RE: What or who inspires you when you have FND?

Hi everyone!

Many of you may have read my previous posts as my wife Kim has FND.

We've just watched a film starring Malcolm McDowell called ' The Raging Moon' and also stars Nanette Newman and it's about a young fit man enjoying life when he suddenly collapses after his brothers wedding and has an incurable illness that puts him into a wheelchair.

He has to go into this residential home where he rebels against staff and this is due to his frustrations with the illness.

He meets fellow patient Nannette Newman and they both fall in love and draw inspiration from each other.

We managed to recently find it on blu ray and it was by pure chance because it was in this little corner on the shelf.

I write chance but I do sometimes wander if certain powers are at work and it was meant to be to find and watch this film as an inspiration.

My question to you all is what things do you draw your inspiration from in life now that things have changed?

Being a romantic I tend to watch films which have a lot of meaning to them and I try to draw inspiration from them.

Although I'm a Carer and work part time, my wife is my inspiration every day and you people inspire me too because I have such respect and appreciation.

My wife is due to have an interview in a weeks time to volunteer at her Hospital but with this FND being so unpredictable and it causes her drop attacks in her legs it's making her have doubts as she will feel vulnerable but she doesn't want this FND to limit her for all her life.

In all honesty I myself feel anxious for her but I'm also encouraging her but as I won't be there I will be a bit apprehensive as I always am with her until I go to work as a rule and even then I phone her.

One more thing for you all.

When my wife's symptoms come on such as Spasms in her legs or arms etc, I massage them and they ease up.

A Paramedic once told me that my wife's brain signals are recognizing a new set of signals from my body and it eases her spasms up and relaxes her body.

I can put my hand over her eyes and they will ease up and I would like to know if any of you who are fortunate enough to have a partner, wife or husband and have they tried the same thing as myself and if not then maybe they could try it.

Best Wishes!

Tony & Kim

7 Replies

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  • Nothing is by chance every thing happened for a reason as a medium myself I believe in signs , I inspiration is my kids I'm all they have left so without me they will have no one so for me I need to be as well as I can for them and it has been so hard for them in the past few years so I fight and I fight hard to get well even when there have been days I just want to give up it is my kids that keep me fighting they are my inspiration .. and with the help and love from my angels and guides I will keep taking one day at a time 🙏💖💟👼😇

  • Hi, I was recently in a similar situation to your wife, Kim. I have had my job for 21 years and got struck with FND in July. It was so severe and utterly alarming that I went to A&E (not that they could help) and ended up taking 9 weeks off work. After the second sick note was issued I was adamant to return to work (money pressures too) and like Kim had no idea what it would be like. I was fearful I wouldn't last and approached it in the end with the attitude that all I could do was throw myself in and do my best and see what happens. If I can't cope then so be it but I wanted to do it and prove to myself I could do it - if that was the case. The was a big if hanging over me. What I'm trying to say is that fear mustn't stop us trying. I have been back at work two whole weeks now and it's going well although I am beset with symptoms but the one that put me out of work (burning in my fingers for hours on end) has thankfully gone. Going back to work has done me the world of good, mentally (and financially!) In the end I had no expectations and I told people all I could do was go back and 'see what happens'. Kim mustn't put herself under pressure but be proud of her determination and brave approach. Good for her. If it doesn't work out this time then she will succeed the next. I make sure I go to bed at a good time as the day leaves me exhausted. Being back at work motivates me, my children too and my love of life. I'm also an optimist and yes I do have days or hours when I think everything is hopeless (I get stuck in a good book if that happens and read it in my favourite spot) I believe in self help too and optimum nutrition. I enjoy research on this wretched condition and fundraising for FND (my son is going to raise money for Jon Stone's FND research at Great Western Hospital Edinburgh - it will be possible to donate through their website soon at his school Christmas Fayre). All these thing inspire me but also people like you and Kim and the all the others here and knowing we're not alone. I find this website a huge comfort and supports best of luck to Kim.

    Very best wishes Olivia

  • Good Morning, I think your letter hits it pretty close to the head. You inspire each other, love inspires us to go on. Whether it be our spouse, child, grandchild, or friends they all encourage us and give us strength to make it through each day. And yes < i Believe nothing is by chance, I believe God is and always be my greatest strength. Through His son Jesus, this is not all there is, there is more after if we live it to the fullest we can for Him. I have said it so many times, this thing does not define us, it is something that we have, its how we live with it that may inspire others, you see this life is not about us, its about the greater good we can do and inspire others on. I pray this day finds your wife blessed, she like I, are very blessed to have men that are there for us 24/7, not all are so blessed. Married 42 years in Dec. 4 children, and 23 grandchildren and counting, I am truly blessed. God Bless, Cathy

  • Hi Cathy!

    Thank you so much for your reply and also the other generous people who replied.

    I agree with your view and being very spiritual myself I always believe something is guiding us onwards although when my wife is in pain I do at times get angry and question but I guess that's what comes with being human.

    Have a happy Anniversary and we will be celebrating our 7th Anniversary tomorrow and Kim's 38th Birthday on Wednesday.

    we've been together 13 years so I count my blessings every day in that I found my soulmate.

    Best wishes to you all!

    Tony & Kim

  • to tony and kim

    my inspiration i get for ever where in my life. one person was from a lady called maisie chapman who was the branch leader of the mother union in south bank redcar and cleveland uk. as she carried on doing her tasks as a leader even when her husband was ill with a brain tumor and he sadly died shortly after his third set of chemo and he was a strong caring man. they both became to me like older siblings till i had to return to my home town.

    then their is the character out of the woman of substance . who defied all class judgement and became a powerful business woman.

    lately it has been closer to home like members of my family as we have been though at lot these last few years and still are stay strong .

    kim volunteer will do you a world of good and dont worry they will be aware of your problem and will hopeful understand . just take it a day at a time both of you and you will get there in the end .

  • Tony and Kim you are both inspirational! Can you friend me on Facebook? Then we can message each other. My career breathes with me and makes me focus on his eyes. It helped prevent seizures. Life changes with these issues and it is wonderful to get the carers perspective. I want to find that movie!!!

  • Hi there!

    we're not on Facebook but I can leave you my e mail address if that's ok and we can keep in contact.

    It's as follows:

    Jones781@hotmail.co.uk

    That film is on Amazon under the blu ray section or on the normal DVD section.

    Check e bay too because it could be cheaper.

    It's called The Raging Moon.

    Looking forward to hearing from you.

    Best Wishes!

    Tony & Kim

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