Hi. My 72 year old Husband was diagnosed 5 years ago, also has other symptoms form Heart and diabetic conditions. Generally PD is not over severe, he is just really slow, bad and tremor and a little forgetful at times though PD progression has been slow. Some could be age related anyway. One weird thing is his facial expression. I have heard of a ‘mask’ which I can see at times in his general expression but he does really strange things with his mouth. (Sounds odd to describe really). Even in conversations he has his mouth wide open a lot and keeps putting his tongue out. Its almost like a grimace when people are doing something executive like lifting heavy objects etc. But he does this all the time. It almost looks scary and he doesn’t realise he is doing it. Could this be related to his PD?
Hi Xanto, thank you for sharing your story, and welcome to the Forums. You’ll find loads of helpful advice and experience here, from our truly wonderful community, as well as resources you can use to expand your knowledge of Parkinson’s and to help live with its effects. We found some information on rigidity and related muscular issues here: https://www.parkinsons.org.uk/information-and-support/rigidity. Please feel welcome to browse our website in general, and also to call us at 0808 800 0303 for free and confidential one-to-one discussion.
All our best,
Jason
Moderation Team
Thank you. I understand about the rigidity(I used to be a nurse) But this isn’t stiffness in his face, it is almost like ‘gurning’. Thats the only way I can describe it. Its very bizarre.
Hi xanto. Yes I know what you mean as my husband does it too. When he is focusing on doing something it’s like his mouth is putting in more effort than his hands. He’s done it for some years and his Parkinson’s has been slow progression, tremor was his biggest problem until dbs and he’s had it for 12 years. I don’t think he realises he is doing it and it does look very odd. I’ve just put it down to another part of parkies. Hope that helps x
20 It’s a long time since I have heard that word ‘gurning’. As a child I was given a foam rubber glove puppet of the toothless cartoon character Andy Capp. You could make him make faces. Perhaps gurning was a thing then. I remember my mum telling me off for always making faces, warning me my face would stay that way. I think you are right it’s not the stiffness/rigidity PD mask. I’ve seen that in myself when I was trying to update my facebook photo using the camera in my computer. I had to try loads of times because I couldn’t get a smile
This is how my ‘abnormal involuntary movements’ started:
Oct/Nov. 01 Domperidone (anti-emetic) single dose for migraine with vomiting
Feb. 02 Symptom onset - muscle spasms forcing eyes to close (Blepharospasm - a focal dystonia)
May 15 2002 Sertraline (SSRI antidepressant) 13 days. gp thinks muscle spasm is stress
May 27 2002 Amitriptyline 2 days only - for insomnia caused by Sertraline.
End May start acupuncture for eyes– she notices I am clenching my jaw. I chuck drugs in bin.
4/9/02 GP writes to movement disorder specialist: lots of abnormal movements around the mouth, jaw and lower face.
22/10/02 Specialist reports: Cranial dystonia/Facial dystonic/ Tic-like movements… intermittent eye twitches and spasms, dystonic movements in her lower face and occasional protrusion of the tongue. Her head would frequently exhibit flexion jerks, while subtle choreo-athetoid movements could be detected in her hands and feet… combining elements of dystonia, myoclonus and chorea.
21/11/02 My diary: face pulling & pulling, jaw worse, grimace. can’t stand it, neck terrible
20/12/02 Sulpiride (neuroleptic)
3/2/03 GP notes: patient’s condition worsened really looks like oropharyngeal dystonia to me today
18/2/03 Neurology report: increased perioral/ dystonic-like/ oromandibular and tongue movements
29/9/03 Physiotherapy notes: grimacing of facial expression… constant grimacing throughout all activities
13/2/04 my email to specialist Mouth tight pulling open in grimace. Biting cheeks/tongue,
Sertraline induced mandibular dystonia and bruxism N. A. Uvais, V. S. Sreeraj, and S. V. Sathish Kumar J Family Med Prim Care. 2016 Oct-Dec; 5(4): 882–884.
Specific serotonin reuptake inhibitors have been associated with the occurrence of drug-induced parkinsonism, dystonia, dyskinesia, and akathisia. Here, we describe a young female patient with a diagnosis of the moderate depressive episode who developed mandibular dystonia and bruxism with sertraline in the absence of concurrent prescription of medications, which have potential action on the dopaminergic system.…a trial of sertraline was initiated with a morning dose of 50 mg/day…After 15 days at this dosage without adverse effects, the dose was increased to 75 mg/day…Meanwhile, she started having “strange involuntary movements of the face” with “forced deviation of the jaw” to the lateral side which was extremely distressing in nature, lasting for few minutes.
Could your psychiatric drug cause Tardive Dyskinesia (TD)? by Peter Breggin, MD July 14, 2014
Tardive dyskinesia is a potentially dreadful and crippling disorder caused by psychiatric drugs. It often begins with tongue problems. Your tongue feels thick, moves around in your mouth when you don’t want it to, gets caught in your teeth, sticks into your cheek or protrudes from your mouth. Or it can start with your eyes blinking or squinting unexpectedly, your lips puckering or your mouth grimacing in embarrassing ways.
Doctors often fail to recognize tardive dyskinesia. They will blame it on “mental illness” or “nervousness” or explain that it is temporary, when in fact most cases become permanent, especially if the drug is not stopped at the first signs of the disorder.
https://onlinelibrary.wiley.com/doi/10.1002/mds.27691
Should there be less emphasis on levodopa‐induced dyskinesia in Parkinson’s disease? K. R. Chaudhuri, P. Jenner, A.Antonini Movement Disorders Vol. 34, Issue 6 First published:14 April 2019
Soon after the introduction of levodopa in to the treatment of Parkinson’s disease (PD), marked involuntary movements or dyskinesia were identified as a common serious and potentially disabling side effect of treatment…The CALM PD trial…6 years after initiation of treatment, prevalence of dyskinesia was high, at 68% for l-dopa treated patients and 50% for those on Pramipexole.…dyskinesia has not gone away as a problem of clinical significance.
Thank you. Certainly seems very similar. Unfortunately my OH wont really discuss it. He just brushes everything aside but we are seeing so many changes apart from the obvious tremor. He is 72 but raging at an alarming rate 