Does anyone know of any head /neck exercises that will help keep the head more upright when sitting. When my husband is sitting down his head is constantly down. He just doesn’t seem to be able to hold it upright. I find it quite upsetting to see him like this. We have an appointment with our PD nurse next month but I’ve already mentioned this relatively new and worrying symptom and she didn’t really suggest much. He’s had PD for just over 6 years (he’s 71) and this has only started to manifest in the last 6 months or so. He takes Sinemet and Ropinerole and I realise these meds cause drowsiness but I’m more concerned about the fact he seems unable to keep his head up. His head is also slightly down when he walks too. Any tips until we see PD nurse would be welcome.
My husband also sits like this now. It has been more noticeable in the last few months.
Watching TV he looks as if he isn’t taking anything in
Veryu distressing to see.
Hi KK1, yes it’s starting to worry me now. I’ve not seen any other posts mentioning this. Have you asked your PD nurse or consultant about it? If you don’t mind me asking, how long ago was he diagnosed with PD? Thank you, Jean
I dont know if this helps, but in case it does - Ive found it hard to sit with my head unsupported for a while - it just feels so heavy!
So I have a pile of cushions arranged in a corner of my sofa : large one for my back, a small roll to support my lower back, and cos I cant find anything else thats right, I use a soft toy that happens ti be long and squishy to support my neck.
Then I can just let all my weight be supported. And Im comfy!
My husband doesnt get it at all - he just cant imagine how your head can be too heavy!
Sometimes I just need to lie down (with good cushion under my head) instead of sitting if we are chatting or whatever.
Hope it helps and you can find a solution
Hello UnStiched and thank you for your advice, will try that. I’ve been looking online and it seems you can get various neck brace supports but I’d imagine they’d be uncomfortable after a while. Anyone out there use them? It’s first on my list to mention when we see our PD nurse next month. If I get any tips I’ll pass them on via the forum. Thanks again for your reply. Jean
He was diagnosed in 2016 but possibly has had it for more years than that
Various symptoms that were never explained.
Best wishes to you both, it’s extremely hard isn’t it?
Hello KK1 and thanks for replying. My husband was also diagnosed in 2016. But like many others has probably had it for years before that. My heart goes out to anyone who is suffering with this most insidious disease as it progresses… Take care Jean
How about a horse shoe travel pillow worn back to front , to support the chin. Also when sitting use a adjustable stand to hold it phones iPad etc so the head has to look at it when straight. !!?
Hi Lar and thanks for the suggestions. Will give them a go. Ideally I’d like to know the reason why he’s just started doing this but I suppose we’ll only get told it’s part of PD which it probably is…
Hi again - Ive tried the horseshoe neck pillow thing - various different ones over the last 4 years but I find they make me too hot.
I have wondered if a neck shaped pillow would help more than what I use…
Small fleeces it blankets rolled up are quite flexible I find.
I do have extreme exhaustion so Ive been lolling for ages. Would be lovely to have someone else to plump my cushions! So hugs to you for noticing and supporting (literally!) your husbands. Hx
Hello to everyone who has contributed to this thread. I will say at the outset I don’t have any magic answers to this distressing phenomenon. The head is heavy, probably heavier than most people realise and has a role to play in a range of everyday activities but as has been rightly pointed out, the impact can be that much greater when head drop is involved
In simple terms if you have have head drop the muscles that support your head have for whatever reason have become stretched or weakened, pulling the head down. It is difficult to your head up because you will essentially be fighting gravity.
I can’t vouch for how effective they are but there are a number of videos on YouTube with exercises for dropped head syndrome that you may like to try. Putting head drop syndrome in the search
My best wishes to all
Tot
Thank you UnStiched and Tot, I will look at various cushions and supports etc and also see if he will try the exercises. It just seems that the minute he sits in the chair his head drops down and especially in the evening, it would appear he’s asleep. It’s happened again this evening and we have our son staying with us for a few days. So I just say he may as well go to bed as clearly he’s not watching or enjoying the TV programme and would be better for him to rest lying down in bed. He often says his back aches when walking which I suppose isn’t surprising given his dreadful posture and the strain it must be putting on his neck muscles. I hope our PD nurse can help when we see her next month because it’s really a cause for concern. Thanks for responding. Best wishes Jean
Just been reading online article that suggests that one of the side effects of Ropinerole could be dropped head…My husband has been in this drug for a couple of years at low doseage, but earlier this year it was increased. Don’t know whether it’s just coincidence but this condition only developed in the last few months. Could the increase in the Ropinerole be the cause? He’s also had some hallucinations the past few months and increased tiredness/drowsiness throughout the day when his head always drops down. Maybe I’m clutching at straws to explain why this has just started happening, but will be asking the PD nurse when we see her next month. In the meantime, if anyone else has experienced worsening symptoms while taking 8mgs Ropinerole XL, I’d be interested to hear from you. Many thanks Jean
I’ve got a dropped head which came on really suddenly after I started taking levadopa and mirtazapine in the same week last year. I came off the levadopa with support from my specialist around Christmas but it wasn’t that. So I reinstated.
Now I’m tapering off mirtazapine with the psychiatrist’s support. This is actually tougher to do than coming off the levadopa! 
