My dad was diagnosed a few years ago, and I have found the change in behaviour very hard to deal with. He fidgets a lot, and is extremely impatient, and he is not the happy, lively, gregarious person that he once was. I can deal with the 'physical stuff' like helping him walk, change, eat, go to the toilet, but the personality change has been hard. I
I think for him the loss of independence has been difficult - now relying on my mum and me is not ideal for him, but he cannot walk etc., without our help, so needs us.
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Hi one of the most difficult things that I have had to deal with is that my husband can not take simple direction and he often works against me instead of with me. He is much stronger than I and if I am trying to roll him in one direction and he will often be working against me causing me great physical pain. I have pulled many neck and back muscles many times. This happens all day with all things. I have noticed that once he gets something in his head he can not get it out and he will continue in that direction unless he is distracted. It is worst if he is in danger when he is in motion. There are times when he wants to take stairs up or down and I cant stop him as I lack the strength. I have asked him not to get up without me, but he cant listen to this directive. The only way that I can stop him is to actually pull him to the floor before he gets to the stairs. Afterwards, trying to get him back up is very difficult. I have asked the doctor about ways to prevent this and to keep him safe, but they are no help.
My dad was also like this - very head-strong - and as Meabh says below, this is a very difficult time, and I was very glad when he actually lost some mobility, because now he doesn't walk around unaided at all, as he can't.
I relate this aspect to personality - I just couldn't understand why my dad would not do as we asked, even after explaining that it was for his safety.
My husband is slowly losing his mobility as he has no balance at all. He can get around with his walker and wheelchair. He is only 57 with a very strong athletic body so he can get around and even though he has all lost all balance. He falls at least 5 times a day. He has broken ribs at least every six months for the past 3 years. I think because of his age and strength he may be mobile until the end. He has muscles of steel and I continue to help him exercise while he is sitting. He falls mostly at night when I am trying to sleep. He is incontinent so he gets up to go to the bathroom every 2 hours with or without me. He wakes up with new bruises from his falls. He refuses to urinate in his diaper even though I have assured him that it is okay as we have protection for the mattess, pads underneath him and the diaper. He wont do it though. I have tried a noninvasive catheter which seemed to be a God send but now we are waiting for the insurance to cover the cost. He was sleeping thru the night with this and it is supposed to eliminate UTIs and rashes associated with diapers. Has anyone else found anything helpful for night incontinence?
My dad had a bottle (you can buy them from Boots, or get them from your OT) that he used during the night. He found it useful, but then his hands became unsteady, so my mum just started taking him to the toilet instead during the night. This might be a better option for your husband.
I was sorry to hear you are suffering physically but I agree, the worst thing is the patient not understanding simple instructions and seeming to resist . Take care. SheilaN
Definitely personality change. I was not informed of this by any of the three Neurologists I had consulted and therefore found the change in my husband's personality extremely distressing. I felt it was somehow my fault.
Yes, similar to what Judy said, one of the most difficult, stressful and horrible things for my family over the last few years has been watching my Mum repeatedly try and do stuff that is very unsafe for her to do. We realized recently that when my Mum is doing unsafe things, she is usually thinking that she is trying to help us! She doesnt want to be a burden on us so she tries to do all the things she used to be able to do so that we dont have to do them. We have had long talks about this recently and explained to her that when she does unsafe things, we dont feel helped we feel very anxious and stressed. We would much prefer to be doing those things we didnt used to do than feel the stress and anxiety of watching her try and do them (for example cooking dinner). We have explained that if she wants to help us, the best thing is for her to allow us to help her with those things that she doesnt do safely anymore. We have also emphasized that in order for us all to be a happy family we need to work as a team, in which we all have an equal and valid role to play. It seems to be working out much better, everyone is less stressed and happier, including my Mum who now has more time to focus on doing simple things well rather than doing difficult things badly.
