I would like to assess the symptom of neck flexure in PSP. The typical position repeated in most descriptions of PSP is "backwards" (called retrocollis). However, some have their neck "forwards" with chin on their chest (called antecollis, that is common in Parkinson's).
My wife's neck bends forwards and her chin often drops onto her chest. Diagnosed with PSP, she has very clear clinical (and MRI) signs of PSP and not Parkinson's, even though she has this antecollis.
Can you send a quick post about your loved one's neck position.
HI STRELLEY - MY NECK TENDS TO GO FORWARD WHICH I NOTICE IN PHOTOS OF ME MOSTLY - THOUGH II DO HAVE KECK PAIN WHICH I TEND TO STRETCH OUT SIDEWAYS AND UP AND DOWN AS RECOMMENDED BY NMY PHYSIO
My husband's neck is always backwards and his head is held very rigid. I am constantly encouraging him to try and hold his head down with chin towards his chest to stop the restriction in his throat prior to swallowing food and drink. The OT has suggested the same. But he often finds it almost impossible to do it, so mealtimes can be a trial, especially breakfast, where a lot of coughing goes on. Although, to be honest, he does get better as the day goes on.
But, and I know this is not want you wanted to hear, I think I could put up with almost anything if only his moods were better. There is a lot of cussing and threatening going on in our house almost daily. Incidentally, I have a friend who works in a care home and she tells me she sees this whenever a near relation visits a patient but that very same patient is a pussycat with the carers!!
When my husband gets up in the morning, or awakes from sleep in his chair and stands up, his neck is fixed stiff and upright making him fall backwards. Within 5 minutes of being awake, his head slumps forward onto his chest. I told him I was going to try a quick shave during the upright time as trying to shave someone with their chin on their chest is very difficult.
nannab don't know how old this post is , just picked it up . my husband is the same . when I shave him instead of asking him to try and lift his head I find choosing the right words , or rather words h seems to understand better make s a difference . I ask him to hold head back , if that doesn't work , rarely does . I ask him to look at th clock on the wall above . if he can open his eyes his head also raises a little
I wrote that a year ago and things have progressed since then. My husband is now sleeping downstairs so we shave him while he is still lying in bed, the carers Tuesday - Saturday and me Sunday and Monday. His head is still quite upright when he is standing with a hoist or two people holding him but as soon as he sits, his head goes down, chin on chest. It's good your husband can still raise his head when asked, even if only sometimes.
well he use to in beginning but like you not so good now . Yes I sometimes do it when laying down . I am having trouble it's feeding him .Actually getting it into his mouth . !
that's after I get a window when he is roused enough to attempt it . he still wants it and can swallow but slows down. I have started no with much softer meals . he wants it and thinks he is ok when he isn't .
I have recently started to try and do my dinner on my own and fit his in when he he more able .
it looks so painful and uncomfortable to see him so bent .and then falling to one sid . I roll a small soft towel around his neck to fiv some sort of support and catch the drool So crul . For all of us . take care xx
My husband has chin on chest and very stooped from mid back but has all other signs of PSP including MRI. I had also wondered about this. We go to a PSP group and some people seem very bent over and some very upright.
My husband's neck is mostly leaning backwards. To help when feeding him we find a soft neck-collar, (the ones used for a more comfortable sleeping position when travelling) tilts his head into a better position and there is less choking. Hope this information is useful.
My husband has his neck stooped forward with his head on his chest,whe he's like this he seems to make a lot more moaning noices when breathing out drs think it could cause a obstruction his head being so bent forward?it is also difficult feeding him like this I have to keep pushing his head up with every spoonful x
My Dad's head is tipping backwards and it is really hard to bring it forward for safe feeding. He protests somewhat and I have to jam a little cushion behind the head to keep it in position. After a while it seems that the muscles and tendons become adjusted and it is easier for him. Also head slightly twisted to the right with the dystonia. When he was walking his head was also slightly tilted backwards and so pulling him backwards, that is why the walking fame they gave him was of no use.
Mum's neck tended to lean to the right but when she was ill with infections her neck was straighter but back.It became a telling point that if her neck was leaning to the right she was reasonably well but if it was straight she had an infection. It seemed that one set of muscles (on the left) were working correctly when she was well but neither could support her when she was ill.
My hubby's neck extends backward, eyes to the ceiling. He's been taking baclofen 3x a day, usually about 1 hr. prior to mealtime. Lately, it seems to take longer for it to "kick in" so we've re-adjusted the timing to 2 hr. prior to mealtime. The baclofen helps occasionally, but not always. When seated in a chair, his right leg is stiff and extends outward too, so that the heel of his foot is about 5 inches off the floor. Often when toileting him, he has to be reminded to bend his knees and waist, as he has a tendency to try to sit down while maintaining his "stiff as a board" stance.
