Want to find a support group

[Thequeenvix75]

I got diagnosed with FND in early May after developing stroke like symptoms on my left side of body which was my prominent side middle of February at the end of April my speech went awry where I couldn’t get words out or even think what words I was needing to say confusion then I had a mental health breakdown ending up at an in patient hospital for 4wks I’m struggling so much with every day life and would like to find other sufferers for support in Stockton On Tees in the uk if anyone knows of any I’d really appreciate you letting me know

[Bluecat99]

Hi, I'm afraid I'm based in the Southwest, but I was wondering if you had heard of FND Dimensions? They have a long file which records the location of willing FND sufferers, and are trying to link people up to form support groups across the country. There is also a group called FND FrieNDs, although they are primarily focusing on the Southwest.

Another way to find fellow sufferers is to join the facebook groups of FND action, FND Dimensions, FND FrieNDs and FND Hope UK to name but a few. If you need addresses, let me know!

I hope you find someone to share your experiences with.

[Thequeenvix75 in reply to Bluecat99]

Thanks for responding I’ll have a look for those I’m just wanting to find out more about it and if anyone has recovered from it and if so how long did it take I’m getting told different things from everyone and it’s so frustrating 😏

[Bluecat99 in reply to Thequeenvix75]

My understanding of the condition is that the brain signalling isn't working properly, and that is why there is such variability between people. Some people do manage to enter 'remission', although whether people truely ever recover is in some debate. I have had my symptoms for about 2yrs now, some have got better, some haven't.

Lots of different people have many different experiences and so, without any true consensus, it is very hard to understand what is going on. However, talking to people, learnign form the experience of others really does make it easier to cope with whatever FND throws at us.

[tatiyana in reply to Bluecat99]

Hi you say south west? is that UK?

[Thequeenvix75]

Thanks I’ve been told different things about whether I’ll recover properly or not. I’ve recently started to have cognitive analytic therapy which is what I’ve been advised to have to help me with the mental health issues that I’ve had since May. I’m just wondering what other people do and if it’s possible to recover properly or not as I’m really struggling and not sure how much longer I can live like this for as it’s affecting every part of my life and relationships with my family and friends

[Bluecat99 in reply to Thequeenvix75]

Things that have really helped me include playing the piano (it stopped my tremor whilst I was playing, and I think is instrumental in stopping my tremor altogether), typing and other fine motor skills (these have all helped reduce / stop my tremor). I had an operation to correct the dystonia on my foot; this has partly worked in that there is little to stop me from walking again, except that I have no stamina and the fatigue kicks the tenor off again.

I am getting physio from community physios, who come to the house and help me with the obstacles that gives me. I am mostly living in two rooms, so the odd occasions that I can get into the kitchen make a huge difference.

Fnd has hit every aspect of my life, changing my relationship with my husband and children, altering how I parent and how I see my role within the family / community. It had taken a long time to come to terms with it (it is a form of grieving, having lost what I thought was my way of life),. However, I am now finding a new path, a new way of parenting and a new role within the community (I can no longer work, but am setting up a charity for fnd sufferers and their families). Don't be afraid to grieve, but equally don't let it take over. Life has changed, but there will a different path to tread.

Life will be hard, but don't stop talking about it. If there is anything I can do, let me know. If you have any questions, shout. If I can help I will. I think the thing that helped me most was helping others again, as it then helped me think about my situation without too much trouble.

[Steeler1969 in reply to Thequeenvix75]

Hey there. I was recently diagonosed with FND. Specifically I have Functional Cognitive Disorder - memory, processing etc.... . Our stories sound similar for sure. I had an accident 3 years ago and only recently - 2 weeks - was diagnosed. My world is falling apart or so it seems. My family is carrying the load and it is taking a toll. I was told full recovery was very unlikely and that my road to recovery - whatever that might be - is going to be long. I would be interested in sharing and learning for each other if that works for you. All the best.

[Thequeenvix75 in reply to Steeler1969]

Thanks for reaching out to me I’m sorry that you’re going through this awful nightmare as well it changes everything in your life and not for the better either my 21yr old son has moved out due to how this has changed me and my mental health problems have contributed to it as well since I started getting assessed for psychotherapy I’ve definitely noticed a decline in my health both the physical and mental health and he couldn’t deal with it as he’s suffered mental health problems recently and felt like he was getting dragged back down into the black hole with me we’re still very close and I know he’s still there for support and to be honest with you I don’t blame him for needing his own space I wouldn’t want to live with me at the moment either It would be great if we could help each other through this. Whereabouts are you based?

[Steeler1969 in reply to Thequeenvix75]

Good Morning - sorry to hear about your son. My hope would be that he needs time to come to grips with what's going on with you. Trust me relationships will get strained and love will be tested. I received a very good, no great piece of advice recently. I was told to think in terms of small victories as a way to push my recovery. While I'm not there 100% yet in terms of the thought process it has helped. If this is something you can do I suggest you try it. I found it has worked with improving my overall mental health as well as physical health. It's still not easy but it's a positive angle I'm gonna go with until something better might come up. As we say in my neck of the woods - keep your head up and stick on the ice!

Btw - I live in eastern Canada - a province called Nova Scotia. What about you?

[Thequeenvix75 in reply to Steeler1969]

Luckily I get several phone calls every day and he comes to see me about twice a week and this morning with the couple of inches of snow we’ve got he’s been and got me some shopping since I can’t risk going out in case I have a fall as I’ve got no chance of being able to get back up so I’m in a forced hibernation until it clears completely

I’m living in Stockton On Tees in the uk x