I agree with all the above comments in every way. My husband has gone from being a mild and gentle man into a much more agressive and stubborn person. Like Andrew's mum, he too thinks he is helping by trying to do things around the home and he no longer sees any danger. Just as children don't see danger, he doesn't see the bigger picture when undertaking a task which I perceive as "risky" for him. He gets annoyed when I try to point out that he might fall when trying to help around the house with tasks that I have been doing for years anyway. Since his retirement two and a half years ago it has taken a great deal of adjustment for us both, but the most cruel thing about it is that it is only since his retirement that he was diagnosed with PSP. He has become almost challenging when I try to point out any danger to him, and sometimes I have to walk away to control my frustration before trying to approach the situation in another way. Let's face it, we all know what a difficult and challenging task we have on our hands and any ideas to make life easier for both the sufferer and carers would be very welcome.
Good luck to all of you and take care............SusieQ xx
What we discovered a couple of months ago when we all sat down as a family and talked about this is that my Mum really didnt realize how stressful and anxious it was for us to be anticipating and watching her trying to do dangerous things. My Mum is a very giving person and I think she was quite shocked and upset to find out that the lives of those closest too her were difficult in this way. We introduced her to a new idea recently....the idea of inter-dependence (as opposed to independence and dependence). We have all worked hard at creating an inter-dependent environment.... the idea is that we work as a team. So, practically speaking, it has meant putting plans and routines in place. For example, my Mum will sit down in the lounge after lunch and I will ask her what time she wants to go and use the computer. I am then happy to leave her in the lounge and come back at the agreed time and assist her to the computer room. In the old days my Mum used to just get up when she woke up and there were often falls in the kitchen because she was in there on her own trying to do difficult things. These days she is happy to wait in bed until the agreed 'get up time', and then we go into the kitchen together and go from there. From her perspective she is happier because she is falling over much less and worries a lot less in general. We are all building up a trust of each other I think. A trust to be there for each other in our different ways. Like a team.
This is Judy. My daughter and I have talked to my husband repeatedly about things that he should continue to do and should not do. We do have a routine which seems to work, but he gets into danger at the spur of the moment. He is the sweetest kindest man and I know that he is not trying to upset us, but instead, I think he cant understand things and he gets confused. For example, he could use his electric scooter and do a great job, but all of a sudden he would veer to the left and crash into something. If it is was not so scary it would be funny. He is always doing things like this and when we have our family talks to discuss his risky behavior, he always says oh I will try to do better and he is sincere and sweet and we almost feel sorry for bringing it all up. This disease is so frustrating for the caregiver and I know it must be just as frustrating or more for our loved ones who are suffering with the disease.
I can really relate to what you said when you said 'if it was not so scary it would be funny'. There have been times when we have all just laughed. Sometimes Mum will make a really odd noise totally out of the blue and it makes us all laugh, including her! I think its a good thing if we can laugh sometimes as this illness certainly comes with huge challenges and frustrations for all involved. In the last month or so Mum has been doing some meditating and listening to a hypnotherapy cd at night to improve her focus and clarity, and it seems to be helping with her ability to concentrate...there have been less random acts of the sort you described like the veering off.
We did the meditation and yoga early in the disease which I truly believe helped. He has a difficult time just keeping his eyes open these days. I think we are towards the end, but medical community cant seem to help with all of the new problems that he encounters each day. I long for the old days when he could ride the scooter and talk and walk and use the computer. I can harldy believe how quickly that all went away. We laugh daily at my husbands funny sounds. He also moans which is upsetting as I do not know if he is in pain or not. He mostly moans these days, but he understands my jokes and he will give me an occasional giggle which makes my day. How long has your mum had the disease?
