A question about facial masking

Evening all,

I’ll explain as briefly as I can my history.
I’m a 37 year old female. In 2015 I was diagnosed with Basilar Migraine caused, in my case, by abnormal brain waves. Due to this condition I have annual check ups with a neurologist.

In 2016, following an operation with general anaesthetic, I started falling over to the side with very little provocation and sort of tipping over as I went round corners. This was alongside some dexterity problems (difficulty putting key in door and turning, dropping things) and misjudging where objects are - so knocking them over instead of picking them up and walking into door frames.

At this point Parkinson’s was briefly discussed, in part due to my family history. There are two relatives who had Parkinson’s, five with MS and others with Essential Tremor, all down the same family line.

By my check up last year the falling had ceased, although I still tip occasionally. However a tremor that had been mild and intermittent for a couple of years had become obvious enough for the neurologist to diagnose Benign Essential Tremor.

In the last year I have begun to move around in my sleep. I’m not doing anything violent. I am always looking for something and this involves me patting the bed and moving around on it. I became fully aware of this when I fell off the side of the bed and woke up but remembered what I’d been doing. I have begun having horrible dreams that often involve aggressive arguing and physical fighting. My husband tells me I have also started to shout out in my sleep.
I have also developed insomnia. I’m still very tired, I’m not churning over thoughts etc - I’m just not asleep.
In addition, for the last few years I have had a problem where I wake up and try and move during the paralysis part of sleep, so I’m trying to sit up and move and talk but I can only sit up a bit and my speech is slurred. This happens more often if I have a nap in the day.

I have also noticed reduced arm swing although this is intermittent and seemingly at random. It also affects both arms, although the right hand side is worse. I’ve developed arm pain and get pins and needles in my hands when I lie down.

Now onto my question… over the last few months I have been aware that my face ‘feels’ funny. My forehead in particular and my mouth sometimes feels stiff to move and my speech occasionally slurrs. I had put the latter down to some fairly invasive dental work that had been ongoing btwn 2015-18.
I’d decided that I was perhaps imaging it until a family member recently asked me if I was ok, because my face seemed ‘surprised’ all the time and my expressions don’t match what I’m saying and she’d found it confusing. She has also said she sometimes has difficulty understanding me because my words seem to run into one another.

I realise that you are not doctors and cannot offer me any real answers about if this is Parkinson’s or not and of course I will be discussing all this with my neurologist.

However, what I’d like to know is whether those of you who have facial masking were aware that something was different? Could you feel it? Did/does it affect your speech etc?

Sorry the post is so long, I felt it best to include everything I thought might be relevant. Thanks for reading.

Hi,
One of the problems with PD is the ling list of possible conditions. We all get some but not all and there doesn’t seem to be any logic in the range we end up with.

My neurologist listed facial masking as one of my markers. I can’t say that I had considered it before I was told but my wife often would ask if I was OK because I looked ‘glum’

I have also found that the facial recognition computer at the airport doesn’t recognize me. That could be caused by the ‘masking’

When I attend the local PD group meeting I see a lot of other faces that remind me of me.

I lost my voice due to throat surgery so can’t blame PD for that but the speech pathologists blame my PD for the slow recovery.

An intensive month of voice exercises has made a good improvement.

Jim

Hi @ErevShelShoshanim, :wave:

Welcome to the forum. :slightly_smiling_face:

Jimdownunder has offered some great advice and as he stated, Parkinson’s comes with a range symptoms and as such, it affects everyone different. What you have described sounds like rigidity which can affect various areas of the body including the face.

In light of your speech problems, you may find speech therapy may help with exercises to keep facial muscles flexible. I’d recommend you see your GP, specialist or Parkinson’s nurse; however, you can call our free and confidential helpline for more information and support on this. Feel free to give us a call on 0808 800 0303 or email us at [email protected].

Best wishes,
Reah
Forum Community Manager

Hi, thanks so much for your reply.

