Just retired and husband diagnosed with PS... - PSP Association

PSP Association

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Just retired and husband diagnosed with PSP. I would love to hear from others who have partners with this dreadful illness.

Mk10
Mk10

I would love to hear from anyone whose partner has this dreadful disease. I have some support and some good friends but it would be great to hear from anyone who is going through a similar situation. How do others manage to take holidays with their loved ones. How do you manage the continence problems.

39 Replies

Hi Mk

Firstly I'm very sorry to hear this

Psp is s**t!

My dad was diagonosed about 18 months ago (from memory)

He s 76 and up until the last 3 years has always been active and enjoyed numerous holidays

I'm afraid he hasn't been on holiday now for a good 2/3 years as the risk of falls is too much and the incontience (well it's pretty horrific)!

I'm sure loads of people will give you great advice on here (the people on here are truly amazing and their advice n support is like gold dust)!!

Therefore I'm sure others will inspire you and give you lots of help!

I would say this, do everything you can now, whilst you can!! Don't leave it, enjoy every moment that you can!!

Hugs n best of luck

X

Mk10
Mk10 in reply to Satt2015

Thanks for your reply, yes it is a s....t disease and leaves me feeling helpless because I cannot do anything to prevent it worsening and the rate it can deteriorate is an unknown from what I read. So yes I will take your advise and do as much as we can now before the symptoms worsen.

Satt2015
Satt2015 in reply to Mk10

Hi Mk

If you are in the uk call the Psp association

Make sure you have the support of a neuro team

Ask age concern to come out to you to help apply for attendance allowance (it's not means tested)! A taxi card and dial a ride and a blue badge!

I also spoke to dads GP and dad is now a patient at the local hospice, they are amazing! They are NOT just there for end of life care! Dad now goes there once a week for music therapy and I'm attending a carers course there!

Most of this information I obtained from the lovely people on here!

Basically accept all the help you can!!

It can be a long, frustrating n lonely journey!

Get all your family n friends involved n tell them to read up on Psp as hardly anyone including the doctors have heard of it!

Hope that helps n hasn't scared you!

❤️

Steve666
Steve666 in reply to Satt2015

Can I ask how do you get a taxi card ??? Thanks

Satt2015
Satt2015 in reply to Steve666

Hi

Contact your local borough council and advise you wish to apply for a taxi card

They should send you a form to complete

Hope that helps

X

Hi MK10 my husband was diagnosed in 2014, we think he has had this horrible PSP for over 6 years, he is in a wheelchair most of the time, holidays are very difficult, but if you husband is able to do holidays, enjoy them while you can. Some days are harder than others, so many different things get thrown at you, this illness is evil. Welcome to the site, everyone is so helpful and lovely, there is alway, someone with a kind word, when you are feeling down, they help to pick you up again. Sending you a big hug, and welcome once again 💐💐💐💐 Yvonne x

How old is your husband MK10?

Mk10
Mk10 in reply to psplife

He is 67 yrs. still young to develope such a sinister condition. It is like the unknown not knowing what it will lead to.

bobsxx
bobsxx in reply to Mk10

Its so helpful to me reading these posts and comments, my sister is 22 years old and has recently been diagnosed.. The youngest case known so far! I'm 19 and struggling to deal with it as there isn't much to know or that I can do.. It really is awful

easterncedar
easterncedar in reply to bobsxx

22!!! Oh, my dear. I am so sorry for your sister, and for you. You both are terribly young for anything like this. May I ask where you are? I hope your sister has a good medical team, especially as her situation is unique. Are you near any good neurological facility?

It's good you have found this community, which is a great source of practical advice and emotional support. Please keep in touch. Folks here care. Best wishes, Easterncedar

bobsxx
bobsxx in reply to easterncedar

Thanks so much it means a lot. We havent really been offered much as it is a whole new thing for them as she is the youngest person to be diagnosed. I am in Manchester x

psplife
psplife in reply to bobsxx

OMG, 22!! That is too young. That breaks my heart. Find a great movement disorder neurologist if you can.

Best wishes, NSH

psplife
psplife in reply to Mk10

MK10

We found out about PSP at age 67 also! It is too young for this awful disease. Just last night while in bed, he asked how this could of happened to him. I don't even know what to say but to tell him that it just doesn't make sense and out of so many diseases in this world, a brain disease??? It just doesn't make sense. You are right, you don't know what to expect and every day is different. He knows he is falling apart and says he just feel lousy and there is nothing I can do to help him. Terrible!

