Having reached the end of my dad’s journey I am able to look back and see the big picture, now that I am no longer struggling with the constant minutiae. I see that what may seem the least important things - paperwork - can actually be the biggest tools in your armoury in the war against PSP and keeping our loved ones wishes and dignity to the fore. End of Life options and wishes in particular should be explained fully, together with LPAs, DNRs and Wills among other things. They are the things people shy away from but can become some of the most important things you ever do.
Another thing that has bothered me, when I look back, is not the fact that dad’s diagnosis was as others have said, misdiagnosed, or more accurately, evolved, as new symptoms developed and became obvious enough to be noted but the manner of delivery. Dad’s original consultant was quite sharply spoken and addressed me rather than my dad even though he was sitting by my side. Dad couldn’t speak properly but understood everything. Then the consultant told us that Dad had PSP but other than saying it was progressive and would get worse, that was the only explanation he gave us. I, of course, being computer literate, had already been researching online but dad was left with no proper explanation, indeed he even left the office delighted that he didn’t have Alzheimers. I, however, left the room feeling sick, my worst fears finally, brutally confirmed. It was not my job to tell my father what would happen to him in the coming weeks and months, that was a responsibility too far but I did it and it was heartbreaking. The specialist who gave us a second opinion had a better bedside manner but still no official verbal description, or even written literature for dad, I had to obtain literature myself from the PSPA to help my mother to understand what was wrong with her husband of 58 years and what was coming in the future.
I feel that consultants need much more effective training in delivering these types of prognoses and in supporting their patients. Just because PSP is rare doesn’t mean that patients cannot be treated with basic humanity. I don’t think that a cancer patient, for example, would be left to their own devices to find out the true meaning of what they are told in a very confusing situation but I was left with the impression that they were almost scared or embarrassed to face us with such devastating news. It wasn’t acceptable and I hate to think others may be having the same experience.
I know that the personality of the consultant will obviously colour the delivery but training is needed to improve the quality of the explanation, the patients deserve that much at the very least. They cannot ask questions about something they know nothing about, especially if they are already losing the power of speech.
I know that I did my best for my dad and that is helping me come to terms with losing him but it could have been made less traumatic at times. Sorry everyone but I needed to get that off my chest! Ruth x
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Ruth, first let me say your father must of been very proud of you, psp is a horrible illness, takes everything away from the people we love and care for, it takes it’s toll on the career givers, I hate psp with everything fibre in my body, it is such a cruel illness. We were lucky I suppose our doctor at the hospital was very supportive and helped us a lot, was always there for us, so sorry you had a bad experience. Your dad is away from psp and in a better place.
George had a chest infection, I was unwell a really difficult time, we are still trying to get better, George is sleeping a lot, not eating very well coughing and choking, to me the coughing and choking is the worse thing ever, he passes out and is very frightening to watch, this can happen 10 times a day, feel worn out by the time it’s bed time for me, and I just don’t t want to go to bed at night, feeling worn out. I had the flu and it has taken me nearly 2 weeks to start to feel a bit better, so hard of us care givers as well. Ruth sending you a big hug hope your mum is ok and you are getting a rest xxxxx Yvonne xxxxx
Thank you very much Yvonne, it’s very kind of you to say so. I only did what I hope any daughter would for their dad but I always think of the poor patients who have no one to speak up for them. Mum is soldiering on, my next mission is to find her a bungalow as she has spinal scoliosis and is finding their house tricky now. George is so lucky to have you to take care of him so well. Don’t forget to take care of yourself too though, you need your rest to be able to carry on. I hope you feel much better from the flu soon. Thinking of you and George too of course. Ruth x
Ruth hope you find your mum a nice bungalow, we moved into our bungalow about 4 years ago, we moved from London up to Hertfordshire, best thing we ever did, care up here is so much better than we would of had in London. Love Yvonne xxxx
That sounds like you made a good move there Yvonne, it must make looking after George easier and much nicer than being in London. I wish we had been able to do the same in good time but dad’s PSP ran away with us. I hope to help make Mum’s life easier as soon as possible. Hope you both get a good night’s rest. All the best to you both in Hertfordshire from us ‘Up North’ Ruth x
Sending you hugs too Yvonne, as you said it is a horidd illness, the worst part is that their mind is still so so good. Into our 8th year since 1st wrong diagnosis now. Cheers Marg
That, EC , is the $64,000 question! I have no idea but I hope we manage it somehow. PSP patients deserve better than this, even GPs are mostly oblivious to this disease and it’s effects. I think the way the diagnosis is delivered should help the patient to come to terms with their illness and help them to make rational plans for their future care. Avoiding the issue is doing them and us the carers a great disservice, as it can lead to denial and difficulties in the future, which could have and should have been avoided. Best wishes Ruth x
Hi Ruth; Your reflections are valuable. We had the same experience with consultants - that is, no written literature, no reference to support groups, no "roadmap" for how to proceed from that point: heaven knows they had no idea this website existed - I just stumbled upon it after searching forever...
