PSP Association
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My first post

This is my first post I actually posted on someone else’s thread so sorry!

Well here goes my name is Marion.

I am from Scotland.

I am going to try and share my story or should I say my lovely husbands horrendous story.

My poor darling husband has not officially been diagnosed as yet but in our hearts and souls we know that is what it is we are just beginning to know about this illness.

Well I should say I am !

I am not sharing everything with my husband ( I know it’s not right )

But my husband is very ill with other illnesses and I don’t want to burden his already tormented soul

I swear I don't know what to do it has floored me 😢😢 no one is saying yes it is or no it's not

My husband has fought cancer, aspiration dysphagia, then psoriatic Arthritis Omg it is awful I just can't take anymore bad news I am feeling so sad that my heart is breaking ..

He has fought many fights and won because he is my hero and an amazing guy he helped me through my Cancer fight my pneumonia just so many things and now it is my turn to help him.

We have been fighting the fight for over 18 long months and every day there is more bad news

But now I don't know what to do I genuinely am in a state of utter despair and so is he

He is such a brave man and such a fighter but now what ?

I am worn out ...I can't imagine what he feels !

But I can see the sadness in his eyes it is heartbreaking I can’t handle it I just cry all of the time

I totally admit I am just as sad as life can be ,we are in a state of shock and to be honest he doesn’t even know all of what is happening to him

I know my post lacks info but I just want to start somewhere.

Thank you

Marion

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Marion sorry to hear you have been through so much, my husband was diagnosed in 2014 and re diagnosed in 2015 it has been a long hard road, without the lovely people on this site I think I would of given up ages ago. My husband is in a wheelchair all the time now. I hope your darling husband gets the right answers and you can move forward. The sadness is the hardest thing to cope with, at the beginning my husband would laugh when I cried, which was very hard, he would say I am laughing, but I am crying inside, people on here are so supportive, they will always be there for you. Sending you a big hug, sorry you had to join the site, but you will get the answers you need, better than any GP could give. Yvonne xxxx

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Thanks for getting back to me Yvonne I am very grateful I am in a very bad place mentally but it's not about me but I feel it is all consuming scary is not the word.

TBH our GP my husbands GP has done nothing I hate to say that I really do but it's a fact and because of the horrendous journey we have been going through it is not the time to change.

So we will wait and see Yvonne I don't know where to start my hubby is having another round of bloods done on Friday I honestly think they don't know what to do with him so sad

I hope to get guidance from the site and I am sure I will you answering my post gave me at least a bit of joy and that is so hard these days

I just don't know what to do we are fighting so many different illnesses so treatment is very difficult oh how sad is life

Thank you and a big hug back xx

Marion

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Marion keep strong it’s hard but you need too, once you know what you are dealing with, you can adjust it it, hard but at least you will know what you are dealing with. We had a bad night last night watched the clock go around. Keep posting will make you feel better. Sending you a big hug. We also saw proffesor Morris in London he is amazing xxxxx Yvonne xxxxxxx

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Hello Marion and welcome to the site! You did it! :-)

As Yvonne says, you will find a deep source of support here from the community. There is practical advice and emotional support - and even - believe it or not, you will want this at some point: humour! My favourite thing: the wonderful variety of personalities that make each response so different and valuable in a unique way. (Me: I'm wordy ;-)

For now you are scared and need some answers. Having multiple health issues complicates things and makes it a jungle for the GPs to hack through. *Have you had a neurologist consult?* Can you ask for that?

Also, what are the symptoms that led you to believe it might be PSP? While most of us on this site are not medical practitioners, there is just so much experience with symptoms here that you will probably get closer to an answer.

Meanwhile, take a deep breath: You MUST take care of yourself! You can't be the support your Hero needs if your health goes bad (...and did you say you'd had cancer already?) You are about to become the Hero yourself, girl - stay strong, and we'll help!

I was going to say, "grab a glass of wine, tuck hubby in to bed, breathe deep and read this site"..(.but hey, the wine is my thing - whatever works for you;-)

Hugs your way Marion xxx

Anne G.

