I have a wife who is diagnosed with FND, it started a little over 5 years ago but was officially diagnosed with it about 2 years ago. We have been married for 6 years so this has been going on almost the whole time we have been married. We have a 6 year old boy and he symptoms started about 7 months after he was born. We thought his birth could have triggered something in her body/brain but the doctors could never correlate it to anything. So now over 5 years later we are still dealing with her having symptoms. We are all living with her parents in one house because it’s too hard for us to function with me working and trying to take care of both our young boy and her at the same time, I used to travel more for work but not quite as much anymore. I am really just looking for some support group as a family member dealing with all this, it has really taken a toll on me and I feel like life has almost stopped because of the FND. We try to do things when she is feeling ok but we never know when that might be so it’s hard to plan any kind of trips or outings. I work from home right now, but it’s very stressful on me knowing I have to provide and take care of our kid along with making sure my wife is ok on a day to day basis. My mother in law helps out a ton but she is older and obviously won’t be able to do what she does for us forever. It’s just a lot to overcome, I know people dealing with FND have a rough time and it’s all very frustrating but are there family members on here that can relate to what I am going through? I really don’t have anyone I can talk to about this stuff and I feel the family members of someone with FND get overlooked for their situation and mental well-being through all this, I know that’s how I feel.
Hoping to find support: I have a wife... - Functional Neurol...
Hoping to find support
Slugger82685,
First and foremost, I applaud you for your commitment to your family. FND is a family matter. Your position as the spouse and caretaker of a sufferer is not adequately addressed. Reaching out to others is a wise move.
I have FND. I know my husband struggles with my condition’s ever changing degree of functionality. It is difficult to plan anything.
I hope you find someone on this site who can directly relate to you in your role as the family member. Have you investigated sites that focus on family of those with chronic, life long maladies? It’s a thought.
HenriettaPoultryfoot
Thank you for the reply. I haven’t searched in depth for a site directly focuses on the family members, that’s a good idea that I will have to dig into. It’s really only the past year or so that has hit me hard with everything so I am still trying to navigate myself on where I can find that like minded support. I appreciate your thoughts and recommendation.
Hi, So sorry you're having a tough time.I think you're absolutely correct as I think we don't fully appreciate the impact that fn d has on partners and their carers .I think you need to talk to your wife and explain how you feel this is life changing for you both .They say acceptance is a key part of coping with the condition I think that applies to partners as well .I have fn d we are both in our seventies and I know things are tough for my wife.Please talk to someone your wife and little boy need your support but also somebody needs to be there for you.
Take care.
Thank you for the response. I know it is a delicate situation because I obviously see my wife struggling with FND on a daily basis which has caused her to basically give up doing most things she had previously enjoyed so I have a bit of a selfish/guilty mentality on my end because while it does take a toll on myself and other family members why should I have the right to have any frustrations or worn out sense about it when my wife is the one actually dealing with it in her body and brain so I try to keep it all to myself, does that make sense? I know that’s probably not the right thing to do but it’s basically what I have been doing.
Hi I am sorry to hear of the strain you are all under. I am Ill myself but was always very aware of my family & husband's feelings (ex now) and the sadness seeing me so sick had for them. I covered & hid things to protect them but it wore me down and despite my best efforts to stay working, studting travelling etc my husband admitted to me one day that he "felt like he was handing me a band aid while I was bleeding to death". He felt useless & that broke my heart. I was glad that he could be honest & tell me and even though we are no longer together I found that by checking in with him & how he felt was good for us both. The more honest he could be, the less I had to present too.. So even though I am Ill & not the family member maybe that helps. I was the daughter of a mum with ALS & a dad with cancer & it was heartbreaking, stressful and I felt guilty even admitting to being tired. I am Ireland & we don't even have support for people like me with FND, but perhaps thru here you might get to talk other peoples husband/partners & find some help. I feel for your stress & I hope you know that even though I am the "patient" I can still understand your stress and distress with it all.. Best wishes to you and your wife.
This was a great response, I appreciate it. I think you nailed it when you said you felt guilt about admitting have any kind of stress or tiredness from it all when you weren’t the one going through the issues your family members were dealing with first hand. That is basically my mentality right now and it’s hard to get a release of it all. I don’t want to pry too much but do you mind me asking if your FND was a big factor in you and your husband going separate ways? If you don’t want to answer I completely understand, I just know the FND for my wife has definitely had a big strain on our marriage as we were together for 5 years prior to getting married and didn’t haven’t to navigate through the FND at that time then once we got married it’s basically all we have known.
