Hi everyone I have been reading posts on here for days and it has really helped me through what has been an horrendous few months. I thought my life was perfect I am 53 and Steve is 58 we met a few years back at parkrun and last year we got engaged and have our wedding all booked and planned for 22nd Oct 2018. Back at the end of July we went on a little mini cruise for some rest and relaxation and the plan was to come back and make the final wedding plans our main holiday was going to be our honeymoon an 11 day cruise starting the day after our wedding, I am currently in the process of trying to cancel that. Steve took ill on the mini cruise and we were taken straight off the ship by ambulance to Southampton Hospital where Steve ended up in Intensive Care with pneumonia, a week later we were transferred back home to Birmingham and he has been in Critical Care ever since. Just before we went away he had been ‘diagnosed ‘ with Parkinson’s and given some medication so although it was a shock I figured we could deal with it and had done lots of research about exercise etc and felt confident that we could make the best of things. However he just wasn’t improving and every time they tried to remove the tracheostomy he couldn’t cope, the neurologists did various tests etc and then the really shocking news that he had PSP came a couple of weeks ago and I started reading the stuff on here. Last week I had a big meeting with all the team involved in his care and he is a long way down the line with this dreadful PSP and the Consultant is talking in terms of months maybe less and I can see this from reading the information on here but nevertheless it is a huge shock to hear it. We would dearly love to get married but there is a capacity issue as he currently has fluctuating capacity. He will never manage without a tracheostomy as he has barely no cough, he has a PEG as his swallowing is very unreliable and he silently aspirated, he has had continuous chest infections and MRSA the hospital bug. I am absolutely devastated but trying to be positive in front of him, I feel that everything we had hoped and dreamed of has been ripped away. A long introduction but that’s where I am up to and to be honest it has been quite therapeutic to write it down. This community is amazing the way you all support each other and I have found it helpful to read the information so thank you all and I hope you all have the best possible day you can xx
Hello everyone I am Sarah and my lovely fi... - PSP Association
Hello everyone I am Sarah and my lovely fiancé Steve has PSP
Hi I'm so sorry Hun just hang in there you know they are not always right he could have something else my husband was diagnosed in 2013 he doesn't have a peg or anything just mainly trouble with balance and speech he eats well I am surprised it came on so quick and so bad also he is quite young to have PSP it normally happens to older people well that's what I once read just get another opioin
and take care of yourself
Hope he comes good soon and you have your wedding x
I am the same the Neurologist drop the news about PSP he only saw me 1 time the next was the nurse , I am very tired short of breath and very poor balance I don't go any more to the neurologist , i eat ok but very tired all the time , they check everything and is including my heart , and i have dry eyes very bad and light bothered a lot. i only take tumeric , curcumin , 1,500mg and help a litlle bit and i take thyroid medicine , cholesterol and aspirin coq10 , vitamin d3 and omega 3 evry day . good luck
Thank you for your reply I thought I had replied to a lot of these messages a few days ago but I didn’t press the right button so none of my replies have shown up, that’s because my brain isn’t working anymore I am so tired! We did have a second opinion but it is all fairly clear unfortunately and looking back over the years I think this has been coming on for a while but each individual problem doesn’t seem a major issue it is just once you know and look back you can piece it altogether. Steve has had a good few days and it does seem to be a rollercoaster as he has good days and then really bad ones. All the messages on here are really helpful so thank you Sx
Sorry to hear. It is a shock to have your lives upended by PSP. It sounds Like Steve has an aggressive form of PSP with such a rapid decline. Glad you found this site to know you are not alone in your bewilderment.
As I said above I think I can trace symptoms back over the last few years but it’s only now that I can piece it altogether. When I had my meeting at the hospital I asked about how quickly things had taken a turn for the worst and I think it’s being in Critical Care for so long causes conditions to speed up I suppose your body can’t deal with and fight everything at once. He has been moved to a ward now but the nurses there don’t seem to understand PSP so although Steve has had a good couple of days I have had to step in for example he had a PEG and puréed food but they tried to give him tablets to swallow, it beggars belief really. This site is so useful Sx
Hindsight becomes 20/20. Thinking back now I can see Larry was declining from 2010 if not before. I thought it was age. He was looking a lot like his father. Now I think he father also had some kind of neurological disease. They both exhibited similar symptoms.
