PSP Association
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Away for some time

My first post was filled with anger and frustration having just received my wife's diagnosis of PSP with the consultant giving her a 2 to 6 month prognosis due to her rapid deterioration where she went from being able to walk around a supermarket one week with her unable to stand the next and then being hospitalised. Well, we have jumped the 6 month hurdle but she is getting worse. Her ability to communicate is limited to the odd word and grunt (varying pitch and intonation which I am now able to interpret depending on what I have done to annoy her)! She needs constant supervision but can be left in safe places (her rising recliner chair or a low armchair from which I know she cannot try to escape). She has no control over her bladder and uses pads. She is unbelievably stiff and has a powerful grip and an obsession with grabbing anything in reach. I move and turn her using the "turn assist" with safety belt against purist OT advice because part of her stiffness is her inability to sit back down easily so I figure that the least times she has to do this minimises the force needed to get her to sit. We have just begun the CHC funding marathon and are being helped by our district Matron and have received notification that it is "In for assessment by a Health Professional" (funny that but I thought a district Matron was a health professional)! I have to ask what the purpose of this bureaucratic nightmare is other than to provide obstacles to slow down the funding process. There is no incentive for the local authority to say that the level of care is above that which they can provide if the patient is funding their care themselves. The NHS is unlikely to volunteer to pay for this! We have had excellent support from Marie Curie with normally two night visits per week enabling me to get some rest and Hospicecare are counselling us with facing up to the "inevitable" difficult questions such as funeral arrangements. Oh well onwards and upwards, must get another load of washing on, get breakfast, shower and hair wash my lovely and then sit down together to listen to the Archers. A carers lot is not a happy one!!

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Rob your last post wasn't filled with anger, apart from anger for Mary and how she had been treated. If carers can't fight for their loved ones who will?

It sounds to me that you are taking care of Mary very well. I would be furious with the Neurologist too. Can she not have a second opinion? It maybe that the second opinion won't tell you anything you don't know but if you went to someone who is a PSP expert it might help? It can't be cured if course and it may well be that medication which others on here use is all you need. However general hospitals have no idea about PSP and it's associated conditions! So getting a consultant who knows what he is talking about to listen to you is a major achievement.

I am really glad you have the Hospice involved and it may well be that you get more sensible advice from them. At least I hope so!

Your poor wife has had a very rapid progression. I suppose it proves the point that everyone is different?

Just remember there are lots of people on here who will give you advice and point you in the right direction generally.

You are entitled to CHC funding but you have to fight like hell to get it! Kevin has written some really good stuff about this. So when you get 5 minutes try to read it. I don't know which part of the country you live in but some CCG's have been hauled over the coals for denying people their human rights as it takes so long to get funding. Kevin found the list so if you read his back posts you should find it but it is also on the internet! In addition the NHS is to give an account to the Health Select Committee who have been looking into this. April was mentioned as the timeline they were given to come back with answers! I don't recall a date so at a guess would imagine it was the beginning of the month. I must search to see if it has been done. However I assume once MP's have read the report they will then have to recall the CEO of the NHS. So maybe a while yet? You could always tell them NHS that is you are going to take legal advice about your wife being denied CHC funding? Or tell them you will go to the press? The National Press!

Sounds like you are doing a great job but sometimes they take advantage of that! If you say you are struggling they might listen?

Good luck to you and Mary.

Marie x

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Rob I can understand you being angry, but we just have to get on with it and fight to get them the care they need. PSP is a horrible illness, wish you lived to of patients, and energy, also welcome to the site, as I always say the best place ever. Big hug I am sure you are doing a wonderful job. Yvonne xxxx

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We all understand the anger and frustration you are experiencing, Rob.

I had 2 yrs of watching my husband 'get old' very quickly and then got a final diagnosis of CBD 3 months before his death. That was the only thing that made sense as our world fell apart and I fought every step of the way to get medical recognition of disease, its progression, understanding, hospice care, help as each change required a difference in treatment, as he hurtled down the hill to the inevitable end. No doctor had any idea how long he had and I felt powerless wherever I turned! I knew how little time he had, and he died a week after going into a care home where he was supposed to stay for up to a year according to the doctor!

You can only do your best! Keep on fighting for what you know is the right thing to do! Fight for her care, peace of mind and acceptance of what has hit her!

Tell you still love her! That you are there for her till the end!

She needs to know this, as you both deal with stuff you never imagined you would have to deal with.

You will feel embarrassed and disgusted at what you have to do, and she will be the same but have a different way of showing it!

She is still your wife inside, who would show her love if she could.

Try and bond with what you have to deal with so that you can fight together, and try to find peace together in that bond. It is the same battle you fight and you are still the same people.

It is for only a short period in your lives, and it is utterly exhausting! You will have longer to reflect on whether you did it right! Stick with it, fight scream and shout, do all you can to get what you know she needs in care and comfort and for both your peace of mind.

I send you a big hug and encouragement to help you fight this great battle. Take care of yourself too! Stay strong! We on this site are here to help you all the way!

Hugs

Jen xxx

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Hi Rob

You're post had a big impact on me. The fact that you have kept up at all with Mary's care needs when faced with such rapid progression is amazing. I really take my hat off to you.

It sounds like you have been a wonderful carer.

I am so glad you are getting better support now.

