diagnosis cbd and psp

[Karen1981]

mum has been diagnosed with CBD and PSP. We’re heartbroken. At least we can get some proper advice and help now but it doesn’t make it any easier x

[Kelmisty]

My Mum has CBD and PSP, she’s 71. Feel free to ask questions. X

[Karen1981 in reply to Kelmisty]

Ty x

Sorry to hear your going through the same x

How does your mum get looked after if you don’t mind me asking x

My mum lives alone (currently in intermediate care following hospital admission) I just don’t know what to do for the best. I can’t not work as I have bills to pay or would move her in with us but trying to do both would be too much.

She wants to return to living on her own with support rather than a nursing home and we had thought about a level access apartment with an electric chair

Any advice or tips are welcomed x

[Kelmisty in reply to Karen1981]

Well, Mum is estimated 7 years into her journey. She was diagnosed just over two years ago.

I moved her to a extra care flat two years ago it started with 4 care visits a day, with me doing shopping, sorting, picking her up off the floor when needed too, this increased over 18 months to being left alone for 3 hours a day, even then the falls were happening and I was working full time. Mum had the electric chair, walkers, carers but couldn’t be left alone- all the time she could walk she would even when it resulted in a fall. I was advised all the time she can stand she will try to walk and fall. As they have no risk filters.

Last summer, we needed up move mum to a nursing home, I couldn’t cope anymore. Looking after two homes, working full time and every emergency/issue falling to me I was exhausted. I had to refuse to accept her back into my care to get more support as they couldn’t discharge her without appropriate care in place.

Mum never wanted to go to a nursing home, but the combination of two illnesses means she needs 24/7 supervision, she hates being in a nursing home, understands why. But even in the last six months her needs have increased greatly,, she can’t walk without two people, speech has decreased significantly, her hand is a full fist all the time, her left leg is a phantom limb, she can’t write or read well anymore and can’t speak at all some times, she has had numerous UTIs, as she struggles to drink enough due to coughing, she’s had a couple of scary blood pressure drops, struggles to toliet and has some pain issues. The positive is that the carers have had time to get to know her more, before her speech became worse which helps.

I go 3/4 times a week and spend time with Mum, rather than the constant stress, running out to rescue her, go to a&e, shopping, prescriptions, feeding and everything else she needed. I know she is looked after and safe, she understands that . The guilt is real, but a friend who died last year on her death bed, who brother has PSP said to me the only way you can help her is to put your own oxygen mask on - she’s right but it’s hard. And unfortunately it just gets worse.

I would ask about CHC funding for her care, she should be entitled for it, but it’s not easy to get and can be a battle.

Xx

[Karen1981 in reply to Kelmisty]

Wow

That’s really good advice x Ty for sharing x we sound to be sharing a lot in common. I’m currently doing as much as I can shopping, washing, cleaning , appointments and at the moment visiting every day or evening. It’s just me and my husband as my brother lives overseas and her sister helps with visits and was taking her for a stroll twice a week. It sounds like you’re doing amazing and it’s very helpful to hear from someone in the same situation. We haven’t tried with an electric chair yet but think that would be next thing and to look at level access living with carers which I hope will give her some confidence and independence back x

She has been referred to a specialist physio and community nurse so hope they can help too as as livery as the physios, carers and OT are at IC, they don’t understand the complexity but it’s early days. Even after talking today with them they were talking about trialling her with a walking stick.

It really had helped to hear your side and good to know she’s not the only one in this situation and his you have managed. It sounds like you’d doing a great job and whilst it can’t of being easy making the decision of a nursing home there comes a point when it is not viable or safe anymore and I think that’s where I’m battling in my head at the moment xxx

[Kelmisty in reply to Karen1981]

Just to say we never tried an electric wheelchair as Mums spacial awareness is very poor and was 18 months ago. A electric wheelchair would have brought a whole range of other accidents. The electric armchair to help her stand at home was hard enough, she would regularly push it high and then slide off it as her legs wouldn’t work in that moment so I would need to come out and pick her up off the floor.

[timbowPSP in reply to Kelmisty]

Hi Kelmisty,

I really sympathise with all the changing goalposts, but hold this secret: PSP means Please Stay Positive! ..... I forget about CBD ..... 'C retinous Bally Disorder'? I am male 83 ,PSP diag 7-8 yrs ago, and still active and functioning, but deteriorating. Have writen loads of info, advuice, comments, so can send this to you if you send me ur personal email address. Best wishes in these testing times. TimbowPSP x

[Karen1981 in reply to timbowPSP]

Ty that’s so lovely to hear

I do keep telling her that we focus on what she can do x will use the please stay positive vibe 😀

glad to hear your managing it well and I totally agree a positive attitude will help xx

[timbowPSP in reply to Karen1981]

HI Karen, I'll do my best to attach my info/Update. As PSP develops with me I can't always do these things, but....... watch out when I find ur address! Tim W x

[timbowPSP in reply to Karen1981]

K. I need you send me ur personal email address. I think you have not yet, or ..... is this another PSP glitch of my memory? All best wishes Tim x

[Bergenser]

I'm so sorry to hear about that "double whammy". It's a lot to take in and you can't continue to hope it's something more predictable or treatable. There is a grieving process that starts today and probably never ends. I wish I could hug you 🫂 and you're right - it isn't getting easier. Still, it's mentioned in the PSP poetry book "today is a good day". The reality of the condition is the same as yesterday, but now you can start dealing with it.

