recently diagnosed with PSP

[Johno12345]

I’m hoping to connect with others who have this disease. I want to learn more about PSP and what it does to my body and functioning how it will affect me later done the track and how it affects other people.

[OllieFisher1]

Hi there. The PSP journey is very different per person. My father initially got diagnosed with Parkinsons which is very common. There was no in between for him. One day last year he just fell, and never came right. He is in resthome now and can only walk a few steps with a flanker, otherwise he is pushed in a wheelchair. One thing I did when I first joined to learn about the progression, was to click on a persons profile and review their first post to their last, and it gives you some examples of a journey and ideas of timeframes. Hope that helps and the best of luck to you.

[Johno12345 in reply to OllieFisher1]

thanks Ollie

[Manonfire]

hi John, sorry to hear of you diagnosis, it would be helpful to know what led to it. My husband was 57, and with him it was his speech which eventually led to him having problems with his balance. He is nine years in and is still mobile but he can’t walk outside so he is housebound unless he has help….keep in touch…take care…

[timbowPSP]

Hi Johno, just recently I cobbled together notes about PSP, and in case these can help you here goes .... I am putting them below. May make you horrified or happy. Best of luck!..... PSP - GENERIC ADVICE Hi .… and welcome! I am 81, male, diagnosed 5yrs ago, and still mobile, socialising, driving, and reminding people PSP = 'Please Stay Positive'. From the start, with no positive advice available I've followed my own active routine: Targeted exercise (Pilates, etc), Diet (basically organic  Mediterranean vegetarian), Supplements (many), and Therapies (Homeopathy, Osteopath, Acupuncture ....). Costs a packet, and does this all this help me? I dunno, but I feel loads better for doing it and 'taking charge'!There are about 8 of PSP variants, all developing at different rates, and it seems that the older you are when this PSP attacks the slower it develops. So do get anyone help YOU/ur Husband/Dad/Mum/etc do whatever is still possible, and achievable ... as TODAY may be the best day of the rest of your/their life! I understand it is on the Parkinson spectrum, and is a form of Motor Neurone. Sounds pretty horrific, and looking ahead I don't envy my carers ….. tho’ right now I am as well as I possibly can be!One of the symptoms of PSP is that speech becomes slower and more difficult to understand, but generally the intelligence remains. ‘As the illness develops mental processing becomes slower, but person still think as adult and draws on a lifetime of experience (most likely using all of that wisdom which comes with it)’. So the way to speak is in a straightforward manner. Take it all day by day. I have recorded my personal experiences/suggestions as 3-A4 pages. Can splatter that all over here ..... or prefer to send you direct if you like to tell me ur email address. Very best wishes to you. TimbowPSP