Does anyone have any imput/comment on this? As everyone says, diagnosis doesn't change anything, but it helps to structure the future.

[mommajo]

My husband was diagnosed with Agent Orange induced Parkinson's in 2009. In December 2013, the neuro said that she felt there might be some conmorbitant PSP (involuntary eyes closing/unable to open, legs involuntarily straightening out, stiff as a board). The sinemet, ropinerole, and entacapone still seem to alleviate the symptoms they are meant for, but of course have no effect on the bradykinesia and its ultimate falls. He has been in an electric wheelchair for 3 years, but that is getting dicey, because his reduced cognition doesn't tell him to stop driving when his eyes close. His falls are forward, not back, and occur when his feet freeze while he's in motion, or any time he tries to step backwards. Of course his speech is barely intelligible, and his handwriting is unreadable. Does that sound anything like the PSP-P I've seen you talking about?

[SharonAB]

Yes,

Regards, Alana - Western Australia

[Hidden]

Hi mommajo

Your symptom description (as Alana has noted) may well be PSP-P. Just a few thoughts (without really knowing all the circumstances). Your husband may have developed a Parkinson-like condition with or without exposure to Agent Orange (since the evidence for this has been described as "suggestive but limited").

While there are eye problems in Parkinson's and PSP-P they are not the same problems as in PSP-RS (the classical disease - which shows vertical gaze palsy and slow saccades). Has he been diagnosed with vertical gaze palsy?

Sadly, some of the medication taken for Parkinson's can (but not always) show some side effects that may be part of the PSP range of symptoms. Sinemet itself can cause (leg) muscle stiffness. Taking entacapone to help with the sinemet availability can cause dizziness (and thus falls). Ropinerol (often used for restless legs in Parkinson's) can also cause leg muscle stiffness. All such medications have to be assessed regularly for benefit/effects versus side effects.

Many of the symptoms of idiopathic Parkinson's do show up also with PSP-P, and even neurologists have problems with the overlap of these and similar conditions. Sinemet benefits will usually be time limited in PSP-P but continue to be useful in Parkinson's for longer periods.

Cheers

T.

[mommajo]

Thanks guys. The eye problems are pretty much limited to involuntary eye closing, with occasional double vision...no vertical gaze palsy. His ropinerole was decreased from 4mg 3x to 2mg 3x due to a sudden burst of impulsive behavior...the decrease worked. We see the neuro again in June...now I have an idea of some questions to ask her. He does have the fluctuating blood pressure causing some dizziness, but his falls are mainly from his feet sticking, and postural instability. I understand that Parkinson's can be idiopathic, but when you've been doused with AO, and subsequently have hairy cell leukemia AND parkinson's (hairy cell is particularly uncommon)...well, the odds start tilting...and the government is caring for his medical expenses (a true blessing!).

[jimandsharynp in reply to mommajo]

Mommajo, Closing the eyes and double vision are seen in other brain diseases than PSP. Closing the eyes could be because the patient is having double vision. My wife use to close one eye at times because of double vision. The blink rate goes down with these diseases so the eyes become very dry. The patients often have a staring look. Dry eyes can, in turn, cause the eyes to water to get moist. I used drops and gels for my wife's eyes to sooth and help with these conditions. Vertical gaze palsy and not necessarily closed eyes are a better indication of PSP. Jimbo

[jimandsharynp]

MommaJo, Yes that sounds like PSP but one can't be sure. Many of the brain diseases have such similar symptoms it is often hard to tell which is which. I'm reminded of Jannet Edmunson who wrote the book "Finding Meaning With Charles" her husband was diagnosed with one disease (CBD or PSP) but upon autopsy of the brain they diagnosed the opposite of the two diseases (CBD or PSP). I can't remember the order exactly. My wife just passed away from a diagnosis of PSP. I've donated her brain to Mayo Clinic (they are researching PSP and other diseases) and they will give me the correct diagnosis. The distinctive symptom for PSP is vertical gaze palsy. That means the patient has issues with vertical eye movements. With my dear wife I found that if you put your finger in front of her and move it up and down at some point she would have to move their head to follow the finger instead of just the eyes. Normal people can follow quite a bit up and down without moving their head. You'll have to ask your neurologist about this. It is also important to remember that these diseases are not a one-size-fits-all. Patients can have different symptoms or different levels of a symptom (bad or slightly). Progression is different in each patient. When each symptom arrives, if at all, is different many times. Bottom line there are many unpredictable things about these diseases including PSP. Stay on this site it is very helpful. Jimbo

[jillannf6]

sorry to hear of your husbands diagnosis or lack of it

i have PSP and have the slow sort a s i am silt here 3and half years since dxD

lol Jil;.

[GeorgiaGirl]

Absolutely! Sounds just like my Mother when she was first diagnosed six years ago.

[jillannf6]

yes it does seem like PSP to me iwas dxd 3and half year sago now and am still upright most of the time apart from when if all over )(nabalanc terrible `) and usually fwd falls to the right;:: 1 bacjward fall a day now

see emy introductory stuff about me and mhy symptoms

lol jill