How to help my son

[Katie68]

My son is 28 and was diagnosed with FND 2 years ago he is really struggling and could do with some advice on how to help him he doesn’t get much support from his neuro team

[Mat08]

Katie am sorry I feel the next thing will be words like untreatable and optimistic well my backside to the neuro docs my condition gets so bad I have been using a push chair a wheel chair with a seat on buddy buggy I have hated it but don't need it so much now and I have fund with me sleeping in a controlled cooler temperature has helped my seizures ease at night l glutamine, lectin, pectin, they are all at the herbal stores femaglobin liquid and concentrated b12 liquid please understand over the past 6 yrs I have lost my business, wife (she even took my cat lol) my own children haven't been able to cope seeing me but please get the proteins going look them up and please consider checking out the cbd oil spray or tracking down some thc because there are things out there and private dance lessons help me so much I hope I have been of help to you my biggest respect mat

[Katie68 in reply to Mat08]

Thanks so much Matt so sorry you have lost so much that’s so not fair no one asks to be ill or ignored it’s appalling I’m always here if you need to chat will definitely follow up with some of your suggestions thank you other people in the community have also suggested the same just want to be able to support jay best wishes are sent your way stay strong

[tabey]

Dear katie68 and Son

Its great to meet you, also really sorry to hear your son has FND too.

My advice would be try not let FND rule your life limit it down to chunks dont try to figure it out and never try to be what you once was or your just loose youself in a maze of qustions. break you time into small chunks. i set myself mini goals if i achive them i feel great if i dont there is always tomorrow. Don't try and push your body to the maximum as this really doesn't help.

[Katie68 in reply to tabey]

Thanks tabey that’s good advice I think we are all at the stage of real

acceptance I witnessed jays seizures for the first time and I found it hard I also have an 8 year old that I am trying to explain it to without scaring her it’s a learning curve for us all but thanks for replying means alot

[Rambo51]

Hello katie

I have had the same symptoms for 7 years and have gone through 7 specialist who carry out treatment but end up becoming worse,

I am using a techniqie called ego state therapy which is structural dissociation.

To map out the parts pf the emotion then add to them reduces the sezuire response

My doctor is amazed with my progress and encouraging me to continue when other professionals gave up.

Fnd is an emotional disordrr with many emotional parts

[Katie68 in reply to Rambo51]

Currently jay isn’t receiving any help or treatment and his hospital just don’t seem interested just gets told to go back to his GP and be re referred absolutel joke am grateful for all the advice I have received from people many thanks

[pickleweed]

I recommend that your son read or listen to the book Functional Neurologic Disorders, volume 139 of the Handbook of Clinical Neurology.

FND is an emotional disorder for some FND patients but not for all FND patients.

There's a book called something like "Taking Charge of your Seizures: Workbook" that I read the "Look Inside" for on Amazon.com. Something I read in the "Look Inside" part pissed me off because it implied that people with FND have it because they don't want to work or because they want people to take care of them. Anyways, getting pissed off has lessened my FND symptoms; I don't know if the effect will be lasting, though.

[Katie68 in reply to pickleweed]

Thanks for the advice much appreciated it’s good to talk to different people and get a different perspective thank you