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This Deadly Disease is Commoner than Doctors Think – and Frequently Missed

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Between five and ten per cent of all individuals diagnosed as suffering from Alzheimer’s Disease or dementia have been misdiagnosed and are suffering from normal pressure hydrocephalus; a disorder which can produce similar symptoms – but which can be treated.

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By Dr. Vernon Coleman

Most cases of dementia cannot be treated (though there are a number of things which can be done to slow down the pace at which the disease develops) but there is one particular cause of dementia which can be treated: idiopathic normal pressure hydrocephalus.

If a friend or relative is diagnosed with dementia then you should not accept the diagnosis until doctors have confirmed that the patient is not suffering from idiopathic normal pressure hydrocephalus – a disorder which is commonly misdiagnosed as Alzheimer’s disease, dementia or Parkinson’s disease. If the treatment is started early then the outlook is good.

Idiopathic normal pressure hydrocephalus is bizarrely under-researched, under-diagnosed and under-treated. There is almost certainly no disease affecting large numbers of people which is less understood.

Doctors certainly do not take the disorder as seriously as they should. Within the medical profession, it is known (when it is known at all) as the “wet, wacky and wobbly disease” – more a childhood term of abuse than a phrase redolent with respect.

Organisations which specialise in caring for the elderly are often appallingly ignorant about the disease, as are health websites.

On the internet, I asked the questions “Why are old people unstable?” and “Why do old people fall so often?” and none of the first several dozen responses mentioned “idiopathic normal pressure hydrocephalus.”

In the UK, the NHS Choices website devotes less than 70 words to the disease and describes the condition as “uncommon” which is manifest nonsense since it affects millions and is undoubtedly the commonest treatable cause of major disability and mental incapacity among the elderly.

Researchers are not interested in investigating the disease because a cure is already available and, since there is no need for a “wonder drug” there are not going to be any big, fat grants from drug companies. And doctors are not interested in diagnosing or treating the disease because it invariably involves older patients, and doctors are encouraged by governments (and much of society) not to take much interest in elderly patients.

If you made a list of the 100 commonest, potentially fatal but most easily cured medical conditions which are most often mistakenly diagnosed as something else, then idiopathic normal pressure hydrocephalus would be top of the list.

Idiopathic normal pressure hydrocephalus is terribly common, it produces devastating results, it is usually mistaken for something else and it is treatable. Patients who have been stuck in bed or in wheelchairs can, after treatment, get up and walk. They can resume their lives; talking and enjoying work and hobbies. Patients who have been abandoned have their lives back again.

A diagnosis of dementia (whether Alzheimer’s or any other variety of dementia) can be devastating to a patient and to family and friends. But that diagnosis is often wrong. And if the correct diagnosis is idiopathic normal pressure hydrocephalus then the true cause of the dementia is treatable.

Under normal circumstances, the space between the brain and the skull is filled with cerebrospinal fluid; a substance which is produced within the spaces of the brain, circulates in and around the brain and is gradually reabsorbed. In normal circumstances, the fluid is produced in the same quantities as it is being reabsorbed. The cerebrospinal fluid, which also surrounds the spinal cord, is there primarily to protect the brain in case of injury.

In the condition known as normal pressure hydrocephalus, the fluid is not reabsorbed as fast as it is produced.

When there is too much cerebrospinal fluid in and around the brain, the liquid accumulates in the ventricles – the spaces within the brain – and the brain is put under pressure, being pushed outwards. The result of this unusual pressure is that the brain is compressed and damaged in a variety of ways. The symptoms and signs of damage will depend upon the area of the brain affected. If the problem is not treated then the damage to the brain will be irreversible.

Logically, one might expect that with too much fluid in a confined space, there would be an increase in fluid pressure. By definition, this does not happen with normal pressure hydrocephalus. The intracranial pressure is normal and the increased amount of fluid dilates the ventricular system. If a scan is done, the ventricles usually look dilated. However, even when patients have magnetic resonance imaging (“MRI”) of the brain, or computerised tomography (“CT”), the wrong diagnosis can still be made because doctors who are not aware of normal pressure hydrocephalus will probably assume not that the ventricles have become larger but that the brain has become smaller as a result of cerebral atrophy.

Idiopathic normal pressure hydrocephalus, which was first described in 1965 by Salomon Hakim Dow and Raymond Delacy Adams, does not appear to be any commoner in men than in women or in women than in men and there is not as yet any evidence showing whether it is especially likely to affect any particular racial or ethnic groups. Although it can affect people of any age, it does, however, seem to be most commonly seen among patients in their 60s or older and it is this which results in patients being so often misdiagnosed as suffering from Alzheimer’s disease.

The initial, main symptom is often a curious, wide-legged, unsteady walk. The patient’s feet seem to stick to the floor and have to be dragged up in order to make the next step. Patients adopt a wide-legged gait in an attempt to make themselves more stable but they are, nevertheless, often unstable and may fall. Indeed, falling is a common problem with patients suffering from idiopathic normal pressure hydrocephalus and in any elderly person who falls frequently, the possible diagnosis of idiopathic normal pressure hydrocephalus should be placed quite high up on the list of possible causes.

Sadly, it is still the case that many leading health websites do not even mention normal pressure hydrocephalus as a possible cause of falls though the disorder should be listed towards the top of any such list, together with balance problems and drug side effects.

Since time is of the essence in diagnosing idiopathic normal pressure hydrocephalus, this disorder should always be considered very early on when a patient with dementia also falls.