I’ve assumed with b/f that it’s just part of Parkinson’s. Gave him a travel pillow for in the car but he’s not bothered by it.
He usually seems nodded off when we’re watching telly. We usually go for a lie down in the afternoon.
Can imagine they would got hot - wonder if there are cooling ones?
Good luck with nurses.
Again, if it helps, Im not on any medication except beta blockers so I cant blame those as theyre a very recent thing.
But thats not to say meds might be a thing for other people?
ive had a heavy head problem for i dont know how long now. (so much brains! 
) Im noticing that Im lolling to one side the last couple of weeks. More pillow plumping!
Ive put it down to my exhaustion- Tot is right, heads are heavy old things!
I always sit with my feet up too and slip down a bit so my head is propped at a good angle for tv watching.
Thanks Tot for the exercise idea, i hadnt thought of that.
Do any of the other head lollers (sorry!) have neuro probs or dementia like I do? Joy!
I don’t have Parkinsons , my husband has but he is not suffering from the droopy head, we do have high backs on our sofas so he has head support while sitting . I have generalised Myasthenia Gravis and i do have a problem with supporting my head. Sitting in a low backed chair I am ok for a while then I start to struggle. I have tried various neck supports but have not found any to be useful. Neck supports did not stop my face druping and the travel supports did not work either. The drugs i take do help but I doubt if they are suitable for parkinsons. Pyridostigmine helps my muscles work as does Prednislone a steroid.
This might be the article Jean found on dropped head [antercollis/antecollis] and ropinirole:
Ropinirole-Induced Anterocollis in Parkinson’s Disease Movement Disorders - Clinical Practice Vol.3 Issue 1 L.Ameghino, M.Rossi, Á.Cammarota and M.Merello Article first published online: 13 NOV 2015
I also referenced this article in an earlier thread on this topic started by Nick: Nec drop
Snowy has also posted several times on this topic describing what he has tried:
Snowy 25d nov.21
Hi I’m in Canada originally from the UK recently diagnosed with Parkinson’s and am taking Levadopa 100/25 3× a day. I developed a headrop a few days after starting to take it
Came off levadopa Snowy Feb 7 2022
Well I came off the levadopa to see if it improved my headdrop and it was really difficult without it. My head position didn’t improve…so I have started back on it. I’m really disappointed. The only other drug I take is mirtazapine which I started originally at the same time as the levadopa. The headdrop started a few days later.
Antidepressant recommendation Snowy Mar 30 2022
Hi I wonder if anyone could let me know which ADs work for them. I take Levadopa & 15mg mirtazapine. They’re going to taper me off mirtazapine to see if it improves my head posture & stiff neck. But I don’t like the idea of the options that have been suggested (sertraline, venlafaxine, duloxetine). Would anyone be prepared to say what works for them? Thank you!
Mirtazapine, like other antidepressants can cause/worsen movement disorders:
https://www.drugs.com/mirtazapine.html
Mirtazapine Brand names: Remeron, Remeron SolTab Medically reviewed by Kaci Durbin, MD. Last updated Feb 3, 2022.
For the Consumer. Side effects include: Decreased or increased movement
For Healthcare Professionals Side effects include: Nervous system
Common (1% to 10%):, tremor
Uncommon (0.1% to 1%): hypokinesia, hyperkinesia,
Rare (0.01% to 0.1%): dyskinesia, extrapyramidal syndrome, dystonia, restless legs, akathisia (psychomotor restlessness)
Mirtazapine-associated movement disorders: A literature review Jamir Pitton Rissardo and Ana Leticia Fornari Caprara Tzu Chi Med J. 2020 Oct-Dec; 32(4): 318–330.
Intrajejunal Infusion of Levodopa-Carbidopa Gel Can Continuously Reduce the Severity of Dropped Head in Parkinson’s Disease H.Kataoka, Y.Sawada, T.Namizaki, N.Shimozato, H.Yoshiji and S.Ueno Front. Neurol., 16 October 2017 |
Doherty et al. mentioned that antecollis might be an off-state phenomenon or a dyskinesia-like phenomenon related to dopaminergic medications.
Anterocollis as an “Off” Phenomenon in Parkinson Disease Z.Guduru, J.Morgan, K.D.Sethi July 2017 Movement Disorders Clinical Practice 4(6)
Hi I’ve been off mirtazapine for almost a week now. They say I have to stay off it for a few weeks if I want to see if there’s any improvement with my head.
I’ll report back.
hope you get some relief
Do you get any backache with it?
How about your breathing?
I saw the physio recently but forgot to ask about my neck.
I’ve been getting very tight upper back. Went for a walk yesterday – I wouldn’t call iT PAIN more like Braxton Hicks - almost feeling the need to breathe it out. Don’t think the walker is great for my posture but at least if I’m looking down and bump into something the walker hits it first.
I use my recumbent trike more. My new one has an adjustable seat so it sits me quite upright & I don’t notice backache so much. Just have to try & keep my eyes open so I don’t crash into things. Had a close shave with a kamikaze dog in the park the other day when my eyes had closed (blepharospasm)
I try various yoga clips from youtube in the hope that I’m helping to correct my posture but not good at doing the breathing - feels very choppy and shallow & wonder if all the tightness in upper back is a knock on effect of hunched over posture