Kath 2.0

It's possible that I have had undiagnosed FND for years. I always thought that I was dealing with complex migraines, as told by a neurologist. It was similar to losing my speech and coordination, each time I had a migraine.

2022, at work, and I was waiting for a GP call-back. Wasn't feeling well that day, couldn't put a finger on it but was like something was brewing. When I got the call from my medical practice, I moved away from my workstation and walked, unsteadily into a private room, put the phone on speaker and stretched. As I did both arms and hands started to severely temor. Over the next 2 hours, I had forgotten how to walk, could no longer talk and balance and coordination had disappeared. I was involuntarily contorting my face and mouth to the left side. Initially, my colleagues thought I was having a stroke. I was hospitalised for a week with CT scans, MRI and a lumbar puncture, before being discharged with a zimmer-frame, toilet seat raiser and frame surround.

They didn't give any diagnosis, I could only speak in percussive sounds or utter nonsense, couldn't remember how to walk and was destraught! I got home and the following week we'd booked for a holiday to Welsh coast. Normally we'd pick somewhere that had lots of walking, but on the day of our holiday, I chucked the zimmer frame into the car and told my husband to drive to our nearest Disability Living store. Purchasing a quad stick, I attempted to use it when getting out the car. Of course, the holiday cottage was up a narrow set of steps, set into a hillside and with a very steep incline up the garden. I set off determined to mountaineer up the steps and garden. Managed it! Turned around and looked at the view, and reason for the choice of accommodation . . . I cried, a sea view sparkled in front of me. With no idea how I was going to get back down the garden, I cried some more.

When home OT supported me and I didn't get any type of diagnosis till 8 months later, with a private neurology appointment. (would have been 14 months at least, otherwise)

I felt like it was something like having 3 switches, one for mobility, one for speech and one for cognitive process. All 3 could not function at the same time. Bit by piece, my speech improved, with help from speech therapy, and I managed to get back to choir which was the best thing! I could still sing even on my most incoherent speech days.

I couldn't understand the variances day to day. I must be imagining these symptoms surely!?

I was cross with myself that I couldn't control this - I agreed to have talking therapy. That really helped me to be kind to me, to not play the blame game.

Each day is a bit of a lottery. Some days I can get out of bed and know the day will be reasonably good. It can change in a heartbeat as the day goes ahead.

Some days, I have to literally talk myself through everything I need to do, from getting clothes - if I'm getting dressed, to saying 'now you need to get in the shower, and do your teeth' It's as crazy as that.

Speech can fail at a second's notice; one minute talking and being relatively articulate, next spitting out rubbish, stammering, can't place words, can't remember what I was saying.

Initially, when I was getting my mobility back, I found that the scenery was in time-lag. I'd be walking at a reasonable pace but the view infront and at the side, wasn't catching up! Things with a pattern or lines on the floor, trip my head and I can't step properly or sometimes tip forward. Fortunately, the days of walking like a show pony doing dressage, are past me!

It's so frustrating some days. I can completely zone out, which I learned was disassociation. If there is noise around me, my speech can just switch off or lose volume. This in turn will trigger either a problem with tremor, or mobility. I know it often doesn't last all that long, but it's a real pain.

I stim and tic too now, I also find being in a crowded area difficult

I have taken to wearing partial noise cancelling earphones when I am exposed to loud areas, which can and often do cause havoc with my speech.

I have found humour invaluable, but equally a cry helps too

The very best thing I did was against every fibre of my being, join a fitness group. This was transformational! I gained not only support and friendship but re-calibrated my coordination, balance and grew my confidence. So much so, that I was able to ditch the mobility aid and also go on all terrain walks again, which my son took me on and even had me climbing over stiles and 5 barred gates!

After 3 years of being unable to work; I used to be a Community Link Services Officer, so matching people's needs in their community with what was available to support them. I loved it so much. Now, I am back in the workplace at 61 and very pleased to report I am with my local Council in their Healthy Lifestyles team as a stop smoking advisor. I have great support, but it was difficult to start with as I had no idea how FND would be affected day to day, till I got into doing the role. It's not been without its challenges. Using the phone for client appointments and speech going awol infront of clients, has its moments