Hi folks. I am so thankful for this forum.I read the posts daily and although What I read is scary, I feel I am in the right place to gain knowledge to better equip myself for what lies ahead for my husband (sufferer of PSP).
I am however a little confused on the vertical gaze problem ( his clinical letter says he has limited vertical saccades)I have read that this seems to present later on in the disease. However , my husband has only recently been diagnosed and he still manages to work full time and drive.( driving assessment next week)His balance isnt good, he falls often. He has slight tremor, fatigue and muscle aches. Coughs and splutters sometimes with liquids but looks quite well. So is he in early stages or further advanced? If further advanced then surely he wouldnt be mobile? I'm confused xx
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Karibu
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The big thing you have to do is try to stop his falls....... If he breaks something and needs surgery he will never be the same again as it appears that anesthetics can have a very bad effect on brain function.
See the previous posting by vidvv.
Good luck.
Ps.
You might well be aware of this danger, I only knew about it by reading the comments and posts on this forum.
Thank you Bargiepat. I wasn't aware. His falls do worry me I have to say. I think we ought to have a meeting with his employers. Time to stop going up and down ladders!!
One thing I have learned here is that there is no steady progression in this disease. Different signs come and go. You can't make sense of it and know where you are. So the first thing to remember is to live in the present but prepare for anything !
I don't think he will be driving for long, though.
My husband has PSP and was diagnosed by his vertical gaze problems,3 1/2 years ago. At that time he was walking, but falling. I asked the consultant about him driving and he said he should let the authorities know. I think Chris was ready to hear this really as he was having some problems.
Now he cannot walk without my help, is incontinent, can't see much but can eat and enjoy food, if it is cut up.
Thank you Jean. My husband has let the dvla know. He has a driving assessment next monday. He says he would'nt know he has limited vertical saccades. He feels his vision is normal and feels he is fine with driving. I feel quite confused about it all. He is seeing Prof Huw Morris in July and I have a long list of questions to ask.
When my husband quit driving 2 1/2 yrs ago he was reporting to me some near misses.(They came out of nowhere-I didn't see them coming) I knew it was time for him to stop and he didn't put up any resistance,thank goodness.
This is what I am worrying about. We have children. I am petrified of him driving them anywhere! I try and do most of the driving but he says i make him feel ' written off!'
Karibu my husband almost demolished the garden wall. Yet he was convinced he was safe! I was scared stiff. After he died I discovered another long scrape on the other side of the car. Not sure where he did that! He would never tell me about his bumps and scrapes and it was never his fault!
When he mentioned to the doctor he would soon be able to drive again (he had a plaster on his arm after he fell and broke it!) I sat there shaking my head at the doctor. It took him about 2-3 weeks before he came to terms with it. He was so upset because it took his only means of getting out away. I don't drive. He tried to encourage me to have lessons but at my age I wasn't prepared to go through it. However it has really isolated me not being able to go where I want to. It was just as sad for me although I didn't let him see it.
Good luck. I agree he shouldn't be climbing ladders!
Sounds like your husband is in pretty much the same place as mine.His PSP diagnosis came only about a year ago.The diagnosis before that was Parkinsons about 8 yrs ago.So now I wonder was it PSP all along?
Same here about enjoying food.It is about the only enjoyment he has left in life,but yes,have to be careful to cut it up.He tends to put too much in his mouth-I have to watch him.
Chris was an incredibly well mannered man but now, when eating with our family , he starts eating the second the food is placed anywhere near him. They can't believe the change.
But now he gets tired and I have to feed him the last bit. He is losing weight too.
I agree, this disease has a mind of its own. You feel it is going one way and the does a 360 on you. Therefore very difficult for some family members to accept that the disease is correctly diagnosed, in my case. This can add extra strain for the primary caregivers.
Hi... I don't really understand the "staging" to be honest. It seems quite variable to me. I have found that certain issues like swallowing can seem to be get worse and then a little better for a while, same with mobility. It's only when you look back over a period that you notice a clear deterioration. Am sure everyone is probably a little different though. My husband worked and drove for a couple of years after diagnosis. his speech was one of the first things to be a real problem.
As diseases go I can't really get my head round it either!
I agree completely with your post. Things change slowly, yet rapidly. As soon as you think you have something figured out, it changes. My husband can be doing well and suddenly seem to decline, yet than seem better. His lack of speech and communication is the most frustrating . His voice is good, sometimes a little soft, he just does not reply when spoken to. He says the words do not come. I feel bad because others are anxious to speak to him and he seems to ignore them.
Hi, your husband is not in the final stages of PSP. Although one thing you will very quickly learn, PSP don't follow any rules. It affects each and every person differently. My husband was diagnosed right at the beginning because of his vertical gaze problems, but never had the "Normal" problems with his eyes during the rest of his journey.
One thing I was told when I first came on this site, over three years ago, there are no official stages of PSP. Like you, I was confused and wanted answers. The sad fact is, there are none. All you can do, is what you are doing, getting every bit of information from the good folk on here. Of course there is a lot of scary stuff. I hope you are also picking up, there can be good times as well. It's up to you to create a new normal for you and your husband. Get that bucket list out and make sure you start ticking off the ones that are still relevant to you. Always, always, think what your husband can do, never dwell on the negatives. Have that holiday, you always promised yourselves. Life is not over, just changed!
I would definitely get the speech therapists involved now, for his swallowing. Also a physiotherapist, to keep him strong and mobile. My husband was still having a personal trainer come and see him, days before he died. I am positive, it stopped him needing hoisting.
I suspect his driving will stop pretty soon. I had already stopped Steve from driving, when I told the consultant this, he said Good! In other words, no way.