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Hi Marion, I'm so sorry you're going through this. It took a VERY long time for my dad to be diagnosed. In the end, I printed off a list of symptoms of PSP and took it to a neurologist (after fighting for an appointment). I said "this is what my dad's got". The neurologist said "oh yes, I agree, go see a neuro nurse, she knows a lot more about it than I do".....and that was that. After three years of tests. He was right, the neuro nurse was very helpful, and after that, doors started to open to help that was available. Getting a diagnosis is essential to start things moving. My dad had a DaT scan (we still had to wait 7 months for a diagnosis, but apparently that was what differentiated PSP from Parkinson's). Do you have PALS in Scotland? They helped me to get an appointment, otherwise we'd have been lost in the system and just left to drift. Very little is known about PSP and, like many on this group, we have had to learn on our feet. This group has been by far the most valuable source of info and support, we wouldn't have managed without it. Wishing you strength for the days ahead. Sarah x

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Sarah, I too diagnosed my hubby's P.S.P. 7 years ago he was wrongly diagnosed with Parkinsonism, and put on Sinemet, which did more damage, he is now totally dependent upon me, can just pivot transfer, has become a different person to the one I married 17 years ago. I am exhausted, we hit the road (Grey Nomads) into our 8th year now, it was the 1st year that I noticed something was amiss. He became nasty, jealous, controlling, I couldn't leave him for a minute. He has been into care twice now, the visiting nurse, said I had carers fatigue last time, I am now waiting for a permanent place to come up to put him into care. My health is beginning to suffer, mentally and physically. This site is so so good for the mind and spirit. Thank you everyone for your input.

Cheers Marg

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Hello Marion - we have all been in bad places throughout our own personal journey - I can empathise with you totally. My husband has PSP formally diagnosed mid 2015 and is now in a Care Home - I agree the sadness and hopelessness is very hard to accept and deal with.

I took a list of symptoms that my son and I were seeing together with timelines to the GP after my husband had been to and fro over 18 months or so with various issues - I thought he had had a stroke frankly - weight loss; falling; tiredness in his eyes; waterwork issues amongst many other things and all that at the age of 66 so young. The GP immediately did a referral to Professor Huw Morris at UCL London which in my opinion is the only place to go for diagnosis and absolute truth and support. Locally you need a referral for the Parkinson’s Nurse; District Nurses; Hospice; Speech and Language Therapist amongst others.

Look at the PSP Association who have helpline support and materials to help you - it is a fantastic support.

Go to your local Carers Association for yourself.

You need the formal diagnosis then you can start to get everything in place.

Do talk to people on this site - we will all have experience and answers.

Be brave and proactive, it will help you.

You can not do this on your own - stay in touch.

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Hi Marion, well done! You have just taken the most important step in your husbands care.

First thing, I doubt if you will ever get that definite diagnoses. Most consultants say, it may be, but only at autopsy can they give the correct disease. Great, I know! Steve's Consultant, said it probably was PSP, GO HOME AND GOOGLE IT! That was the best we got from him. Our GP, well he was completely useless. I know he was young, this is a very rare disease, but you would think he would read up about it. Obviously, reading was a class he missed!

Have you joined the PSPA yet? This is an absolute must! They will send you loads of information and booklets to take, when you have to visit any medical professionals. GP, Dentist, Optician, etc., oh and when you visit A & E. Work on the principal, nobody has heard of PSP and you won't go far wrong.

Sorry I am painting a gloomy picture, but I'm guessing you know that already. This site is wonderful. We are all either carers or sufferers of PSP, I'm an ex carer. We tell it how it is, warts n all. Lots will frighten you, some will give you hope, many will make you laugh. The most important thing is to stay positive. Concentrate on what your husband can do, not what he can't. GET HELP! You can't do this alone, ask for help now. Don't leave it too late.PSP tends to throw things at you, when you least expect it. Just as you get symptom under control, another sneaks in and bites where it hurts.

We found physical exercise helps. There are special classes for people with Parkingsons. Steve did these for a while, then when he couldn't attend anymore I got a personal trainer to come in twice a week. Actually the same young lady,who ran the classes, so she knew all about the condition. If nothing else, it felt as if we were fighting this evil disease.