NSH

Doglinton
Doglinton in reply to psplife

I know. I have no words of comfort as I can find no sense in it. I can only say you are not alone in your despair.

Somehow we have to find the strength to enjoy today as it will get worse.

Not any comfort but it is my mantra.

Lots of love, Jean x

My husband was diagnosed with PSP November 2015 but PD since 2012. Our vacations/holidays are getting difficult. I am thinking of renting an RV for our next one so that we can stop along the road if we need to and he can also rest on a bed the entire time if he needs to. Take advantage of every good day! Get out and do everything you can now. Maybe it is good that you retired so that you can travel if he is still capable. We do weekend outings (beach, etc) but he can only handle a few hours at a time. This PSP is moving at an accelerated speed! It is just awful! This site is made up of a group of people that are all so supportive and it helps to know that you are not alone or the only one that is going through this PSP nightmare.

Best of luck.

NSH

Mk10
Mk10 in reply to psplife

Thankyou for your reply. Everyone who replied are so kind. Their words made me cry but so glad to have other carers to speak to and understand the frustrations.

If you are in the UK have you thought about going to a PSP group? You have a chance to find out from other people ,in the same situation as yourself, what has been helpful to them. We managed several holidays in the UK in places which had been converted with the needs of wheelchair users in mind. Our last holiday was six months before my husband died in a very elegant flat in Kendal.

My husband,Ben was diagnosed in Nov 2014 but had symptoms for at least 2 years prior to that. I too have concerns about holidays as his condition has deteriorated over the last 6 months and his balance is not good at all and cognition has gotten worse. He won't have any aids or wheelchair so I am his walking aid.

I am frantically trying to think where we can go on holiday, we went on a cruise last year which suited us in the circumstances but not sure I can cope with that now. I feel that a holiday would be something to look forward to but also brings extra stress for me having to sort everything out and then deal with the actual holiday. We did go to Centre Parcs with our family last October and that worked well as I had their support but the the thought of being on our own doesn't fill me with confidence. I guess these are some of the emotions you are feeling too.

Ben doesn't have incontinence problems as yet, although he has had a couple of accidents, however when he needs the loo it is quiet urgent so needs toilet facilities nearby. I am racking my brain where is best to go that isn't too far to travel, a place that we would enjoy and suitable accommodation, sure there is something out there so will keep searching.

PSP certainly tests you both to the limit, I hope you find a 'holiday solution' and manage to get through this horrible journey with love and support of family and friends.this site offers lots of valuable advise and support, it is invaluable. Take care and keep posting. Xx

MK, I took early retirement 2011 to help my wife who was at the time having balance issues, diagnosed with PSP Sep 2012, but symptoms since 2009. We were able to do normal holidays until 2 yr ago. We did a couple of our bucket list holidays (Yellowstone, Sri Lanka) but last foreign trip was 2013, last self catering Centre Parcs trip before Christmas 2014. Now too difficult logistically and M would not enjoy the travel.

I have said it before in earlier posts, but cannot emphasis it too much while he can mobilise himself without too much difficulty and transfer easily to from wheelchair without too much help get as many happy memories: trips out to favourite locations or new exotic ones take lots of photos of both of you together. These you can put on a screen and they will lift his and your spirits in the dark days to come. Sorry but the last comment is truth you both need to accept that PSP will deprive you both of freedom and facilities it is progressive and sometimes creeps up on you slowly and other times takes a facility overnight. There are good days but increasingly they become rarer. It is useful to have good memories then.

Best wishes and hope PSP is not too aggressive. Tim

Hi

my dad was diagnosed about 4 yeas ago now.

all the comments above are valid and please do as mention - one more thing

make sure you do get time for you and start this now - my mum sees one of her friend every week - without my dad - it is her time away.

my mum also has psychological support.

and try to make sure you sleep.

my mum and my dad sleep in different rooms as my dad has a hospital bed.