As EC says, "How do we get your message out?" Consultants need better training in how to communicate with us. I would suggest starting with a university medical school where neurology is taught and finding out if they would be open to some "customer feedback".....
I am very sad to hear that you had a similar experience, I think that it’s very hard to teach empathy, unfortunately, it may be a case of either you’ve got it or you haven’t but these consultants are meant to be the best of the best, so they should be able to follow a basic set of guidelines, if the medical schools were to teach them. I think that is where PSPA and Cure PSP could make a big difference by adding their voices to the issue. In the U.K. they are fighting hard to make GPs aware, I hope that this issue could be addressed by them too. Wishing you all the best. Ruth x
I just had an idea Sarah with regarding getting the message out. I'm sure that there Directory in every town, city, state, province that lists all the doctors, medical services providers etc. It doesn't surprise me or anyone else on this forum about the lack of knowledge involving neurodegenerative diseases...PSP, CBD, MSA etc. Why not compile a list of these medical professionals beginning with GPs, who are really on the front lines. Fax the doctors information sheets for themselves specifically as well as to post in their offices.
Hi daddyt, here in the U.K. we are very fortunate to have the PSPA who work hard to bring about awareness and on their website there are many resources including this link pspassociation.org.uk/for-p.... It may be a very good idea to forward the website link to interested professionals and hopefully the word will get around that way perhaps? Take care. Ruth x
Sorry for confusing you with Sarah, Ruth. PSPA does a very good job at getting information out in the UK. In North America... mostly US. and Canada it's CurePSP that provides and shares information with medical professionals, patients their families and caregivers. Still, this is not enough. I think if we ride on the coat tails of Alsheimer's and the tauopathy connection it may bring about more awareness. I still firmly believe that awareness begins on the front lines... the GP's who will refer their patients to neurologists. In Ontario where I live, most GPs have a standardized memory test for patients who seen to present some cognitive difficulties. Perhaps they should have a standardized test for lets say, Parkinsons with additional criteria for PSP, CBD or MSA. This testing could be a valuable tool when assessing patients that may need a referral to a neurologist.
No problem😀yes it is a good idea to link up with similar awareness organisations just as is done with different cancers or types of arthritis -strength in numbers. The memory services dad was tested by were somewhat confused as his responses were not as expected that is they were ‘normal’ but the nurses in the local hospital during his stay treated his as if he had dementia speaking to him in sing song voices and one gave him a soft toy to keep him occupied at one stage, the withering look he gave her said a thousand words as he quietly put it down to one side! When he was finally diagnosed in April 2017 with PSP they were unable to help further and we heard from them no more as PSP was outside their remit. Take care Ruth x
Word of Mouth is an amazing tool too, sometimes I find that you can read and read and still not understand the paperwork that the Government authorities give you,this site is more helpful than anything else
We were the first, 'case' our G.P. had. They took the trouble to learn about it and, I was led to believe, it was passed on throughout the group practice in their meetings.
