Wife has FND.... Looking for caregiver support

[Ajohn]

Hello all. Firstly, I want anyone who reads this post and is suffering from FND to know that you have my most sincere empathy and understanding.

My wife has been ill for approximately 7 years, but the FND only started in July of 2014. She has had a number of unfortunate illnesses that were finally becoming resolved and then this began. I have been her caretaker for a large portion of those 7 years as she has had times where she was not completely capable herself. She had to quit working completely about 3 years ago which has been a huge financial burden also. I love my wife dearly and will do anything to help her.

Her FND has manifested as garbled speech and involuntary mouth and tongue movements. She also has periods of profound confusion, dizziness, and balance issues. At times she becomes so confused she is nonfunctional. At other times she is highly functional and has virtually no symptoms.

I am scared to death she might have a severe bout of confusion while out and alone. I have to work to support us, and neither of us have any family. If I do not work to stay home with her, I do not get paid. We are both more or less orphaned only children. So we have no family support. We have talked about many scenarios and tried to best prepare her as possible. I can track her cell phone etcetera but that requires she has it with her. I just know though that it's possible she could find herself in a bad situation and alone and confused. No one would understand her speech and confuse her for someone crazy or drunk or on drugs and treat her badly or worse. I am very scared for her and us.

My wife is the most intelligent, kind, generous woman I've ever known. This is so unfair, so terribly horrible for her and anyone else suffering from this. I am a cancer survivor. I would gladly go through that again 10 times if it would fix this for her. I'm sorry for rambling. I guess I just need to get it out. Thanks for reading.

[kotovasv]

I am sorry about your wife's problems, but glad she has such a caring husband as you. When I was in the beginning of my journey with the illness, I had attacks of severe weakness and episodes of near-fainting. I had a note in my pocket with my husband's number and also taught our little daughter to tell people to call him or 911 if anything happened to me. I think, you can order a medical bracelet for your wife, containing the information on her diagnosis and what to do if she is feeling bad. I also recommend you to visit the fndhope.org website and have a look at the facebook page for caregivers of FND sufferers. I am sure you will find a lot of good advice from the fellow caregivers. Good luck. Svetlana.

[harley2010]

The caregivers section of the fndhope facebook page is wonderful, you will find some very supportive and understanding people there. Look forward to meeting you there.

[EnglishIslander FND Hope Volunteer]

Firstly, I'm sorry to hear you are both in this position. All too many of us travel this route.

As Svetlana advises, I'd suggest your wife carry an Alert Bracelet, along with a written summary of her condition and even recommendations of what to do. If she has advanced warning (a "tell") of oncoming symptoms she can sit down and get this out ready. If not, then carry it in her purse.

I'm assuming you live in the US or somewhere other than the UK, so cannot advise on financial support available.

If she and you would like further support I'd suggest going to FNDHope.org and clicking on the Facebook Group Join button. There both you and she can be supported by many, many others often in similar locations around the world. There is a specific Carer group also so you can get support from others in your position.

Best wishes to you both.

Duncan

[cathys20]

Hi, my name is Cathy. I am so very sorry to hear about your wife, and very touched to hear how much you love her all at the same time. I became ill in 1997, after a brain surgery complication. That's when my life changed and never want back to normal. I too have a very very supportive husband who cares for me and loves me very much. Your wife and I are very blessed. Many times this illness is much too much for family. Your letter extremely blessed me today. You said in your post that your wife had been battling health issues prior to the onset of fnd. Can you tell me a little more about that. I am one that tends to believe there is always a reason or event shortly before onset. I have been diagnosed with dystonia, and possible fnd symptoms. They usually throw everything to my dystonia, but last October after being very ill I developed left side paralysis and they thought possible fnd type symptoms, although this has not been mentioned again since. I do know I have what everyone else on this board has. We do not have everything the same, but enough things that we are conjoined in one way or the other. Our brains are misfiring, why or what caused each of us to have this happen I can only pray someday they will find out, when they do, that is when we might truly get help from it. I am not always symptomatic, I am controlled much of the time with parkinsons drugs and anti-seizure drugs. Recently, after a period of 4-5 months of fairly good health, only break through symptoms, I have gotten very ill again. You also mentioned your wife has garbled speech and tongue involvement, has she been examined for dystonia? I have dysphonic dystonia, abductor type. Often my tongue is to the side and my speech is not understandable or breathy. For the first two years "97 and "98 of my dystonia diagnosis, I was unable to speak hardly at all. Mouth was pulled to hard to the right, as well as the tongue, and then if I could speak it was in a hush whisper. I was finally diagnosed with the dystonia, I received botox, and put on the first of my anti-seizure medications. Are you in the states? Please write back when able, we are all here to support each other. Any questions, fire away. Hopefully just knowing there are so many of us brings you comfort in some way. I remember when I first heard there were others like me, I thought such relief, just knowing that others could encourage and support each other. I do want to add, that I believe fnd is a yet undiagnosed disorder of the brain. I also firmly believe that their is a predecessor and possible genetic implication that makes those of us that have this to be more likely that it will manifest at some point in our life. Before my brain surgery for left vestibular nerve disease followed by a spinal fluid leak I was absolutely health wise strong and completely normal like everyone else.. I worked 5 days a week at my own cleaning business. I have heard so many of us say we want our lives back, I so remember saying that same thing, thing is, this is now our life, it is what we make out of it that defines who we are, not the fnd. God Bless, holding you in prayer this day with your wife, Cathy

[skifast]

Hello sir my name is Nicyou both are going through. My wife is my caregiver. I have had FND for 6yrs just got diagnosed on Jan. 7th.I understand what you both aare going through. Prayers are with you .

[piggy0704]

Have you thought about applying for PIP? the everyday allowance is not much but can help to pay for someone to support your wife during a 'relapse' I know thats not the right expression but its the best one I can think of! I know in our area we have a website called streetlife, a community only website, its where you can post all sorts of things, but you could ask for a companion for your wife on days she is bad, a sort of when you need it friend? I know in my area this has been hugely successfully and people know about my condition now when I am out and about and the fact that it fluctuated so greatly.