Knowledge.: smw.ch/content/smw-2011-132... - PSP Association
Knowledge.
Whew, I read it all, honest! I think the most telling sentence is at the very end of the conclusion, " Finally and perhaps most importantly, identification of atypical Parkinsonism may prevent unnecessary iatrogenic harm from ineffective drugs to which these patients typically react very sensitively".
Everything Colin has taken for PSP has had side effects and nothing has helped him. He now only has Glycopyrronium Bromide drops to reduce saliva.....but it doesn't.
There's another one you can use as drops to limit eyes watering. It's also used to limit saliva. Atropine. I found it on an earlier post.
healthunlocked.com/psp/post...
Hope this helps. 
Here are the side effects 
medicinenet.com/atropine-or...
He has taken Atropine. It didn't seem to do much good so the dose was increased and then he was asleep all the time.
X
Keith uses Atropine as mouth drops and I once put it in his eyes by mistake (got muddled up one morning between mouth drops and Optimist eye spray!) I needn't have worried though as I have since discovered that Atropine is also used as eye drops! 😖
Love....Pat xx
That was what stood out for me too. My dad is on some levodopa drugs. I'm assuming he was given them to help determine the diagnosis. Well we went private and got our diagnosis (PSP) and he's still taking these drugs. If they have no effect it rules out classic PD. So what kind of iatrogenic harm will come from this?
Colin was taking Sinemet for a year after diagnosis. It is a levodopa drug. Last year his neurologist said they would not help him and could cause long term irreversible side effects so told me to stop giving them to me. I looked up the side effects on Google and am glad we stopped. When he first started taking them I think they improved his speech, not so much slurring, but I think it might have been wishful thinking. By the time he came off them he was hardly talking at all and now his speech is almost non existent, very occasionally he will surprise me with one word but any speech he has now is in grunts and humming. Very sad!
Thankyou for the heads up, sorry to hear about Colin's troubles.
Keith's neurologist also tried levodopa to basically see if he had any improvement with them, but there was no change unfortunately! It's true they do trial them on patients with these symptoms to rule out PD. His doctor then told him to stop taking them and that's when we were given the diagnosis.
There is no definite test to prove a patient has PSP, unfortunately it isn't till an autopsy is performed that it can be proved!
Keith read about this once and said "I'll have one of those then!" not fully understanding what an autopsy is 😔
Love to you and your Dad....Pat xx
i couldn't get the link to copy properly, so you'll need to type this into Google.
Swallowing, eating difficulties and saliva control. Psp Australia.org
A very interesting article, surely from a medical research point of view they need to discriminate between the different types of the disease. All I think suffers and carers like to know as much as possible. ( not including my husband Ben. PSP suffer, he wants to know nothing about it)
it is from 2011 so they may have updated some approaches.
My dad was the same but I gave him some space then managed to get him to read PSP: Some Answers.
psp.org/file_download/ede9c...
I was trying to get him to start gathering some audiobooks (for when he is bed bound) and use the wii fit for balance exercises, but he wasn't enjoying being told what to do. I waited a day and then got him to read the some answers document, he was straight onto the computer to download all the audiobooks he might like. (Wasn't expecting the Agatha christie collection but there you go) We then got the wii fit set up and he was playing some of the games for an hour at least. I think it's important for him to know exactly what's around the corner so he can better prepare himself for what is to come. As I've been told, another day of exercises is another day not being bed bound. There are eye exercises that may keep him on his feet a bit longer as well but i'm Struggling to find them just now. If anyone has any Plz give me the details. Or the website.
Wow! Way above my pay grade! Why such big words? Didn't understand hardly any thing. The main thing that did come across. All these so called specialists, think that PSP started the day we walked in to their office. Not years before, as we all know! If all this research is going on, WHY, OH WHY, aren't we being asked for our help! One part states, falls occur in the first year! What a load of rubbish. How can anything they say be taken seriously, when they get things SOOOOO wrong!!!!
Lots of love
Heady