Please keep on the site, it got me through some very dark times, knowing somebody knew exactly what I was going through and understood my anger, frustration and heartache. If in England, join the PSPA, they have support groups, for you both to attend. I found this very helpful. They also provide literature, all about PSP, especially good, when meeting professionals that have never heard of this disease.
It is one day at a time and be as positive as you possibly can be. It's the only way forward.
I'm afraid it's through the GP. Don't let him fob you off. PSP is all about the messages from the brain not getting to the body. The main problem is your husband accepting that and doing the exercises, he feels perfectly normal inside.
I have heard the Gloucester group is very good, contact them. It is very frightening, the first couple of visits, seeing people further along the road than you, but both Steve and I felt, being in a room where EVERYONE had heard of PSP and Steve didn't feel such a freak, having this rare illness, was worth going through that. Neither of us were group type of people.
We were referred to specialist neuro physios and a speech therapist who deals with Parkinsons type things via our Neurologist. I suppose different health boards / hospitals will have different referral pathways - they've been great though.
Hi my wife has psp for 2 years, was first tested for dementia because she had reduced brain function, she can look left and right only and can walk with a walker, she is unbalanced and can fall .how is your husband brain function because my wife was driving up about 3years ago and crashed the car on a corner on a country road,wasn't injured ,at that stage she had only reduced brain function .now she can eat and drink but can choke on liquid, i cook and do everything the meals are soft foods, white sauce with fish ,no fibrous stuff, we use coconut oil for cooking and in coffee, tea,helps with brain function and swallowing, one thing is that psp disorder is different in every person,the balance is in the brain is in a different place to eyes and swallowing. Be strong and focused in what you do,it can be a tough job being a carer, for me its is a life changing experience, there are times we have tears together out of despair and happy times going for a walk, with love everything is possible x Peter
Thanks for your reply Peter. I honestly dont know how my husbands brain function is. At the moment the only noticeable symptoms are balance issues, vertical gaze ( he says his eyes seem perfectly fine to him!) and stiffness in the legs and neck. He is always fatigued but the neurologist says this isnt connected. He has arranged a sleep study for sleep apnea.
He is occasionally slow with words and thoughts and his memory isnt good.
I was diagnosed with psp about 31/2 years ago After six years of atypical parkinsonisms and still feel fine in myself, please remember that there are different subtypes of psp not all are devastating. I intend to be independent for many years to come , although I tend to fall quite often nowadays and my speech is getting worse and I have too careful when eating, I am also getting on my wife's nerves a lot now ?? I think i will have to go to a respite place to her a break from me.. good luck with your hubby from what you say he doesn't seem that bad.
I have symptoms that present at later stages of PSP, but I'm definitely not in the latter stages of the disease. I'm surprised that he still working... perhaps with accommodations? Climbing ladders...a definite no-no, driving privileges will end sooner... not later.
Hi. I keep telling him not to go up and down ladders. But he insists he only slips on the last rung on his descent. Even so, he could still do serious damage to himself but he will not listen to me. He is an electrician. Not the best profession to be in with psp!
Driving worries me. He insists there is nothing wrong with his eyesight. He wouldnt know he has limited vertical saccades. But surely he must be aware. He seems safe at the moment. His judgment seems normal. What i am extremely petrified of is will it take bump, scrapes or minor accidents for him to realise he isnt safe to drive any longer? How do you guage it? I will speak with his neurologist.
My husband quit driving about 20 months after symptoms started. At that time he has a diagnosis of parkinsons . I had to discourage him from driving and he just began driving less and less. Our concern gave from a change is his reflexes and ability to move his foot quickly to apply breaks etc.. Thank goodness that as sad as it was, he did listen to our concerns.
Good luck. Perhaps he is correct and can drive for a while.
Hi there, it is very confusing when the disease doesn't follow a particular pattern. My husband, Ben, showed symptoms well before diagnosis in November 2014 but was being tested for ear/balance problems, tumours etc etc. Eventually a nurse friend suggested we ask the doctor for referral to Neurologist and that is when the dreadful news was delivered. In the November after diagnosis I was so worried about his driving and rang the Neurologist and said I didn't feel safe being a passenger with him, he then called my husband to advise him not to drive without going through a fitness to drive assessment. He was very angry with me but deep down knew he was no longer safe to drive and after a week has never mentioned it again. It is massive thing to have to stop driving an totally took away his independence and self confidence, however is was pleased he accepted it as would never have forgiven myself if he had an accident or hurt someone b cause he wasn't really safe to drive. I wish you well and am sure, like me, you will find this site invaluable in so many ways.
Hi, I had a very similar problem with dad’s driving and looking back it may have been one of the first signs something wasn’t right. He had a very ‘cavalier ‘ style of driving which worried us all and resulted in mysterious scratches. I took over driving him to appointments etc as I felt he wasn’t safe and more importantly other road users were also in danger from him. I spoke to him and said neither he nor I would cope with the guilt of his driving causing injury to others. He wasn’t happy and when I told the neurologist he said that he agreed no more driving. I sent his licence back to the DVLA. It should be noted that any medical issue that has got worse since you received your licence is notifiable and PSP is definitely in this category. He used to tell people I took his licence and sold his car to prevent him forgetting he had no longer got a licence and just driving off in it! I don’t mind I have broad shoulders and consider that the safety of other road users was more important than dad’s feelings at that stage. One last thing though dad was a very accomplished DIY enthusiast and his garage and she’s contained an Aladdin’s cave of ladders and electric tools and after a particularly nasty fall from a ladder I saw the writing on the wall and locked the garage and removed the key for his own safety. Some PSP patients lose their ability to assess risk and consequence and dad was certainly one of them. It’s very sad but the child has to become the parent at times and the responsibility weighs heavily. JR61 x
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