My husbands head is always bent forward on to his chest and he bends forward almost looking on to the floor all the time. I find it very difficult to get him to straighten up at all. He is now in the latter stages of the illness he as been ill for the last seven years but only diagnosed with PSP for two years. He often clutches his head in pain and cannot stand any light in his eyes.
My husband has retrocollis. At times he finds this very painful and pulls his head forward with his one and only working hand. The fingers on his left hand are permanently stretched out and he cannot grip anything with this hand. He is having Baclofen 15mgs 3 times a day which gives some benefit. He now also has the upward gaze virtually all the time making seeing things very difficult. He cannot cope with the prism glasses which he tried to see if they would help.
Peter3.
Dear Dorothy T,
I was so sorry to read about your husband's bad moods, How stressful when you are trying your best to help him. My father's neck symptoms sound very similar to your husband's and I remember reading on one of these posts that someone had tried putting ice on the back of the neck at the base of the skull. I went to visit Dad and put my hand on the back of his neck and it was very hot indeed. I do not have access to ice in the home and so I tried putting a pad of tissue soaked in very cold water on that area. I find that it is very helpful. The first pad heats up fairly quickly and so I try another one until that area feels to be of a more normal temperature and the muscles and tendons have relaxed. He is then able to bring his head forward and can enjoy the meat time much better. In fact Dad sighs with relief when the heat is being drawn off. I give that area a little minor massage too.
My dads neck is forward, to one side and very stiff, he finds it hard to lay it flat on a pillow.
Ive noticed that his lip droops to the side as well so not to sure if this is another side effect as he hasn't had a stroke. Also suffers from really bad headaches and morphine is the only medication that helps with the pain...
my non expert theory is two fold. I have a hard time balancing my head upright. There are muscles that pull my head back and muscles that pull my head forward and the ones that pull back are stronger than the ones that pull forward. When I sit or lie down for any length of time my knees also tighten and my arms bend in. Also I see slightly better if I tilt my head back. (sorry I answered twice). Interestingly if my head tilts too far one way or the other I really lose my balance. So when I tie my shoes I look straight ahead.
My husband's neck is stiff and more forward than backward. His eyes are mostly straight ahead but he can move them sideways if you get his attention. He seems to prefer being left alone but he follows conversations with his eyes closed. After having a feeding tube for almost 2 years, he recently began eating yogurt, applesauce, mashed potatoes and gravy, milkshakes! Hospice had said his swallowing issues were not connected to his PSP and I guess they were right. They must have been associated with his 13 days on a ventilator and his lack of oxygen at the same time (following elective hip replacement). I guess there is a spectrum of symptoms of PSP and patients are unique to themselves. I just try to take it as it comes. Incidentally, the music therapist came and we had a very emotional time with my husband actually singing along with the words of some old favorites. The tears were plentiful - for both of us. But, I considered it very therapeutic for him to experience the emotional ties to many of the songs. The therapist sang as he played his guitar. Yeah, Hospice!
Hi Strelley, my wife also tends to look downwards and therefore tends to put her head forwards. The reason is that she worries that she does not see where she is walking. The problem with sight has to do with the restricted eye movements up and down, which are delayed. In normal people this happens automatically and in a blink of an eye we assess our surroundings. However, if you put your head forwards all the time, this will sooner or later result in stiffness in the neck, cause restrictions in moving the head from left to right and visa versa. And it may then travel down the arm and finally result in pain because the neck muscles, the shoulder muscles and muscles in the arm become rigid, which is basically a continuous state of contraction.
You can see that when looking at the shoulders where the contraction of the muscles are clearly visible. it looks like a swelling. Also there is a tendency to lift the arm, making matters worse.
So I am constantly telling my wife to relax her arm, to lift her head and not worry about not seeing the floor. In addition she gets once per week a 2 hours work out; massage to release the contractions and then simple exercises to help the brain to communicate with the muscles. So far this has worked brilliantly.
Because of falls earlier she also had misalignment of her pelvis and hip and due to poor posture as a result she developed very pain in her leg. And she needed to take massive amounts of pain killers. But thanks to treatment for the misalignment and sports massage, the pain has gone virtually completely and she does not need any pain killers any more. But it was a slow process, took us 6 months of consistent treatment to finally get the desired result.
In general I am very surprised that so little is being told about massage and exercise. In my opinion many PSP / CBD sufferers would benefit from that. Physiotherapy is not the answer, you need a good sports injury specialist or a personal trainer, who have a good understanding how muscles and nerves interact and are able to identify where the problem is and what to do about it.
