GETTING BETTER 2

[Dave_1]

Found out the link.

Everyone with FND should watch this. There really is hope of improvement.

player.vimeo.com/video/1499...

ENJOY AND GOOD LUCK

[angelite]

Hi Dave,

That is really interesting and may well work for true FND.

I personally haven't been able to run for 3 years, the velocity tightening spasticity prevents it. Since relapse I have acquired more spasticity so my walking speed is greatly slowed. Unfortunately, I believe that I am one of many given the FND label out of convenience after an initial clear scan rather than based on the positive functional symptoms criteria given on the neurosymptoms website.

I would be very interested to know if anyone else finds they can run before they can walk, so to speak : )

Thanks for posting,

Angela x

[Dave_1 in reply to angelite]

As another response says, they leave the condition too long before any real intervention. Yes I wonder also. Seems a strange thing until you think about it.

I am determined to improve and by a process of elimination I have found that Qi Gong (part of traditional Chinese medicine) and Tai Chi have helped enormously. I have thought about the reason why and have come to the conclusion that because the movements are repeated and repeated they become automatic, without thought. Then because these movements are involved in normal day to day walking, balance and life in general. These newly learned movements make new pathways for the signals from the subconscious.

When I was first diagnosed, about 6 years ago, I was trying hard to force myself to walk etc. DIDN'T WORK. Now, although I walk like a drunk, I am walking.

Angela I wish I knew the answers but we are all different and grab what works for you.

Best wishes

[Tewa in reply to Dave_1]

Over the course of this progressive disorder I have had periods where I could not walk, and was in bed for a week or more at a time. Even on my better days, walking is limited to very short distance. Same for standing as my legs weaken, become heavy and tingling..until they get numb. I can't push i tor everything; breathing, swallowing etc gets worse.

[Dave_1 in reply to Tewa]

This is a horrible CHRONIC condition that affects every aspect of our lives. I speak from a personal perspective here. I can empathise totally with you.

Then, what happens you become depressed and full of anxiety as to where all this is going to lead. So doctors give medication to help/numb those symptoms and concerns. A vicious circle.

I don't want to give anyone a false hope but at the same time everything changes and maybe, just maybe there can be some changes for the better.

I wish you all the best for the future and hope raising just how severe this condition can be will spark some constructive help for those who suffer. I think suffer is the appropriate term.

[Tewa in reply to Dave_1]

Thank you Dave. Yes, suffer is the appropriate term. And how does one deal with even friends who think if you 'believe," see yourself well, " or have enough faith you can heal this? It is exhausting to relate how many holistic therapies I have tried , how many docs I have seen and how much I have prayed...to no avail. And, the implication is that you must try harder, have more faith..... For over 6 years I have struggled with this progressive and debilitating disorder. And... I find this disorder isolating in so many ways. I am grateful for the support and UNDERSTANDING I have received on this site. Thanks to all!

[angelite in reply to Dave_1]

Hi Dave,

The rerouting of circuits or neuroplasticity can work for all kinds of neurological damage/dysfunction to some degree :

en.wikipedia.org/wiki/Neuro...

The automatic actions we take for granted are muscle memory :

en.wikipedia.org/wiki/Muscl...

This can be useful in many known neurological diseases.

You can have poor short term memory/concentration and find new things difficult to retain/learn due to damage to those circuits but have retained your ingrained long term muscle memory and use these intact pathways to automatically drive, ride a bike etc. without having to make a deliberate effort to concentrate as these memories exist on separate circuits.

In spite of much self physio, I find I have plateaued out for a while at this current level of ability but may well see increments of improvement at some point in the future.

If you find a way to help the balance, let me know - to quote the Fast Show ' I'm not p*ssed, you know ' ! : ) x

[Dave_1 in reply to angelite]

Like your last quote. Very appropriate. The Qi Gong has undoubtedly helped me, however once I overdo it. As we all do then everything seems to go to pot.

Also I find I need to keep the mild exercise regime up as I tend to regress and loose muscle strength quickly.

I was so independent that asking for help was such a big step, do it now though.

Regarding the nerve pathways, I wonder if research has actually found the full truth in how messages are activated etc. I also for my sins have REM sleep disorder. Instead of no movements during sleep the messages are sent while still unconscious. Soooo what other messages get sent unasked for?.

Lots still there for further research.

Thanks for your links, very interesting.

[angelite in reply to Dave_1]

Dave, that REM sleep info is interesting - now you just know that I'll have to go off and research that ! There is a part of the brain that is responsible for paralysing the muscles during sleep, when it goes wrong you can end up with acting out responses to dreams, sleepwalking, sleep paralysis etc. I got sleep paralysis during both episodes of illness, conversely I can also get jolted awake again repeatedly while trying to fall asleep. I get the internal vibration feeling with eyes often rapidly going back and to during these jolts. I'm off to investigate ! : )

[Hidden]

Thank you so much for posting this video. Really helpful.

[Dave_1 in reply to Hidden]

We all need a bit of hope. What is really needed is awareness across the medical, psychology and physio's. They need to think of a constructive care pathway and make us realise that there is a possibility of us getting better.

Take care Mel

[lorettapalmer]

Thank you so much for posting, I've found that in the swimming pool I'm normal just like how she was on the tread mill. I haven't been able to transfer it too normal life but this is amazing, I'll share it with my neurophiso, many thanks xx

[Dave_1 in reply to lorettapalmer]

I did a reply to one of the responses from my post.

I find that Qi Gong (from Traditional Chinese Medicine) and Tai Chi together have really helped me. Not immediately but after a few moths. The repetitive moves, I think, create useful new pathways for use in normal daily life. ie. walking and better balance. The swimming is about the best exercise we could do for health but the movements aren't transferable to land in the same way.

We need to keep talking about FND, awareness may get people to actually start some proper research. Not only for us but for those coming behind us.

Keep going, good luck.

[cgarff]

I'm thrilled she was able to find help so quickly. For those of us that it has taken so much longer to even find the help, or are still searching because there are only so many dr.s that really know about FND I have read the longer it goes on not being treated the harder it will be to re-habilitate. But I hope and pray that we will all find the answers. Best of luck to everyone on here. Keep up the faith, we are going to make it! ❤

[Dave_1]

Yep exactly, the proof is in the pudding as they say. I personally believe that the poor functioning pathways are allowed to become the default by not acting quickly enough. Like concrete, the longer it's left the harder it gets.

Awareness is the first big hurdle to overcome within the whole medical system.

[Tewa]

This is very encouraging. How did she overcome the fatigue and increasing muscular weakness that occurs with repetition? I suppose there are many forms of FND?