Thank you everyone for such a warm welcome to this site - I am sure it is going to help- my wife goes to bed every night at 9 so the rest of the evening is quite long especially as I have had to make our sitting room into a bedroom for her so I retire to the kitchen and me and the cat contemplate our exciting social life together in dubious silence . Truth be known I am fairly worn out by the end of the day but this has given me a new raison d'être ( spelling?) I am afraid I shall be asking lots of questions because I can't seem to get much idea from the professionals . For example my wife apart from the falls and vertical gaze palsy seems to be accelerating down the dementia path coupled with obsessive compulsive behaviour increased short term memory loss and some quite difficult to deal with personality traits along with cognitive impairment - it all seems to have come at once and is escalating. Is this how it goes ? Does it slow down or just keep going on downhill ? I would welcome other people's experiences .Time for me and the cat to retire to bed and I look forward to your inputs .Thanks Georgpa
Thanks: Thank you everyone for such a warm... - PSP Association
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Hi Georgepa, I hope you, your wife and the cat all had a good night. You asked if the decline slows down. My husband has dips when the illness progresses but then seems to level out for a while before the next dip. Some of the level times have been quite long. Infections can change things suddenly so when he does start dipping again I look out for signs of urinary tract infection. I think with this illness, every one is different
My husband sleeps on and off most of the day, even in his wheelchair when we are out, so doesn't want to go to bed before 11pm. I'm off to bed now before I turn into a pumpkin.
Nanna B
Hi NannaB - well the cat had a good night unfortunately my wife had another fall in the early hours of the morning and couldn't get back to sleep and the OCD means it takes along time to get her settled as everything has to be done in a particular way and several times over ! Thanks for the information - how long has your husband had this illness? It is such a strange illness as you can never quite get a handle on it - you can not seem to tell how far down the line you are .Do you feel that turning into pumpkin would seem to be quite a nice option sometimes ?
Oh yes, I have thought of escaping quite a few times but after 42 years of marriage, I'd take my husband with me! Colin was diagnosed in September 2010 but looking back, it probably started several years before.
Colin now sleeps downstairs in a hospital bed with sides so he doesn't fall in the night anymore. When we were still in the same bed I used to baracade him in with chairs so I woke up if he tried to get out. I had a toy frog that croaked if it was moved on the door handle and a battery motion sensor light at skirting board level so if he got his legs out, I woke up. It didn't save all falls but certainly prevented many accidents. I put in all these booby traps after he fell down the stairs from the top to the bottom one night. He had gone to the toilet and saw a "bit" on the carpet at the top of the stairs so bent to pick it up.
He can still get off his rise recliner chair but would fall so now I have a baby alarm with a camera and monitor so I can see him wherever I am in the house. If I'm not looking at it I hear the motor on his chair so can get to him quickly. Colin likes the TV on all day ( he rarely watched it when he was well). If I hear something interesting through the monitor, I'll look at it to see what they are talking about expecting to see the TV. Of course, all I see is Colin; usually the soles of very big feet if the chair is reclined.
I hope tonight is better for you.
Nanna B
I've been married 47 years and I am ashamed to say I do sometimes feel like just disappearing by myself and not coming back - that's an awful thing to say isn't it . Still I suppose I know I won't really do it . I sometimes just feel more sorry for myself than my wife which is even worse when I think what she is having to deal with . But sometimes you just feel so ground down . We have had two falls in the last 24 hours and three near misses and the occupational therapist called today and tried to instruct her how to get up from the commode using both hands and transferring to her frame so that she doesn't fall . He's a nice enough lad but he doesn't really grasp that she won't retain any of his instructions and by tomorrow won't even remember he's been . Still that's enough self pity even the cat has gone out in disgust . Bed I think .
Do you ever have time to yourself? I have sitters twice a week from Crossroads. To start with they came for a couple of hours twice a week but then Crossroads phoned and asked if I'd like 4 hours on Monday and 5 hours on Wednesday. Where we are in West Kent we don't have to pay. Colin also goes to the Hospice day centre on Fridays so I have quite a few hours a week to unwind. I make sure I go out, if not to my art class or with friends I go to National Trust properties or gardens. The first time I had lunch out on my own I felt very conspicuous but now I take a book and am fine and eat out as much as possible, something we rarely did when he was well. I still cook in the evening so I don't have a huge lunch. We aren't going to take any exotic holidays so may as well use our holiday money relaxing. Before the sitters and the Hospice gave me a break I did think I would crack up and had many, 'I Can't do this any more moments'. Everyone needs a break so if you don't get any now I recommend Crossroads.
