Dropped head (Parkinsonism?)

[souvenirofaterribleyear]

DM is in a nursing home, and without going into all the backstory, in the last few weeks she has started sitting (in wheelchair, she cannot walk) with her head dropped forward (or sometimes to the side) so that her head is at a 90 degree angle. I can't seem to lift it up manually, and it's very distressing to see. She can't see what's going on and it's hard to get her to eat and drink in that position. The staff say she's just tired, but I think there must be more to it. Some days are better than others, but she wasn't doing this before. We are waiting for a Parkinson's assessment, although they are suspecting vascular Parkinsonism and don't seem willing to prescribe any medication (why not??). She isn't on any medication (apart from paracetamol and Adcal). The care home are also getting here a special chair (Kirton chair?) which at least should be more comfortable, but will it help with the head posture?
Any occupational therapists out there with any advice? I don't want it getting any worse - surely there is something that can be done to help?

I'm not an expert on Parkinsons by any means but i have worked with the elderly for 30 years and what I will say is that their posture is getting much worse. Many of them fold their heads right into their chests and bend their bodies forwards - almost at a right angle.

There is no medical reason for doing this though, it's just a really bad habit. If I say, "stand up straight" then they do!

What happens to your mum when you ask her to lift up her head? Also, ask her why she is doing that - very often they'll say "I don't know"

I hope some OT's do come on here and explain whats happening - it's definately getting worse. They seem to sqrunch up right over their core.

I've got an appointment with The Alexander Technique next week to get some posture tips because i'm terrified of ending up like this.

Unfortunately if this is vascular Parkinsonism and not Parkinsons, then there is no medication.

Thanks Chowtime, that's weird that you think it's got worse over the past 30 years. What could be the reason for that I wonder?
DM has impaired cognition and is very difficult to communicate with. She doesn't respond when I ask her to lift her head up, and I can't seem to get her to say anything about why she's doing it. I think it's involuntary (neurological?), which is why I am so worried about it. I cannot physically lift it (well, maybe slightly, but then it drops straight down again), it's like a dead weight.

@AnnaMagnani do you know why there is no medication for vascular Parkinsonism? That's very depressing. Does that mean there's no point in trying to get a definite diagnosis - because there's absolutely nothing available to help with any of the (many) symptoms she has?

Does a doctor visit? If she wasn't in the home she'd see the doctor for that wouldn't she?

Yes the GP does visit but I don't think this particular thing has been mentioned to him yet. The staff (registered nursing staff, who all seem very capable) think she is just tired. She was doing it a bit before Christmas but then the issue seemed to correct itself, and she was generally OK for the next few weeks, until recently.

Im sure there was a very informative thread on here last year with exactly the same problem.

My father has vascular Parkinsonism too op and is currently in hospital propped up my loads of pillows, but still drops his head forward like this.
He doesn't seem to realise he's doing it.
I massages his neck very gently yesterday and asked him to look up at the ceiling and try to lean back, which he did eventually.

It would be great to see this thread if someone could link please 🙏

Does that mean there's no point in trying to get a definite diagnosis Presumably there is a point in being sure, because other forms of Parkinsinism do have medications to control symptoms.

Yes definitely

This thread.

@Chowtime thats really interesting! I wonder whether it’s because we’re so much less fitter so have much weaker core strength? I’ve just embarked on a fitness and strength training programme and it’s making such a difference to my posture - I’m in my 50s and doing it so I stay strong in old age 😬.

But AnnaMagnani said upthread:

Unfortunately if this is vascular Parkinsonism and not Parkinsons, then there is no medication.

Does anyone know what the types of medication (if there are any) are for vascular Parkinsonism?

No contradiction. If they think it’s vascular but you haven’t yet got a firm diagnosis, then you need to rule out the very faint possibility that it isn’t vascular. Because if it isn’t actually vascular it may be possible to reduce symptoms.

DH has Parkinson's and his posture has deteriorated drastically in the last year or so. He is 64 and has been Dx for ten years. The bent over posture has developed in the last couple of years. It affects his balance and means he can't see where he is going. He takes a lot of Levadopa, amongst other things, and has "up and down", "on and off"periods multiple times a day as well as frequent freezing. If the OT tells him to stand straight, he can do it but goes back to the bent over position as soon as he forgets. He also has his knees bent a lot which I think might be a way of trying to balance while leaning over. I don't know what to suggest but it does seem to be a typical symptom of PD but definitely worth raising more formally. Good luck