The range of symptoms that different people experience is quite interesting. I must admit I wasn’t overly concerned about what I was experiencing when the neurologist first talked about Parkinson’s because I felt what I was experiencing could be attributed to other things.

The migraine condition in particular complicates things because with that I experience paralysis and slurred speech. There is a definite difference between the speech issues with that though to the stiffness when speaking of late. It’s a different type of slur. Variety is the spice of life eh!

Coincidentally, I’ve also had throat surgery and whilst I didn’t lose my voice, it is now deeper and quite monotone and I seem to run out of air when talking. I had my vocal cords checked after surgery and they were not damaged so they weren’t really sure why my voice was different. Speech therapy didn’t really make a difference for me but I’m pleased to hear you are making progress.

I’ve not been able to find much info about how aware an individual is of their facial masking on the internet so hearing about your experience is very helpful.

Thanks again.

Hi, thanks for your reply. I’m due my annual review with my neurologist (I say ‘my’ but I’ve never seen the same person twice!), just waiting for the appointment letter in the post.

I don’t have a diagnosis of Parkinson’s but it has been flagged as something to “watch for” at previous appointments. Frustratingly I was hoping to be signed off because at my last appointment there were no major changes to report but things seem to have progressed quite a lot this last year.

After reading the forum it’s possible that some other things I’ve been experiencing like coughing when eating and drinking and it out through my nose and body and joint pain, especially at night along with considerable stiffness may also need to be mentioned. These are things I’d just attributed to other conditions I have.

I must admit that I hate going to see doctors etc. I find it really difficult to fully express myself as I feel like an inconvenience and that I won’t be listened too. It took years to get a diagnosis for the Basilar Migraines and it came via lots of being fobbed off and various misdiagnoses. By the time I was diagnosed, by an abnormal EEG, I was really unwell but just so relieved to have something ‘show up’ on a test.

Your reply has given me a bit more confidence for when I try and explain the problem to the neurologist. Thank you.

Hi @ErevShelShoshanim,

I’m really glad you’ve come across information on the forum that you’ve already found helpful. I can completely understand why find you it difficult visiting your doctors, I’m sure this is the case for many people whether they have Parkinson’s or not (including myself!). You may find it useful to make a list of all your symptoms and any questions you have for you to discuss with your GP/neurologist so that you’re able to make the best use of your appointment when it arrives.

In the meantime, you can visit the forum as many times as you wish. :slightly_smiling_face:

Best wishes,
Reah

I would just add to this by saying that once you have enumerated your symptoms to the neurologist, you should politely demand a DATscan. Much of what you describe sounds like it could at least potentially be Parkinsonian, and adding in your family history, I would argue there are good grounds for a DATscan even if only to rule out Parkinson’s.

My GP said to me when I presented for the 3rd or 4th time with a slightly restless hand and was starting to be visibly distressed and saying I was worried it was Parkinson’s that it wasn’t Parkinson’s and that it was probably just an essential tremor. Additionally, prior to my DATscan, the first neurologist I saw said, “it could be [Parkinson’s] but I don’t think it is,” but look how that all turned out! So I wouldn’t take that diagnosis as necessarily correct.

Tell the neurologist that the worry about Parkinson’s is pervading your every thought and stopping you living your life and you want a DATscan to hopefully put your mind at rest.

Incidentally, don’t ever think you are an inconvenience to doctors. they’re there to be quizzed about our health. That’s what we pay them for! Get stuck in and get the answers you need.

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Hi,

thank you for your encouragement, it’s very much appreciated!
I’ve begun to put a list together.

My concern with saying that I’ve become very worried about it as a way to encourage them to give me a DATscan is that they will use that against me and suggest my symptoms are psychological or caused by anxiety. However, realistically at this point I’m having issues that other people are noticing and commenting on such as the face stiffness, disturbed sleep and the swallowing/spluttering issues with drinks in particular coming out of my nose. I think the latter in particular is fairly difficult to explain away by anxiety so I shall just have to be brave and ask!

Thanks again for your help.

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