Hi Judy, my Mum first noticed symptoms about 12 years ago but they intensified a lot in the first few months of this year. Because they intensified, for the first time really, she has been willing to try stuff like meditation and yoga which does seem to have been helping somewhat. Im sorry for you and your husband's current situation. What sprang to mind when I read what you said is something a holistic practitioner said to my Mum last week. My Mum was told that she is very sensitive to and affected by electromagnetic radiation (from electronics and wifi and stuff like that) and also by geopathic stress, which has something to do with the way that underground rivers flow and connect. I dont know if you have heard of this before, and Im sorry I cant explain it better as I dont fully understand it myself! Anyway, what the practitioner suggested was buying a product which neutralizes all the radiation and geopathic stress. We currently have one on order. Im of the opinion that it doesnt hurt to try these things out (within reason!) If you have an interest in trying it out, let me know and I will tell you where we got ours, or you could google 'protection from geopathic stress'. The one we got was about 90 pounds.
Thanks Andrew, I am willing to try just about anything. We have him in a trial for dauvenitine but it is possible that he may be on placebo. He is wearing a magnet bracelet which is supposed to help with gravitational pulls perhaps? He is also taking 1600 mg of enzyme COq10. I am not sure why he has progressed so quickly with this disease but I have also heard that there are two types of PSP. One is PSP Richardson Syndrome which is more progressive and the other is PSP parkinsonism where patients dont seem to fail as quickly. I cant even imagine my husband being able to to do half of the things that many of the patients are able to do when I read this site. Things have changed so much and he wants to sleep all of the time. I wish I knew what to expect next. In the past month he has become very limited in all abilities. It is difficult to see.
My Mum was due to begin the dauvenitine trial a couple of weeks ago but missed the appointment so she will start in September, and like your husband, she also takes COq10. We looked at the magnetic bracelets and although we didnt get one, my feeling is that they certainly dont hurt and may well be helpful. I didnt know that there are 2 types of PSP....given that my Mum has had her symptoms for so long, that may suggest that she has the PSP parkinsonism. Fingers crossed with the dauvenitine Judy. The other thing that springs to mind that you could maybe try that certainly wouldnt hurt are Bach flower essences, if you find the right ones they may help a bit with his vitality.
Andrew i think this is notion of interdependence is a marvellous idea and I will bare it in mind when I speak to someone else who is in a similar situation to yourself..
You're very welcome For us, developing this inter-dependence has been hard at times but worthwhile. We have had to build a new trust of each other but in doing so, everyone benefits. For example, I trust my Mum sooo much more than I used to that she is not going to get out of the chair randomly and try and do cartwheels across the room Equally she trusts that I will be checking with her to find out if there is anything she needs or if I can assist her in some way. We try and work together, and in doing so, everyone involved is a valid member of the team and keeps their self-respect. The last thing we want (and Mum wants) is for Mum to be dependent on us, but we also all understand that being independent in the way that she used to be just doesnt work for anyone in the family. So we continue to work at finding a balance that works for us all.
I think that this part of the illness is the most difficult to deal with bar none. My dad is in the latter stages of his illness and now cannot get up from the chair or bed without help, which is a little blessing in itself. When he was still mobile he would try to do all sorts, I caught him one day trying to get on an old bicycle that was rusting waiting for the bin man!
Sometimes you feel like all you do all day is nag and say dont do this dont do that, but try somehwere in your heart to remember that the reason you are doing it is to keep them safe.
Unfortunately in 2009 Dad had a very bad fall backwards while out at the races with a friend - he took off from his friend and disappeared and was found in the hospital 2 hours later having fallen onto his head and suffered a bleed on the brain. Since then he has been extremely confused and often thinks he is in the town where he grew up, that was hard when he was mobile because he would try and leave the house at 2am to go to his mothers house.
My dad still tries to do stuff for himself but due to his swallow problem we have to feed him as he goes too quickly and i have to clear everything out of reach when we are going into the bathroom or the shower, as he will try to grab at things and potentially fall over.
As someone who has lived with this disease for the past 5 years and have seen it steal away my Dad all I can say is keep trying, try and face each new day as best you can, and always remember that behind every argument and problem the reason that you are doing it is because you love them and care for them and want them to be safe. Some days it is very hard to remember this, but if you can find five minutes on your own to just have a cuppa, take a deep breath and think of that, it helps.