When my husband was falling a lot I told him I was going to get him skateboard safety clothing.....helmet, knee and elbow pads etc. I never did but bought my baby monitor instead. It helped save many falls. I was concerned that he may think the cameras were too intrusive but he said he liked them as he didn't worry about being left alone any more. Even now he manages to wave to me via the camera sometimes. Past my bed time again. Colin and the guinea pigs are all fast asleep.
Nanna B
Yes I do have some help , they are not free like your crossroads sitters but they come in twice a week for three hours at a time.. My wife really dislikes them coming in and resents me going out which I understand because she is totally dependent on me for anything she wants to do .She also can't understand why I need a bit of time to myself . She has withdrawn from social interaction as she finds following conversations and contributing difficult as she often struggles to find the right words but the carers understand this and do other things like ironing (hurrah ) and just keep an ear open for her and make her a drink and so on . I think she is gradually getting more accustomed to them but she still makes it difficult for me to go out and at the moment I have to say that I don't get much pleasure from going out myself as I haven' t really got used to doing leisure time things on my own yet .When I was working up until May this year I was an antique dealer and was off on my own a lot but always with a purpose and it is so very different now but I will try and take a leaf out of your book and try to do more positive things on my own . I think that although this illness has been coming on for several years my wife has only just grasped the fact that she will not be able to do lots of things which she enjoyed ever again and although the dementia is accelerating she is still savvy enough to understand this and is grieving for her lost life . It sounds funny but in some ways the dementia short term memory loss sometimes helps as she forgets what she has been thinking about .I feel we are kind of on the cusp waiting for the next stage but with one foot still trailing in our past life .Anyway I take on board what you are saying and shall just have to see what I can do .Friends have offered to come and sit with Veronica but she does not want to see them and gets in a state of high anxiety and panic at the suggestion but maybe that will pass . Well bedtime and book I think .
Hello Georgepa
Sorry if the following is a bit "involved"......
Often the within the list of PSP symptoms one finds the term (mild) dementia. This may be misleading if the PSP sufferer is showing typical signs of what is sometimes called "subcortical dementia" where there is a tendency to show changes in their speed of thinking and ability to initiate activities. This is not like "cortical dementia" seen in such conditions as Alzheimer's, with memory and language problems. When this symptom of difficulty with slowness and finding the right word or phrase etc is seen early in PSP sufferers, some physicians may mistake it for Alzheimer's and diagnose it incorrectly.
Having said this, it is quite possible for PSP sufferers to also develop other types of dementia (since there is quite an overlap in conditions with PSP). For instance, they can still develop Alzheimer's (as shown on many PSP brain autopsy results). If there are distinct behavioural changes (personality etc), it may still be part of PSP because of damage that occurs to part of the brain (in the basal ganglia and midbrain) that is responsible for some emotional responses. However, it is also possible that another type of dementia is showing itself, called behavioural variant FrontoTemporal dementia (in which the same brain protein "goes wrong" as in PSP, called tau).
(Additionally, one should remember that other dementias should not be ruled out like Parkinson's dementia or vascular dementia. Some medications can cause problems of confusion and memory loss).
With respect to escalation, it's not possible to say if the type of dementia (s) is not fully known. Many symptoms in PSP will wax and wane, but generally the typical pattern is for most symptoms to progress over time, and many can become severe in the latter stages of the disease. Interestingly, it's been shown that an early symptom of PSP can be personality change, sometimes associated with "mild dementia", but over the course of the PSP disease, this symptom seems to stay relatively level. However, others on this forum will be caring for someone who has severe progressing personality changes.
There are no set rules or patterns with PSP especially since there is so much overlap with other similar neurological conditions.
I wish you well as you care for your wife through these difficult times. Stay tuned to this forum and hopefully the experiences of others will put things in perspective for you.
Cheers
T.
