FND

This is a hard one to write.

I have a problem with my breathing, having had scan after scan and test after test today I realised that it is more than likely a symptom of my FND.

This time last year I had never heard of FND, but now after my experience of loosing the use of my arm leg and speech for approx 10 days I have read quite a bit about it.

FND ( Functional Neurological Disorder) is still an unknown condition, sadly many GP’s do not have the knowledge or training to fully appreciate the disorder.

If I go to the Dr say with constant headaches, the Dr eventually sends me for an MRI, the MRI comes back normal, the Dr then concludes it is migraine. Does the Dr tell you that because all the tests were normal you are imagining it? The symptoms are in your head? One would hope not, but tragically many patients who have FND are still told that .

09F71DB0-E916-4538-8C53-F7AF03404FC5.jpegFND is slowly being more recognized, historically thought to be bought on by past trauma or recent trauma the symptoms are vast, worse case scenario, a sufferer looses the use of his arms legs or speech, tremors occur, tics, short temper , sleep disturbances, abnormal breathing, loss of muscle coordination, attacks of abnormal movement, loss of vision … the list goes on.

There are some illness’s that it’s accepted, probably even expected a patient will suffer from depression, for example a patient with multiple sclerosis may fear the future the uncertainty of not knowing how the illness will affect them as time goes by, but with FND there is a reluctance to talk about the depression or anxiety it can bring, along with the very real symptoms.

A person may be worried people will think it’s imagined, that they choose to be experiencing these symptoms that if they would just get over it they would be fine. The stigma of FND is akin to the stigma of mental health issues.

0D83F27C-F24E-4198-BABC-22DCFF3AF0E4.jpegFND is real. It is a neurological disorder that no one chooses to have .

It is not “in our heads”

It is not “ in our ability to get over it”

It affects people’s lives daily.

 

Knowing I have FND, has given me to some extent comfort, when my face twitches due to my breathing issues I know this is not “my fault”, putting a label on something can sometimes be a positive.

FND research and dr’s in general being given more specialized training is progressing, but there is a long way to go.

I am afraid of FND as it is so unknown, Every time I feel weakness in my arms and legs I ask myself is this FND and am I going to end up back in hospital unable to speak or move.

 

I would love your thoughts if you suffer from FND.

Lots of love

sara

A Sudden full stop.

So there I was, sitting at my desk, comparing weekend notes with my college, usual chit chat, usual tutting about the filth on the floor, usual conversation about ” oh my isn’t it hot” and ” how long will it last, oh really another week at least, goodness me, and we are stuck here in the office ” kind of conversations when, everything came to a sudden and abrupt full stop.

My arm, which had till then been doing its thing, sitting quietly on my left side awaiting instruction started to ache, and when I say ache I mean, an incredible, all consuming, heavy pain, I began to feel overwhelmingly exhausted, dizzy and sick. Within 10 minutes I was on an ambulance, the lovely paramedic informing me, in a way that only someone who has delivered life changing news ( not happy news!) can that I was having a stroke.

I will never forget that ride to the hospital, the ambulance going so fast I thought I was going to fly out of it, the blue call he sent through to the hospital, meaning that when we arrived there was a team of Dr’s and nurses ready to greet me,  the pure terror I fel is hard to describe.

I have been lucky, this was caught so fast, on Monday I could not move my arm, could hardly speak, and could not move my leg at all, and now miraculously only 3 days on, my arm, although I have some weakness is pretty much doing its thing again, my leg on the other hand not so much, I have managed to do a kind of shuffle, shlep the leg dance, and get to the door of the ward and back, but it feels as though I have just climbed Everest and ran back down again, without stopping for breath, my speech is also getting there, I now sound like I have had only 10 or so teeth taken out instead of a mouthful, when i try to talk for to long it gets worse and every syllable is an effort, and it is my speech that is scaring me the most, as, if you know me personally, you will know I like to talk!! Speaking leaves me exhausted, and frustrated.

Lying in the ward I have had a lot of thinking time, when I picked up my Siddur ( prayer book)  this morning and I said the blessing “Blessed are you … who firms mans footsteps” I realised in all my 41 years I had never stopped to consider what that actually means!! Go ahead and try something now, lift up your leg.. done? how long did that take you? did you have to concentrate on sending messages to your leg, or did it just happen, now imagine I say lift up your leg, and as you go to do it nothing happens, not a twitch, your leg just stays as it is, you are now starting to strain, shouting at your leg to move… but nope, nothing, nada, zilch, it lies there, mockng you, refusing to move. For the first time in my life I appreciate my leg. I appreciate how incredable our bodies are.

When I open my mouth to talk and even though the words are tumbling through my brain, it is an extreme effort to say the word, I am appreciating the ability God has given us to form words and say them, we would live in a very angry world if it took everyone the amount of time it takes me to say a word.

Speech, what an incredible gift, what an amazing way of letting others know our needs and wants. Interestingly enough my husbands name is one of the hardest things I am finding  to pronounce.

