Finding a positive way to live with FND26 January, 2018
Finding a positive way to live with FND
FND, or Functional Neurological Disorder to give it it’s full title, is another common neurological condition. Yet, as with epilepsy, there is little in the way of support available for people living with this condition. One of the main aims of Purple Caffe this year is to forge strong positive working relationships with other like-minded charities and support groups in the local area. In addition, we are looking to extend our Charitable Purposes to offer support to children and families living with other neurological conditions such as FND, NEAD and so on.
So we were delighted to get in contact with the founder member of one of the first Facebook-based support groups for FND, Kez Malloch from Kirkcaldy, Fife. Kez set up the group in 2010, after being diagnosed with FND herself, and not being able to find any support locally. She told us about her first experience of FND.
I was diagnosed with FND 7 years ago. I woke up in the morning, and the left side of my face was all droopy, and my left eye was swollen shut. At first, I thought it was some sort of allergic reaction to something, but I went to see my GP, who told me it was Bell’s Palsy. I was given a course of steroids, and then sent home. But within 45 minutes of taking the steroids at home, my left arm started tingling and going weak. By this stage, my husband was worried that it was a stroke, and so we went back to the surgery, who immediately referred us to a special ward in the hospital. My mouth had dropped so badly by this time that I was drooling, and then my left leg began dragging behind me.
Kez was then put through a number of tests, to try and determine exactly what was going on. She had both MRI and CT scans, as well as X-rays, a lumber puncture and various blood tests. She also a number of other physical and neurological examinations, as doctors tried to get a diagnosis. Within 24 hours, they were convinced that Kez’ symptoms were consistent with FND.
She then underwent a few weeks of physio whilst in hospital, before she was allowed home. Kez recalled the challenges that she faced upon her return home.
Things were not straight forward -I had no idea what was in store. My symptoms got worse. I was having seizures, paralysis and speech problems. So my mum called social services for help, and they arranged home care for me. After a while I went online to look up my condition and there was no support groups. I searched online, to see if there was anyone else experiencing the same kind of thing. I just wanted somewhere to go for information and to speak about stuff.
A couple of us got talking online, and decided that we needed a group that patients and their families can come talk and get the support they need. So we created our own group on Facebook – Functional Neurological Disorder. Since we set up the group, it has gone from strength to strength. We currently have over 3,000 members from several different countries. The NHS refers patients to our group now.
The FND charity FNDHope was formed from our group, and other support groups followed. Living with FND changes your life overnight. No longer was I the ‘on-the-go’ playful mum and wife, daughter, sister and auntie. My focus now is on positivity, hope and helping as many people as I can.
The group is holding it’s first ‘meet-and-greet’ event on Saturday 10th March at the Royal Hotel in Dysart, starting at 5pm. From 7pm, there will be a FND-friendly disco (e.g. no flashing lights!) as well as a raffle/tombola. Purple Caffe Fife will be showing up to lend our support to what should be a great event. You can let Kez and the team know if you will be coming along on the night, by clicking here.