Thanks for the reply - all information is most welcome and very helpful
Hi Georgpa, My husband would seem to have similar symptoms to your wife. He was diagnosed in March 2013 but had had symptoms from July 2010. He is 67 and a total technophobe so I am the one ploughing through all the on-line material I can find to learn more about the disease. In another life I taught research methods to undergraduates so am well used to on-line research and my conclusion is that, as other sufferers/carers will tell you, there is no 'normal progression' nor many common symptoms for PSP. Chris had horrendous falls on a daily basis until he stopped taking levo dopa at the end of August. Fortunately, in his other life he had been very fit, is not tall and amazingly has only fractured one bone in wrist in over four years of falls. Now his eyes are more or less fixed vertically, he has several types of OCD, increasingly becomes confused, can only walk with help and has begun to have difficulties eating - though the latter would seem to be still in early stage. Until June of this year we had had sudden decline followed by longish periods of stability. Since June, when urinary incontinence at night started, he seems to have been declining rapidly. We live in south west Turkey, have an excellent neurologist and friends who help out. To date I am the sole carer but am about to start investigating buying in some help to give myself time off. Like you we have moved downstairs and our winter dining room is now a bedroom. Luckily I still have a sitting room in which to watch DVDs after he has gone to bed around 9.30pm.
In terms of the disease there is nothing you can do apart from caring, trying to keep your wife as comfortable as possible and, if you are in the UK, tap into support from social services, NHS, etc. And, in my view most importantly, get some help to give yourself a break. If you become ill who will take over? That is a question for which there is no answer in my case. Hence the importance of trying to ensure I continue to enjoy the good health I have at the moment.
And forums such as this, or the US version on curepsp.org, have tons of stories and experiences from PSP sufferers and carers the reading of which, I find, can always convince me that it could/will be worse.
Good luck.
Thank you so much for your response and yes I take your point about trying to stay healthy - I am in much the same boat as you although in the UK ,most of our friends are scattered all over the place and family too . When the professionals say you must take break they don't seem to realise that you don't have a lot of options . The area Parkinsons nurse suggested some respite care in a good nursing home and when I looked it up it was £1000 per week and that is just out of the question. People are very kind and offer support but the obsessive behaviour that comes wit this horrible condition makes her very difficult to help . Still I will try but when the Dr says you must take care of yourself I have a terrible urge to have a two year old's tantrum - have resisted so far !
Just read your reply to Pattz. On Friday the nurse in charge of the Hospice day centre asked me if I had considered respite with Colin going into a home for a week or 2. Last year he had to as I hurt my back but it wasn't a rest for me I was in so much agony. I said I didn't want respite and she asked me why. I told her I didn't like leaving Colin in a home but said the main reason was because I didn't think I could go back to caring if I'd had a break and got out of the routine. If I got used to having a lie in bed in the mornings, going out when I wanted to, not having to do washing every day, cook just for me with no liquidising and always keeping an eye on my husband, how would I feel about starting it all again after a break. I think I know; I wouldn't want to do it.
Nanna B
Is your wife on any medication , Since I stopped using the agonist patch on my husband who has Parkinsons lots of the symptons you mention have improved beyond all expectations . he had been using it for quite a few years .
As far as medication is concerned you SOMETIMES ARE DAMMED IF YOU AND DAMED IF YOU DONT . I am starting to go with my gut feeling these days and we are no worse of and even a bit better
Thanks for your response - no she is not on any medication for PSP other than an anti depressant - guess you are right just soldier on
Hello Georgepa .. Your unfortunate experiences bear many similarities to my own in relation to my wife's progression through CBD ..particularly her mental decline, OCD .. personality change etc. major difference is that my wife has been confined to a hospital bed in our sitting room since April.. she is not hoisted out of the bed .. so the word 'confined' is not an exaggeration. Sandra only has use of her left hand for limited tasks such as taking food to her mouth (crisps, scotch pancakes etc) she cannot handle utensils or drinks.. She can just about use her e-cigarettes which she transfers to a make up bag on her bedside table .. no other item is allowed on the bedside table. Whilst in hospital for 5 weeks from March Sandra was barely eating or drinking .. We have now established a system where her calorific intake is virtually 'normal' for somebody who is bedridden.. Sandra also suffers from Crohn's .. it would be impossible to cope without four daily visits from carers (2 per visit) plus 2 respite breaks of 3 hours weekly. I have two dogs for company and to greet visitors Family and friends are wonderful GeeBeeOdiham
Thanks for the reply you sound further down the line than us and even more to deal with - you have my sympathy I find the OCD one of the most difficult things to deal with i.e. remain patient whilst endless lists are drawn up in minuscule handwriting and everything - like your wife arranged and rearranged in a particular order.It gets very wearing but perhaps you get used to it in time .
