” Don’t cry because it’s over, Smile because it happened..” Dr. Seuss
For those of us living with a chronic illness like Parkinson’s disease even the most mundane of things like getting your teeth cleaned can take on a whole new level of complexity. There is a lot of mental preparation to coordinate appointment to correspond with the time when medications are at their peak of effectiveness. what if we cant drive ourselves? There is something else to coordinate. As I was walking into the dentist office yesterday, after pre-medicating myself for the migraines that are sure to come on after sitting in a room with bright lights glaring right at my eyes- I need my sunglasses next time; I encountered two Parkinson’s patients ahead of me both of whom had severe tremors one with a horrible anterocollis (dystonia bending neck forward- ouch I cant even imagine!) I remembered all the letters I had to write for my patients when going for dental appointments about what medicines to take before and what sedation was safe. Since you guys know its impossible to work in a small confined space like the mouth when someone is shaking all over the place- so sedation is required. Plus when there is severe dystonia of the mouth, face and neck this also adds another level of challenge for the hygienist and patient. Because both of these patients required conscious sedation, to do what I assumed was simple cleaning, they were dismissed for another day when the doctor could see them himself to do work.
What used to be a routine thing for me it has become something I dread because the sheer pain it causes me. Aside from the migraines, the last time I did my teeth cleaning my jaw was so dystonic and sore that I was not able to eat normal for a couple of days. although I took muscle relaxants and Tylenol plus Motrin I ate like a chip monk for a number of days only able to use my two front teeth to chew and bite without triggering excruciating pain and worsening the dystonia which required repeated massaging to loosen up the masseter muscles, platysma, and sternocleidomastoid muscles ( neck and jaw muscles). it is incredible that a simple action like maintaining jaw open for a short period of time can trigger such dystonia. So this time I was savvy, I took not just my migraine medicine but also Tylenol and Motrin preemptively and an extra dose of dopamine agonist. yay ! no pain – although those dang light and music in back ground causes sensory over load due to Azilect predisposing or increasing light sensitivity. Next time I am bringing ear buds and shades!
The new thing this time was a bit more trouble with having head pulled back in chair is tendency to choke with saliva and water pooling and not able to swallow normally- making me think about the difficulties of those of us with severe swallowing problems – may need to adjust head position and up doses of medication plus may also need to be sedated to avoid that feeling of being drowned. I am just glad I don’t need any major procedures at this time. Perhaps may need to do more frequent suctioning or leave suction in place instead of intermittently- to avoid gaging. This is something that needs to be discussed with dentist and oral hygienist before hand.
ever since I had my first surgery many moons ago my jaw was dislocated and with each subsequent surgery this problem has worsen slightly but I believe the culprit for moderate TMJ ( temporal mandibular joint) inflammation and displacement which causes constant clicking of jaw when chewing something hard or if have to open mouth very wide like having teeth cleaned is my neck and jaw dystonia. I am constantly massaging muscles and popping my jaw in place. but this constant dislocation leads to I believe more frequent migraines and fullness and pain in ear. Time for the next intervention. so I have been researching my options. I already take beaucoup of medications. Botox works extremely well for dystonia and headaches but would not want to inject my jaw and make the muscles weaker and more easily to dislocate. Therefore, the approach is a multi-tier – I found exercises to strengthen jaw weak from PD- which I am trying to do as I write…but not as easy as I thought. May have to start with thinner pen because hard to move my jaw side ways or front and backwards at this time. see video in web below:
The 3rd option I may have to incorporate if Botox and exercises do not improve the problem is to get a mouth guard which I am not looking forward to since Dentist suggested I would need to wear all day in order to prevent deterioration of joint. this would entail using a head gear- not sure I like to look more dorky than already am and have more slurring of speech and drooling than what I have at times with PD. However, this may have to be done since I am beginning to have poor alignment of my teeth and develop an overbite – all thanks to oral facial dystonia from my split personality friend the evil Dr. P
Will keep you posted. make sure you don’t neglect your dental hygiene and if having oral facial dystonia and dyskinesia’s seek immediate help before it causes permanent damage.
all rights reserved – Maria De Leon MD
2 thoughts on “Adventures in Dental Hygiene: By Maria De Leon”
Firstly, I’d like to tell you how inspiring and uplifting you are as a PD patient. Your stories are really appreciated and you help so many people in the same situation with insightful advice and tips.
As a mechanical engineering student, I am designing a self-stabilizing handle for a toothbrush specifically for PD patients that’ll hopefully make the experience much smoother. I would really love a feedback from your perspective to come up with the best design possible.
I wish you the best in your endeavors. Keep up your positive spirit.
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so excited- love to chat some more- email me at email@example.com – best wishes!