all the best

lost of love

G

My husband was diagnosed in Oct 2014 but had symptons for some 18mths previous. He had only just retired when everything hit him. At present he is doing fairly well, just have to watch his mobility, pretty ok with a wheeled walker but using just a stick now is getting difficult. He doesn't like to get involved in conversations as he can have problems with a word and then gets all flustered, angry with himself and upset. He is better at conversation than he thinks, its a confidence thing really. If you are in the UK the PSP Association is the place to start, they have Regional Help Specialists who can assist with what you can get in your area, arrange stuff and get the benefits sorted. As far as holidays are concerned, we tend to stick to long weekends, hubby can get a bit anxious away from where he knows the place well for getting around best for him. We tend to travel by train - he has a Disabled Person's Railcard - gets both of us about a third off train fares and we can arrange for Rail Assistance - staffed by the railway you get met at the station you are travelling from, a wheelchair on hand if needed, a ramp to get on the train, they settle you into your seats and you get met the other end/or at each change if applicable with the same help - makes life easier for me as I only have to worry about the luggage. There are also holidays especially for carers and the person they care for, am considering one this year - it seems the carers can get time off to do things whilst the patient is taken care of too. These can be best looked up on the internet. Hopefully you will get all the help you are entitled to and know who and where to go for the extra help you will probably want as time goes on. All the best, thinking of you.

easterncedar
easterncedar in reply to GillJan

Gilljan, my guy's speech therapist just started working with us to help deal with the problem of lost words in conversation. There are a couple of techniques she has offered that with practice I hope will help. He does have so much trouble that he often won't try at all, and I miss his conversation so much. I offer this in case you might be able to look into speech therapy or something like that for your father. I do sympathize! Love, ec

Hello MK10 and straight away I identify with you. I stopped working 3 years earlier than I had intended to become the main carer for my wife (Elizabeth). The other option I had was to carry on working and use some or all of the dosh either to pay for a couple of visiting carers to attend daily or even pay for residential care. I did consider it, but I felt that would be a tad unkind or even cruel - so here I sit.

Must be almost 4 years now since we had a holiday. The last one we had was at a large hotel that specialised in the older people market and was disabled user friendly. I've got a big car which is just as well as I had to pack a mobility scooter, a wheelchair and a bath lift - I took the back seat out to get it all in. In short, neither of us enjoyed the holiday much and there was a false fire alarm one early morning. We had to evacuate to the carpark and it was tipping down, so we haven't been away since.

I think constipation is a common side effect of one or other of the meds our loved ones take. I try to keep Elizabeth regular by giving her stool softeners daily and a mild laxative every other day. She normally senses when she needs to go and I normally get her to the toilet in time. I don't want her to use a commode, I couldn't handle that - no pun intended. I have a high tech bidet seat fitted to the loo which takes care of the clean up. Bidet type seats are available on the internet and start at about £50 up to about £400. Don't forget, we're exempt VAT on most things our loved ones need for 'normal living'.

Hugs 'n' all then - Chris F.

Taking holidays with someone with PSP probably depends on the situation, such as the age and sex of the person with PSP. In our case, my wife has PSP and is only 54 years old and in the very late stages, probably year 6-7. With me, being a 55 year old man, I am able to practically carry her if need be, which I do, when we go to the beach for vacation. We took our last vacation last August. I had made the reservations about 6 months prior and was afraid she might pass before the time arrived. We invited my wife's mom, our adult children, and grandchildren. So there were about 8 of us in a 4 bedroom condo. Having family there to help on occasion was helpful also. So best to not go alone. We used to go on lots and lots of cruises, mostly by ourselves. But I'd be afraid to do that anymore.

As for incontinence, yes, several of us could write books on that. I've pretty much become an expert on the female urinary system and can catheterize my wife with my eyes closed. Can't provide that much info on men. I tried to straight cath myself one time, just to see what she was experiencing and halfway through I chickened out. I don't think the cath was long enough (haha). Getting your loved one (male or female) to wear diapers is a big step. The pull-up type, like Depends, are much better and more comfortable. For men, there are devices that they can wear, similar to a condom that collects the urine into a bag that is strapped to his leg. My advice is to get him to a urologist to be evaluated. It will make it much easier on both of you, versus all the wet clothes, bedding, etc.

Hang in there and take good care of both of yourselves.

Ketchupman

Hi Mk10, my husband was diagnosed in August 2014 but is still mobile although unsteady. No falls or continence problems yet. We always went on a 2 week summer holiday abroad but this year he only wants to go for 1 week which we have booked Portugal for in May. I get the impression he doesn't like being away from home for too long now.

Thanks to advice from others on this site I don't book too far in advance, as one post said, 'better to pay more and go than not be able to go and lose it'.

We are currently making happy memories with a 4 day break in Chester and he managed to walk the ancient walls around the city albeit it took all morning with 1 coffee break but at least he did it. Now resting in hotel.