Word of mouth. There has been a lot of research on this and it is very powerful. Example - One experiment: The experimenter asked someone in the street in London to get a message to James on Orkney. The only information given was that he lived in a house near the harbour. The message was, "Please call this telephone number."
The person was asked to pass the message on once to the most likely person they knew who might be able to pass the message and the recipient was to do the same.
Versions of this experiment have been done many times. Sometimes accross continents.
The result is always the same. The message is passed on five to six times before getting there and never more than eight steps.
Yes Kevin you are right especially in this day and age, the whole world is but a click away. It never ceases to amaze me that all the knowledge in the world is at our fingertips , it just takes a curious and motivated mind to access it. All the best to you and Liz. Ruth x
Hi Ruth - indeed well said....! We lost my dad just before Christmas to the vile PSP. We had great support from our community nursing team, but he consultant at the hospital implied he was using dad as a guinea pig to moniter the symptoms of PSP! I also remember one consultation with him where he asked me what I thought was wrong with my dad as he kept didn’t seem able to decide on PSP or Parkinson’s...... I said PSP without hesitation and he agreed...... When dad reached the point where we couldn’t get him to the consultation appointments anymore he said there wasn’t anything else he could do - and that was the last we heard from him!
He had a reasonable enough bedside manner, but he didn’t really go into detail about what to expect, just that there was no treatment or cure. The disappointment was that he was a neurologist who was specialising in PSP!
I forget the number of times mum and I had to explain to people what PSP was and how it affected someone.
This forum and the internet were a great help in finding options to help dad but more at the beginning would have helped.
My mum did the most amazing job caring for dad and now as we start to pick up the pieces, we ask - did we do enough? Was there more we could have done?
A must greater awareness of the ‘journey’ is needed and more support and literature for carers, community nurses, hospitals and GPs.
I have thought often that there must be a way to spread the word.....
Sending hugs and warm wishes as you navigate pulling life back together with your mum......
We had exactly the same experience Ruth, the consultant said he thought it was a disease called PSP which was on the Parkinson's scale and referred Ben to a Movement Specialist whose bedside manner wasn't exactly empathetic. Knowing what I know now I would have chosen to see a different consultant ( recently paid to see him privately) who was so lovely and kind. He addressed Ben not me when asking questions even though Ben isn't able to communicate easily, he was very patient and gave Ben time to try to answer. We didn't get any sort of guidance with the initial consultants, it's disgusting that you have to do all the research yourself, they should explain in simple terms and point you in the right direction to access all the information you will need. I appreciate that they have to tread carefully as Ben wasn't ready to accept his diagnosis for a few months but they should have the training to anticipate how much information to impart, it was me who wanted that information so that I could get the ball rolling and get things put in place for the future. It's always in hindsite that you are able to know what you should have been told and the help and support was available, it's a mine field trying to do it all without guidance. Your mum is lucky to have you to help on this journey and your dad was lucky to have such a caring daughter.
Dear Kate, I understand just where you are coming from, we all seem to have the same or very similar experiences. Once it finally dawns on the consultants what the diagnosis is we become like red hot coals to be passed on as quickly as possible. Education in communication skills is undoubtedly the answer to this and I’m sure it doesn’t need more money, just more common sense and humanity, which is sadly in short supply. Also on a practical note a simple printed sheet of information etc would be a start, so that you can process what you have just been told at your own pace. No one takes in verbal information in these situations but the manner in which it is given and simple kindness softens the blow. You sound like me, information is vital to prepare ASAP for what is to come.
Thinking of you and Ben and wishing you well. Ruth x
Dear Ruth, I absolutely agree with what you’ve said and in fact your post rings bells with my Dads diagnosis! The neurologist said my dad had Progressive Supra Nuclear Palsy but just said it simply means your brain cells will start to wear out about 20% quicker than someone else of your age, nothing else was really explained and again I came home and searched online, and then contacted the PSPA for all the information we needed, simply wrong, wrong wrong!!
I remember we were all very relieved it wasn’t Alzheimer’s too!
I also wholeheartedly agree that lpa’s, wills, advanced end of life plans etc are absolutely vital!
More training for the ‘professionals’ is undoubtedly necessary along with some training on compassion!
I’m pleased you brought this subject to the forum, well done Ruth and huge hugs to you x
Hi CJ, thank you and so sorry to hear of your loss. Yes the nursing team we had were the most help to us too and to be fair, it was the consultant who referred us to them, automatically, that was the point, it made us feel he did it as a tick box exercise so he didn’t have to get involved with the messy business. I am sure that we all understand that we are being observed and used for research by the professionals and indeed hope that it will help future patients but to actually tell you that you are being treated in this way is very dismissive of your feelings. The words of the song, ‘it ain’t what you do but the way that you do it’ come to mind and it’s almost like they don’t want to admit they can’t fix something, so dismiss you and it’s on to the next case, as quickly as they can.
We had the same experience constantly explaining dad hadn’t had a stroke/Dementia and that it was PSP, we all have done everything that we could do and none of us could have done more, so rest assured you were there for your dad when he needed you most, you are not responsible for others failings. We are all leading parallel lives and hopefully our experiences will lead to an improvement in treatment for future sufferers of this awful disease.
Hugs to you and your mum too, take care of yourselves, keep soldiering on. Ruth x
Yes I agree much more training needed but deep down I wonder just how they came to be like this, surely they became doctors because they wanted to help people. They may be overwhelmed and somewhere along the line they lose sight of this simple fact, becoming desensitised as more knowledge is crammed in to their overworked brains.
The question perhaps should be how do a few still manage to retain their compassion? If we knew the answer to that we could be onto something big.
I seem to have stumbled, unwittingly, onto a raw nerve with these observations but I’m glad if it helps anyone out there struggling to know they are not alone in this. All the best to you and yours Ruth x
Medicine is a crap shoot in the best of times. PSP shows doctors as the flawed humans they are. Many have egos that don’t handle that revelation very well. Long before Larry’s diagnosis I was wary of medicine having had a few bad experiences myself. In the time I’ve read the post on this site I have found out much more than any visit to a neurologist office. I find I am education most of the medical community we come in contact with now. Being only a mere mortal I’m not sure how many like that.
Haha! You made me laugh but you’ve got it in one, The Emperor has no clothes on! Sometimes it takes someone to just stand up and say it like it is. Well done! I suppose though being fair we do experience hundreds of hours of PSP effects, many, many more than any neurologist, so we do know the practicalities but not the ‘why’ and ‘how’ of PSP. Stay strong. Ruth x
Ruth, we had exactly the same experience with my dad. I had to fight for months just to get an appointment for the results of the DaT scan - dad had been left hanging without a diagnosis. I'd printed off a list of symptoms from the PSPA site, and I handed it to the neurologist, who simply said 'yes that's what your dad's got'. He only addressed me, and despite my mum asking him repeatedly to speak up as she couldn't hear him, he refused to do so. He simply said "I'll refer you to the neuro nurses as they'll be far more help". And that was it. We were out of there in less than 7 minutes, and left feeling numb.
In my practice as a nutritional therapist, I hear many stories of doctors who just don't seem to care, and lack basic manners and compassion. I don't know what's happening to the health service.
Like you, it was left to me to research and understand the implications of this horrible disease, and even then, it constantly took us by surprise. A month after dad's death, I'm feeling like I want to DO something to make a difference.
As you mention, it's only really now that we can reflect on what happened, and for me, it's still sinking in. Sarah x
Hi Sarah, one of my friends is a consultant and her husband is a retired GP and they are both lovely, warm people but I have observed that they both operate on a different emotional level at times. I am wondering if it is the flip side and a coping mechanism in overdrive that results in these reactions, how would a doctor function if they were too emotionally involved I suppose. We have only had to sit in one of these interviews it must be terrible to have to deliver this day in and day out. It probably protects them to zone out a bit but hopefully there is a way to bring some balance and the medical training should include techniques to combat it. As it is now we, the patients and carers, are the ones suffering from post traumatic shock partially brought on by what I thought was a one off incident but is tragically an only too common an experience. Best wishes Ruth x
Our young GP on reading the letter from the consultant diagnosing Chris, said " He has a very rare and interesting disease ". I said " It may be interesting to you but its devastating for us " She seemed surprised !
Our consultant made a quick diagnoses and was very caring - [ he was Italian ], spoke to Chris, answered my questions and also referred me to this site !
I quickly found out that in general I was the expert and always asked directly if they knew about PSP.
Many thanks Luis, I think it’s part of the grieving process, I feel a need to process what on earth happened over the last few months, it can feel very surreal and helps putting in into words, if it helps anyone else me putting my thoughts into words all the better. Take care. Ruth x
Hi daddyt, here is a link which may be of interest pspassociation.org.uk/for-p.... There is the PSPA red flag sheet for GPS but the whole section is extremely useful and highlights many of the issues people have been highlighting. Take care. Ruth x
Yes you are correct theses experiences are just not good enough and shocking that it seems to be a worldwide issue. Take care of yourself. Here is a link that may be of interest to you pspassociation.org.uk/for-p.... Ruth x
Hi JR61, ditto for the attitude when I was diagnosed back in June with CBD On my own and just felt like he’d handed me a death sentence. Had to catch two buses to get home. No leaflet just told to go on the internet! I have suffered with depression in the past so this nearly finished me. Second consultant not sure diagnosis is right so having DAT scan next week to see if it may be Parkinsons. Either way not looking good.
Glad you had your rant though, I don’t feel so alone.Jayne
I’m so very sorry that you were alone Jayne when you were given your diagnosis I’m sure that can’t be good practice for any illness let alone PSP or CBD. It seems to be an endemic problem and a difficult one to address and bring about a change for the better. I hope that you have a better experience when you get your scan results and that you are treated with the kindness and empathy you deserve. I hope that you have a friend or relative who can go with you to support you.
There are support groups in the U.K. run by the PSPA where you can meet others to offer each other face to face support if you contact their helpline. pspassociation.org.uk/infor...
Thinking of you Jayne and I’m glad if my rant has helped you. All the best. Ruth x
Thanks Ruth. I do have my husband who is supporting me now, but did not come with me at the time as didn’t know the bombshell that was to be dropped. All the info I initially got was from the PSP web site, thank you for the link anyway. I’m in Norfolk and have found a support group that meets every 6 weeks or so.Have only been to one meeting so far as we are still trying to come to terms with it all. Thanks be I found this site.Jaynex
So glad you have the support of your husband, I wish you both all the best on your journey. This site has helped me so much, with advice when I needed it and just as an outlet to express concerns, it has been the most useful source of information from people who have been there. Take care, thinking of you both. Ruth x
Ruth the same happened to us! My husband was never told anything although I am not sure he would have wanted to know if I am honest. He used to tell people to talk to me. I read up about it on the internet. I was so shocked! I rang the PSPA to get information but because the Neurologist thought my husband also had signs of MSA they wouldn't send me any information! I tried twice but to no avail. The MSA Trustees were totally different and sent me information at once.
Our GP hadn't got a clue about it and the Community Matron was so abrupt she reduced both of us to tears so I told her to leave! We had no other nurses apart from someone who came each day to give him an injection as he was prone to blood clots.
Initially we had a good OT but then she moved on. The one we had afterwards wasn't helpful at all. Our social workers changed regularly.
After the initial diagnosis my husband's next appointment was in 11 months time!! He was going downhill rapidly but I couldn't talk to the Neurologist and the Secretary refused to ask him to bring the appointment forward! To say it was a nightmare would be an understatement. I should really have complained to PALS but stupidly I didn't. I was just worn out and stressed out!
