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
WHAT IS DYSTONIA AND HOW DOES IT RELATE TO PARKINSON’S DISEASE? Nov.13, 2018 Dr. Rebecca Gilbert
Neck: Repetitive and sustained movements of the neck are known as cervical dystonia
The neck can tilt, turn, bend forward, bend backwards, or assume a position that is a combination of these movements.
The most common scenario in PD and parkinsonian disorders, is a neck that is mostly bent forward or flexed.
There seems to be an association between exposure to dopamine agonists and rapid-onset neck flexion in a subset of people.
If the neck flexion occurred soon after a change of dopaminergic medication, your doctor may consider changing the medications back to the way they were taken prior.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4822351/
Postural & striatal deformities in Parkinson’s disease: Are these rare? Sanjay Pandey and Hitesh Garg Indian J Med Res. 2016 Jan; 143(1): 11–17.
In a PD patient there may be forward flexion of neck and head which is known as antecollis. When this forward flexion is severe and chin of the patient is bent down upon sternum it is called dropped head.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5393078/
Assessment of striatal & postural deformities in patients with Parkinson’s disease Sanjay Pandey and Hitesh Kumar
Indian J Med Res. 2016 Nov; 144(5): 682–688
Antecollis was seen in 7.14 per cent patients in our study, as was also reported earlier. In a study by Kashihara et al dropped head syndrome was found in six per cent patients. Fujimoto found that seven of the 131 (5.3%) patients with PD had dropped head.
Anterocollis or antecollis, also called dropped head, is characterized by disproportionate flexion of the head over the trunk and can result from either muscle weakness (i.e., myasthenia gravis and motor neuron disease) or muscle hyperactivity in cases of dystonia. Anterocollis has been described in patients with Parkinson’s disease (PD) or multiple system atrophy; however, it is still debated whether, in these cases, it is dystonic in nature or myopathic or both. Anterocollis has also been described with use of antiparkinsonian medications, such as amantadine and certain dopamine agonists (DAs; cabergoline, pramipexole, or rotigotine). We report here videotape evidence of anterocollis development secondary to ropinirole use, with full recovery after drug discontinuation.
Me & my neck
15/5/02 Sertraline 13 days
19/5/02 all neck tight when walking,
27/5/02 Amitriptyline 2 days
5/10//2 neck bothering me. Head juddering
22/10/02 neurology report Intermittent spasm of neck muscles, mostly platysma
12/02 Sulpiride few months
29/9/03 Physiotherapy neck flexed
7/6/04 physiotherapy Head getting worse. Medication Dothiepin
my neck was going crazy pulling back repeatedly, started wearing a soft collar
28/11/04 couple weeks now, when flat on back trying to rest my head seems to rear back in pillow as if arching neck.
27/9/07 neck been getting worse - retrocolis [tardive dystonia ] I think - head jerking back & pulling back to right side
neck pain start using heat pad neck muscles got too tender as too much jerking back then started to get revoltingly painful spasms just when I’m dropping off to sleep or waking up
12/5/10 Neurologist notes chin tuck, platysma overactive [‘Chin tuck’ normally used to describe manoeuvre to help swallow]
By 2019 I note I am looking down most of the time when I am walking. I remember someone coming up to check I am ok and bends down to look in my faCE. And talk. I have to think about it then I lift my head to look ahead then looking at the pavement again. Not sore.
Plenty stiffness neck & shoulders so I do yoga regularly & keep fingers crossed. Every morning before I run to the loo, before I even sit up in bed I turn head side to side repeatedly aS IF I don’t I get sore neck which is further aggravated by all head jiggling/shaking /jerking back in the day. Don’t take any more drugs since 2004
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.