Screaming/ Murmuring/ Making Sounds While AsleepĮither bad dreams or medications which barely helped – we couldn’t really tell what caused it, though most doctors did say that it could be a side-effect of the medication.
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PSP patients need constant swallowing exercises, and spitting, to keep drooling under control. This is because of the swallowing trouble with PSP, which makes swallowing saliva difficult. Sadly, PSP sufferers drool involuntarily most of the time. We need to understand their psychology and help them slow down, in the most empathetic way possible. It’s the human instinct to survive that made him do it, I guess, even though we all know it can do more harm than good. Observing my father, I noticed that due to PSP and its swallowing issues, he tried to get as much food down his/her throat as fast as possible. Sadly, they are not doing this intentionally it is the PSP taking over. I am sure many of you might have mistaken this, as I did, for a new habit, maybe you even sternly asked them to sit up straight and complained that they’re not listening when they couldn’t hold their limbs in place even for a minute. I never could get answers from the doctor as to why it would happen, except that it was one of the things that came with PSP. My father would contract both his upper and lower limbs towards his torso all the time, especially while he was sitting.
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While we discuss eye issues, another thing I noticed was blurry vision my father would always get us to clean his glasses, and often complained of blurry vision. Regular Botox injections did bring some temporary relief to my father’s eye. While I am not a doctor, I did learn that it is one of the most difficult changes the patient must adapt to, because sometimes the shut eyelid won’t open without help, or it can keep happening every few seconds. Hence, always watch out for the whizzing sound, it could help you avoid aspiration episodes and, hopefully, pneumonia.Īs PSP weakens the muscles, it also affects the eyes. The whizzing sound that is caused by the constant, silent aspiration is a symptom of a possible chest congestion which, if not treated timely, can lead to pneumonia. Silent aspiration, put simply, is when tiny food particles keep going into the lungs through the windpipe, without showing any obvious signs of it happening. While we may know about aspiration, silent aspiration was rarely discussed until my father’s first pneumonia episode. I offer this list of some of the PSP complexities that can either just make us annoyed or go unnoticed, but are important for us caregivers to understand, to take care of our loved ones more compassionately and, importantly, more accurately. In time, however, we realized how important it was to understand these tiny, yet complex, changes to provide him with better care. Initially, while caregiving for my father, my family didn’t understand this, and we misunderstood a few of his changes as a new physical habit, or overlooked them as irrelevant. So much so, that we often don’t even notice that these change in behavior and physicality can be caused by PSP, and we can become frustrated with our suffering loved one for being difficult and non-cooperative.
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However, because we, along with our doctors, focus mostly on keeping our loved one alive, the tiny, complex changes in the sufferers’ physical and emotional wellbeing are often overlooked. Major complications that come with PSP, such as aspiration, UTIs, and the swallowing troubles that lead to aspiration, are always discussed with our doctors. This article by Niti Vaidya, our newest Peer Supporter in Mumbai, India, covers the small changes that occur with PSP that are often overlooked.