I will also say that my dad is on seroquel (an anti-psychotic) as he was having awful hallucinations and 'fixed notions' and it has helped enormously, he is not as agitated as he was and a lot calmer, and the hallucinations and notions seem to have calmed right down from 2 years ago when they were at there worst.
@Judy - have you looked into getting a stairlift, we had the same problem witht he stairs for a long time, and it has been a god-send.
I have thought about the stair lift but I fear that my husband would get into much more trouble with one as he could not strap himself in correctly. He has lost all small and large motor skills. He is unable to dress himself or feed himself or brush his teeth, etc. His hands just dont seem to work effectively anymore. He also has no balance and when he falls he falls like a ton of bricks just pounding to the floor. We have a rule that he is not allowed on or near the steps but sometimes he forgets. There is no reason for him to use the stairs as he has a very large TV room with a refrigerator and computer and phone on the same floor as his bedroom and bath. Everything that he needs is at his fingertips even if he cant pick it up anymore. I am never too far away and if I am on the lower level, there is a balcony and when he calls my name I hear him immediately. I think there are times when he is just getting very confused and thinks he should use the stairs. He thinks there is a monster in our closet and we have talked about that too. My daughter and I assure him that the monster will not hurt him. It does not help to tell him that there is no monster because he still believes otherwise. Does anyone know of any meds that have been helpful in these situations? I do not believe that he is trying to get into trouble. He just cant think correctly anymore.
To everyone above, I lost my Mom in December, the hardest things were watching her have to give up her not being able to do for herself. I remember too finding her on the back porch holding the wall, trying to feed her cat because she needed to still be needed. She was very much needed. But also, she could comprehend the danger, but part of the disease is some thinking function (she did not like the word dementia, she always prided herself in the intelligence aspect). The other thing which was tough we for my husband and I the caregivers, the worry of her next fall and relaying information to my siblings who did not live this day to day. On the phone, other than her voice inflection changing, she seemed fine, she never complained. She was always thankful but they were basically shocked when they did visit at the changes. I grew closer to my Mom than ever during this time. I can't stress enough you are not alone, hospice or other medical professionals, mainly therapists, occupational, physical, musical, and social workers are a huge support mechanism for the patient and the caregivers. They seemed more in tune than any of the physicians we encountered along the way. PSPinformation.com was also a very useful website if you have not already gone there. Mom's last gift to us and to those who suffer was to unselfishly donate her brain to the study. This is a very hard decision to make and very tough to organize. We all did this together with the help of her hospice nurses, etc. MUSC in SC was the recipient, Mayo in Jacksonville is also highly recommended. We think this is the second generation of the PSP - her Mother had a different diagnosis, I helped care for her and the systoms were unfortunately, very similar. Good luck all - Kathy
Hi All, This question has provoked a lot of answers, living with PSP/CBD is difficult in so many ways as is caring for somome with PSP/CBD. I hope sharing on this site is useful to everyone. I have been to a support group today and a lot of people find it really helpful attending and realising they are not alone. Remember also you can always phone your PSP specialist nurse for a chat.
I would just say consider very carefully before buying a stairlift these may be useful for some people for a certain time but generally only a short term solution. Getting on and off them can be very difficult for people with PSP/CBD.
Thanks Jill - I suppose I should always say what works for some is not always right for everyone!
We talked about the stairlift option very carefully with our doctor and nurses and it was the only safe option for us as my mother was caring for dad all day on her own (before I took carers leave) and the risk of both of them falling down the stairs was way too much for us to handle. We always supervise Dad with at least one if not two people and he is unable to let himself out. Again if you are caring for someone who is still able to mobilise unaided it may not be the safest option.
Judy you should talk with your doctor about medications as they are best placed to decide which one is suitable, if any. Have you got a community mental health team? We have one for the psychiatry of later life who liaised with our public health nurse and our doctor and they were very helpful. Also your physiotherapist or occupational therapist might be able to advise about safety. Hip protectors can also be useful if someone is having repeated falls. And mattress alarms can alert you if the person is getting up from the bed at night.