Early on, I took DonepezilHCL, which is an early Alzheimer's drug, even though I don't seem to have Alzheimer's. The neurologist said it was worth a try. It made an amazing difference for a year or more. I'm taking half a pill, and understand that can be increased. I believe it is the generic form of Arecept (sp).
Welcome to the club georgepa. It is nice to be able to get help and advice from people that know what you are dealing with. I keep saying this psp is strange. My Brian can no longer walk and his eyes are bad but so far his talking is ok but have noticed that others can walk but not talk so it depends what part of the brain is clogged up.
Brian starts to get anxiety attacks about getting to bed some evening he is so bad that he is in bed by six and then by 4am I am getting him up because he is all fidgety and has had enough of being in bed. All good fun Janexx
4am !! I should count my blessings - my wife is like your Brian she can't really walk but can still talk although she gets confused and can't find the right words and gets very frustrated . Her witching hour is 9pm whatever we are doing its stop and get ready for bed and she constantly talks about the need to start getting ready for bed from late afternoon and then when she gets into bed has to go through a ritual of having a cold hotter bottle yes a cold one even though she says her feet are cold ! And the all the pillows have to be moved and moved again . Bedtime is a major performance as you can probably gather and a little testing at the end of a long day .
And thank you georgpa for your prompt response. Chris' OCD isn't as bad as the symptoms you describe. It mainly centres on obsession with touching certain places on walls whenever he passes, counting tiny squares on mosaic tile in bathroom and cracking his knuckles. The latter drives me mad and is something he never did (we've known each other since student days in mid 1960s and lived together for past 24 years) prior to the PSP taking hold. Today I may have found someone to come and care so I can have a day off (a whole day off seems like an amazing luxury). I shan't tell you how comparatively little it will cost, don't want to make you even more fed up. But I will say that caring is easier when the sun shines most of the time and you eat excellent organic food. Some of which I am cooking right now so must head back to kitchen. There are people on here who have fought their way through the UK benefits system to get help with caring. You should look up old posts in that context.
Have a brilliant day off I haven't managed a whole day for 9 months or there abouts- my wife and I have known each since 1960 and we have been married for 47 years and it is hard to come to terms not just with the disability but the personality change- just occasionally I get a flash of the old Veronica and then it slips away to someone I don't really seem to know . Its terrible since I have come on this site I have been pouring out my woes and been very self pitying . Still it feels quite cathartic to have a moan and who knows what tomorrow will bring perhaps me and the cat will rise to the challenge although I can't say she has been much help to date .
Just re-read your reply to me and realised I forgot to comment on your urge to have a tantrum. I confess I shout at Chris when I'm tired and he's being particularly difficult (my equivalent of a tantrum) and at our last visit to his neurologist she asked if she could prescribe some valium-type medication for me - I declined. I say have your tantrum it will make you feel better and also just might shift things a little in your favour. OK really must head to kitchen.
Great replies cheered me up no end often feel I am in an episode of Little Britain -the carer and the guy in the wheelchair. Must learn to calm down and not take it out on the cat .
Well I have yet to mention Chris' cat who is 12 and came out here with us in 2004. He is the runt of a litter from a rescued pregnant street cat - not good genes. He has inoperable throat tumour so is skin and bone but eats like a horse and craps everywhere. Yowls for food all the time which drives me mad. Honestly, C fading away with PSP and his cat with cancer, could be a race to the finish line!
Missed your bit about the cat - made me laugh my cat is a rescue cat never stops eating and stays slim so unfair-insists on78mdopkn on walking across the computer keyboard when I am writing anything.
Don't beat yourself up for runaway thoughts or any other "Get me out of here" thoughts. It goes with the territory. Even Saints were stormy. Also the disease categories i.e. Parkinson's, Alzheimer's, PSP, etc. are really just constructs based on clusters of seen symptoms and signs and are not the same as say "apples" "oranges" "pears" clear cut categories into which our loved ones can be sorted...So there are blends of shifting combinations of Symptoms and Signs..think of the brain as a soup not a computer..a soup can be a bit salty, or sour, or sweetish and you add this or that and it changes and tomorrow it tastes totally different. So with neurologist diseases...PSP is full of other things...lots of different tastes and smells that keep changing as it cooks.
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