Hi I'm new

[arlene9]

I would like to know will this conditions ever be completely healed I've Been having difficulty walking and its not getting better is it time to except my condition .numbness in hands and legs ,bad memory ,tiredness today it feels like my heart is tired .

[LEEJUNFAN]

Hi Arlene!

That's the question everyone asks everyday and there's no answer except for living in hope that one day it will or that they find a cure.

Wether or not to accept it is an individual thing that only you can answer but as long as you're doing the best you can then that's all you can do.

It's a question I and my wife and everyone on this site ask many times.

Sorry i can't be of more help but please don't ever be afraid to ask for help for yourself and family.

Nice to hear from you.

Loving Wishes Always Arlene

Tony & Kim xx💕

[arlene9 in reply to LEEJUNFAN]

Hi thank you it is just great to know that im not going crazy lol its real thanks

[LEEJUNFAN in reply to arlene9]

Hi Arlene!

You're definitely not crazy, just concerned like us all.

This is a great and helpful site and is a life support offering help better than the medical profession at times.

Keep smiling 😊 sweetheart.

Wishing you all the best 😊

Tony & Kim xx

[heli65 in reply to arlene9]

Your symptoms are the same as my daughters. You're certainly not alone Hun x

[malalatete]

There is an old prayer asking for the serenity to accept the things you can't change, the courage to change the things you can, and the wisdom to know the difference...

With this condition I think you need to accept that it is here, for most people most likely here to stay, although it may fluctuate and there may even be (as in my case currently) periods of remission. But something HAS happened to your body, a significant, life-altering change, and at the moment the medical eatablishment does not really understand what that change is, let alone how to fix it. We cannot change that...we have to accept it. Acceptance is key to achieving the next bit.

We do have to have the courage though, whilst accepting that this has changed our lives forever, not to let it 'be' our lives, or define them. We have to have the courage to actively manage the condition so that it does not become the thing that rules our lives. That means having the courage to push our GPs for understanding, and for insisting on referrals to supportive specialists and helpful therapies to address problematic symptoms. It also means being strong enough to accept a whole counter-cultural way of being - one where 'rest' must take the place of 'rush' and where 'I will wait and see what tomorrow brings' replaces 'my plan for the next few years of my life' - however crazy that approach seems to other people. It means being brave enough to walk the wonky walk with a stick, or to jump on a mobility scooter, and accept that we will come across a change in attitude once disability is out there and visible, whilst always being ready to challenge it, gently.

And the wisdom to know the difference? That's the bit to really pray hard about...because the things you can accept are the things you won't need courage to change; but it is important to keep on keeping on, rather than curling up in a ball and giving up. However for each of us that dividing line between things we can hold in acceptance and things we needs must change is different.

Rest and ponder, rest and pray. You know yourself and your condition better than any expert. You know what and where you want to be. And remember - Tiredness may not cease but a vibrant life can still be lived in small bursts around it.

Blessings x

[Hidden in reply to malalatete]

Malalatete.

I am trying hard to catch up on reading posts. After reading yours, I had to stop and reply.

What you wrote is like a cornerstone of our existence.

I ask your permission to re-print it with credit given to you in any form you wish. Please let me know.

The words and sequence are what every new sufferer who is wondering what may lie ahead should read when they reach out for support. But also, your wisdom is a reminder to us long term sufferers from where we came and how we have managed to cope.

God Bless you and thank you for your skills. This is a masterpiece for introducing the roadmap for the journey that comes when reality sets in with this disease.

It is my pleasure and honor to stand with you in this community.

I send my love and respect and prayer for this day.

Dan / Seattle

[malalatete in reply to Hidden]

Use it where you wish, Dan. Thanks for those kind words.

Blessings to you, peace and all good.

[Hidden in reply to malalatete]

Thank you. Will give credit to your community name.

You brought a centerpiece to how the united approach might be visualized. We are under God's guidance so have only faith and trust that outcome will be by his desire.

I am only in service by his will.

Dan / Seattle

[Hidden]

Great post 💕 And so true!

I'll also take heat your kind and informative words.

🌞

[patti86]

I wish I could answer this but as so many have already stated. There sometimes are no answers. We must find peace and accept things and focus on what we can do. We are all in the same situation. I'm new like you. Have no idea why my gait is off. I tell my fiends that my body has gone all roque on me. Hang in there. Our brains are a mystery. They like to keep us on our toes. For me I'm dancing to remain standing and to move. Good thing I love to dance. Sending positive thoughts for all.

[Borrow]

Sorry but I have very similar problems and whilst I do have better periods I have never really got better. I find the more I do the worse I am, so if I am silly on the good days! Boy do I pay for it!

Pacing, Pacing, Pacing is the moto I 'try' to remember.......

Shame I have a lousy memory too......

[angelite]

Hi Arlene,

I would have to answer that it depends on the cause ! I wonder just how many of us are being dismissed as FND on symptoms alone or following a single 'clear' scan years ago without having received adequate appropriate testing to rule out other causes. How many of us are getting more disabled as time passes without any medical support ?

I would advise all to treat it like any neurological illness - pacing, exercise, adaptation around disability. Neuroplasticity is the desired goal to improve how the body functions.

Keep walking, Arlene, any way you can. Use a stick, two sticks, a walker, whatever you need to correct the deficits and not fall. Challenge yourself - try slopes, steps, bumpy surfaces. Look up exercises for Ataxia to help with balance, if yours is an issue. Rest when you need to - my muscle weakness means I tire quickly so short bursts followed by rest is my method. Use a perching stool for kitchen tasks/personal care if safety or fatigue is a problem so you can get tasks done whilst saving your energy/muscle power for meaningful physio. I am 3 relapses down the line, all triggered by infection or virus. I have accrued multiple issues with each relapse. I have made some sensible adaptations to my life but continue to strive for improvement ! Angela x

[arlene9 in reply to angelite]

Thank you so much I'm using a crutch got a wheelchair that I'm not going to use because i believe i must take a walk just for excercise with the crutch but im not giving up thanks for positive info mwah enjoy the day

[Hidden]

Arlene9.

I have so little that I can add to the incredible replies that you have already been given.

I noted remissions and relapses but I was never able to regain the level of function that I previously had. It has been a slow but steady rate of decline in me over the years.

As some others are, I am housebound and my wife gives care daily. I can not work outside home in current environment and can not drive anymore. But, I do adapt and keep trying and now have the joy of friendship in this community. It brings mental stimulation and the ability to offer words of support to others which provides great satisfaction and self worth. I can cook and clean and care for pets and be there for my wife and daughter to help them in small ways. Life is full and rich because family makes it through the daily struggles together.

So, life can go on. We are looking for ways to get answers and access to better services for all. Any insight you find through your journey will be invaluable contribution. Just knowing what you are experiencing confirms our own assessments about this disease.

We hope you continue to share and relate to us. You help in many ways.

Thank you.

Dan / Seattle

[arlene9]

Hi guys thanks everyone for all the positive outlooks on life. Since ive joined this group ive felt more at peace with myself thank you all God bless