Husband with PSP

[MontyLucy]

I am a Carer for my husband who has been diagnosed with this condition in November 2023 (PSP)

[messier]

Welcome to this forum which I hope you will find as helpful as I have. You can express your frustrations and ask any questions! Do use the search function to look at old posts too as there's some great advice.It helps others to advise if you put something in your profile about where in the world you are since health care systems are so different.

[Bergenser]

Welcome, sorry to hear your husband has PSP. This forum is here to help. My husband was diagnosed with PSP June 2021. I think we both felt quite dazed for a long while and didn't want to dwell on it, instead we tried to travel and enjoy time together and avoid thinking too far ahead. You might want to just dip in occasionally and avoid reading too far ahead - or you might want to know as much as possible - that's entirely your choice.

Please don't ever hesitate to share what's on your mind - you are not alone and there is much care and (virtual) hugs to be shared. 🌻🫂

[Ratcliffe]

Hello, and welcome to the forum. You have taken steps to get help, which is what we are all here for. Sorry you need to join us.

This is a great place to ask anything, it doesn’t matter how daft a question it may feel, or just to let it all out if you are having a bad day.

As carers and ex carers, and people who have PSP or CBD we all know how it feels and hopefully our experiences can make your lives easier to manage.

[MontyLucy in reply to Ratcliffe]

Thank you

[Kasenda]

Please contact the PSP association for their help and join a support group near you if there is one. Life with PSP can be easier when you reach out and know you are not on your own.

[MontyLucy in reply to Kasenda]

Thank you I have recently joined the group

[Rose1sunflower]

Welcome to this forum but sorry you have had to join.

I’ve found this really useful, when I’ve posed questions I’ve always received really helpful answers from people who are experiencing the same thing and you don’t have to explain what PSP is!

Likewise the regional video link group is useful too.

[Goodact]

You found this forum very soon after diagnosis so that really good. It is a dreadful disease and you will find alot of very useful information here. Everyone has a different journey. Please post your location I am in Perth Western Australia and we made some good friends who were only 30 minutes away who helped enormously. Plan some travel or special events immediately don't get too bogged down with appointments we have a grief counsellor come to our home once a fortnight and that is very helpful I spend all my government funding on physio and hydrotherapy which really helps with the progression look into voice banking netter to do it immediately it is too late for my partner now and communication is an enormous hurdle check out you tube Some really good stuff there Visit the dentist and change appointments to 3 months Start looking for equipment second hand to bring down costs you will need it down the track ask anything people are so kind and helpful on this site get all legal documents sorted immediately will power of attorney health directive ect. Very important! Avoid general anaesthetic at all cost! Don't expect doctors to do much for educate yourself and look after yourself

[Sun-flowerwearer]

hello, I’m in the UK too with a husband with PSP diagnosed in May 2023. He is 63 and progressed very rapidly. I am sorry to hear you have both received this diagnosis. I say both of you as you will be travelling this journey together. I wish I’d videoed my husband more when he could talk and walk so I could play those videos back on my phone. Look at the PSPA website, phone them and they will allocate a dedicated contact you can ring and talk to for advice and support. They run newly diagnosed zoom meetings for both your husband and yourself. Ask for a dedicated GP at your local surgery as it helps to have someone that can see you regularly and make the right referrals. Ask for OT and SALT now if not seen already so you can be ahead of the progression. I found OT the very best support early on providing aids and ideas for helping keep my husband safe at home and in the uk all the kit is free. We have hospital bed, air flow mattress, wheelchair, ramps, stools, bedding.. read past oosts as ooodles of great information. Ask ask ask away and people will share their experiences. It’s a comfort for me to know others are dealing with the same emotional rollercoaster.