So do what you can now and enjoy.

Lots of love

Nanny857

Hi, welcome to the best site on the web. We are all Carers or sufferers of PSP, so will tell it how it's is!!! As someone has already said PSP, is the pits. I don't know of any other illness that is SOOOO cruel!

Holidays - that was our biggest concern at the beginning! We spent all our time travelling. Flying is great, get wheelchair assistance and you fly through all the queues. It totally free and relatively stress free. If you can afford it,upgrade to business class. Less people to worry about in the loo queue!!! Most hotels do have disabled adapted rooms, if you need them. Do as much as your husband and bank balance will allow. S was diagnosed in 2013, although had symptoms for many years before that! We travelled regularly to South Africa until last April. We were lucky, we had a house over there, so I knew I could cope with him, when we got there. The 20 hour journey, while tiring, he coped with very well! Most of all, travel NOW, don't wait. This disease changes all the time, sometimes, very quickly, after a big fall etc! You can get insurance, we always used Staysure, but there are loads of others.

Continence problems - they are the bane of all our lives. My advice is give in as soon as your husband will let you. Get him in pads, or better still, get a convene. (See your continence nurse!). this will enable to you to get about, without the strain of this problem!!! I don't normally say give in, but with the bladder, we wasted so much "good" time, in grotty public toilets, worrying about accidents. Or worse, having to deal with them!!!

Feel free to ask any question, rant, rave, kick or scream as much as you need. You are amount friends here, nobody will judge, unfortunately, we all know exactly how you are feeling!

It is one day at a time and staying as positive as is humanly possible! The most important thing you MUST DO, is learn to accept help NOW!!! Every single one of us, thinks we can cope on our own. Every single one of us is WRONG!!! The sooner you accept this, the better your husbands care will be! You are now the most important person, your health is paramount, for his well being. Like in a plane, "put your oxygen mask on first, before helping others". Look after yourself, then you CAN care for your husband!

Sending a big hug!

Lots of love

Heady

Hi, MK10.

My husband was diagnosed nov. 2013, his 80th birthday. He'd had symptoms for 4/5 years. We went straight onto a planned holiday to Costa Rica !!

Since then we have been each summer to Majorca and numerous times to our holiday home in Yorkshire. I am hoping we will manage Majorca again this June.

So, I would say adventure holidays , probably no, but worth others if you feel you can cope with the difficulties.

For me, when the problems outway the benefits I will stop. I will certainly now be looking at wheelchair friendly places for the future. He doesn't depend on one yet.

Having others around is necessary for me as C doesn't talk a lot.

I echo everyone. Make the most of NOW. It will get worse.

love, Jean x

Mk10
Mk10 in reply to Doglinton

Thanks Jean, so great to have sound advice from others experiencing similar problems which can be so overwhelming. My husband cannot walk any distance at all so resorting to a wheel chair unfortunately. As other say symptoms were there two or more years ago but you accept the changes as sometimes a little bazaar but nothing to be too alarmed about.

i would like to know if anyone lives near to me in Shropshire or surrounding areas to meet up occasionally. If you live near do let me know. I also have family in Wimbledon so if anywhere near there do get back to me.

welcome to this special club.

my advice is do not think ahead,the disease is progressive but not predictive.

holidays together are important, we now hire adapted static caravans and they suit really well.

i also retired to care for rog, but make a huge effort to maintain friends and social contacts.

with love

julie

Mk10
Mk10 in reply to Julieandrog

Hi Julie thankyou for your reply. Where are the caravans you use. We are in Shropshire and the caravans I find are in South Wales. I am making a real effort to keep up my friendships. I realise we need all the support going but am so glad to have found this site to share this traumatic illness with other carers.

hi

i have found caravans by just using the internet finding a site then asking if they have any adapted statics. to be fair the bigger companys like haven and park homes have more selection. with this illness you quickly learn to start thinking laterally!

julie x

I know just how you feel, my husband Retired in 2013, I thought he'd made up his mind that 65was old so that was how he was going to act! After about 9 months, I was watching him and thought, he's got Parkinson's, so went to GP, the neurologist always thought it was PSP, but had to do tests, got diagnosis in November. It was obviously the PSP that had mad him old before his time!

I can't give much advice yet as new to this myself, and most days go between,screaming,shouting or crying to stressed and depressed!