You are so right that doctors need to be taught how to relate to patients and their carers. I have actually been thinking of volunteering to talk to carers of people with PSP. Not quite sure where to start but you need someone to tell you all the things you should have been told but weren't? Like you I found this site by accident!
It seems the way we were treated is normal practice?
I think you are correct Kevin it would be a minefield. The most effective way is for medical schools to actually teach the correct way to deliver bad news in the first place and ways to help doctors to cope with the stresses involved. Unfortunately, that leaves a large number of already qualified doctors who need CPD training (continual personal/professional development) to bring them up to speed. Ruth x
When I was training, many years ago, we watched videos made for doctors 'in training' on how to deliver bad news. They were very good - and the only sophisticated bit was to deliver the news and come back after it had a chance to sink in and repeat it and ask if there is anything needing clarification. Research had shown that patients absorb very little on the first delivery.
I suspect it is overworked doctors and some needing a little empathy adjustment (that's me being very polite).
They do a huge amount of CPD - wrong kingd of leaves on the line I'm afraid!
Yes the answer to a lot of stuff is taking the time to go back a little later, to do a recap or a debrief which would be useful, as you say in a stressful situation information doesn’t get processed. It’s also useful to take someone else along with you who can back up your recollections of what has been said. I really think that it is bad practice to tell someone this sort of life changing information when they are alone and then send them on their way, as another member has reported. Ruth x
I believe you're right Kevin, and the health systems that are subject to so much public scrutiny would not likely take such risks...Oh well.nice idea while it lasted!
You mentioned early training - are you a health professional? (If we're allowed to ask..I'm still new to our etiquette here..)
No problem, yes I was. Funilly enough my last professional practice registration expired yesterday. My field was Community Mental Health - So I am cautious of commenting on Neurology and Medicine.
So sorry to hear what happened to you both Marie. There just seems to be such a complete postcode lottery when it comes to obtaining care and information. We were lucky overall Our Neuro Matron stepped in for us on a couple of occasions when GPs and their receptionists were being slow or awkward and sorted them out. You really need someone to have your back at times like these. PSP is so unpredictable and multi faceted it’s impossible to face alone for long. I know my dads normal Neuro appointments were many months apart too but other appointments for hospice team etc were monthly once we got them on board. Dads journey was a relatively short one and to be honest I don’t know how we would have coped if it had been longer as it almost finished my Mum off. I agree that we all have had bad experiences along the line and more understanding would go a long way to improving matters. Thinking of you. Ruth x
Ruth we had no support from anyone at the hospital. We were just cast adrift. In the end my husband ended up in a Care Home when he needed a Nursing Home. We had a struggle even to get CHC funding although everyone said he would get it. When he got it, it came too late. The Care Home refused to feed him. They told me he was acting up when I went to visit as he was alright the rest of the time! A total lie, but even when the consultant said he needed to be fed as he was at risk of choking they refused! Trying to find him a Nursing Home was a nightmare. The one I found was too expensive for the CCG! They said they only used them if they were desperate.
I could go on and on but the truth is the whole system let us down. I don't think I would be here now had I not found this site and the wonderful people on it!
For those still here thank you from the bottom of my heart. I am still here because I can't be the only one who went through this with my husband? So if I can help I will. He gave up on life and a part of me is glad he did because the future had he survived would have been even worse if that was humanly possible. I still feel traumatised by the way he was treated and the way they allowed him to die in the hospital. Not what he wanted or the family wanted.