In this process they also teach you how to activate the right muscles and how to relax them.
My personal trainer is now looking after my wife, she has a portable massage table and comes to our house, so we do not need to visit her.
I can strongly recommend that any one who has problems with the neck or other pain problems to find a sports personal trainer.
• in reply to
Good afternoon, Gerko - could you say more about the exercises your wife does to help the brain communicate with the muscles?
Barnacle.
• in reply to
Somebody from a Sports Injury Clinic can probably explain this better than me. Basically If you have a good sports injury specialist and / or a good personal trainer, they use a combination of massage and exercise to help your brain to connect with your muscles. When you have muscles that are contracted it is important to relax them again. A specialist can feel when suddenly the muscles relax. That only happens when a signal exchange happens with the brain. Once they have achieved that, and it can sometimes take several sessions before they reach that point, it is then critical to use that opportunity to do fairly simple exercises that are not too stressful, but which make use of the connection and reinforce it with exercise. The immediate benefit is a relieve in the amount of pain that can be caused by stiffness that is not being treated. But with PSP / CBD sufferers this is treatment that is on-going. So from my experience with my wife so far, this type of treatment has been very beneficial.
• in reply to
Thank you, Gerko, very interesting. We live in France but I shall discuss this with my wife's physiotherapist who is also a sports injury specialist. Barnacle
• in reply to
Hello Gerko
We also followed your advice and we have seen a major improvement in managing pain,
Just a note to say thanks.
• in reply to
This is more or less the treatment.
The adjuster is also used on the cerebellum to help reactivate it
My wife, whose PSP was diagnosed three years ago, suffers from what you term antecollis and has done for about a year. Complete rigidity when standing or sitting, with chin virtually attached to chest, and the chin has to be prised upwards when helping her to wash her neck. For some time her chin was like this even when in bed asleep but latterly she sleeps totally normally. As you know the rigid neck locking her head forward causes big problems for control of saliva, eating and speaking. She lost weight.and refused to take food, even the fortified milk shakes that had become the mainstay of her diet. Six months ago her neurologist applied a light dose of botox to the muscles at the side of her neck; this was meant to free them so that she could raise her chin. It worked for about two days only. A month ago he gave her a stronger dose (the risk is that in relaxing neck muscles botox can also interfere with swallowing and breathing). We are still evaluating the result. My wife thinks it has made no difference, I believe it has because I no longer have to struggle to raise her chin when I wash her. Of its own accord it is at least a centimetre above her chest. She no longer has a feeding problem because the same neurologist also arranged for her to have a PEG fitted, just before the second botox injection. This is proving to be very successful; my wife takes all her nourishment during the night plus water fed to her through the same tube by syringe in the mornings and in the middle of the day.
The saliva issue has been much reduced by the careful use of scopoderm patches. Speech is still a problem and still linked to her bent forward neck, at least in part, because it is noticeable that when my wife is lying with her head at an incline of between 15 and 30 degrees she has somewhat less difficulty speaking although it is still a great effort.
Incidentally, she has physiotherapy three times a week, psychologically and physically very useful.
I hope this is helpful.
Very best wishes from Barnacle
• in reply to
Good to hear from you "Barnacle". Thank you for describing your wife's condition. I hope you've read my response post to the ones here. I was interested in seeing how many on this forum with PSP had antecollis or retrocollis. The standard references on PSP information tend to mention retrocollis as a probable symptom, but rarely mention antecollis. I think the literature should reflect the fact (as a few researchers have noted) that it's about 50/50! The antecollis (often seen in Parkinson's) is sometimes called "drop head syndrome", and the reasons for it are still controversial - some think it's a myopathy, and others a dystonia (or both) or another flexure/extensor (imbalance) problem.
The decision to have a PEG inserted is one of individual choice. It's been discussed many times on this forum, but I'm glad to hear you describe it as successful. My wife has stated she wants no intervention and that includes PEG. It's often a very difficult choice for many.
All the best as you care for your wife (it seems you are doing a marvellous job).
Tony
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Hi Strelley, unfortunately there is postcript to my email last week. Like Gerko I am now seeing increasing rigidity in her arms and perhaps even the legs. I raised my wife's left arm this morning and asked if it hurt; she pointed to the muscle on the right of her neck. At the same time, after regaining her ability to walk during the past six weeks, and being able to cycle over a mile on the static machine without stopping, last Friday she suddenly lost it again. We are hoping that this setback is temporary. But, as everyone knows, with this fiendish disease we learn to expect one thing after another.
