My husband has been diagnosed with PSP aged 48

5 years ago my husband was diagnosed with Parkinson's Disease but seemed to diterioate very quickly and he didn't have a shake or tremor. He has had many neurologist appointments and he was finally told he had PSP last month after having a 2nd opinion. He can walk but has real problems with fine motor movements and has had a total change in personality. He was very socialable and outgoing and now he is withdrawn, vulnerable and and a lot of the time non coherent. He had problems with his bladder and bowel and has many accidents which is very hard for me as his wife and carer and this causes problems with everyday life and his independence. Over the last 6 months he struggles eating his food and there are times when I have to feed him. He needs help dressing, showering, getting in and out of a chair, bed and car and basically can't really do anything for himself and this is heartbreaking to see. We have two teenage children and it's been a real strain on our family. He hasn't had many falls but does loose his balance and freezes often and needs help getting going again.

When I read about PSP my husband seems to have some of the conditions but not all. I just wondered if anyone is experiencing similar conditions

28 Replies

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  • I'm very sorry to say, but yes, those symptoms are familiar to me. That is terribly young for PSP, but not unheard-of.

  • Thanks for your reply. I realise everyone suffering from PSP has different symptoms. I am going to contact the PSP association for help and advice.

  • Very good idea. It takes a while to get used to the new diagnosis. It's not easy. One thing to be aware of is that some Parkinson's medications won't help folks with PSP and may have negative side-effects. After 5 years with Parkinson's, I bet you know a lot about all this already.

    We are here for you, though. This is a good community.

    Love, Ec

  • Hello Lisa_jeff

    Welcome to this forum. There are many experienced and well informed people here as well as a lot of support. We are all going through this as a sufferer or a carer, It's horrid, but with support and resources in place it is doable.

    What you describe does sound like PSP five years in, but the illness progresses a little differently for different people.

    PSP invariably comes with balance issues, you don't mention that.

    For many the change in personality is a flattening off both cognitively and emotionally rather than a complete change to someone who is very different. In other words the values and beliefs don't tend to change. Just they are flatter in emotion and have slower thought.

    It is heart breaking and doing personal care for a husband challenges some very deep parts of ones relationship as a lover and wife.

    Freezing is common with PSP. The person knows what they want to do they just can't make the body part respond.

    I am not a Dr and so this post is jut my limited experience.

    If you are in the U.K. have you made contact with the PSP Association? They are very good and they have a link person in most parts of the U.K. Their website also has high quality information written for medics which is easy to understand for us as well.

    I hear just how tough you are finding it. We all do. But, there are many things which make it easier to cope and care.

    Support resources organised and taking care of yourself are the crucial things.

    There is superb information on this forum both in old posts and just for the asking.

    Welcome

    Warmly

    Kevin

  • Thank you for your reply and support. My husband does have balance issues but I read that PSP suffers tend to fall backwards but my husband is always hunched forward and never stands tall and straight. I will get in contact with the association and hopefully will get the help and support I need.

  • Hi, lisa_jeff

    I have PSP, have had several falls but only one of them was backwards. PSP is a very individual illness and each patient has his or her own experience

  • Lisa

    My husband passed away in February. He was told he had PSP with signs of MSA. Just before he died he was told it was MSA. To be honest they are quite similar so the symptoms will be very alike. Your husband sounds very much like my husband was. However it could indeed be PSP. You need help caring for him as things will get worse and in my husband's case it was quite rapid.

    Instead of having accidents why don't you use Convenes for your husband they are less likely to cause infections? You need pads too? That makes the toilet issues much easier to cope with.

    You might need to blend his food so its easier to swallow and a thickener for his drinks. Has he got a speech and language therapist? He should have! Can you type an A4 sheet with the Alphabet and numbers so he can point to what he needs when his speech is bad. It does help.

    I am assuming you don't live in the UK as you don't seem to have any help. You need carers to come in to help you as it will become virtually impossible to care for your husband without help.

    I really am so sorry Lisa. It is a horrible condition and MSA and CBD are as bad.

    I feel so sorry for your children as this is so hard for them.

    If I have not covered anything please contact me again. Most of the people on here are much more experienced than I am and I am sure they will help too. They are all so very kind and supportive. You have taken the first step in this battle.

    By the way, tell your husband you love him and reassure him. He is going through his own terrifying hell. I am so sad for you all.

    There are people from all over the world on the site so someone will know what you are entitled to where you live. I really hope his Neurologist is a good one because you need support.

    Marie x

  • Marie, thank you so much for your reply and advice and I am terribly sorry to hear your husband passed away in February.

    We do live in the UK but where I live there seems very little knowledge about the condition and we travel to see the neurologist who I feel is very good.

    I work 30 hours a week and have carers helping me three times a day which i didn't want at first but couldn't do without now. My husband is 6ft 2 and nearly 17 stone so dressing/ undressing I find very hard and I feel physically and mentally drained. The hardest part of this illness is his change in personality. He is still my husband I know but very quiet and softly spoken and doesn't talk a lot which is so hard for me. Also he worries and stresses about things so I have to try and protect him from everyday occurrences and I keep a lot to myself so as not to worry him.