The PSPA do run support groups. i hated the thought at first, but after gritting my teeth for the first couple, quickly came to realise that they were extremely helpful. To walk into a room where everyone knew about PSP, was very comforting. To see someone in the late stages, is very frightening, but then you see the carer coping, so it gives you hope, that you too, will manage.

Last but no means least. You must look after yourself. YOU are the most important person, in your husbands care. Therefore have to be working at 100%. You will need lots of rest, time to breath, time to cry, away from your husband. This is very hard, most of us fail, but it is essential. Without it, your husbands care will not be up to the standard you will want it to be. He WILL suffer!!!

Sorry to be so lengthy, PSP is life limiting, your life has changed, but it's not over. I took my husband regularly to South Africa, until it got too much.

One day at a time.

Sending big hug and much love

Lots of love

Anne

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"Chapeau" Anne!!

Luis

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Thank you!

Lots of love

Anne

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Oh Anne thank you ! Thank you for that amazing message what joy ?

Joy through tears I am so grateful to all I haven’t even began to read them all yet

I will tomorrow as each and everyone is so special 🙏

Thanks for the advice I will be at least prepared a bit for their lack of knowledge

I find it all so alien to them really I hate to say but I know my husbands GP doesn’t have a clue honestly !

He calls my husband the mystery man 😡

It is tragic

Thank you for getting back to me hugs Marion

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One thing I forgot! Stay on this site. Join in on every post you can. A lot of us say we are addicted to reading and taking part, but I promise you, it was/is the only thing that has got me through. Which made Steve's journey, that tiny bit easier.

Lots of love

Anne

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Marion, that is exactly what my hubby's specialist said, UNIQUE my hubby preferred. My thoughts are with you, I too am exhausted, crying constantly, but we have to be strong, I am now in the stage of getting Hubby into full time care, 7 years of looking after him is taking its toll, on my health and mentally

Cheers

Marg

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Welcome, Marion. I can't add much to what the others have said here. They are all right! And being in the UK they have more practical advice about resources available to you over there. Getting the diagnosis was hard for my Henry and me, but once we had been told as definitively as can be, we buckled down and dealt with it as best we could. The neurologist tried him on various medications to very little effect, but we felt we were trying, so it helped that way. Exercise, physical therapy, occupational therapy, speech therapy all helped for a time to some degree. Again, feeling you are taking action helps in itself. I enjoyed doing the exercises with him, so it was a fun thing.

After a while I did make all the decisions, as Henry didn't want to know the details, or couldn't absorb them. You aren't wrong to try to manage the information for your husband. It's an awful responsibility, but one I think many if not most of us shoulder. It has been only later that I realized how much his thinking had been affected. He was good at faking, and kept his wonderful sense of humor and sweetness. Caring for him was a struggle, but I did get to hold him and love him. Many illnesses don't give you that chance. In that way PSP is not the worst thing that can happen.

Hold on. Stay in touch. You are not alone.

Love and Strength and Peace,

Sarah (Easterncedar)

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Wow what a lovely message words fail me !

But thank you does not

Do Thank you so much Xx Marion

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Hello Marion, I can't add much to everyone else's excellent replies and I am not sure of what is available in Scotland but, in case it helps, the things we found most helpful (in Kent SE England) were:

The Hospice Day Service, hospice volunteer for sitting and later Hospice at Home; the Parkinson's Nurse; Occupational Therapy (for providing equipment); PSPA Helpline and local support group; this site.

I do hope you can get the help and support you need. You won't be able to cope alone so do ask for help sooner rather than later. Try to get the practicalities such as housing, equipment and transport sorted out so that you can continue to go out together, have adventures and make memories while you are able. Don't forget you can apply for Attendance Allowance and Carers Allowance and possibly Mobility Allowance (depending on age) as well as a blue badge. There are also means tested allowances and grants for home adaptations for which you may qualify.

