Parkinson’s contains many surprises. One of my least favorite is choking. In fact until this Shabbat it had been pretty much out of my mind for nearly two years. I had to look back to my blog for the last reference to it.
In March 2023, I wrote the following:
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Choking: This is a major problem for many PD sufferers (see link for more info) and it seems to be my main symptom at the moment – it sadly seems to be my super-hero item. I have choked a lot recently. Once in my sleep (guilty party was a tiny piece of apple which after what felt like an hour of retching came up), once at a wedding (we had to leave), once at a gathering of friends (the guilty party was a piece of carrot that I ended up sending across the room) and a couple of times at the dinner table, last time a few days ago after which I spent most of the coming days and nights coughing violently (and knock on impact on feeling lightheaded, muscle pain in my stomach/chest, loss of voice and headaches). I am waiting for a FEES test (fiberoptic endoscopic evaluation of swallowing) in ten days having seen the specialist and we will take it from there. Until then the goat yogurt and banana producing companies are having a bumper time.
The solution is mainly changes to behavior – being far more careful how, what and when I eat (so apparently eating cereal whilst talking on the phone and running after the dog is not a good idea), chewing is recommended, concentrating on the food and exercise of the muscles involved in swallowing.
My relationship with food has continued to change…..before all of this, my only restriction was eating Kosher (which is a pretty big one especially when travelling)…now, I can’t smell anything, my taste buds are dialed back a large way (I have mentioned these before) and now eating is something I have to do with full concentration and on soft stuff ☹ …
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Since then I had the FEES test mentioned above and it showed I had a swallowing challenge, unsurprisingly. I have also taken as many precautions as possible (within reason) and have had very few issues. Until Friday night when I had a lucky escape…in my general phase of overconfidence I went at the bread (spelt of course) with gusto and I felt a small bit of it head the wrong way and the choking set it.
The good news is I was relatively calm, deep breathes, no panic and after a little while it settled down.
It was just a little reminder – as if I needed it – that it was there. Now I have the after effects of all the coughing and my insides hurt but it was still counted a near miss. I will be fine and it is probably good to have a near miss as it will raise my awareness for the issue and I will be more on guard … for a while at least.
Why raise this?
According to one study – “asphyxia was found to be a common cause of death amongst PD patients, in three out of 16 patients” – other studies say similar things but whatever the stats it is clearly a serious issue for PD patients.
For PD patients it is important to be aware of swallowing challenges and seek help such as through a speech or swallow expert.
For PD family members – having good first aid is probably a good idea
For other people – it is a reminder of how diverse the symptoms of a disease usually known the shaking and tremor are.
Always need to be alert – seemingly prevention is the most important thing in PD – avoiding falls, preventing yourself from choking, not putting yourself into a situation of too much stress. It is hard to live life always on the alert and we have to live but it is truly the main thing. Finding the balance is something I am still learning 5 years in but the key is to avoid the stupidity…and…
On that note – I had another lucky near miss on Friday…give you a clue…stairs and writing a whatsapp = bad ankle. Luckily nothing serious but just another warning. Let’s all take maximum care.
