What I find helps

[andyglasgow2016]

Hi guys

My FND was brought on by a car crash in April 2014. It's been a long process but I've gone from a wheelchair to using sticks and a scooter when out and about.

I have found that going for massages every month or so can help. Also going swimming three times a week... I just started with a few lengths but it's about what works for you.

I started with doing leg movement in the pool and progressed slowly over time to more movement. I use the seat hoist to get into the pool

So it's about what works for you but give it a shot..

Meet with the pool manager and discuss your needs etc and you will find how encouraging the staff can be!

[GuitarJoe]

Same here, massage, hydrotherapy and swimming. At one point I was getting muscle wastage on my right side, my right leg had visibly less muscle than my left. All back now and there was no other way I could have done this but for getting in the water. Once the effect of gravity is taken away it is possible to move in ways I just can't or couldn't do on dry land. I have now built up more stamina which enables me to enjoy life , previously I would have to ensure there was a room somewhere I could go off and rest in, now I'm able to participate fully. My walking is still not good and the strength goes out of my legs fairly quickly but I can now drive a mobility scooter so I am much freer.

[Tewa in reply to GuitarJoe]

I have muscle atrophy on my right side too...upper arm, hand and calf. This is visible and showed up in EMG/Nerve Conduction tests. Muscle Biopsy showed Type l and some Type ll atrophy. Has your doctor given you an explanation for the muscle atrophy?

I can't do the water exercises as the warm water exacerbates my symptoms.

I use a cane and a mobility chair.

[Dave_1]

Just figured out my login details again. Andy I agree whole heartedly with how your tackling your FND. Its as if we have lost the correct pathways for not only movements but the control of the nervous system.

On a personal level I have found that Tai Chi and especially Qi Gong that is practiced in conjuction with it invaluable. The Chinese have used this for thousands of years to improve the pathways of "Chi" energy as they would call it. Some are exactly the same as understood as the medical nervous system, however there are some suptle differences. Maybe they understand something we don't.

All I can say is it works for me, I walk, talk, move and sleep better since I started it in my local Leisure Centre. There are versions that can be completed in a wheel chair etc. Just go easy, it's not about vigorous exercise, more reprogramming the old system.

Another way I look at it is a comedy sketch (FND IS DEFINATELY NO JOKE) by Morcombe and Wise. See Link, he plays all the right notes but not necessarily in the right order. I tend to think thats our problem.

dailymotion.com/video/x31b29r

[andyglasgow2016]

I've not really pushed for further testing on things. I'm fortunate that my consultant is top quality and actually features on FND hope.. Doctor Murray. She works closely with dr stone so she is brilliant with things. She's really encouraging and seen good progress for me. The key thing is positive attitude , not because our mind is the reason for FND. It because the way we view it affects it! If we had a broken arm and refused to use it ever, we will be scared to try things...

So just look at what you can do!

I know for everyone it's different with what works.. But my faith in Christ is encouraging and knowing others are praying for me helps.

[GuitarJoe]

No explanation for the atrophy Tewa . I've had years 'it's your illness' but then it's only the last 18 months they have used the term FND, before that it was a form of Parkinson's which they do still hedge their bets and throw in occasionally.

[Danslatete]

Has anyone got problems with their blood? I'm battling aneamia (8years now).

I recently got problems with my white cell count dropping to 2 and my clotting taking longer. I have had a full MOT by neurology including massive amounts of blood tests, MRI on spine head and neck, lumbar puncture and last week gastroscopy and colonoscopy. I'm at my wits end.

It's almost like a remitting relapsing thing going on. I was diagnosed with fnd as an overlay after a car accident that gave me a brain injury.