Hello Sarah and welcome to a great site which nobody wants to join! Your story is so sad. Everyone's is of course but to have your wedding planned when this happens is so cruel. Sarah if you can marry him sooner do it. It won't be what you had hoped but all you need are family and a few friends perhaps? The sooner you do it the better if there are capacity issues?
I am so very sorry about this but the people here are great and will support you all the way. Sadly we have all been through it or some are still going through it. So we understand when things get too much. This is the place to come and have a rant or a cry or whatever makes you feel a bit better.
Hugs to you both.
Marie x x
Thank you Marie I have certainly felt less alone reading all of this and I have finally got my brain working out how to reply to you all, I typed loads of replies the other day and pressed the wrong button so non of them saved! I am so grateful to you all for your support and advice. Sx
Oh Sarah so sad, it would be wonderful if you could get married, it would be wonderful for Steve, like Maria said welcome to the site, no one wants to be here, but without these wonderful people most of us would be lost every one is so supportive, keep posting you are in everyone’s arm. Hopefully Steve will do a turn around and you will both have your wedding. Big hug Yvonne xxxx
Hello and thank you for your reply I am overwhelmed by how lovely everyone is on here Sx
This is so sad Hiking13, and I hope things improve for your fiancée. I agree with Dance1995 get another opinion. They don't know much about PSP or about these types of diseases in general. We have been to three neurologists so far and the diagnosis has been the same so far, but you never know because for some it ends ups being something else.
Hi we have had a second opinion and to be honest he displays all the symptoms I read about on here so unfortunately I think the diagnosis is correct it’s hust very frightening for me and him. Recently I have noticed him crying quite a lot he claims his eyes are running but I am not convinced but I mentioned it to the consultant and they will monitor so that’s good Sx
Larry’s eye tear if I don’t put eye ointment in them at night. Because of PSP his eyes don’t stay fully closed at night and the lower part of the corneas are drying out. The eye ointment protects the corneas at night. The ointment is over the counter. It is 97% petroleum jelly and 3% mineral oil.
That is interesting to know I will ask if they are putting any ointment in his eyes as they are definitely not right Sx
Thanks Malattia so glad you agreed with me you have to do your own research too my husband was diagnosed with CBD initially then we realised he had problems with his spine he then had decompression spinal surgery after many arguments with speacialist
I said "isn't neurology head neck and spine " I got a reply "yes " from a neurologist so I said "how come no one ever checked his spine then ?" Well he did have the decompression as the X-rays showed up stenosis and more problems but only because we insisted
This year we went to see a nurologist he did a few tests and because he stood up so straight he was enclined to go with a diagnosis of PSP
I was told nothing can be proven till the person is deceased they won't be doing any test on my husband if they can't help him now !
Thanks for listening 🤗 Have s good day Mallittia
Hi I was shown a brain scan of Steve’s brain now compared to one from Dec when he was in hospital previously having a cyst removed. There was a very obvious deterioration in the brain stem , the humming bird they called it and I know someone else mentioned this. I suppose it was useful that they had the older image to do the comparison. It’s all very frightening but being on here and reading all of the posts and messages is so helpful Sx
Such a tragic story. It has certainly been a very rapid progress. He is young too.
My husband died with PSP a year ago.
I remember it felt like falling off a cliff when he deteriorated quickly. You haven't had time to draw breath.
I agree that if it's possible you should get married.
Feel free to rant on here.
Big hug for you from Jean xx
I am so sorry for your loss. It is just such an horrific condition and certainly turns lives up side down, I just feel that the last 2 months have been like being stuck in a really bad dream. I am quite a strong person normally but I am struggling so badly with all of this right now. I desperately want us to be able to get married but feel like I am on a tight rope heading towards 22nd Oct and one small slip will take it all away. But I am trying to be as positive as I can in front of Steve and I do feel so much better for writing it all down on here Sx
Oh, Sarah, what an awful shock for you. I do feel for you, although my love had nothing like your fiance's terrible sudden downturn. I met my sweetheart when I was 49, and it seemed like a dream come true - then the evil fairy put the curse on us and stole it away. I decided not to let it win, and fought back as best I could. We had 10 years together. One of my deep regrets is that we didn't marry. He wanted to and I was afraid of our losing everything if he had to go into care. It was a mistake. Being married would have made us both happier. Me, especially, now that he is gone.
I see where you say he has fluctuating capacity, and MRSA, so perhaps this isn't possible for you. It's a heartbreaker. I hope your fiance may recover yet, at least for a while, and that you have more time with him. Hang on.
Love and peace, Ec
Thank you for your reply and I am so sorry for your loss but so pleased that you got 10 years. Unfortunately I think Steve is too advanced with this horrific condition to get years but I would love to be able to get married but even if that doesn’t happen I can honestly say that the last 2 and a half years have been the best ever and I will always cherish what we had and still have, I just wish he didn’t have PSP. Sx
Tears in my eyes as I read your storey...........
XXX
Patrick.
I am so sorry. I wish this had not happened to you and to him.
I am the mother-caretaker of my son who died May 4, 2017, at just barely turning 55years old. March 2014 (he was 52 years old) he had his first symptoms, Double Vision, slurred speech, and FATIGUE. We live in Los Angeles, CA, USA. For almost a year, after every imaginable medical test, Jan 2015, he was DX with Parkinson's. January 2017 he was re-Dx with PSP. You can read his story under my post PARKINSON'S TO PSP. He got his first bout of aspiration pneumonia Nov, 2016. It was treated with antibiotics at home. He did fine.
My son's day job was a secondary math teacher with the LAUSD and his health insurance was Kaiser Permanente. When he had to go on CalStrs disability he lost his job insurance, but continued kaiser under the ACA (thank goodness for pres Obama).
March, 2017, after his DX of PSP he again got aspiration pneumonia. Up to that 2nd bout he walked, talked, exercised, etc, like you and me. This time he was hospitalized for 7-8 days. He agreed to a PEG. The next five weeks he completely lost his voice..communicating with his thumb and other gestures. He had a seizure. He had severe constipation. He lost most of his sight. He got thrush in his mouth and a pressure sore. He could do NOTHING (even getting up from a chair) without assistance. At the end he requested that he not be fed. Kaiser honored his request and also stopped giving him water.
I cannot tell you whether to get married or not. Marriage has legalities. Some that might help your situation and some that may hinder. I can tell you that if you LOVE your fiancee, and IF YOU BOTH AGREE, have him sign all the papers TO GIVE YOU LEGAL CONTROL OVER MEDICAL HELP. If he has a family member who is doing that and has all the legal papers, then I would allow them to continue. Do plan on giving him as much of your time each day as you can. It is a demanding illness.
I have no medical or scientific proof but I believe, based on what my son went thro, that the younger the age + attacks of aspiration pneumonia.....they hasten the severity.
My prayers to you.
Thank you for your reply, I am so sorry for your loss. I can relate to so much of what you describe and it is so hard watching someone you love go through these things. Steve has had pneumonia due to aspiration a number of times, his balance is dreadful he just leans back and did fall in the garden earlier in the year and swallowing is a big issue and his cough is virtually non existent. I have read all of your posts and my heart goes out to you and what you went through and it has prepared me a little for what is to come. Thank goodness for his site Sx
Reading Hiking 13 and the replys are so sad. I am a carer for my wife who was diagnosed with Parkinson's in 2013 and then with PSP December 2017. She has most of the problems written in these posts. As I sit next to her in our living room I can and do cry, my wife wants to cry but can't.....if she did it would crack me up even more. I know things are going to get worse, and I think what am I going to do without her.
Love to you all ...........Evertonian XX
hugs to you, Evertonian. Love is the true thing, at the end of it all.
I feel for you I have cried so much but try not to in front of Steve as it stresses him which makes his shakes so much worse. It is just so difficult and so lonely which is why this site is so good. I have lots of family and friends who come and visit Steve with me but it’s the middle of the night, cooking and eating alone, it’s those things that really get to me. I think it’s realising that the old life of doing things together is never coming back just makes me so sad. Sending you a hug and crying with you Sx
Sorry you found the site but it's a great place with great people. I truly hope things will settle down some so you and your fiance can continue with your plans.
Ron
I am glad I found this site and more than anything I hope Steve and I can marry on 22nd Oct but as we all know this damn condition is a rollercoaster and it just depends whether we are on an up or down on the day Sx
Dear Sarah
Welcome - so sorry you have had to join us. What a whirlwind you have had- the sudden
Illness and then rapid progression is a lot to adjust to for both of you.
Hope you can reach a plateau or a new norm from Which you can both adjust and catch your breath for a while
Sending lots of love to you
Tippy
Thank you and I am so glad I found this site as I feel I can write and somehow feel calmer for writing it all down. Looking back I can see that things had been coming on for a while but each individual symptom didn’t seem noticeable but now putting it altogether I can see it all pointing to PSP and unfortunately I think we are now in the late stages. Luckily the last couple of days have been better so I am just treasuring every good day Sx
Hi Sarah, so pleased you found this site in your desperate circumstances! It will be somewhere you can rant, get sympathy and more information.
My journey was also frantic and scary, like yours. I knew something was wrong but put it down to old age, until my love was admitted to hospital.
I am pleased you have found Steve. How horrid life can be sometimes!
You both want to get married. Keep planning! There is a chaplain at every hospital. Get him involved and plan a day when your families can get together. Give Steve the anticipation! It will give him something to look forward to! Plan with him, put up decorations, get some photos of you both, and everyone else who comes to see you both.
If the chaplain is available at any time, then take advantage of a "good day" and make the wedding happen then! If that time is not when the families are there, don't put off the moment! You can always renew your vows at that later time, and laugh about it!
Also talk to Steve about getting his affairs in order. Keep the family advised too!
It is going to be tough for you both, but you can make memories that will last for ever!
My best wishes to you both. And to Birmingham which was my home eons ago!
Big hugs!
Jen xxx
Hi Jen It is certainly a scary journey, I am quite a strong person normally but I am struggling at the moment and thank goodness for this site as just writing it all down is therapeutic. It is a balancing act trying to decide how best to organise the wedding and other issues as Steve has 22nd Oct fixed in his mind and I feel moving it will make him lose hope if you see what I mean. I am also struggling to sort out other stuff as he is so convinced that he will be well enough to get on with life fairly soon. Sometimes I think he says that to protect me and stop me worrying but it’s a fine line between enjoying a good day with him and discussing stuff that stresses him. I tried talking about making a will I even had a solicitor booked then he took a bad turn and I cancelled it then he got all mixed up and wouldn’t let a dr take blood for testing as he said they wanted to sell it and take all his money! So I have left those discussions for a few days. It’s all so difficult but thank you for listening Sx
Sarah, So sorry you're dealing with this heartbreaking diagnosis and the realities of the trach. You sound wonderfully attentive to him.
I'm sure you've read through the back posts, there are such helpful people here.
And if you guys decide to up and get married, we get a picture, okay?
Lost
Thank you and I promise there will be pictures if we ever get to get married! Sx
Oh Sarah what a terrible situation. You will find lots of help on this site. Really surprised how quickly it has progressed. Most people seem to start with problems with balance and difficulty with words, did you not have any of that? Let's hope you can get married Pauline x
Hi yes we have had all the symptoms over the last couple of years just didn’t put it altogether until I looked back and really thought about it. It was also masked by the fact he had a brain cyst and had an op to remove that in Nov, that sorted the severe headaches but not the balance, double vision and dizziness and now we know why. I am really hoping we can get married Sx
Hi Sarah
Do your best to marry this man. It doesn't matter about location. Move the date forward if you have to. Don't let this dream go as I think you will regret it.
My Baz and I had big plans to travel but I am his full time carer now. Baz always had a dream to go to Sth Africa so myself his brother and sister in Law took him in March this year and it was hard but amazing! I am SO glad we took him...Marry your man before he is taken by this rotten disease...xxx Kim
I definitely want us to get married and I know Steve does but I am having to be careful because if I move the date I think it will have a negative effect on him as he is so focused on being able to marry on 22nd Oct and I don’t want him to give up hope. I would have loved us to be able to go on our honeymoon but with the tracheostomy I don’t think he would be allowed to travel even if he felt well enough, he had to have someone with him 24/7 so when I leave the hospital room even to go for a cup of tea I have to tell them so that someone comes to sit with him Sx
So sorry that it has all happened so quickly. At least every symptom my husband has has happened gradually, but it is not easy. I hope you manage to get married somehow. Look after yourself and thinking of you x
Hi Sarah,
It's a shame we had to meet here but you will find such great support from lovely people who will help you through.
Your story is so very sad. My heart goes out to you.
Please don't let PSP spoil all your plans. Marry Steve as soon as you can. Let LOVE win.
Big hugs
Sue x
I hope we can still marry and I am so glad I have found this site Sx
You must try and get your fiancé to think positively because I have PSP and I am determined it will not get the better of me . I was diagnosed in 2010 with parkinsons and never really got on with levadopa so I stopped taking it as soon as i was told I put had PSP in 2016 and since then have not been too bad and I have been in hospital thankfully like your poor Steve . But you must go ahead with your plans and marry him, does he use the computer?
His hands aren’t steady enough to type as we tried using an iPad as there were a number of weeks over the summer where we had to rely on lip reading as the type of tracheostomy he had meant that he couldn’t talk, that was a very difficult and frustrating time but following a big meeting at the hospital with the whole team involved in his care we agreed that being able to talk was an important quality of life so his tracheostomy was changed, it’s not such a safe option but so much better for him and his quality of life, it’s the same with eating and drinking they would prefer him not to but to Steve it’s important, such difficult decisions to make. So glad for this site though Sx
Dear Sarah, your story has reduced me to tears. Marry your Steve as soon as possible. PSP is always waiting in the wings with more tricks up its sleeve so waste no time, don't let this dreadful disease leave you with regrets that you can't reverse. Steve may rally and plateau again, as sometimes happens, and if that's the case then you can have a wedding celebration with family and friends when the time is right, but meantime marry him!! Sending my very best wishes to you both. HilsandR
Sarah,
My heart hurts for you. I’m glad you found this forum. When my wife was diagnosed with CBD, I read past posts like you and gleaned a wealth of information. She too was diagnosed young(in her 50s)
Your story has struck a chord here as shown by the numerous heartfelt responses. While I found useful information elsewhere, this site however is my emotional support. My friends here really know what I’m going through. There are so many stories of care and compassion for loved ones with this cruel disease, but these same caregivers provide support and compassion to other caregivers all over the world.
You are not alone. Prayers of comfort, wisdom, peace coming your way,
Bobby
It's hard to believe the speed at which this has happened to your beloved fiancée, I thought that my husband succumbed to this horrible disease quite rapidly but nothing on this scale. It would be lovely for you both to tie the knot, my husband's cognition remained very much in place despite the fact he couldn't communicate easily but I realise that's not always the case. I really feel your pain in this message and hope that you find help, love and support on this wonderful forum.
Sending warm wishes
Kate xxx
Welcome Sarah. I agree with several others. Marry and know the memories you will make will sustain you in the future. We are all here to offer support.
Unfortunately my husband Charles gassed passed away but I still want to help my fellow friends here who have been my refuge through all the stages of this disease
PSP is so unique to each individual but it is cruel to all. But he can hear you and his brain is still alert.
Love
Cuttercat
Hi Sarah. So sorry for the horrible situation you are in - at such a young age too.
I echo what the others have said , do get married as soon as you can.
Contact your local hospice. Ours is great at organising marriages , even at 24 hrs notice !
Love and best wishes Bryan
Hi Sarah, welcome to the site and, like others we wish you didn't have to join. My wife was diagnosed with PSP at the beginning of December last year and given a very short time to live because her symptoms had developed so rapidly. She was hospitalised at that time and at the end of her stay in the hospital she had a UTI which was treated successfully and she is still with me at home under my care. If Steve can overcome his infections then there is every chance he may plateau and you will still have time together. Be warned though, it is hard work both physically and mentally. You will need to formalise your relationship if you are to begin the bureaucratic marathon of getting CHC funding (see posts by Kevin on this subject) which is important for the support you will need. You should at the very least get power of attorney over his medical needs and perhaps his financial affairs. I have found that the Community Health and Nursing team (Community Matron and Occupational Therapist in particular) have been excellent in getting the ramps, lifting devices and commodes in place. I had to pay for the stair lift which I wanted in order to treat Mary as normally as possible so she could sleep in our marital bed. Dietician, speech and physiotherapists need to be engaged in order to help establish some normality for Steve. I think such normality has helped me keep my Mary for as long as I have. I wish you all the very best. Rob
Thank you that is all really useful information, I am going to a big meeting in the hospital tomorrow to discuss the possibility of getting Steve home but it is all very complicated. Sx
Sarah,
How tragic life can be when these diseases plant themselves. Your story is heartbreaking. This week my minister asked me what has been most helpful to me during this time of my life and my response was this group! It has helped me immeasurably to communicate with those who truly understand.
My husband was diagnosed with CBD by 3 excellent neurologists. After 2 years from DX and a severe fall, he passed away. He donated his brain to research and upon microscopic diagnosis he was diagnosed with lewy body dementia, not CBD. These diseases even fool the experts in the field.
You'll make the right choice regarding getting married. You've had much good advice. Only you two can decide what's right for you.
Many hugs and prayers,
Liz
I was just wondering where you made arrangements for your husband’s brain to research. He would also like to donate his brain to research and because he has been diagnosed for 10 years with CBD, I too would like to know for sure. Thanks for sharing and God bless and keep you!
Likewise, 3 very qualified neurologists have made this diagnosis.
They are so right that you can't know definitively until autopsy. I'm so glad we were able to do that and find out.
Hugs,
Liz
Michael was in the research study at the University of Pennsylvania in Philadelphia, PA. Since I don't know where you are located, I'm not sure if that is feasible for you. I would think the largest hospital in your area could recommend studies for you. If not , check on line.
10 years with CBD. Bless you both. It sure is tough.
Hugs,
Liz
Thank you Sx
Sarah, my heart goes out to you and Steve. Steve's progression is one of the fastest I have read of on this site. It does appear the younger the age the faster the progression.
You do not say if Steve has other family, but regardless, he can still appoint you his health care surrogate and you need to do this asap.
There is a discussion about individuals who were diagnosed with PSP in their 50's on this site.
I am so sorry you have had to join the so many people, both the patient and caregiver, whose futures and dreams were cut short by this horrible disease. Treasure each moment you can.
I certainly will treasure every good moment and he’s had a few good days Sx
Welcome to the group... sorry it had to be under these circumstances. You'll find plenty of support and relevant advice from seasoned caregivers and even the odd patient like myself. The are no stupid question and no subject off limits.
Dear Sarah,
I'm so stunned at the speed of the onset and decline of Steve's case, I hardly know what to say! I can't imagine the extent of your shock and dismay at this completely unexpected turn off events in your life.
Your love story will be unlike anyone else's. A great love and an immediate tragedy - how can you take it all in?
As everyone else has said, keep in touch - we are here for you. Xx
Anne G.
It is certainly a rollercoaster and has left me feeling quite shocked and I have good days where I can be quite proactive and then I have bad days where I just feel so overwhelmed Sx
❤️💛💚
Sarah,
As a Psp patient diagnosed May 2017, I can only look at this from a patient’s point of view. My advice echoes the blogger who recommended having your wedding as soon as possible in the hospital chapel with those people attending who are supportive and caring. There are so many bleak days ahead that your fiancé needs good memories to sustain him. It goes without saying that I welcome you to the site, but wish you didn’t need it.
Kathy
Hi Sarah,
can't really add to what everyone else has already said just sending you and Steve a big hug. ( I was born in Birmingham )
bon courage
Dawn
Life can certainly be cruel.... beyond imagination right. I'm so sorry.
My Dad died last year from PSP. His was slowly progressive. I was one of his fulltime caregivers, because round-the-clock care was necessary for the last two years of his life.
One thing I'd like to add to your replies... this might sound WEIRD but please know that with psp, any added health problem that comes on, like pneumonia or UTI, can manifest very different characteristics than if the person didn't have psp. With UTI's my Dad hallucinated some and didn't make sense when talking. In fact those things were his main symptom of the UTI and was how I knew he had the uti even though his regular doctor had just said he did not, the same day and he didn't do any tests to be sure. The following day Daddy was in an ambulance, the only time in his life, with a raging uti. So once your beloved fiancé recovers from the additional illnesses, you'll most likely see a marked improvement, until psp rears it's ugly head again, and it will, unfortunately.
Also, I too would get a second opinion because nearly all psp patients have BACKWARDS, stiff bodied falls, which is a HALLMARK characteristic of psp and really differentiates it from other neurological disease. What are the symptoms that make you think the diagnosis is correct?
Again, I'm just deeply sorry y!! You and he will be in my prayers. Please let us know how you're both doing whenever you can.
Exactly what you said he falls backwards very easily and when he stands up I have to make him stay still and become upright before he starts to move as he thinks he is and starts moving and looses his balance. It’s such an awful condition but he has had a few good days so I am just making the most of the good days Sx
Dear Sarah so sorry to read your post. I truly hope you and Steve get to marry and that his condition plateaus as can happen with PSP. Love and best wishes Nanny857xx
Hi Hiking13!
Together with my chat partners, I think that your very virulent case of PSP is an exceptional case not described.
It has been described that infections (especially pneumonia and hospital infections) as well as bone fractures that require surgery pose a serious risk for the PSP patient, although it is common to leave these trances alive but with a marked reduction in their quality of life and a Worst perspective of life.
From a technical article (I regret not keeping the reference of origin) I can offer this data:
"One of the things that helped Kalanithi in his quest for information on life expectancy for his condition was the Kaplan-Meier estimator for his condition. I found the Kaplan-Meier estimator for PSP. It estimates the chances of survival after each one-year period AFTER ONSET OF SYMPTOMS, which I know is often difficult to establish the date of. Another thing to consider in this estimate is that it has figures for two different categories of PSP patients. For me, and most of us I believe, here are the data for what it's worth:
After 1 year the estimated rate of survival is 100%
Here are the estimates for the years after that:
2 years 98%
3 years 97%
4 years 83%
5 years 70%
6 years 50%
7 years 37%
8 years 24%
9 years 15%
10 years 4%
These figures are for the most aggressive of the types of PSP, so the other categories have even more optimistic estimates.
"
In principle and with my chat partners I am more optimistic on your case.
Hugs and luck.
Luis
Thank you that is all useful information and Steve has actually had a few good days nd I completely agree every time he gets an infection of any sort he goes downhill fast and that’s quite frightening but as I say he is having a good few days at the moment Sx
Hi Sarah
So to here that you have been given the news for this crap illness for your partner
You have come to the right place to vent or any advice cause everybody on here relates to what your going through
Get married if you can even if it means doing it in hospital so you can at least get one of your wishes done
Hope that things get sorted for you
Take care
Sue x
Good Morning, Wow, that all seems to have come on so so suddenly. Huge hugs to you both. Leon passed away on 16.06.2018 at 76 yrs, of this dreaded illness. He suffered for 8 long years, (maybe longer, looking back) it takes away absolutely everything and makes the person someone they are not. I agree with most here that this site has been invaluable to me, I only found it by chance, I am in Australia and nothing like it here, that I have found. Leon was 1st diagnosed, as are many others, with Parkinsonism. I actually worked out it was P.S.P. by reading a news article on a couple of sisters trying to raise funds for more investigation into it. All I can say is sending massive hugs and support Marg H from Howlong N.S.W.xxoo
Hi Hiking13!
I'm sorry PSP has entered your family. This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
Steve has had several serious health episodes such as cyst removal in the brain, pneumonia and MRSA infection. That has been able to accelerate the PSP process. This has happened in our case.
By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.
Hug and luck.
Luis
Thank you so much Sx
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