I was at a support group last night for Frontal Temporal Dementia. Although my husband has been diagnosed with PSP, this group was the most appropriate I could find. At this meeting , the moderator said there is a sub-type of PSP that has NO eye involvement. This does not seem correct to me. Anyone know about this?
My husband has been difficult to definitively diagnose. We were told it was most likely one of the Parkinson Syndromes and MAyo labeled it PSP. He does not follow commands, making it difficult to check eye movements. He was examined recently by a neuro ophthalmologist because the Veterans Hospital was questioning the diagnosis. He said if he were a betting man, he would bet it IS PSP. As I watch him now, I do notice he tends to not look down, but that’s it.
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Karynleitner
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I have never heard of sub-groups to PSP, varied symptoms yes. For full disclosure I have never looked into anything like a sub-group for this disease.
Ron
They are PSP-Richardson syndrome (about 55% of all PSP), PSP-parkinsonism (30%), PSP-frontal dementia (5%), PSP-ocular motor (1%), PSP- pure akinesia with gait freezing (1%), PSP-corticobasal syndrome (1%), PSP-progressive non-fluent aphasia (1%), and PSP-cerebellar (<1%). The remaining few percent are combinations of these or still-unrecognized forms.
This information was from Christine47 2 years ago.
My guy hit many but not all of the symptoms, and some came and then left for good. He developed the inability to track with his eyes about midstage, which made it impossible for him to read, but was most perturbed by his brain's intermittent inability to process the visual information, which would happen suddenly and to the extent he'd exclaim that he'd gone blind entirely. I would ask him to describe what was going on, what was in front of him, and it would come back. It scared him so much. Then it stopped happening.
Our member Luis Rodicio drew up a table one time (from authentic websites) listing the PSP variants and related symptoms. Robin Riddle may have something similar. I'll see if I can locate it....
Eye movement issues, and in particular Vertical Gaze Palsy, are a hallmark sign and diagnostic part of PSP along with the early, backward falls. It is so important that it was included in the name.
That said, it is to be recognized that everyone's journey is different. Some may develop the eye movement issues later or have them to varying degrees. This variability is what can make diagnosis so difficult.
I first noticed my falls in 2016 and became concerned in 2017. I noticed I was having a hard time looking up and down, in 2018, when I couldn't follow the track of birds and planes in the sky, I increasingly dropped food on me as I lost sight of my fork and I lost track of my dog when she was at my feet. However, I didn't report it to my GP and I can't tell you why I didn't, though I was having quarterly appointments. I just happened to have an eye exam in February of this year when it was noticed by the ophthalmologist. I had already seen a Neurologist team in 2017 but they thought it might be Multiple Sclerosis and wanted to see how it changed, before any confirmation of MS, as my MRI didn't show the MS lesions. I was finally referred by my GP, through the Ophthalmologist recommendations, to a Neurologist that specialized in MS and other movement disorders. There were other signs and symptoms that popped up since 2016, but the falls and eye movement were the hallmark classic for diagnosis.
Thank you, I am aware that the eye movement is one of the ways PSP is definitively diagnosed. That’s why I have questioned a Sub-type with no eye involvement. I think she may just be misinformed. My husband may now have a small bit of difficulty , but very little. This has caused neurologists to question the diagnosis . I am however, thankful that he can enjoy watching Television etc. His early symptoms included backward falls, urinary urgency and a change in his emotional presence.
Thank you for taking the time to reply. May good luck and good health come your way .💙
I see by some of the replies some one has discussed the sub-groups or pheno-types of PSP. There 8 sub-groups... so far. Luis does have a document listing these groups. If I can the video from the movement disorders clinic in Florida, I'll post it. It explains the variants in detail .
My husband, diagnosed with psp was recently approved by Medicare for occupational therapy. Apparently the therapist does not seem to know that my husband cannot see down to his plate. They tell me not to hold the fork or spoon or assist him at meals. I do it anyway, put the fork in his hand, spear the piece and let him lift it to his mouth.
We were not aware of sub-categories of PSP, it would be helpful to know.
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