Dear Marie, that is so awful to hear, I have said in another post about my efforts to get CHC funding and then as soon as dad was admitted to hospital it was granted within 24 hours. There was a lot of nonsense happening which I wondered whether it was delaying tactics but it got sorted in the end thankfully. However, like you it was not sufficient for the fees or the creatively termed ‘hospitality’ that covered gym, library and internet. Of all things that dad didn’t use it was those three! However, the hospital social worker was an absolute marvel. She sorted out the doctors who had decided dad needed EMI /nursing care. As I didn’t know what EMI was I of course being nosey investigated and thank goodness I did there was no way dad was EMI. They had arrived at that conclusion because they said he was being difficult because he didn’t want certain treatments and when he eventually had had enough he tried to leave. Apparently you are not allowed to do this🙈 they had met their match and he very nearly paid the price! Eventually, after many more problems which the lovely hospital social worker sorted out, he was found a bed at the best place in the district, with lovely staff (just a very high price) To be honest though I would have paid anything for him not to end up where they originally said he needed to be. They didn’t understand about PSP and had written him off as suffering from Dementia- a common occurrence I would imagine. The system is creaking at the seams I’m afraid. Thinking of you. Ruth x
A further comment Marie: I was looking at the CurePSP website tonight after this earlier discussion. I know it serves North America and you relate more to the PSP Assoc, but for what it's worth, CurePSP has a section on its website where people can sign up to lead peer support groups! There are downloads and videos to check out to see if you are a fit for the role, and a contact person to communicate with if you want to try it out. Maybe the PSPA would take note of CurePSP's lead! Also - maybe the video on the site would be useful to you? Just a thought.
I totally understand Ruth, I actually worked out that my hubby had P.S.P and not Parkinsonism as previously diagnosed, I think the most harrowing through this horrid journey (into our 8th year now) was when he was in hospital after his P.E.G. insertion complications, I felt totally lost. He wanted to finish his life at home, ???? we are Grey Nomads, and have been on the road since just prior to his original diagnosis, so where to now, fortunately people we house/pet sat for some 2 years ago and were again, when he had the op, have invited us into their home until the end of his life. I could no longer shower him alone, and did not know where to get help. Fortunately for me his speech therapist put me onto a lady at The Mercy Hospital, and I got all the help I needed immediately. However 7 months down the track and I am physically and mentally exhausted, I have hade 2 weeks respite due to Carers Fatique, but have now come to the realization that he has to go into full time care, of course he is refusing to believe it will happen, but through friends (people we have met through house/pet sitting) and family I know I have to do it and have their support, hard as it will be. It is exceptionally draining. However this site, (I have been scrolling all morning) is amazing, so so helpful and supportive
Dear Marg, sorry to hear of your long struggle and glad that you found some support through your friends. We too had to face the reality that we could no longer manage dad’s care at home alone. This was not an easy choice but it was forced on us by a sudden downturn in events and the constraints of their home. Good luck and hope that you find a nice home and you can both come to terms with your decision. You need to be kind to yourself too take care. Thinking of you both. Ruth x
I have come to realise I have broken a very large dam with my original post and there is a torrent of extremely sad stories being released.
Basically, the way that we are given information by specialists etc needs to change and most of it boils down to BE KIND TO OTHERS and just THINK how would YOU like to be treated and then do the same. It’s not rocket science afterall and not too much to ask surely? Ruth x
What a wonderful, articulate and descriptive post.
I very much agree with you. Getting the diagnosis and finding the PSP Association was everything to us.
I think Neurologists could at least put people in touch with the PSP Assoc. and preferably hand them a print out from the PSP Assoc information pages. We would often do the equivalent in the Mental Health Services and offer a follow up telephone consultation to answer questions. A very good job for Junior Doctors.
I do hope you will write more on the forum. Your posts are helpful.
Thank you very much Kevin, I had a bit of a bee in my bonnet about a couple of things which could have definitely been better regarding dad’s initial care and the more I thought about it the more cross I got and it all came tumbling out! It was Our Neuro Matron that told us about the PSPA some weeks later, after the diagnosis but it is not good to be kept hanging on and worrying about it all with imaginations running riot. Ruth x
That's awful. I missed that bit. High handed, or he needed to look it up in the diagnostic manual. There's a whole pile of criteria in there, must have this, does not have that. But all the same he should have told you to you rface so that he could answer questions. That must have been an anxious wait.