Like you, we discussed ( as bet we could) the pros and cons of the PEG. My wife was in no pain - I think that influenced her decision. When/if the pain comes and gets very bad, she will hope that she has an understanding doctor!
Any advice on the stiffness and walking problems would be welcome.
Barnacle.
• in reply to
Hi barnacle
You may have read on this post that Gerko and vjessv are having some good results using a sports injury specialist/personal trainer.
Like you, my wife has a physiotherapist, and they specialise in neurological diseases (especially Parkinson's). My wife is at the stage of being unable to walk except a few steps with a Zimmer frame and accompanied by me (to prevent her falling - I've just had a full year preventing any falls! But it's very labour intensive). My wife does have upper arm pain now and the physio has identified the problem stemming from the typical PSP neck stiffness. She uses several exercises designed to relax the muscles.
If you read the studies published on the benefit of physical therapy with PSP/CBD, it concludes that it has some beneficial effects early in the diseases, but inevitably cannot stop the progression of stiffness. Some will develop severe neck dystonia, but the limbs are usually less affected. However, just the fact that movement becomes very restricted, will mean muscle weakness in the limbs.
Sadly, with PSP there is occasionally an overlap with other similar conditions like CBD and MSA, and this may mean more aggressive symptoms in some areas. Weakness on one side in the early stage is seen mainly in CBD.
The complex nature of the disease process in the brain of PSP sufferers makes it so variable and the severity can be quite different from one person to the next. It makes it even more complex when one considers there are at least 5 recognised sub types of PSP (let alone sub types of CBD and MSA).
My main aim with my wife is to manage any pain (at this stage with heat packs and ibuprofen or paracetamol as required) and provide as much comfort as possible. We minimise the use of medications but as the disease progresses, we will have to evaluate this situation. Keeping her moving in any form is a "must", and she exercises both legs and arms in her chair on a pedal machine. Fatigue is one of the major demons with PSP and limits the amount of activity she can perform.
Sorry this is not very helpful, and sounds a bit fatalistic, but managing this dreadful disease is very difficult for both carer and the poor sufferer. While my wife has few co-morbidities, I know others on this forum are having to cope with PSP/CBD alongside other diseases that exacerbate the whole situation. Medications taken to relieve symptoms often have some side effect that is similar to a PSP symptom, and some medications can create further inbalances with neurotransmitters.
you mentioned the use of Scopoderm , I tried this for my husband and he got in a dreadful state for three days , He is inclined to be sensitive to many meds .
I place it behind his ear as prescribed . Within an hour he couldn't speak delirious etc . I removed the patch within an hour but he stayed like it for three days . I couldn't put him to commode because he said everyone was looking at him .
he has had similar reactions from the eye drops put under the tongue . HYOcine is the cause . I believe .
I have wondered if I might try placing the patch further away from his face but don't want to go through that again .
Forward Head Posture.
We were told that with forward head posture the nerves that
travel through the neck from the brain can be become damaged this way, slowing down
the nerve impulses to the rest of the body.
Now we know why there was tingling in the hands and fingers, no range of motion,
stiff neck and shoulders.
This video she talks about Wolff's law and for every inch your head is forward it takes
between 15 - 30 lbs of muscle tension just to keep the head upright.
There are 3 parts but this one is the eye opener.
By the way its a chiropractor we are using at this time.
Hi vjessv, this video is indeed an eye opener. My wife has the tendency to bend her head forwards. She says she does it because otherwise she does not see where she walks. I tell her constantly not to do it, because it causes stiffness in her right shoulder. And when she walks I tell her always to walk upright and not to pull up her right arm in a bend position. And I tell her to relax. As soon as she does it, her whole posture improves and I can literally see that her neck muscles relax. I guess that the inclination to bend the head down has something to do with the up and down movement restriction of her eyes that she has. We tend to walk upright and subconsciously we examine our environment by moving our eyes up and down and from left to right. In her case this does not work as it should and it means she is afraid of hitting an object and then fall. So I am trying to tell her not to worry, I am at her side and she will not fall. And once she walks upright and looks into the distance, she starts walking again normally. And her whole body loses tension and her arms relax.
In the morning and before going to bed, I massage her right shoulder with Deep Heat, and I also notice immediately the benefit. I am also not certain if this will longer term keep the problems away that others describe, but it definitely slows down the process of stiffness and eventually pain.
Because of poor posture my wife had developed pain in her leg and needed massive amounts of pain killers. We are completely off it now. Also her tight hamstring has gone. Now we concentrate on her neck and shoulders and have seen major improvements. And that is very encouraging.
Hi Strelley I had a stiff neck in June but it just got better - Rick Stell was to give me injection this month if still needed but not now. All best wishes Mary B
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