Vicki

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You may be able to apply for a reduction in your council tax, if the rules are the same in Scotland. Every little bit will help. Also check out the Age UK website for advice on advance planning for Lasting Power of Attourney, Wills and Advance care plan decisions. I know that you will think it’s the last thing on your mind at the moment but it may be the best thing you ever do for yourself and your husband. Psp can advance at differing speeds and it is wise to be prepared for the unexpected. Also if the rules are the same in Scotland you are entitled to a Carer’s Assessment to work out what you need as a carer to support you in your role. You can also be registered with your GP as a Carer which alerts them that you may have enhanced needs. If you do get a firm diagnosis there may also be CHC at some point if your husband is deemed to be eligible, to help to pay for his nursing care. Take care of yourself and all the best. Ruth x

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Hi Marion

Goodness, you have both been through the mill. I'm not surprised you feel tired.

Have you applied for " Hospital Based Complex Clinical Care"? The Scottish version of CHC.

sehd.scot.nhs.uk/dl/DL(2015...

I don't know the eligibility criteria.

Or, perhaps Social Services home care?

Caring is exhausting and its very tough on ones own.

It is not only your husband who is brave, I think you are amazing.

Warmly

Kevin

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Welcome, Marion. I can't add more practical advice to that already offered. My husband was diagnosed in 2013. I thought he had had a mini-stroke. We were lucky to see who neurologist who knew a lot about PSP and was able to inform us - although there was nothing good in the news !

We live in S.E. London and had a good community team support. But this site has been the best support. Chris died 3 months ago.

I would re-inforce that you make good memories and hang on to a sense of humour. It is a frightening path but you will survive, as we all do.

love from Jean xx

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Thank you so much xx

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Jean, my hubby was diagnosed incorrectly 7 years ago with Parkinsonism, I actually worked out that it was P.S.P. it is cruel to watch them go through such a horrific disease, I like Marion am constantly tired, upset, etc, but this site is so so helpful, just found it by googling, today.

Cheers Marg

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Keep coming back. It is a lifesaver. Its so important to not feel alone and also that help comes about dealing with things like incontinence which is minimised by the professionals.

love, Jean

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Hi Maz 777!

I can't add very much to what the others have said here.

In short these are some of my experiences on PSP disease expecting they could be useful :

First:

If physicians agree that there is suspicion of a Parkinson like neurological disease (PSP, CBD, etc.), then I suggest to start an intensive and systematic gymnastic program as well as walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction.

Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people): At least go up and down 50 steps (odd days), walk 200-300 meters (even days), speech therapy exercises and exercises mouth and ocular muscles. Then she needs to rest at least 30 '.

In general it is important to encourage the patient to do things on their own. It is good that everything the patient can do by his own means, do it, even if it takes more time. With some help if necessary.

Without any scientific basis, only observation of few nearby neurological diseases PSP like, I have the impression that a specific program of intense gymnastics can slow down the disease progression in a significant way and is more effective the earlier the disease is detected.

Bearing in mind that Parkinsonian patients become significantly more fatigued (parallel to disease progression) for the same activities than those not sick, then they requires more frequent rest periods.

Hugs and courage.

Luis

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One more important question....

Releasing the caregiver and allowing him/her to have life outside the home as well as to avoid strong or continuous physical and psychic efforts is fundamental. The main caregiver of a patient is progressively taking additional tasks. To the personal previous work (when the disease had not been shown), must be added the work formerly done by the patient, plus the management of the illness and the guidance of people who share the help team. A special and continuous attention must be directed to the main caregiver and his/her medical history.

Remember that the main caregiver jobs and occupations grow at the same time as age..... without an important help is very difficult to carry out all these activities without suffer a severe wear down.

From my experience and also from my group of caregivers it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least, a week of holidays each six month is advisable.

Finally and reproducing the phrase of Anne-Heady (active participant in PSP-HealthUnlocked):

"Never forget to get plenty of rest, ask for help and most of all "ditch the guilt!"

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I am overwhelmed with the amazing response and advice, and how caring you all are

it touches my soul,

what I have left of one I have so many questions to ask but I am really scared to hear the answers

In fact I don’t think I could handle any and I must !