    He wears a bag at night so doesn't need to get up and we try and manage the toilet as best we can. I have recently dressed him in the pull ups which have helped with washing but I still need to change him which I struggle with.

    With his eating it's not the swallowing of food at the moment, even though he does cough quite a lot it's the feeding himself with a knife and fork and coordination that he struggles with and also the length of time it takes him to eat a meal. I cut all his food up and he only uses a fork. Meal times are very messy.

    Thanks again for you advice

    Lisa x

  • Lisa you need carers to help dress and undress your husband. You should NOT be doing it. Your husband is a big man and you will hurt yourself badly if you continue to do it. Have you been in contact with the community Matron? She can be contacted via the phone number for the District Nurses. Contact your GP too as he/she should be helping you.

    Not many people have ever heard of PSP sadly. The same is true of MSA and CBD. So you need the info from PSP Association but I would also advise you to read the MSA info and double check to see which seems more like your hysband. My husband fell backwards but he also fell forwards!! However if the Neurologist has done the eye test and your husband failed that then it sounds like PSP. Does your husband roll his finger and thumb together? That is another sign but not everyone has all the signs so you need to keep a close watch on his symptoms. Not easy when you are working?

    This site was my lifeline I have to say. I only found it last October! Everyone was so kind and helpful. Lots of experienced people on here as many had/have loved ones with PSP for years. A few people with PSP on here too. Your husband is so young it puts things into perspective. Your local Hospice can give you help too, and you should and really must have respite for your sanity and that of your children. Maybe you could take them away for a week? You might think you don't need it but you do.

    A huge amount for you to think of and take in but if you get stuck just ask and someone will reply.

    Love to you all.

    Marie x

  • Sorry for my ignorance but what are convenes?

  • Not at all...I haven't heard of them either.

  • Hello lisa. My hubby has PSP with an earlier diagnosis of parkinsons. He cannot stand by himself, no balance and stiffness. He cannot wash, dress or toilet himself. He wears a convene all the time. It is an external catheter, like a condom, with a bag. Less infections ghan catheter. I have to change this every day as he is unable to do so. It was difficult for me at first but i soon got used to it and was content to do it as it saved such a lot of laundry. He also wears pull up tena pants with a liner for the rest which i also do. All of this extremely personal care does impact on ones view of love within marriage. It changes to another kind of love and just as strong.

    Hubby now has a PEG tube into his stomach as he cannot eat, partly choking but his mouth is physically closing so cant get spoon in. I put feed on at night.

    My brother in law showers ger twice a week otherwise i wash and dress him myself. Its hard but I'm doing ok with it all at the moment. I do ask people to sit with him but i don't see us ever having a holiday together again. Sad but we have lots of memories. Ring the PSPA and try to go to heir meetings. Marie

  • Thanks for your reply Marie and I'm sorry to hear about your husbands symptoms. They sound very similar but my husband as yet doesn't have problems swallowing his food, just feeding himself as he tends to freeze in the process and he is very slow and messy. He coughs a lot also but as yet hasn't had any choking episodes.

    He also wears the bags at night but as yet we try and persevere with not wearing them in the day as he cannot manage them on his own and we had so many accidents with them it was just easier to go without. He still is fine walking once he gets going and walks bent forward.

    In reading the posts the conditions seem very similar but are slightly different from person to person.

    Do you not have any carers helping with showering dressing etc as my husband can't do any of these anymore but I have carers doing this when I'm at work?

    I just take every day... that's all you can do. Take care

    Lisa

  • Welcome to this site.

    My husband has PSP, diagnosed 2013

    The symptoms seem to vary a lot but the ones you describe seem to fit.

    My heart goes out to you having to face this at such a young age. How do your children manage ?

    Most of what you describe is how it is for us. It is really hard but you can rant on here !!! We share the problems, solutions, and even have a laugh at times.

    My only advice is to make the best of now and make as many memories as you can. It will inevitably get worse. Its a dreadful disease but you will still have good times.

    Good luck and keep in touch.

    love, Jean x

  • Thanks Jean for your reply. We do struggle but try to take each day. You're right we do have good times and have a brilliant family and friends who I wouldn't cope without. I wish I had joined this forum earlier because already I don't feel alone anymore.

    Thanks again

    Lisa x

  • Lisa welcome to the best site ever, don't think I could of kept going without all these lovely people, my husband was diagnosed in 2013 then again in 2014, been a hard journey, but one day at a time. Your husband is very young, like everyone says remember the good times and try and enjoy your time together now. Yvonne xxxx

  • Thanks Yvonne for our reply. I agree it's been a very challenging and a hard journey and all you can do is take every day. Take care xxx

  • I expect you have heard all the advice, I would like to welcome you to this support site for carers and those diagnosed with this disease.

    My husband; Geoff, was diagnosed in 2013 with Fronto-Temporal-Dementia, he too had a complete change of personality and became vulnerable in all ways. His physical health deteriorated quickly but his mental health remains fair and so he was then diagnosed in 2015 with PSP.

    The Neurologist who made the PSP diagnosis was keen to reassure us that PSP is very often mis-diagnosed in the early stages (commonly as Parkinsons) because the disease can disguise itself until it progresses as your husbands disease has. PSP is a very rare disease.

    You might want to consult your GP for a referral to the Neuro-Physio who will help with freezing. When Geoff freezes his head tilts to the ceiling and I gently rock his head to unlock him, when his body freezes I cradle him and sway with him gently (I also sing, that gets him moving LOL)! We now get night freezes and so I rock his ankles or the limb that is stuck.

    We now have support from Continuing Health Care and Marie Curie who night sit twice a week.

    Get the District nurses on board who will help with bladder and bowel control.

    Good Lock and stay with us, this site has been a life line to me and many others.

  • I will definitely take the advice you have given me. We are seeing the neurologist next week so we will hopefully get more answers. What I do find is my husbands condition varys day by day. He has good and bad days .

    Thanks again xx

  • Hi and welcome

    Early onset of this disease seems somehow doubly cruel. Take comfort that we all have following this initial diagnosis searched for why, how, and can they be wrong and there must be something we can do. Take some comfort that this diagnosis will open doors for help and support, and I agree with the other posts contact the association, refer yourselves to adult services, make a double appt with yout GP and discuss referral to your local hospice they will be invaluable.

    Enjoy the day

    Hugs

    Julie x

  • Sorry to hear of this... definitely sounds like PSP. No two people with PSP will have the same symptoms... some may have more and some may have less and at different times or so I'm told. You'll find that on this site there is plenty of support and real shared experience.

  • Hi, your story is very similar to mine. My husband also was diagnosed with Parkinson's originally, without the tremors and shakes. A few years later was sent to a neurologist who diagnosed him with PSP. He was in his early fifties when diagnosed, is 60 now. Our daughter was teen aged at that time also, indeed a strain on the family. Lots of info and support on this site.

    Joan

  • Thanks for your reply Joan. I knew he didn't have Parkinson's as he seemed to deteriorate very quickly and again had no shake or tremor. He was just very stiff and rigid. He has now seemed to plateau with some good days.

    Lisa

  • So sad to hear all this. I went all through this with my husband. Is there anything that he enjoys that you can divert him with? Does he listen to music or is he too preoccupied? Talking books if he enjoyed reading? Will help anyway I can as I have been through the same. x

  • You must be in North America to be responding this time of day :) enjoy those plateaus. But remember, when it gets too tough, don't go it on your own. If your health declines because of it, you'll be no good to anyone, so... :)

    Joan

  • You go ahead and tell the neurologist to do a gaze study on him....They take a sash of cloth which has horizontal stripes on it and direct patient to follow one of the stripes on the sash being pulled through dr's hand....if the eye cannot fix on one line of the sash, it may be PSP! Simple as that! I guess! since it is such a confusing and has a mind-of-its-own type disease, your husband may not be doing that which "should be done, per psp" My husband didn't fall directly backward till years after....he fell more northeast. or southwest not straight south.....First nuerologist told my husband "youre just getting old " when we thought he was having ministrokes....My friend said it sounds more like Parkinsons....when I looked up that, I found PSP! ....OMG everything to a tee! He was 52 a t the time . He was diagnosed at 53 but he had been having symptoms for years! So my take on this is be your husbands greatest advocate....you tell the doctors this and that and see what happens....I want to say your precious man is much too young, but my daughter just got on a site and most/many of the people were in their 50s with PSP so I don't know what's going on....I do know this...you need to take care of yourself physically, mentally and spiritually . Get your self some rest....ask for help! others will want to help....it makes them feel good...eat enough and good food...and plenty of water...Emotionally, remember it is PSP not your husband ....he may change in behavior but that's not him .....love the man you married he's still there....Talk with your children, be frank. Let them be ok to discuss their fears concerns worries angers etc to you or dad....If they need counselling.....get it.......Public school system may have something though there may be something even better out there. Your husband and you may need counselling....that's ok I did not do well in the beginning. I think I was in more denial as I look back ...I think my mentality was "we are going to beat this....or maybe just stay as healthy as possible" and so my husband and I went tot the gym 2 to 3 times a week ...I still think this was good and if your husband and you like to work out find a good regime. Most importantly is your spiritual self. God is and has been there and if you are a praying person , then ask Him for guidance as you and your family go into this new area of your life. I am sorry that PSP has found you, but remember it has not conquered you spiritually! That's between you and God. and with that I will leave you with some verse from the Bible that help me ghet through it...remember too you have us to get through this...don't go it alone. we are hear for you

    AVB Much support to you and your family

    Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.

    Matthew 6:34

    The Lord is near all those who call upon Him, to all that call upon Him in the truth . Psalm 145:18

    For God has not given us a. spirit of fear: but of power , and of love, and of a sound mind...II Timothy 1:7

  • Thanks for your reply and kind words We are seeing the neurologist next week so will mention the gaze study to him.

    Lisa xx

  • Oh do keep us abreast of docs news.....Remember Lisa, you are his greatest advocate....start searching (I'm sure you are) for info and then questions thereof.....you tell them, the doctors, this or that and it makes for a better conversation!

    Goodluck darlin

    AVB

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