I have learnt so much in the past few days.

1. It can happen! we smoke, over-eat, never excercise and say “na it wont happen to me” but it can and it will, and yup I am going to preach, take care of your body, it is so precious.

2, Every word that comes out of your mouth is a gift, use that gift wisely.

3. Think about where your feet are taking you, we are on earth to please God with our actions, but also God wants us to have a pleasurable life, use your legs to take you places and to do things that both you and God will find pleasure with.

4. In the last few months my extended family have seen over and over the kindness of community, I am experiencing that now, with messages, words of support, calls and texts and offers to help coming in to all my family and friends from everywhere, and I  am so touched and blessed to be a part of a wonderful community.

5. Questions, basically all I have to say is “shhhhhh” if you are not asking the question out of pure, unadulterated care, not just because you want to tell your neighbour or local friendly baker just how much you know don’t ask!!

6. Hospital beds …. SUCK!!

Night night, God bless, stay healthy.

Sara

 

 

 

 

 

 

MY FATHER, MY TEACHER

It is coming up to 10 years since my father left us, after a long, difficult battle.

Approximately 7 years before his death he suffered a massive brain haemorrhage leading to him becoming paralysed on one side of his body, he speech was affected as was his brain, he struggled to walk and often would get frustrated after taking a few steps. Before his haemorrhage my father was a teacher, a public speaker and well-known in our community and beyond. He was head of Jewish Studies at the school I went to and was much-loved by his students.

After suffering the haemorrhage he became almost “child like” in some ways, he would easily cry, his concentration levels plummeted and he would become angry and frustrated easily. Yet even after his stroke his belief in God never failed, I remember him saying that everything God does he does with kindess, my father may have lost the use of his arms and partly of his legs, but to my father as a teacher, communication was everything and he thanked God for lettig him keep his speech.

My Mother is a strong power house, she dedicated all those years solely to my father, there were times he would direct his frustration at her, which is natural as she was the closest one to him.  She would be the one to pick up the pieces when his carer did not arrive in the morning to wash my father, or in the evening to ready him for bed, she could not just decide to go out, she carefully had to arranged her life around my fathers needs, which were immense.

Often Brain Haemorrhage is confused with a stroke but there are differences, A stroke happens when there is some disruption in the level of blood that goes to a person’s brain, causing the brain to be starved of oxygen and nutrients, as a result the cells in the brain die. Haemorrhage happens when an artery in the brain bursts causing internal bleeding as a result of this the brain cells cease to function.

Both though have similarities, they both happen very quickly with little warning,  sharp headache will come on abruptly, a sensation of numbness or tingling on only one side of the body will happen during a stroke, whilst a haemorrhage will have feelings on numbness in one or both of the arms and legs, both will have feelings of weakness in the arms or legs, memory loss, vision loss, confusion, feeling dizzy and nauseous and more.

High blood pressure, smoking, family history and age are all factors that could lead to both haemorrhage and stroke.

I have heard that after we lose someone dear to us, the persons voice is the first thing that starts to fade from our memory, thankfully my father’s voice is still clear to me.

My family life changed after my father’s illness, some of  my siblings living abroad returned to England. My Mothers home became a hub of carers, occupational therapists, and adapting of the bathrooms and bedroom to accommodate my fathers needs.

My father taught me, both in the physical sense and the emotional/spiritual sense, he taught me patience, he taught me how to care, he taught me love.  When I look back to my childhood, the family holidays we had are the memories that I treasure, he was a strong tall man, whom during the year worked so hard, our holidays were his escape, the place he could completely unwind, I remember so clearly his joy at pulling us kids along in the rubber dingy in the sea, every single holiday pronouncing that next year he would be buying a “real” boat. Yet even during those holidays we would inevitably meet people who would be delighted to meet him.

In Judaism, after a family member passes away we sit “shiva”, this is a mourning period of 7 days where people come to the house to pay their condolences, share stories, laugh and cry, it is an amazing process which can bring a lot of healing, during the week of Shiva, we learnt so much about my father, pupils whom he had taught many years ago came and shared with us stories of how my father changed their lives for the better, he had a knack at figuring just how to relate to his students, whom he fondly called “ladies”.

My family all knew how dedicated he was as a teacher, but we, in that week saw him through the eyes of those he had helped, I have in my home a folder with over 100 letters we received from friends and past pupils full of antidotes about him.

He was a man able to connect to anyone, no matter who they were and what age. He was a leader in our synagogue, so much so that on one of the Jewish holidays, the whole synagogue danced around his wheelchair as he was pushed all the way home.

I know, that when I tell people who my father was, they will light up as they talk about him. He was more than a man, more then a father, more than a teacher.

After his Haemorrhage I tried to spend time reading to him, though the experience was heart breaking each time, knowing I was reading to the man who was a giant I gained so much from it, and I will never forget the time we spent together.

If you are still lucky enough to have a father, treasure, respect and love him.

 

Blog at WordPress.com.

Up ↑

%d bloggers like this: