Hello - I’m a new member and first post.

[bst23]

Hello! My name is Allan. A 67 year old male living with my wife Julie who has been diagnosed with PSP. I’m new to this group and having recently moved to a bungalow (no stairs) to try to help with my wife’s awful condition. I don’t have a great deal of time to be too involved with many things generally anymore, but I’m trying to source help from organisations and other bodies - particularly trying to get help from Carers etc. It’s all very daunting and to be honest, everything is difficult and demanding, especially as the PSP condition is having awful affects on my lovely wife, which understandably impacts on everything. From someone who was outgoing, vibrant, busy, always on the go and full of fun, this condition is slowly eating away at everything positive in her - and our lives. Sorry if this post isn’t very uplifting but all I can say is anyone who has this awful disease (and their family, loved ones and friends) has my sincere sympathy and I wish you strength, love, best wishes and hope that you can get lots of help to cope with all the horrible life changing issues.

[45purple]

Welcome to the group. You get lots of support from this group and the people in it with help and advice. My husband has CBD.💜

[bst23 in reply to 45purple]

Thank you. Sorry to hear about your husband’s condition. Best wishes.

[Joluu]

Welcome to the group it's a great place to learn and get support but so sorry you're wife has been diagnosed with this horrible diseas

[bst23 in reply to Joluu]

Hello - and thank you for your kind wishes. Best wishes to you.

[Hummingbird_]

My heart goes out to you bst23 (Allan & Julie), I am a former F/T carer of my late Step-Dad who had PSP & CBD.

My suggestion would be to contact the pspa-helpline to at least get registered with them if you haven't already done so.

Your GP can arrange referrals for SLT/OT/Dietician/Physio/Continence Nurse/District Nurses - you may not need all of them but it's worth knowing where to go to if you should need them, especially if you want to apply for CHC (Free funding for care! Although it's really hard to claim). It's worth contacting the Neurology department to ask for PSP specific information (they may or may not have any depending which Hospital Trust you come under). Local Hospices are also a great help for respite care/occasional over night care/day care etc ... although their services are in great demand. Hospices are not just for end of life care!

PSPA have a dedicated Helpline, they also have 'Local Groups' (some not so local unfortunately) and online groups. There are also several reputable online 'chat' groups (Facebook) dedicated to PSP/CBD ... these are not run by professionals, just a group of people who are in/or have been in a similar situation.

Sorry I can't be of more help to you. Sending love and strength.

Hummingbird

[bst23 in reply to Hummingbird_]

Hello - and sincere thanks to you for such a detailed and very welcome reply. Your kind advice is very much appreciated. I’m still trying to find my way around all the various aspects of health care and support for Julie (and for myself to be honest). So far things have been a bit like wading through treacle with certain things, but I will definitely follow up some of your suggestions - thank you. So sorry to hear of your own personal experience with these awful diseases - it’s so nice that you’re offering your help, empathy and advice. Love and best wishes. Allan

[Kelmisty]

Hi Allan,

Welcome to the group no one wants to be in but I think it helps to have the potential to ask and share.

My Mum has PSP and CBD active at the same time, she is roughly 4.5 years in and things are developing slowly, life is getting tougher by the week.

Some great advice from others below, but be prepared to fight/push for it not all areas are as good as others.

You will become the expert.

X

[bst23 in reply to Kelmisty]

Hello. Definitely a group I’m sure no one really wants to be in....

So sorry to hear of your own awful involvement. I can only say I hope your Mum goes on ok all things considered, though I appreciate the difficulties, sadness and heartache involved for you.

Thanks for your advice, I’m already finding certain areas (help, advice are presenting themselves as an uphill battle and almost like a test of strength and perseverance.

As you will no doubt appreciate, caring for someone with these diseases can rapidly drain your strength and well being - and as you say, certainly makes life tougher.

Take care, love and best wishes, Allan.

[Kelmisty in reply to bst23]

Yes, I’ve been looking after my Mum for two years the majority so far with an unknown illness. But have known why for 7 months, it would sometimes easier if I didn’t as I might not worry as much.

I also work full time which is draining, we do now have a carer twice a day every day and I go to Mums five times a week minimum.

Accept any help you can get as the journey can be longer than you think.

[bst23 in reply to Kelmisty]

thanks for replying. Already I know how difficult things are and can sympathise with your situation as I’ve now given up work completely, though I’d reduced it to part time work some time ago.

One thing I’m trying to get is help from Carers.

So far I’ve hit brick walls.

The only help I’ve managed to get ‘on the ground’ is a Sitting Service, where someone from the Council sits in with my wife, but it’s only up to a maximum of four hours every three weeks, which is welcome but in all honesty no where near enough.

I’m trying to find out how to get Carers or Sitters in for at least one day a week, but as I say, so far, no joy. Wish me luck....

