I am Maria

[Adobongbaboy]

hi there ! Ian Maria Hipolito’s and was a nurse by professio I am a Filipino but presently residing at 113 Fordham Road,Ford estate,Sunderland, was recently dAnosed as Having this disease , psp…..

[Bergenser]

Dear Maria

I am sorry to hear you have PSP, it really is a life altering diagnosis.

I am really glad you are on this forum - your perspective will be so useful to help others, particularly with your nursing background as well.

The group here will be ever so supportive and helpful if you have questions, or just need to rage against the disease - or if you simply want to know you are not alone. There is a lot of hope and love 🌻🩷.

I am "Bergenser" (i.e. from Bergen in Norway) also living in the UK (Essex/Hertfordshire border) - and wife and carer to G who was diagnosed with PSP in June 2021.

We have found it useful to get as much knowledge about PSP as we can, and sign up to research studies where possible. There is no sugar coating it - life with PSP is hard and unpredictable - but finding joy is still the goal for every day.

One thing - could I suggest you edit your post to remove some personal details (exact address, last name) - we don't need is and it's better to keep your identity safe.

With a virtual hug and best wishes - Bergenser xx 🤗

[Adobongbaboy in reply to Bergenser]

Thank you bbergenser

[David750]

Hi Maria, Bergenser is right in all respects. If you haven't already done so I would advise you phone the PSPA support Helpline and register yourself with them. pspassociation.org.uk They will, through their Health Care Navigator for your area, advise you of all the support available in your area. It makes a great difference, as I found when looking after my wife, to be able to talk to someone who understands. If speech is difficult for you, then email - [e-mail].

All my very best wishes

[PineEater]

AdobongbaboyWhat medicines are you on for PSP? Are they helpful? Best wishes

[DebHep]

Hi Maria - so sorry to hear you have been diagnosed with PSP my mum also lives in the Sunderland area & has PSP. She has had great support from the Parkinsons nurses at Sunderland Royal & the team at St Benedicts Hospice they have provided support & information to help engage other services such as Dietitian, Speech & Language & Physio as well as adaptions to her home.

Hopefully you will be under the care of the same staff as they have been wonderful.

Deb