This Video is on Swallowing and Speech in ... - PSP Association
This Video is on Swallowing and Speech in Atypical Parkinsonism Disorders and was produced by curePSP on the 9th october 2013.
Hi vjessv
Thanks for this link to the video. I watched it some weeks ago, and it was quite informative. Strangely, she did not recommend straws for 90% of her patients (only for those with head tremors). Our speech therapist recommends a straw for my wife with PSP. She says there is often different opinions about such things among the experts!
I suppose one has to experiment with all advice given.
It's just like our neurologist not recommending any medications for PSP, while others will try all sorts of medications despite the side effects.
All the best.
hi strelley hows it going --- ok i hope well mate my neurologist has never offered me anything either not that i want to take a load of stuff that fogs up my brain thats if he could find it in the first place but ii have taken turmeric
to try and see what it does for me the first time i took two tablets i fell over in the garden coincidence or could it have been the turmeric or just me being clumsy anyway i have since taken one tablet at tea time around 6 pm i seem to have gone along ok with that im not swinging on any chandeliers yet mate but who knows these are potent anti inflammatory
& antioxidenti tablets it says on the container that it contains curcumin 526 mg equiv. to 500 mg curuminoids which means nothing to me
anyway mate i will let you know how i got on with them i have since heard two hours after a scripted medication i usually bung mine in all at the same time BP and losec anyway i thought i would just drop you a line to see how things were going along now with mrs strelley ok i hope mate i mean that in all sincerity\\\================================
i thought i would do my joints while i was having a go at the psp peter jones queensland australia psp sufferer or am i using the wrong turmeric]]
Hi Peter
Good to see you're still facing the challenge of PSP with great fortitude. Not sure if the tumeric will improve anything, but quite a few sufferers (usually with CBD) think it has some useful effect. (It has been shown in animal tests to sort of stop the processes that eventaully lead to that tau protein becoming "toxic" - and it is this toxic tau that may be responsible for the death of neurons). Some say you need a 95% level of curcumin in your tumeric supplements to make it beneficial. The problem remains that it's poorly absorbed, is rapidly broken down and eliminated from the body.
I see you keep falling - but do you use a walker or walking frame? A lot of sufferers would not go in the garden because of the many obstacles - but it looks like nothing is going to stop you enjoying as many things as possible.
Thanks for asking about my wife. Since we've just past one year managing not to have any falls (me preventing them!), she's had a good 6 months "plateau" with just a slight slowing in movement (she's mostly in a wheelchair, but can stand and transfer with assistance). She's still only has mild/moderate choking on liquids, but tiredness all day long is constantly present. She's very soft in her voice and often I cannot hear what she says (especially if she's trying to find the words). I am a hard task master and keep her to strict routines, so I organsise something to "occupy" her socially every morning (but she's absolutely spaced out in the afternoons). She appreciates the activities and seeing family and friends. She's a really tough cookie, and so brave.
You take care mate, and watch out for those falls!
All the best
Tony
hi tony thanks for your prompt reply mate and as always your good advice also very pleased to hear that mrs tony has had no falls and is doing quite well being a hard taskmaster is good for psp people i think myself because my wife is the same\\ its just like i was normal if you know what i mean whatever normal is these days ] i will continue on with the turmeric and see what it brings\\ i am tired in the afternoons i think its time for kipping \\
i do use a walker but try and do without it if i can but my feet get so tangled up at times anyway thanks again for your reply say hi and my regards to the tough cookie see yer
mate \\ will watch out for the falls whenever possible
reg
We found straws a godsend for mum. She was very proud and would not have accepted a spouted cup. She was fine about straws and managed well with them because we used them early on as she developed a most peculiar and worrying habit of just holding her mouth wide open and letting drinks gush into her mouth.Near the end we used the non return straws as she was too exhausted to suck s much then.
I Have watched 3 of these video's. Very interesting if only to enable me to talk to med profs with more understanding.
Has anyone a link to any of the notes they are giving out at the lectures. I am keeen to get hold of all the notes on swallowing exercises.
Regards snapper
Hello Snapper
I'm sure if you contact curePSP they would be able to help you with your enquiry.
I too would like the link to these videos and notes. I have seen only the last two recently posted. I did not realize that some people with PSP have no medication at all. This site is so informative. Thanks to all.
Hello Nader
I'm not sure which videos you have seen but these are
very good.
I hope these help.
Movement Balance and Exercise in Atypical Parkinsonism Disorders
youtube.com/watch?v=pDlQauv...
And
Resilience and Coping Strategies in the Face of Atypical Parkinsonism Disorders
Also
Treatment of and Research on Progressive Supranuclear Palsy
CurePSP also did a video on the
Treatment of and Research on Corticobasal Syndrome.
