Nec drop


#1

Hi!   after twelve years of almost good health after being diagnosed with PD, I have suddenly been hit with lots of symptoms all at once. This includes eyesight, speech, handwriting, etc.  however the worst thing is "excessive head drop" which means I walk along staring at the floor unable to see where I am going, look at bus stops etc.  the worst thing is the loss of social contact as I cant look passers by in the eye.  I have been given a neck brace which is quite uncomfortable and doesn!t help much and am awaiting physio

Does anyone have any advice or similar experience?


#2

HI. I could have written your post I was diagnosed in 2001 and up to about 6 months ago I was coping with PD symptoms I was able to cycle to my allotment do a steady 2 hours work and passing time with fellow allotment holders.Drive myself to band practice and take an active part in organising sessions. 

All that has changed since I developed neck drop my long suffering wife is my chauffeur and roadie  despite numerous visits to Phisio's and neuroligists and several neck braces later My head remains in dropped mode

It seems that I have Idiopathic neck drop syndrome.

Try Google I did and one site suggested that with intense Physiotherapy and support for a few months an improvment  may happen.

 

 


#3

Sorry to hear.we have similar problems.  I have just managed  to get to the top of the queue for NHS physiotherapy - not helped by the fact that my neurology consultant forgot to refer me not once but twice!

Anyway, in the meantime I have paid for some private physio. which has proved helpful though no miracle cure.  She did say that there had been some evidence recently that the medication you take may play a  part as she had a small group of clients who had stopped/reduced their dose of the dopamine agonist  they were taking  and found that their problems with neck drop stabilised.  I did at the suggestion of my neurologist reduce my intake of ropinirole but my hands started to tremor so I went back to the previous dose.  Do you have any problems with double  vision, etc?

Best wishes


#4

I to visit a private physio to manipulate my neck and shoulders,mostly I am walking taller as I leave his premises but the effects soon wear off.

When I mentioned this to one of the organisers of the local support group of which I am a member i was informed that the group will pay a substantual amount to help  towards the cost of the treatment.

If I may point you towards a website where there is a decent looking brace displayed, the site is www.shanesneckbrace.com The local NHS orthotics branch is trying to source something similar for me.

Ah well I must sign off now the aroma of bacon and eggs is rerminding me that my evening meal is ready.

Cheers for now Alan


#5

Thanks Alan.  The neck brace looks much more comfortable than the one I have been supplied with by the NHS. This looks a bit like Hannibal Lectors mask (without the chianti!)  It is difficult to put on by myself and becomes uncomfortable quite quickly..  Do you know if Shane's collar is likely to become available here or anything similar?  I have seen one which seems to involve wearing a baseball cap - not usually part of my wardrobe.  Any  advice on neck braces from anyone would be appreciated.  Thanks! Nicola