The Journey of 17 + years with FND

[cathys20]

Hi To All, I have been reading quite a few posts about just getting diagnosed or struggling to live with FND, or does it get better or worse. I think some said it is different for different people.

My symptoms came on strong and all at once. I had had a brain surgery, followed by a very severe spinal fluid leak. I believe my brain damage occurred during that time.

I do not have a FND diagnosis. I have a neurologic Movement disorder. But I have what most of you on this board have in one way shape or another.

My condition is severe. The first two years, as many have read, I was totally chair bound. Unable to talk, seizure activity with dystonic fits for up to 12-18 hours a day. Face totally pulled to the right. Eyes clamped shut both at times, but always the right. Mouth and neck always pulled hard to right and spasmed. Looking more like a stroke victim than anything else. I saw pity on everyones face who say me, and I can honestly say that was the hardest part. People I knew did not try to talk to me, they simply did not know what to say. Each day was like having the worse flu you can imagine, sleeping most of the time, migraine, unable to tolerate lights or noise. Oh it was a hoot for sure. After two years and numerous Dr.s that did much more harm than good, I finally had a breakthrough from my internist who started me on Tegretol an anti-seizure drug. The lights flickered, as each dose increased I became stronger. Still unable to walk, they tried baclofen, it took the pain away, and I was able to walk again. Such a PRAISE>

With all that said my movement disorder, has worsened over the years, tremors came later, and when episodes breath through, I may be locked in my body for up to 20 hours and sleeping the rest of the time.

My bladder and bowels are both involved. I live each day as it comes. Last week I was back 18 years ago, unable to even get off the chair and into the wheel chair to go to the bathroom without my husband. So weak to stand for a moment was not possible. Falling a sleep while feeding myself. So for me life was on hiatis for a week. Yesterday, my strength returned and so did I. Attended my church, took friends for lunch, worked a senior ministry and visited residents of our local nursing home. It was a good day. But then when I got home fatigued and worn out again I was back in the chair and praising my Lord a very helpful husband.

We say I am like a battery on good days, I am re-charged in the morning and run down, depleted, or empty by evening. But wherever I am and whatever my day, I Praise the Lord for all that I CAN DO, not what I can;t. The old me of 18 years ago is gone, but this new me has had so many opportunities to share, comfort and encourage because of my illness, that I don't know if I would go back if I could. This is who I am now, and I feel Blessed. Hope this might help or encourage others just starting this journey or wondering where theirs may lead. As always, God Bless each of you, Love in Him, Cathy

[andyglasgow2016]

This may seem weird to say but please don't take it the wrong way..

But it's encouraging to know there are other Christians facing this. I had my FND from a car accident. And your movement issues from surgery.. So to suggest like some do that it's a random thing , is not true.

I'm encouraged immensely to know we can carry on trusting and praising God even on the days on being dragged through the valley face down bashing our faces off the rocks! But we know it's those times we rely even more and can trust him.

Even if I don't make a full recovery, I know it's temporary in this body

B blessed

Andy

[cathys20 in reply to andyglasgow2016]

Hi Andy, Thank you for writing. We are taught that we will not escape trials, but trials and suffering help us to rely more on God than on ourselves. I also firmly believe it helps us to suffer with others who are suffering and thus build them up in the hope that we have in the fact that this is not all there is. I was encouraged by your post also. I'm glad you wrote. After the first two years of this unable to move or speak they started me on an anti-seizure drug called Tegretol. I cannot tell you it was like from lights out to lights on within days. I could not begin to tell you all the prayers and miracles that took place to bring all that about and all that I have seen before or since. I say there are no coincidences in this life only God Incidences. I have been very blessed and I want others to know the richness of His blessings as well. God Bless and pray this day is a pain free day for you and all the others on this board. In Christ, Cathy