Wishing you both the best

Kevin

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my husband is in his 4th year he has constant diarehea its soul destroying he has meds for it but it not good his grip is also strong he cannot stand alone and is in a wheelchair but his strength is such he can push with the brakes on I put blocks at the back but caught him before he went over the top the gripping is part of the illness we have spent almost all our savings so I am about to apply for funding but they still deem our income is above what we need to live on we have spent over 20 thousand pounds up to now we were stupid we worked all our lives its been a breath of fresh air joining this site I have learnt more here than from anywhere else thank you everyone they didn't expect Geoff would see xmas but hes a stubborn old git and he will go out fighting

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Poor Mary had severe constipation issues which were dramatically resolved with medication causing the opposite so I now monitor her carefully. I sympathize with your problem because the big clean is something I can do without. Good luck with your funding application and keep strong too. Rob

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My husband has had diarrhea for fourteen days now. The doctor ran all kinds of tests and they come back normal. He is not sick in any other way. How long has this been a problem for your husband? What have you been told? I know what you are going through and send my warmest regards. Nancyxxx

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geoff has constant diarrhea I was told its part of the illness I do give him loperamide to try and control it hes had for over a year and lost approx. 4 stone in weight but I have learnt to control it over time and his weight is now stable unfortunately he was rushed into hospital last night blood pressure was 224 over 125 he started fitting but its under control now he has an infection but he will be coming home I know its hard cleaning up after diaorrhea but what else can you do I had to explain to both para medic and nurses what psp is so as I'm sure you know its an upward battle but you love them and just have to keep buggering on as my dad used to say my heart goes out to you doreen

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Yes we are buggering on! Will use that phrase of your dad’s! Really appreciate the information. I have been told that constipation is the common symptom but with this psp deals, it can be anything. Doctor took another sample yesterday for a test. I keep hoping they will find something. My Gene can still use a walker and get up from his lift chair so he makes it to the toilet most of the time. Your information was so helpful. I do have the loperamide. Hugs back to you. Nancy

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Most posts experience constipation and my neurology department told me to go to our family physician because PSP causes constipation. May I ask who told you diarrhea was part of the disease. I feel cooped in because he moves so slowly and manages at home but out in public that would be nerve racking. You said over a year! Is that several times a day? Loperamide doesn’t seem to help. Thanks for anymore input. Hugs, Nancy

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Mary's constipation was caused by Cocodamol pain relief prescribed after a torn muscle caused by me when I was handling her. Doctor then prescribed Laxodol to clear this which resulted in diarrhea! After time it cleared. Rob

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our neurologist told us it was part of geoffs illness he did say it can go both ways Geoff struggles to leave the house now as he cannot do anything for himself the diarrhea is not every day now because I watch what he is fed [no currys] seriously he has a very soft diet and I have learnt to give him a higher dose of loperamide as soon as he begins to be loose and he may have 6-8 tablets that day it does slow it down the next day I give him 3_4 tablets and the next day 2 tablets we then have a day or two without a movement our doctor said I am controlling it well I know Geoff well 56 years so can read what is happening as far as his health is concerned but this is not a normal illness so I think different rules apply the doctor said I cant over medicate the diarrhea tablets the way I do it so I am happier to stop the weight loss and make him feel more comfortable he is in hospital at the moment pneumonia they ask me what I do for him on various things because once again only the doctor knew about psp hope you get it under control thinking of you doreen

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Thank you so much. Gene has gone 7 times already this morning. The doctor upped the loperamide but will do so again. He is on a soft diet of bananas, toast, jello, rice, mashed potatoes, yogurt, pancakes, sometimes a meatball or chicken breast. I have known my Gene for 55 years but this is really hard as you know. Sorry to hear about the pneumonia and sent best wishes to you both. Nancy

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Not anger, more like frustration. The diagnoses is overwhelming and it takes time to adjust to the dramatic change in all of our lives. Getting help is a major problem. Take care of yourself and keep fighting the system.

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...And if it IS anger - never apologize for that!! Your wife has been robbed of her health, her expectation for retirement, and of her "normal" relationship with you. You have also been robbed of all that (although I hope you are doing things to take care of YOUR health? I know - much easier said than done!!) You have a right to be angry - we just can't figure out where the heck to put that anger!

Hang in there Rob - this will not last forever. There will be life after PSP - both the good (freedom) and the bad (grief and loss) - but you can make it. Keep in touch.

Hugs XXX

Anne G.

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Thanks Anne, it is the grief bit which is already hitting me and my days are filled with years. Mary shoes no emotion which I find very upsetting but I suppose it is a defence mechanism for her. Rob

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Good luck with the CHC. We could not even get past the assessment. Our district nurses just dropped off the forms for us to complete, totally uninterested. You are doing a grand job but it is just so tiring x

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I have my copy of the checklist completed by our District Matron with what appears to be the accepted terminology. Depending on the response from the the assessors I am very happy to share this with you in order for you to complete your paperwork (if you have yet to do this). Rob

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Thank you

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A big hug.

Luis

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Hello Willow......where in the U.K.are you. please keep in touch.

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We are in the West Country. Exmouth.

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Miles away from us!!!

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This is heartbreaking but some things you say are helpful to others. Charles is also obsessed with his triangle over his bed. Can't leave it alone. This disease is so strange and it is unique to each patient.

Hang in there. It will get harder so enjoy what precious time you have together. Stay strong, that's an understatement.

Cuttercat

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Cuttercut how are things with you? Hope things are alright. Thinking of you.

Marie x

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