New FND veteran

[CreativeBird]

Hi

I’m somewhat a veteran to FND. I started having functional neurological issues as a child. I’m now 54. Only recently in this latest 2.5 year flare, (after yet again all normal myriad of tests) I became a squeaky wheel and got myself admitted to hospital through the ED; and after 2 days; a few angels (the right doctors) later, I got an FND diagnosis from a team on the neurology ward.

I had never heard of FND. But I totally understood what it was and why and how too. It is a relief to finally be heard; and a relief to finally get some supports too.

I experience most of the symptoms in the FND show bag. And some…

I have a good “self help” tool kit to manage, which I am grateful for. And Now I hope I am still neuro plastic enough to go back into remission after this most severe flare; and keep pacing as I shuffle upright little distances with my cane. Among other self-determined things to make a living in my way.

I’d be interested to know of any other long term FND warriors whom were never believed or understood until more recently. What tools do you have in your kit, out of sheer determination, self discovery and tenacity?

Blessings

K

[CreativeBird]

Hi

I can relate. Unfortunately while you feel like you’re going insane, anxiety will be stimulating your central nervous system and making the FND four fold. Can you just ask for a referral to a neurologist? Maybe pick one out that has an FND interest.

I am in Australia and FND has only really started being more accepted by some specialists in the recent past.

[CreativeBird]

I can only say what works for me when sensory symptoms take over: stay off all stimulants like caffeine, glutens from wheat and oats. Meditate and meditate again daily. Guided meditations are great to build up your ability to visualise feel good and relaxing things. Hang in there 😌

[wlpg]

Hi K.,

I appreciated what you wrote. Although I am not a veteran to this shared dysfunction, for me I began having symptoms early 2019 mainly affecting my left side causing walking difficulty.

I tried Physio with little results, my GP says just try to keep as active as possible, for me swimming is best. I believe in divine healing and seek out prayer regularly. Hope that things will change for the better not worse helps my mental state most days. I try to be thankful and grateful for what I can do and what I do have. I avoid the news, I find it 99% depressing

What are some of the tools you use?

Also a mature female, I live in Canada

[CreativeBird in reply to wlpg]

Hi Wlpg

Lovely to read your reply! My most recent tool discovery seems to be a revelation: "Sand walking"!!! Yesterday, after 3 really rough "feeling like I am dying" days with every FND symptom, with very broken and "stretched out in treacle" speech, I asked my husband to drive me down to the nearest dry river bed so I could walk barefoot in the deep sand. I live in Outback central Queensland, Australia! Backstory: Recently at Easter time, I discovered beach sand walking seemed to be very therapeutic and my walking improved for around a week. So anyway, yesterday, after 1 minute on the river sand, most of all the FND symptoms melted away; I didn't need my cane on the unstable deep sand; I picked up pace too. My husband told me to keep it shorter so as not to overdo it. I walked back up the riverbed bank and back to the car unassisted!!

Later in the day, I did feel a heap of fatigue but used my other tool which is guided spiritual-style meditation (around the intention for healing); and that as usual gave me relief.

Today, I am still benefiting from what seems to be a sensory reset from the sand walking.

If you haven't already tried it, go do it and let me know what results you notice. I would really love to see others benefiting from this. Online, I found one study for stroke patients having benefited from sand walking but not much else. They say it helps with the proprioception function which makes sense with FND.

I've recently taken up a large jigsaw puzzle for exercising my fine motor skills and stretching (across the puzzle). My problem is I get obsessed and then don't pace well. Severe fatigue is then my challenge. I am figuring it out though.

Another tool I use is walking barefoot in my garden and sitting to observe everything grounding for all the senses. I have many birds coming through to keep me attentive.

I've recently surrendered to an electric, folding wheelchair to go grocery shopping for the first time in over 4 months with my husband. Accepting the chair was hard. My mother modelled a heap of shame around using a wheelchair when my sister was diagnosed with muscular dystrophy in her early teens. Anyway, I have found some freedom and a way to minimise sensory fatigue so...

That was long! How is Canada? Going into summer soon! We are cooling into winter here.

Blessings

K

[wlpg in reply to CreativeBird]

I love what you wrote especially about the sand walking! It’s just after dinner here, I’m fading a bit so this will be short.

I was doing barefoot beach walking and yes, I think it really helps. Now that we are warming up here I need to get back out there.

Thanks for the reminder 😊

[CreativeBird in reply to wlpg]

I am so Glad 😀 Yes, yes go back out to the sand walking. The deeper the sand the better. At least if we fall, it will be a soft one! Have a lovely evening. I love the late light of day😌