Hi there. I’m reaching out regarding symptoms my husband is showing. He is not diagnosed nor have we even been to the doctor yet - I have scheduled an appt with his GP in May as a first step. My husband is about to turn 50 and as part of testing done during my current pregnancy, we found out that he is a carrier of Gaucher disease, which confers for him an increased risk of developing PD. I thought nothing of that information until recent changes I’ve seen in him. I’ll try to list them because I would love to hear from those of you with experience as to whether this sounds like your early symptoms.
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Recently he started exhibiting repetitive mouth/jaw movements at rest. I’m not quite sure I would categorize them as a “tremor” because I think of a tremor as faster in nature. To describe it, whenever he is mouth is unoccupied (though it is far worse when he is relaxed or tired) he almost rhythmically slightly opens and closes his jaw. He also sort of cycles through a series of other movements with his mouth, which to me almost feels like an effort to stop the first movement, such as lateralizing his jaw, biting his lips, pursing his lips, and more recently he does this thing where he almost like sucks on his tongue. I’ve pointed this all out to him and he says he’s sort of aware he’s doing it but not always. It’s almost like his mouth/jaw area just never stops moving when he’s relaxed.
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Another thing I’ve noticed is, similarly when we are laying in bed watching TV, he is incredibly restless. He’s constantly repositioning his legs or his arms, or scratching his head or his face. He just has a very hard time settling his body down.
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This is a strange one so I’m very curious to hear if this resonates with anyone - similarly now when we are laying together, I notice a very very strong pulse in his extremities. Like I can feel a throbbing pulse in the tips of his fingers when he has his hand on me. I haven’t asked him about it but I do notice he does things like sort of bends and curls his fingers under from time to time, or puts them behind his head. Does a tremor start like this, as a strong pulsing sensation?
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The last change I’ve seen in him is really bad night sweats, particularly from his head and upper body. His pillow and his side of the bed are almost always wet now when we wake up.
I’m ready to face anything together with him. I’ve lost both my parents to terrible illnesses and I am nothing if not a realist. It’s just so hard to google symptoms and try to figure out if people have experienced these, so I figured I would ask this wonderful community.
Thank you in advance.