I´m new here.

[Purrlie]

Hello everyone. I am so glad to have stumbled (no pun intended!) on the PSP Association. My husband has been diagnosed with PSP just recently but has probably been experiencing various symptoms for at least 2 or 3 years. His diagnosis is complicated by what our neurologist called "a soup of medications" that he was taking for other chronic conditions. The biggest shock was a sudden and rapid onset of dysphagia about 6 weeks ago, and now his speech is slurred almost all the time, and he is having difficulty with excessive saliva. I am very glad to read the tips so many others have posted. Thank you!

[timbowPSP]

Hello Purrlie, and welcome to this virtual group of hopers and seekers! I was diagnosed 2.5 yrs ago and am still driving and active and involved in life, but balance and many other things have started to fray round the edges. Therapies, exercises and diet are all important to me especially the cranial osteopathy.I have written up my journey (so far 3-A4 pages of hints, tips and options). Happy to post it here (tho it takes a lot of space) or better can send it to you direct if you give me ur email address. I am [e-mail].

A big hug, and my best wishes ...... Timbow

[Purrlie in reply to timbowPSP]

Many thanks for your reply, Tim. Will send you my email. Purrlie

[ConcernedEx]

Welcome to your new safe haven to ask, inquire, read, let your feelings be known about either having PSP OR CARING for someone who has this most dreadful disease.

Things happen at different times- it’s not easy to witness - but always reach out when you need a shoulder.

[Purrlie in reply to ConcernedEx]

Many thanks for your kind words. Much appreciated.

[Caro2132]

Hi Purrlie

Sorry you have to join us, but this site is a life saver for us carers, spouses, children etc.

Any question can be answered and feel free to vent!

So much information about help etc. don’t be shy. We are a world wide community, and no holds barred.

All the best to you in this journey

Caroline

(Northern California)

[Purrlie in reply to Caro2132]

Hi Caroline,

Many thanks for your reply and support. We are in southeastern Ontario, Canada.

[AnneandChris]

Hello there

So sorry you've the need to join this forum. The progress of this devastating disease varies from individual to individual and within the variants of PSP.

It also depends on where you live as to what is available for healthcare etc.

There is a wealth of experience here from both those with PSP and more frequently from their nearest and dearest, their carers. Also, from folk like me who have now completed their journey. So please do not hesitate to ask and keep on keeping on.

Anne

[Purrlie in reply to AnneandChris]

Hello Anne,

Thank you for reaching out. My sincere sympathies to you.

Purrlie

[AnneandChris in reply to Purrlie]

Thank you so much our journey ended at Christmas 2019 and I, like many others on this site, am trying to adapt to life with out my hudbsnd of 53 years. However, many of us with past experience are here to help where we can. Keep on keeping on x

[journeyofjoy in reply to AnneandChris]

Hi Anne, How are you doing these days? We both ended our journeys (and started this new one) at Christmas 2019. I just checked in to the site today after a long absence. The journey of living without our husbands is a long and winding road. In many ways, it's easier now that a year has past. However, with covid, I haven't had to face things without him that I would have by now - such as going to social events without him (because I haven't been to any social events). I suppose this will be a hurdle we'll have to learn to deal with when the time comes. I hope you are well. Would love to know how you're doing.Joy

[ncgardener799]

Hi Purrlie, This site is full of suggestions, information and practical knowledge. We all have the same goal , help each other and those we care for. Wonderful support !! Pat, North Carolina ,USA

[Purrlie in reply to ncgardener799]

Hello Pat,

I so appreciate all the messages of support, many thanks.

Purrlie