The whole care thing has been a fight for us, really inadequate Care Agencies, community high handed hospice staff and even Liz sighed in relief and shook her head when they left because of their cool and distant bed manner.
There were superb people too - OTs, Salt Nurses, a good care agency, the Queens Square Neurology team.
PSP has thrown us into a world of struggle and tiredness. Still we go on and we aren't going to let up.
Yes Kevin, I’m afraid it seems that individual experiences vary from the good to bad to downright ugly as we have heard from everyone on here. The doctors should look to their promise of First do no harm. As it does not only apply to the physical but to the mental aspects equally. Best wishes to you both. Ruth xx
I agree Ruth. My mum had me to research PSP, explain the condition and prognosis and advocate on her behalf to all the healthcare professionals. Now my mum has gone, I keep wondering what happens to people on their own, who don't have a close family member to support them. My local hospice has a "befriending service", where volunteers can be put in touch with an isolated person who has a life-limiting condition and I'm going to volunteer this year. But the system needs to be improved and can't depend on volunteers.
Sorry to hear about losing your dad. Sending you very best wishes. Amanda.
Yes Amanda, I have thought the same about the poor people who have no one and also other countries or areas where the support is nonexistent. All the support and information really needs to be organised at the point of diagnosis, it should all be set up and waiting, good to go. The diagnosis is complicated as we all have experienced and isn’t a spur of the moment, flash of inspiration. The diagnosis is given when they deliver the results of scans or tests so the consultant already knows what he is going to tell you before you walk through the door, it is a planned meeting but sometimes not with enough joined up thinking. So this should give their admin staff time to assemble a small information pack and referrals with contact names and phone numbers and an appointment to see the Neuro matron in charge of the multi disciplinary team BEFORE you walk in to receive your diagnosis. Great idea btw by your local hospice, all the best. Ruth x
I found out what was wrong with mum after an article in Woman and Home magazine. Another family had also waited many long years wondering what was wrong with their loved one, described their journey in the magazine, and I recognised it immediately as all the symptoms mum was suffering.
I got short shrift from mums GP, but insisted on going to her next consultation with the 'falls clinic'. I suggested that I thought it was PSP to her consultant. I saw him have a light bulb moment. He immediately asked another doctor to step inside, she counted how often my mum blinked and generally observed her. The consultants demeanor changed, his bedside manner was lovely anyway, but his realization that I was probably correct did make all the difference. From there onward mum did get a really good service from the NHS. She was able to meet with a consultant who confirmed the diagnosis. It had taken around 4 years to get to that point. She agreed to leave her brain to be used for research.
We had those very difficult conversations, supported by the PSPA, with a level of understanding of what was to come. I will be forever grateful to mum for dealing with that so well. We didn't want to go against her wishes, ever, and she didn't want us to struggle with difficult decisions. As hard as it was we got her final wishes, power of attorney so we could carry them out, and put them to one side until they were needed.
I feel that there is information out there, and the PSPA are very good at what they do. But you only find it once you have PSP as the diagnosis. Raising awareness of the illness is key. GP's need to know about it. I'm with a practice that has around 20 GP's, and whenever I come across a new one I take a moment to fill them in! I also raise it with any medical practitioner I come across, including the pharmacist.
Hopefully we can all help with raising awareness of this horrid illness so that we can help raise funds for research into a prevention or cure.
You did a marvellous job with only a magazine article to raise your suspicions and you also highlight the importance of the patient having someone to be their ‘wing man’ at appointments. The sooner a patient is diagnosed the better and also given the information they need to make very difficult decisions and get their affairs in order. PSP is so unpredictable that you cannot afford to be complacent and when you are in a state of shock following the diagnosis it would be easy to get into a state of denial just at the point that clear, concise thinking is required. Best wishes Ruth x
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