A positive attitude makes a difference.

I recall telling myself that this was not something we could fight, so we had to make the best of our time and energy.

Make lots of memories and be kind to yourself. You're stronger than you think

🌻💪

[Kelmisty in reply to Bergenser]

Spot on, caring for yourself as well as others it’s normally the hardest thing to do. X

[Karen1981 in reply to Bergenser]

Ty

My mum was so upset as she had kind of been ignoring things so if hit her hard x she was saying that half of her thinks she should just stop trying and why her. She is a fighter and all I could say was that we focus what you can still do and what you can still enjoy and now that you have a diagnosis with the proper supports in place you will probably have a better quality of life than recently because we have had no support.

It’s hard because she lives alone and I just don’t know what’s for the best going forward. I can’t afford not to work and it wouldn’t be right even if we moved her in with us and I don’t think I could look after her as well as working

I did think if we could get carers in and assisted living on one level with an electric wheelchair as an option but I just don’t have the answers

[CJFreckles]

I'm so sorry to hear this. My dad had cbd with suspected PSP pathology. Firstly, get her a social worker via the council. Also depending on her finances, if she is under the 23 000 in savings threshold, she might be able to get a small amount of financial assistance. They might also be able to help with having carers come in up to 4 times a day.

Look at meals on wheels as that can be also a extra welfare check.

Next look at chc funding. Id be more then happy to send you all we had and guide you through. It's a tough thing to fight for but well worth it if it means you can get her care funded.

My dad's wish was to remain at home. I managed it but only just. Please feel free to drop me a direct message to go through any details.

Make sure you take care of yourself. Being a carer for someone with such a illness is hard on you too. I couldn't afford to give up work either and used some of my savings to help pay for my dad's care, and was reimbursed when we managed to get the chc funding. But it was a fight.

Keep updated and always feel free to reach out x

[Karen1981 in reply to CJFreckles]

Thankyou for the reply xxx

I would please like an help and advice you can give on CHC funding. Meals on wheels I think is a good call. Il look into that now x x

[DaffodilPrimerose]

Hi Karen, so sorry to hear this disease has visited your family.

The disease is cruel, in my PSP persons case an electric chair would have brought big accidents, anything unsupervised after diagnosis would have.

My advice is to try find a care facility early on.

[SunriseLegend]

My husbands wheelchair was prescribed via the NHS wheelchair service. They would not prescribe an electric one because they assessed him and decided it would not be suitable ( for some of the reasons already mentioned). The wheelchair he has is excellent and provides the support that he needs; is adjustable multiple ways and was fitted to him by the hospital; has neck and side support; special cushion to prevent pressure sores. We were allowed to buy and fit a motor which helps me to push it up hill etc . If it needs any repair it is done quickly and all at no cost to us. We would be lost without it.

[Karen1981 in reply to SunriseLegend]

Thankyou for the reply and info x

[Harshacceptance]

My heart goes out to you, we all get this.

My dad has CBD, he is end stage and we have managed to keep him at home with mum. It’s been a battle which has torn the fibres apart of our family. As my brother says we have it balanced on a blunt knife edge all the time as it goes into criss quickly and the intensity is high.

The diagnosis is vital, ensure all your mums medical records reflect this. Ensure that falls, UTIs and everything is evidenced.

Get the MDT assembled and ensure they are all fully aware of what CBD / PSP is, how it presents at various stages which will be different for every person and inform them how best to manage her care. Don’t expect things to happen, the hard bit is making this all happen, we’ve had many battles over the years and were lucky in that we secured CHC … eventually.

Is your mum on the GSF with her GP, if not per the diagnosis as she has a palliative condition - the GP is the central point of care not only for prescribing medication but also services like the OT who can provide specialist equipment such as beds, mattresses, wheelchairs … does she have palliative OBS via the DNs?

And yes, it sounds like you should certainly apply for CHC which isn’t means tested as he nursing needs far exceed her social needs it sounds.

You’re doing really well 🙏 this forum is a lifeline.

Good luck

[Karen1981 in reply to Harshacceptance]

Thankyou x

You keep on in there too x I’ll look into the GSF as not heard of it before and will contact the GP tomorrow x

[Bergenser in reply to Karen1981]

The Gold Standard Framework (GSF) only kicked in for us at the end-of-life stage. I understand now that it should have kicked in much earlier, and that "palliative care" covers much more than end-of-life. Once my husband registered his "Do Not Attempt CPR" decision, the GP's were reluctant to initiate any investigations (e.g. cancer) as they expected him to refuse all treatment if anything was found.

I believe it's important to have an in depth conversation with the GP to make sure the nuances of the situation are covered and that all health services involved understand how to best support the patient and family. It's also key that they understand how quickly things can change.

Xx

[Kelmisty]

Just a thought, it might be worth mentioning where in the country your based as every system seems different across counties - so you might be able to get specific details.