good cry (to honour the fear and despair), you may see the duration of symptoms eventually shorten, and have longer windows of good days during flares.

I hope this helps a bit

[BlueLizard12 in reply to CreativeBird]

Thank you for your comment. I haven't paid much attention to possible stimulants when I am having a flare (Especially food). I will definitely keep an eye out and see if I notice any.

[CreativeBird in reply to BlueLizard12]

That's great! So my main stimulants are:

Oats. I used to think I was allergic because I would get severe systemic, neurological stroke-like symptoms from oats. Now I know it's overstimulating my central nervous system. We used to give oats to our horses to get more spring in their step for shows!!

Coffee. If I am in a flare, coffee is a no-no if I experience spasms, disassociation and seizures as a baseline overstimulated state.

Wheat (gluten). For me, gluten will generally inflame joints and my brain, causing (potentially self-harming) depression and anxiety, which then goes onto more FND symptom experiences.

Other stimulants are anything to do with our flight fight central nervous system response to any stimuli–the main being stress.

I have a 29-year-old son with schizoaffective disorder and type one diabetes since he was a baby. So I am learning how to observe his daily lifestyle (differently) while he now also abuses substances, threatening his life on a daily basis and being hospitalised periodically on life support.

Later insight: I had FND seizure symptoms, bringing on-prem labour while carrying him at 26-week gestation. He also now experiences life-long FND symptoms. This is why CBT therapy and practising meditation is so so important to managing FND!

I trust you will get your own insights soon. Be kind and gentle to yourself

Many blessings to carry you on your way 🙃

[Sjbuck]

when I had episodes of weakness and not able to walk, sounds strange but try different positions. (When my hair kept changing I couldn’t walk forward but could walk sideways) strange!

Also easier said than done but take your mind off the situation and focus on things you can then you start to regain some normality.

Meditate - smelly scents worked for me a little. Meds didn’t agree and found no change when on them.

[ToesKnees]

It's so scary and hard to cope I understand and can relate completely. I am here for you if you ever need someone to just talk with and remind you your not alone and you will get better. After my episodes I get tingling and a feeling like my legs falling asleep it's painful. I am hoping it passes quickly