Best wishes with your own journey, you have my empathy and sympathy..

[lunarquasar]

Hi Allan welcome to this site which is a great help when you need information. I have been a carer for my wife since 2016 she has CBD. I think your first port of call should be your local council and ask for a care assessment for your wife and a carers assessment for yourself.

Once you have a Social worker involved you can then see where you are regarding who pays for carer and how much. You are entitled to a Take a Break allowance from your council, I get 3 hrs a week. As my wife's condition worsened I was allocated 5 hrs care a week which eventually increased to 18hrs. Your wife's care cost will be means tested but only anything in her name or joint names.

I have managed to get CHC funding after two attempts so everything is now paid for by the NHS unfortunately things have to get really bad to achieve this, I now have 4 visits a day seven days a week.

Best wishes Barrie

[bst23 in reply to lunarquasar]

hi Barrie. Sorry to hear about your wife’s condition, and your caring role, I do genuinely sympathise but thank you for sharing your advice.

I must admit to being a bit of a novice to things like benefits and allowances etc, but I’m going to have to hit the ground running it seems.

I will contact the council and try and get the Carers assessments carried out and try to get a social worker involved if possible.

I’d never heard of Take a Break allowance or CHC funding, but I’ll look into these too.

I have been in touch with someone from the local NHS who has offered some advice including pointing me to CarersPlus who I’ve also contacted recently, but there seems to be so many different strands to the ‘systems’, but so far, nothing much seems to be happening actually on the ground, if you know what I mean...

It would be nice to have someone like a social worker to coordinate things, but I’ll keep checking things out.

I desperately need some respite or Carers help, so it’s good to know there may be something out there, hopefully.

Thanks again for sharing your advice.

Take care and best wishes,

Allan.

[lunarquasar in reply to bst23]

Hi Allan have a look at the Care to be Different web site lots of information on there regarding CHC, although perhaps you are not at that stage. Certainly the PSPA organisation have loads of information which would be of help and a help line you can contact.

Best wishes and try to keep positive although I know its very difficult.

Barrie

[bst23 in reply to lunarquasar]

Thanks again Barrie. I’ll check that site out, thanks for pointing me in that direction. I do try and keep positive but I confess it certainly gets difficult, as everyone else on this site will know.

Thank you for your advice and replies.

Best wishes, Allan

[timbowPSP]

Allan, I sure sympathise with the predicament you two are in. I am 80+ and diagnosed PSP 5 yrs ago. No advice or suggestions! So I put myself on a regime of targeted exercises, organic Mediterranean diet, health supplements and certain therapies. So far so good, but now my walking/mobolity is going downhill.

I have done a review of my changes, suggestions, and advice from my past few years in 3xA4 pages. If you like am happy to send you, but pls tell me ur email address .... as it better not to splatter it all over here!

You know that PSP really stands for Please Stay Positive! Tell your lovely wife.

Very best wishes TimbowPSP

[bst23 in reply to timbowPSP]

thank you for your lovely positive reply. I hope you continue to stay positive and keep fighting this disease. I’m wading through treacle trying to find help and advice, so I would be very grateful if you would send me the A4 advice please. Thank you.

PSP = Please Stay Positive...!

That’s a great statement and my wife says thank you for this, it certainly is difficult at times, but we are going to try and stay positive.

Take care & Best wishes, Allan

[timbowPSP in reply to bst23]

Allan, I will send you the stuf with attachment when I get ur email address.

BTW I don't feel like I am''fighting' a disease ..... more like accepting it as it is, and trying to stay as healthy and mobile as I can, within the limits. I am aware that there is a wee noose around my balls, so I am likely to be pulled down sooner or later. It's' like a dance with death so I'll enjoy the ballroom while I can with my partner/carer! And I have no fear of death .... but not so sure about the route there.

Best Tim

[bst23 in reply to timbowPSP]

you seem to have a great positive attitude Tim, I certainly wish you well and keep your positivity. Best wishes, Allan

[daddyt]

Welcome to the group no one wants to belong too, but sure glad it's here.

You never have to apologies here. Everyone is supportive... they get it.

Tim

[bst23 in reply to daddyt]

Thanks for your reply and advice. It’s nice to hear and already feel the support, thanks to all...

[timbowPSP]

ALLAN, I THINK I'VE NOT YET SENT YOU that info promised. Pls confirm and I will do so when I can. Am starting to forget do do what I promised! And just now crazy busy with selling house, and today with birthday No 81 and a few friends ..... you are all very welcome to join us for coffee in Malvern 10-.30 to 12 today! Timbow

[bst23 in reply to timbowPSP]

Hi Timbow. You sent an attachment that I couldn’t open, but no problem, enjoy your birthday - congratulations - and get back to me whenever you feel. Thanks Allan