Let’s watch the video below, which features Dr. Brian Kopell, the terrific doctor who peformed my Deep Brain Stimulation surgery, then discuss.
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I have mixed feelings whenI watch this video. Yes, what Dr. Kopell does on a daily basis is wonderful – he certainly deserves a Nobel Prize in Medicine. And my life has improved immensely after he did my DBS surgery two years ago. But I take it personally when he applauds some post-DBS Parkies who go out and “run” triathlons. (This is partially nit-picky on my part; as a triathlete, you swim-bike-run.)
It saddens me because I was a competitive, long distance swimmer and occasional triathlete up until a few years ago. I would still compete in swimming except I’m now dealing with a co-morbidity: I have dysphagia, a condition where my epiglottis (a leaf-shaped flap in the throat that prevents food and water from entering the trachea and the lungs) no longer works the way it’s supposed to. The last few times when I attempted to swim in our town pool, water got into my mouth and started to wend its way down my throat and into my windpipe, causing me to cough vigorously and uncontrollably. I tried swimming with a snorkel in various positions in my mouth, but nothing worked. The last time I tried to swim, I stopped in the middle of the pool and coughed so much that a lifeguard jumped in to rescue me.
So I feel bummed out because I can no longer swim. Nor can I run (arthritis in my left knee) or bike (I can’t balance anymore – everytime I’ve tried to get on a bike I wobble a lot and fall).
Meanwhile, searching the Google-AI internet for information of dysphagia leads to more despressing and scary news. For example,
- Speech-language therapy: A speech-language pathologist (SLP) can create a personalized plan that may include exercises to strengthen swallowing muscles, such as the Lee Silverman Voice Treatment (LSVT) program, and teach strategies to improve the safety and efficiency of your swallow.
- Dietary modifications: The SLP can recommend changes to food and liquid consistency to make swallowing easier, such as pureeing solid foods or thickening liquids.
- Behavioral techniques: You can try holding your head slightly forward while swallowing, taking smaller bites and sips, and “double swallowing” to ensure all food has gone down.
- Medication: Some Parkinson’s medications may help improve swallowing function, but this is not always the case and can vary between individuals. It is important to discuss this with your doctor.
- It is crucial to work with a specialist: A speech-language pathologist can provide a comprehensive evaluation and recommend a treatment plan tailored to your specific needs.
- Dysphagia can worsen: Unlike stroke-related dysphagia, Parkinson’s-related swallowing issues may worsen over time as the disease progresses.
- Severe cases: In severe cases, a doctor may recommend more invasive options, such as a feeding tube or, in some rare situations, surgery, but these are not curative.
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I’ve worked with two speech therapists, and every day now do LSVT and other exercises to strengthen my voice and throat, and they have helped in that if I do them every day I don’t have a problem with Parkinsonian soft voice. But my understanding is that this problem won’t go away and I probably must resign myself to giving up swimming (click here to see this blog’s entries on swimming). I may look into other kinds of exercises to do in a swimming pool, but this whole topic makes me sad.