I can honestly say hand on heart that you have all given me more information in 1 night than I have had in months from the professionals

My goodness how can that be !

But know this everyone I am so grateful to each and everyone 🙏🙏🙏 xx

Marion

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Ditch the guilt, I like that. Time out is impossible, hubby is so so controlling and manipulative, but I guess that is because I have allowed him to be. Thank you for your comments it does help and re-assure me that I am now doing the right thing in looking for permanent care after caring for him for 7 years. My health is suffering, and my mental state too.

It means so much to read others outcomes and advice

Thanks again

Marg

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Hi Mazz777,

I'm so sorry for your husband's diagnosis. My husband was first diagnosed with Parkinson's disease in late 2016, then saw a movement disorder specialist in May 2017 and was given the diagnosis of PSP. He also has other health issues, and I truly understand the feelings you've shared. Much of what you've described about your husband, I echo about my own husband. The diagnosis is indeed a shock, but with time a sense of acceptance does seem to come.

We live in the USA, and I don't know how the provision of healthcare in Scotland compares, but here......YOU are the best advocate for your loved ones (and yourself). By that I mean, be informed, ask (lots of) questions, don't settle for answers (to questions) that don't make sense to you, challenge healthcare providers to think outside the box......not all patients with PSP are the same! Write down your questions and take the list with you to medicaI appointments. I spent over 30 years working as a registered nurse/nurse practitioner and always gave the same advice to my own patients.

I hope the coming days will be easier for both of you and that you will feel free to seek support and strength from others here.

Take care.

Teresa

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Teresa, I agree completely with you. We are in Canada, and while the health care system is good compared to a lot of the world, PSP & CBD is still unknown, and when it isn't "cardiac" or "cancer" the system doesn't seem to know what to do for you. Even getting the diagnosis fairly quickly (compared to many) there was no automatic follow up. I had to engage what I believed the back up would be, through my GP. I felt totally alone until I found this site :-) Your comment to Marion about "us being the best advocate for our loved ones" is so right on! ...I agree! Don't settle: ask lots of questions and push for info!

Anne G.

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Hi Marion. I can't give any more advice tha the others on here have. I wish I could. I too live in Scotland and cannot fault the medical professionals we came in contact with. My wife(who sadly passed away 7 weeks ago) was being treated for other health issues. Our GP felt there was something else going on so referred us to a Parkinsons consultant. He very quickly made the diagnosis which was soon afterwards confirmed. He was great at explaining as much as he could. He was still learning but the number of referrals he set up almost overwhelmed us. Social work dept set up a fantastic care plan as well as arranging a plan for me. I was by this time exhausted having been her carer for 2 years without any help. A fund was set up to pay for private carers to come in so that I could take myself out of the scene for a short time. That is essential for your sanity. Attendance allowance paid for someone to come in for some cleaning, ironing etc. That left me time to show my wife the love she so needed. SW arranged respite for her in a local care home to allow me time for myself. You must look after yourself so that you can face the difficult days ahead, and they will be difficult. I came to this site late in my wifes illness but the group on here have been fantastic. Keep visiting it is well worth it. Sorry for the long dragged out reply. Try to stay strong. Sending hugs to you and yours.

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Hi Marion

We have found the local Hospice and the PSP Association to be much more supportive than the GP. My Mum is coming towards the end of her life. PSP is very difficult disease which seems to affect people differently and to be frank the GP was useless and the local neurologist. You really have to go to the National Hospital for Neurology in London (if there is no Scottish equivalent). to get any information. That is where my Mum was diagnosed after a year of messing around by GP and local Hospital. GP had no idea about PSP had never heard of it.

This group on here is really helpful and people are very kind and supportive and able to help with many things.

You do need to get help for yourself too. Being a carer is exhausting as you already know.

Sometimes I think because there is no treatment or cure for PSP you are just abandoned to muddle through which is why this group is so fantastic.

Love Steph

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Hello Marion, I was remembering your first post, and you said you didn't have a definitive diagnosis for your husband yet, and you were fearing the worst. Have you found anything out? Was thinking about you...

Anne G.

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