I agree with you completely re the hallucinations - my dad sees a variety of people every day! I gave up trying to tell him they werent there ages ago, now i just tell him not to worry they wont bother him
The other most difficult thing about this disease is the lack of understanding or support that is available in our area. I have never been led to any type of mental health team or any of the other teams that are discussed on this forum. I have learned through trial and error and I have found when I do try to reach out to the professionals in this area that they have no knowledge of the disease and they are not helpful. Three years ago I took my husband to the ER as I had thought that he had a stroke, as he was experiencing all the symptoms of a stroke after a fall. The neurologist there told me that he was depressed. I continued to search for a doctor who could tell us what was the actual diagnosis and after 3 teaching hospitals we finally ended up at the University of Pennsylvania where they were very experienced with rare neurological diseases and they recognized PSP right away. They have been very helpful to us and have enrolled my husband into the Davenitide trial, but unfortunately they are located 5 hours away from us. I need to have a local neurologist and the only office available in our rural area is the one who initially thought my husband was depressed. The medical community in this area either does not understand the disease or they feel that it is of no avail to try to treat it. So when you speak of a medical team, it consists of me and the nurses from UPENN who help me and give me advice, along with the research that I have done regarding PSP. I am truly searching for answers to questions and trying to provide the very best care for my beloved sweet husband. It has been challenging. In the US our health insurance does not cover any type of care for patients like my husband. We have to pay for that our of own pockets, but when you leave your career to care for your loved one the money is just not adequate to pay for the high cost to pay for assistance. I fight the insurance company on a daily basis just to get them to pay for tests that I feel are important like the swallow test as he is choking on liquids and solid foods at every meal and we wanted to asses whether he is aspirating for not. We found out that he is aspirating so now are trying to prevent this. The insurance company denied the test. The medical community is not giving any additional information to me other than the practices that the nurses have already helped me to implement. It has been a very frustrating road. I wish that someone would write a guide on how to practically help the PSP patient through the different symptoms that they experience. I am trying to get an earlier appointment for my husband since his neuro appt is not until the last week in August and he is having such a difficult time with the hallucinations and this awful moaning and has just had a marked decline in physical health. His neurologist feels that he will be just fine until he sees him in August. It is very frustrating. He has however provided a referral for my husband to get a feeding tube because of his weight loss and inability to swallow food easily. I wish that I could say that there is the medical support or so called medical team in this area but we fall very short of that
Thank you so much to everyone who has taken the time to reply - it helps to know that it is not only us who are dealing with the same issues, and comforting that it really is the PSP and not dad.
Good luck to you sweetie and I wish you the very best. I can relate to what you are saying as I have seen my husband's journey through this disease. I am a caregiver so I do not know how you must be feeling. I can only guess. God has been a comfort to my husband and I. I know that He will be with you. There are blessings with this disease. They are sometimes hard to see, but the biggest blessing is how sweet my husband has become and how loving he is to everyone. He also has the largest sense of humor now and is constantly making us laugh. Try not to focus on all of the things that are happening but be prepared for the journey. Know that you are loved and that your caregivers will find you especially lovable and want to give you the best of care. That is what I have experienced with my husband.
We have a cleaner to do all the housecleaning once a fortnight and someone to cut the grass, too. These are things that would be really low on my priority list and probably wouldn't get done. Otherwise I manage OK.
I have thought about doing this too but I have opted to bring in an aide to help me with my husband instead. The cost of qualified help is very high. I left my career two years ago and we are trying to live on Dave's pension as I am too young to retire. It has been a drastic change. I used to pay for a housekeeper and a landscaper during my working days. I simply cant afford it on a fixed income. I dont mind doing the work, and I try to get it done while the aide comes in to care for him.
Not the hardest but maybe the most frustrating thing I find are the uncontrollable
fits of laughter coming from my husband when in the standing position and he's starting to lean backwards without bending and I just know it will lead to trouble. Maybe I should be thankful he laughs instead of getting angry?
Apart from that constant reinforcement of reminders (keep elbows in when wheeling through a doorway, bend bend bend when trying to sit him down).