We don't have many friends as F has always been ' a keep yourself to yourself' sort of person, it's our second marriage so children are not 'ours' so that doesn't help either, so I find this site a great help

I've been struggling to try and get any help for my husband beyond seeking the neurologist every 6 months, so good advice from people here was tho speak to PSPA care advisor, she really listened and chased up physio (not that that turned out to be any help!)

It's such a horrible disease, all you want back is the person you fell in love with! I feel like he's turned into a zombie that shuffles around the house

We are still hoping to holiday(in england) haven't made up our minds where yet, it'll have to be somewhere fairly flat so I can push wheelchair! We haven't quite got to incontinence problems yet, although the his urge is more frequent and more urgent! Other than getting professional advice I can only suggest pads to cope with outings! But I guess you husband would rather stay at home!

Xxx

Mk10
Mk10 in reply to Debbieann

Hi, Like you my husband seemed to becoming quite a fossil compared to my outlook on retirement. He would not try to use an iPad and often could not manage his mob tel. I feel now that the symptoms were there 2-3 yrs ago but following a couple of nasty falls he really started to develope more problems. He can only walk very short distances before he starts to lean forward and his steps quicken which if I do not hold him back would end up in a ruck on the floor. I have had some lovely replies to my cry for advice so many thanks for replying. Please keep in touch, we do need each other to share the many problems some of which are still unknown to us. I was a nurse and managed a sheltered scheme for many years providing support to people with many conditions but I think this one is probably the worst from what I am hearing and reading. Take care. Hugs x

Dealing with Incontinence: Depends, CVS Disposable Bed Mats: cvs.com/shop/personal-care/...,

North Shore Air Supreme Briefs when Depends are not enough

For falls: Ice Halo: icehalo.ca/ and a Physical Therapy belt for support.

and Both of you Need to get out often, otherwise you will be even crazier and more frustrated.

Mk10, sorry to hear about his diagnosis. As for us, we are seniors and haven't gone on any vacations since diagnosed. Our life is upside down but try to adjust to a new way of living. Your in the right place, all of us are dealing with the same thing. Feel free to vent or ask questions. Someone will answer them. I didn't see your post until just now.

Auddonz

My husband wasn't officially diagnose until he was 70 . That was after a few years going to the GP and asking him he John might have oarkinsons . I had Beengoogling the symptons he had .. we knew nothing at all about it.

Don't look too far forward everyone is different . But the same .

I met John when he just came out of national service and fit in every way ...he swam daily in his lunch hour , all his life until now of course.

. He always had a v painful dropped shoulder . Thought the swimming would help . Maybe it did . Exercise is good .

He also had the Minuteist handwriting . Would get impatient and uncomfortable in queues . I just thought he was impatient anyway .

He could never hold his gaze . Had episodes of a stammer like speach . Couldn't hold the telephone to his ear .

He held a job dealing with the public and press . Wrote for newspapers etc etc . Never afraid of anything ,

It was just how he was . So please don't think life stops now you have found out . Maybe if we had know he had Parkinsons it might have held him back all those years ago . Of course on the other hand it might have helped , it certainly would have helped me understand and I wouldn't have got so frustrated on times .

Wondering why he kept falling over to one side if we sat side by side . I was always pushing him a way he was heavy .

So may different things .

John is now 82.. He isn't good now but we have made lots of happy memories together over 58 years

Mk10
Mk10 in reply to cabbagecottage

Thankyou for your reply. Yes it is frustrating when John does not see that he puts himself in danger when he sits on the corner of a seat instead of in the middle. His speech at times is difficult to hear and he cannot make himself understood. We do actually have lots of funny moments and in lots of ways we are getting on better than before when I did not know or understand what exactly was happening to him. I have been to a PSP ass meeting in our locality recently which was very useful and since have had conversations with two people who also attended. It has been so good to know others who can fully understand the situation.

cabbagecottage
cabbagecottage in reply to Mk10

Yes it is . Can be lonely otherwise and it helps you understand if something happens differently .. Share lots of tips. It's what we all do . Don't be afraid to ask anything however personal . We have area all going through it and have already done so . At different stages

My husband has Parkinsons and quite advanced now . Not the same but similar . Lots of lovely people here to listen and give their opinion and if the v good advice ...

Mk10, no holidays for us, he is to weak and I can't figure how we would manage. As for incontinence, 2 pair of depends and an extra small pad day and night. Don't know where you are located but we get them from the VA at no cost. Yes it is a terrible horrible disease unfortunately. This site is my vent, trade ideas or things that might work and how we all manage

Auddonz

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