I note that when responding to a question with her head my wife's head nod is VERY slight. Her voice is pretty good but somehow coordination to move the head more than slightly is difficult. The head will move but the brain seems to reduce the movements greatly. Anyone else experience this? It's sort of like the softeness in the PSP patients voice and the small handwritting. It's like everything is reduced greatly. Anyone else notice this?
Jimbo
Jimbo:
Yes, I believe I know exactly what you're talking about. My daughter who lives with me has started pointing out this behavior to me with some frequency. If I respond to a question of her's with a 'nod' for yes, or a 'shake back and forth', I know I feel myself doing it, but she asks me again, stating I didn't respond. Same way with voice volume; it's coming down.
My daughter who lives on campus comes home for the weekends only once or twice a month, really notices it because of time/distance, or other small changes that my daughter who lives with me has gotten used to.
I 'feel' it too. Can describe it in one word-weakness. It just feels like it takes more effort than before to manage/control my fine/large motor skills. It has been occurring subtly, over a period of time.
May I ask again, how long your wife has had PSP?
Judy
Judy, Since the U of F neurologist says that PSP's first symptom is falls we think Sharyn has had PSP about three years. It's moving very slowly, thank God. Next visit to U of F next week and it will be interesting to see what they think since seeing her four months ago. Sharyn first dignosed with balance issues then PD then PSP (a familiar path). We are thankful for each day!
Jimbo
I'm so glad for her and you; it does seem she's on a slower course than others.
Are either or both of you a little apprehensive about your visit to U of F next week after 4 months? I think I'd might be because...we're human?
I see my Neuro again on Thursday. He keeps me on a very short leash; about every 4 weeks.
Certainly wishing all the luck to both of you during your visit & get the best news possible; it's stable or going ever so slowly.
Fondly,
Judy
We aren't aprehensive because we know even if the report this time is good it doesn't mean much in the overall picture of PSP progression. We will be thankful and move ahead no matter the results. We'll also have another swallow test and will be interested in those results.
Jimbo
I understand, and if you don't mind, will you share the results?
Judy
Yes
Yes, my husband's head nodding is the same way, really need to be paying attention to catch it sometimes.
joan
Yes mums was the same-actually she couldn't nod when we started trying that form of communication, she could very slightly turn for a no but you had to watch for it. We resorted to blinks which worked right to the end. They were really reliable as most of the time mum rarely blinked either so if she blinked soon after a question we knew it was controlled and deliberate.
My husband doesn't nod at alone shows signs through hands for yes or no
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