Hi all my husband is in the late stages of c b d he can no longer do anything for himself but still has his smile all of the bad tempers are gone and for someone who never used bad language he started a few years ago cursing at everything that is all gone now and he is in an nursing home and very setteled smiles at everyone it was the hardest thing i had to do was to let him go but the best for him best wishes M
We had to have our bathroom renovated so that the door wasn't by the stairs in case my dad fell. The bathroom has also been adapted so that he can be wheeled into the shower.
He doesn't have a stairlift but he's got a floor lift which takes him and his wheelchair from the dining room straight into his bedroom. He absolutely loves the floor lift and always waves when he's going up (as do my niece and nephew who take great pleasure on thinking it's a toy)
My dad has also had a personality change, but for the better! Before PSP he wasn't very emotional, never told my sister and I that he loved us or even hugged us when we came to visit. Now, when I sit next to him, he always holds my hand and squeezes it. He was playing with my iPad the other week and he wrote 'I love you'. It certainly made me smile!
The inability to communicate, as a consequence of loss of speech and writing skills, is a devastating aspect of PSP.
Assistive Technology can help for a while but as hand eye coordination problems increase due to loss of downgaze etc this eventually ceases to be of use.
Loss of communication is a nightmare for both the PSP sufferer, family and carers .
I have to agree about the loss of speech, I find the hardest thing about P.S.P. is not being able to understand my husband. He cannot do anything for himself but there is nothing wrong with his brain and he knows everything that is going on. It is particularly difficult when friend come round because if I am not careful my husband gets excluded which I do not want because I know how this depresses him. We do the squeeze with hands one squeeze for yes two for no which is quite helpful. Also going through the alphabet to spell a word long process but does help. Hope these couple of things might help others. I would suggest anyone early stages learn sign language you will find in invaluabe in later stages which you cannont imagine it will happen but unfortunately it does,. Good Luck to everyone out there sufferers and carers alike
i know to anyone looking the falls are the worst but the bruises and cuts will heal - i fractured my ankle badly way b4 diagnosis in 2007 and made every effort to fight the problems i had at the time amd since
i am 65, do not have osteoporosis, and am sitl falllign regularly but no more broken bones at present!, thankg goodness
the lack of speech and inability to commucicate(see earlier post )is so devastating 2
This is to Jillianf6. What is the rest of your e-mail address? I know I am in the beginning stages of psp although I have had many bad falls. I have only been hurt twice. I can see the start of some of the symptoms mentioned so know this is the problem. I am so thankful I have found this site now and hope my caregivers will use it also.
I have to say the lack of speech & handwriting is one of the worst aspects of this terrible disease. I have to have my husband repeat himself several times & sometime i ask him for just the main word he is trying to say. I still try to treat him just like before. We still argue, laugh & get frustrated at each other sometimes, but we did that even before the disease. Right now his eyesight is very bad, he can't write, talk right, & is bedridden most of the day. I still help him walk to the bathroom but he wants to get out on the weekend & I always use the wheel chair because he can only walk a few feet if we are out doing something. When his swallowing became so bad that he choked on everything he refused the feeding tube & finally refused to take thickened liquid. When he was able to still feed himself he started laying down in bed to eat which was against all the principles of the choking. But for some reason he choked so much less this way. The therapist said maybe since his tongue wasn't working just right that with him laying down the gravity was helping to pull the food to the back of his throat so he didn't choke so much. Now that he can't feed himself & I feed him he still eats laying down. Has anyone had this experience about the feeding?
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For us, developing this inter-dependence has been hard at times but worthwhile. We have had to build a new trust of each other but in doing so, everyone benefits. For example, I trust my Mum sooo much more than I used to that she is not going to get out of the chair randomly and try and do cartwheels across the room 
Respite
Denial
Incredibly fast turn around!
How many years did you have symptoms for before you where diagnosed with psp please
Firstly, I must say thank you to this community for all the advise and words of wisdom.
My dad was diagnosed with psp for seven years and I
