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?
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.
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?
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 NHSorthotics 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.
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 wouldbe appreciated. Thanks! Nicola
Hi there,
I know this is a long shot! Husband has had Parkinson’s for over 11 years now, head dropped over night nearly 3 years ago, onto his chest sideways, locked position.
No answers so far, or reasons why! Had three different diagnosis from 2nd referral hospital. No luck with any decent neck collars /braces, he has just had first Botox injection to help release the neck, so he can now turn head a bit to the left.
It has not lifted the neck at all.
I am wondering if you can help at all, as by the date on this quite some time ago.? Did you get any joy with any help or diagnosis apart from physio, he is currently having that t9 try and strengthen the neck. Nobody down here has seen this before, so having lots of battles as you can imagine.
Help please. Thankyou
Hi Chrissey,
We just wanted to take a moment to welcome you to the Forum. Before our community provides their feedback, we wanted to make sure you’re aware of the resources on our website at https://www.parkinsons.org.uk/ as well as our helpline at 0808 800 0303.
Best wishes to you and your husband,
Jason
Moderation Team
I suffer from this! It came on suddenly after starting mirtazapine and levadopa. But I came off the levadopa for 3 weeks which didn’t help. The psychiatrist is going to support me coming off the mirtazapine just in case.