Hi, I am glad my experiences helped a bit... No, my ex husband & I separated a long time ago. He would not even know about what I have been through in the last number of years (Cardiac/FND etc) as he lives abroad & we no longer have contact. I just thought that it might help to explain that in my experience we all carry guilt. I was always feeling guilty for being sick, so I worked harder, filled my life & gave my all to everyone & very little to myself even though I was sick..... And that was not good either. I think that just even acknowledging here that you are stressed is a big step. Maybe you & your little boy can take a hour or two a week to do something fun (movie, ball game, park, zoo) it would help you both & add to the normal father son bonding. It would also allow for some normality. Its just an idea but sometimes kids have a way of bringing out the fun! My little nephew always teased me that I looked tired so I should get coffee (of course he just wanted his hot chocolate & muffin, but I fell for it every time!! )....It would also give your wife time to rest, read, etc and not be worried about showing her suffering... I hope you don't feel I am overstepping, I just know what helped me as a patient (39 years & counting) & as a daughter. I wish you and your family the best...
Hi. I totally understand where you are coming from watching your wife struggling on a daily basis is tough in itself.Don't beat yourself up what your feeling is not uncommon.On the other side of the coin as a fn d sufferer myself I too feel guilty some days ,thinking I am a burden and having to rely on other people.I'm sure your wife will understand if you confide in her .I know everything is easier said than done but to be honest I think you could do with some support as well.
Best wishes.
Hi, I think it is a universal problem that a partner not having FND can never fully understand what an FND sufferer is going through (us FND Sufferers cannot fully understand why sometimes everything is one way, then the next second totally different) and that is why it makes it so difficult to communicate needs and feelings for both sufferer and carer.
Yes, it is very possible that the pregnancy caused a hormone upset and that your wife's brain accepted this abnormal chemical balance as `normal'. But ultimately, even if you undergo all the FND Therapies out there (which I have) you end up effectively being told to self-manage your condition, try not to overthink the symptoms and crucially to pace yourself!
I found that identifying the trigger activities or environments that made FND worse was helpful, then slowing down to allow my brain to catch-up and process information both mentally and physically helped even more - finally when it came to needing help with things I now have it down to a fine art. I ask for specific tasks to be done by family, they know what is being asked, they feel happy about helping and I get the task done... win, win situation!
Feeling a burden, guilt and generally pathetic is the most soul destroying aspect for me with Motor FND and the only way to overcome that is to accept that I have limitations. Yes, I do list tasks that need doing, so sort of plan, but I accept that it may not happen in the normal timescale. Just as I try and split up tasks so I do not have to do too much physical or mental stressing tasks on the same day, every other day or every other week- there is no rush.
Pacing and `going with the flow' will achieve something.
There is that saying "Life is not a sprint, it is a marathon" and particularly applies to when you are needing to meet people or go out somewhere, go at your own comfortable pace, do not feel pressured by other people (allow more time than you think to get there) -they can wait!
It is massively important for you and your wife, child to find a leisure activity that both is easy to do together, improve communication and all find positively uplifting.
- If your wife has physical challenges, try boardgames or art, quizzes?
- If it is more the brain struggling to get words out then maybe trying singing or humming tunes that might improve things?
- If it is more de-stressing, then many find audio guided meditation short sessions useful, you can download a lot free.
- If your wife used to be more sporty, look for something simple like darts, hoopla (you can make up your own hoopla with household objects and rings are really cheap to buy) or other gentle sports at first and see how you get on?
Ideally find a leisure activity or something family fun that can be done on a regular basis and this will help the brain get into that `activity mode', do not stress if the activity fails, try another time or try something else till you find the right thing.
For example I find creative stuff like artwork very relaxing -do themed decorations for birthday/holidays for my family to come over and enjoy- it even calms my breathing so I class it as my form of meditation; rather than trying actual meditation (which I find too boring!)
Life is too short to worry about what you cannot control, just do your best and you will have done your best each day.
Look for the calm in the Storm!
p.s There is a whole Carer section on the FND Hope website that maybe of support to you?
And general FND you can get a lot of information from this website neurosymptoms.org/en_GB/
Look for the calm in the Storm!
Sorry I know it’s the pits never knowing when she’s not going to feel well and hardly ever feeling well. I had my first seizure 10/11/20 so it’s been a year but I’ve had symptoms 4 years prior. On neurosymptoms.org I have all but dizziness. That’s a great site and helped me start doing my own therapy and recovery at home and as a result I have improved but then I got covid and regressed. You are to be so commended for being a caring suppportive partner father and caretaker. “Caretakers distress” is a real thing, I would look that up and get yourself some support, your own professional you can see and talk to as an outlet and sounding board. It’s good for everybody, you taking a little time for yourself, because burnout city is something I’m sure we as caregivers have all felt. Take good care of Yourself my friend
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