Simply dismissing falls as “an inevitable part of ageing,” as some doctors are prone to do, is grossly irresponsible and unprofessional. Falling is not associated with any of the other common dementias, such as Alzheimer’s disease.

The gait disturbance tends to get steadily worse as the amount of fluid increases and the ventricles within the brain expand. When the ventricles expand, they put pressure on the part of the nervous system which descends into the spinal cord.

In the early stages of idiopathic normal pressure hydrocephalus, the gait disturbance will probably be mild and result in the patient being unsteady and having impaired balance, particularly when trying to walk up and down stairs or steps or even kerbs. The patient will probably also complain that their legs feel weak, though there will probably be no explanation for this.

As the disease progresses, so the gait steadily gets worse. The patient will not lift their feet properly when walking and will walk very slowly. It is because of the gait disturbance that normal pressure hydrocephalus is often misdiagnosed as Parkinson’s disease.

The tendency to fall is so common in idiopathic normal pressure hydrocephalus that it is, I think, reasonable to say that if a patient falls a good deal and suffers from some form of dementia then a diagnosis of idiopathic normal pressure hydrocephalus must be considered.

In the final stages of the disease, patients may be unable to walk, then unable to stand and finally even unable to turn over when lying in bed.

The second symptom is dementia.

The dementia in idiopathic normal pressure hydrocephalus usually involves the frontal lobe (because of the situation of the swelling ventricles within the brain) and patients will usually appear slow-witted, forgetful and apathetic. There may be an absence of mood (patients are neither happy when they might be expected to be happy nor sad when sadness might be appropriate) and patients often have difficulty in speaking.

The first sign of the dementia associated with this disease is often difficulty in planning, organising or putting things in order. The patient may also have difficulty in paying attention and in thinking in an abstract way.

Patients may lose interest in daily activities, they forget names and things to be done, they have difficulty in dealing with routine tasks and their short-term memory may be poor. (One sufferer complained that he could no longer read a book because when he tried, he could not remember what had happened 10 pages earlier.)

Although this symptom is usually placed second chronologically, it may be noticeable much earlier in some patients. I suspect that the reason the mental problems are not recognised or recorded may often be because relatives and friends don’t know what to look for, don’t register subtle changes as being indicative of any underlying pathology and may dismiss changes as being simply consequences of “old age.”

The final symptom to occur is often urinary incontinence.

Patients tend to have an increased sense of urgency (they suddenly need to urinate) but in the later stages, as the frontal lobe damage increases, they become indifferent to the consequences, and genuine urinary incontinence may result. In some cases, the urinary incontinence may occur quite early on in the disease. Some patients also develop faecal incontinence.

Mainstream medical textbooks do not include headache as a significant symptom in this condition but it can occur and it seems perfectly reasonable that it should. After all, the brain is being compressed and squashed against the skull and the eyes are under constant pressure. It would be rather unlikely if patients with this condition did not have, at the very least, an uncomfortable feeling in their heads.

Whatever symptoms may occur they tend to progress with time, sometimes slowly and sometimes quite quickly. Careful questioning of the patient may reveal that symptoms have been present for months or even years before a doctor was consulted. By then the patient may have, to a certain extent, become accustomed to their disability and the chances are high that they themselves will have learned to regard the difficulty in walking, the slowness of thought or the incontinence as an inevitable consequence of ageing. In many cases, it is only when there is a critical loss of function, or a disability which dramatically affects the patient’s independence, which leads to the patient seeking medical advice. At that point, the chances are high that the only solution on offer will be a bed in a nursing home or hospice or a suggestion that a relative should take over and provide accommodation and care.

The symptoms associated with normal pressure hydrocephalus do vary a good deal. The one constant factor seems to be the delay in making the diagnosis. Time and time again patients and relatives will report that it took years for an accurate diagnosis to be made and that even then it was only after the patient had seen a good many doctors. The evidence now suggests that in 80% of patients, the correct diagnosis is never made.

The one thing to remember is that normal pressure hydrocephalus can be treated quite simply by a specialist who understands the disease.

Whenever dementia is diagnosed, normal pressure hydrocephalus should always be considered.

Taken from `When Dementia Can be Cured: 1 in 10 Dementia Patients Have NPH and Could be Cured in Days’ – which is available as a paperback and an eBook from the bookshop on

Note: One of Dr. Coleman’s websites no longer exists.  Here’s an update from Dr. Colman about his websites:

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a concerned citizen
a concerned citizen
1 month ago

You guys should be covering the scariest story there is which of course is….Why is the U.K. Government filling hotels and B&B’s around the country with U.N. soldiers ??

There is a Whistle-blower out there.

Reply to  Rhoda Wilson
1 month ago

I saw the information on Telegram, trying to find the link. This man owned his hotel, loaned it to the Government for lots of money. Long story short, he eventually took delivery of small arms and other weapons for his guests. He hid the weapons.

Reply to  Mania
1 month ago

Try searching this Telegram channel, it’s an interesting link anyway.

Russell L. Blaylock, M.D.
Russell L. Blaylock, M.D.
1 month ago

As a retired neurosurgeon, I have treated a number of cases of NPH. He is exactly right—they present much like Alzheimer’s and are reversable with treatent. One man I treated had been in a coma for years in a nursing home. I shunted him and he recovered completely. This is the sorry state of medical care in the world.

1 month ago

Apologies for being pedantic, but I thought a “commoner” was a person of low rank? Shouldn’t it read more common?

Dave Owen
Dave Owen
1 month ago