Tips for coping with FND

Hi. My Mam has been diagoosed with functional and dissociative neurological dissorders. She has Epilepsy, fibromyalgia and mild osteoporosis also. She is quite afraid of this FND. She gets stroke like symptoms, such as slurred speech, shakes/jerking like movements, her ankles turn in and she can't walk, she gets very dizzy and because of this her body has gone into seizures also. She's afraid to go outside incase she falls, and because she is embarrassed. She finds it very hard not to focus on this illness. And can feel it "coming on" and she's terrified of it. She can't distract herself, and she has become quite negative and depressed. She is waiting to see a psychiatrist and physiotherapist, but if you, like me are in Ireland, you'll know the wait for these appointments can take A VERY long time! Could anyone give me any tips or tricks to try get her out of bed and doing little things and taking little steps? Her sleep pattern is also messed up because of this. Thanks in advance! :)

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  • Good Morning, At least its morning here in the states. Welcome to the board. It sounds like your mom is going through a rough time right now, and she is very blessed that you are there beside her. Remind her that you are there, and that you need her and love her. She does not need to feel embarrassed she knows whats going on, if people care they will ask and if not I guess it is their misfortune. Please tell your mom as bad as it is right now there is help. And things may get much better, or they may get worse. The most important thing we can do is to be the best we are where we are. I too feel when symptoms are coming on. I know then is the time to sit or lie down. I was much worse than your mom honey. And I remember one day I wanted to just stay in bed and say no more, I give up. But my husband came into the room, he said I can handle this illness, I love you with it or with out, but I cannot handle you lying in that bed and not fighting to be the best you can be. I got out of bed. That was about 18 years ago. My story in on here if you would like to look it up. Now it affects my whole autonomic system. My stomach tolerates almost no food, I have lost over 35 pounds in the last 6 months. I vomit more than once almost every day. Most days I cannot speak, and walking is difficult, my face is in constant contracture to the right. But I am doing well, I am happy, I do what i can on every day, and on the days I can't I can pray for someone less fortunate and friends that are not well. This life is a blessing, with health and with trials, it is what we make out of it. I pray your mama will rise up to making the most out of it for you and those who love her, she is very very blessed. God Bless, Cathy

  • Thank you Cathy for your response! I'm so sorry to hear that!! I'll try these! Thank you!! :)

  • There are some great healthy living tips on the FNDHOPE.ORG website.

    fndhope.org/living-fnd/heal...

    My prayers and thoughts to you and your mom, it can be very scary when first diagnosed. One of the biggest helps for me was learning how to do mindfulness. The relaxation techniques help change the chemistry in the brain and reduce pain and anxiety - I cannot tell you how much I have needed that skill set over the years. There are tips on the website too for caregivers. It will help keep you strong.

    Lauren

  • Thank you for the help Lauren! Im going to check that out now. Thanks :)

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