Monday, 24 July 2017

REM sleep disorder and acting out dreams

REM sleep disorder causes people to act out their dreams

Researchers have a non-invasive diagnostic tool called a liquid biopsy that replaces cutting.

It's a condition that most of us have never heard of, but REM sleep disorder is most common in men who also have Parkinson's disease, or Lewy body dementia.

When most of us sleep, our bodies enter a state of muscle paralysis. People with REM sleep behavior disorder lose that, and are capable of acting out physical activity in their dreams, which can be violent.

Orvis "Rig" Rigsby and his wife, Karen, loved theater and travel.

"He was a theater professor and I was a theater person so for me it was really. There was an immediate connection and we had a similar sense of humor and it was just a lot of fun," Karen said.

But just a few years ago, Rig started showing signs of dementia.

"He had an incident where he got very disoriented and lost in our backyard and that's when we started looking for help from a neurologist," Karen said.

At first, Dr. Ira Goodman thought Rig had Alzheimer's disease.

"And actually I initially referred him for a clinical trial for Alzheimer's disease but right before he entered I changed my mind," said Dr. Goodman.

Instead, Doctor Goodman diagnosed Rig with Lewy body dementia and REM sleep behavior disorder. The condition causes a person to act out violent dreams.

"There have been fractures, there's been subdural hematomas, and as far as spouses or bed partners, there's been reports of up to two-thirds of bed partners being injured during an episode," Dr. Goodman said.

"Sometimes he would just start yelling or sometimes he would start punching around. Sometimes, it was like he flew off the bed," said Karen.

Currently there is no cure. Rig wears a patch that helps ease the symptoms, but keeping a watchful eye is the best defense.

"If he's having a bad night I'll still sleep in the bed with him and hold my hand on his shoulder," said Karen.

Dr. Goodman and Karen Rigsby say not to be afraid of getting evaluated if you notice any symptoms.

"I tell everybody, don't waste time, don't waste time, don't wait, don't wait, don't wait. That's all you can say," Karen said.

A national phase three clinical trial is underway for a new drug called Nelotanserin to treat the REM sleep behavior disorder. Klonopin, an anti-anxiety drug, called Clonazepan in the generic form, is most commonly prescribed, but it has side effects. Another option mentioned by mayo clinic, is to take a dietary supplement called melatonin. By the way, Karen says her husband Orvis still loves theatre, movies, music and dance.

If you would like more information, check out the medical breakthroughs on the web at

Sunday, 23 July 2017

Nine Lifestyle changes may reduce risk of dementia

Nine lifestyle changes may reduce risk of dementia

Behind the Headlines

Thursday July 20 2017[

Regular exercise may help lower dementia risk
"Nine lifestyle changes can reduce dementia risk," BBC News reports. A major review by The Lancet has identified nine potentially modifiable risk factors linked to dementia.
The risk factors were:
  • low levels of education
  • midlife hearing loss
  • physical inactivity
  • high blood pressure (hypertension)
  • type 2 diabetes
  • obesity
  • smoking
  • depression
  • social isolation
However, it's important to note that even if you add up the percentage risk of all of these factors, they only account for about 35% of the overall risk of getting dementia. This means about 65% of the risk is still due to factors you can't control, such as ageing and family history.
Although not guaranteed to prevent dementia, acting on the risk factors above should improve your physical and mental wellbeing.

What is dementia?

Dementia refers to a group of symptoms associated with the gradual decline of the brain and its abilities. Symptoms include problems with memory loss, language and thinking speed.
The most common cause of dementia is Alzheimer's disease. Vascular dementia is the next most common, followed by dementia with Lewy bodies.
For more information, visit the NHS Choices Dementia Guide.

Where did the review come from?

This review was written by the Lancet Commission on Dementia Prevention, Intervention and Care (LCDPIC). The commission is established by convening experts in the field to consolidate current and emerging evidence on preventing and managing dementia. It generates evidence-based recommendations on how to address risk factors and dementia symptoms. These are presented in this review.
The LCDPIC endeavoured to use the best possible evidence to make the recommendations. However, in cases where the evidence was incomplete, it summarised the balance of the evidence, drawing attention to the strengths and limitations.
The media in general has covered the review responsibly and accurately, with helpful comments from experts in the field.

What does the review say?

The review examines aspects of how better to manage the burden of dementia: the risk factors, interventions for prevention and interventions for treatment.

Risk factors

The LCDPIC discusses the effects of several different risk factors potentially linked to dementia.
The review reported population attributable fractions (PAFs). PAFs are an estimate of the proportion of cases of a certain outcome (in this case, dementia) that could be avoided if exposure to specific risk factors were eliminated – for example, how many lung cancer cases would be prevented if nobody smoked.
Using the available evidence, researchers calculated PAFs for the following risk factors.


Less time in education – specifically, no secondary school education – was responsible for 7.5% of the risk of developing dementia.

Hearing loss

The relationship between hearing loss and the onset of dementia is fairly new. It's thought that hearing loss may add stress to an already vulnerable brain with regard to the changes that occur. Hearing loss may also increase feelings of social isolation. However, it's also possible that old age could have a role to play in this association.
The LCDPIC analysis found that hearing loss could be responsible for 9.1% of the risk of developing dementia.

Exercise and physical activity

A lack of physical activity was shown to be responsible for 2.6% of the risk of dementia onset. Older adults who do not exercise are less likely to maintain higher levels of cognition than those who do engage in physical activity.

Hypertension, type 2 diabetes and obesity

These three risk factors are somewhat interlinked; however, all had PAFs lower than 5%, with hypertension contributing the greatest risk of the three:
  • hypertension – 2%
  • type 2 diabetes – 1.2%
  • obesity – 0.8%


Smoking was found to contribute to 5.5% of the risk of dementia onset. This is a combination of smoking being more widespread in older generations, and there being a link between smoking and cardiovascular conditions.


It's possible that depressive symptoms increase dementia risk due to their effect on stress hormones and hippocampal volume. However, it's not clear whether depression is a cause or a symptom of dementia. It was found to be responsible for 4% of the risk of developing dementia.

Lack of social contact

Social isolation is increasingly thought to be a risk factor for dementia as it also increases the risk of hypertension, heart conditions and depression. However, as with depression, it remains unclear whether social isolation is a result of the development of dementia.
It was found to contribute to 2.3% of the risk of developing dementia.

Prevention of dementia

The review highlights that although there are potentially modifiable risk factors for dementia, this does not mean dementia as a condition is preventable or easy to treat. It is evident that there are multiple risk factors contributing to the onset of the disease. However, some interventions that could prevent onset include:
  • Using antihypertensive drugs, such as ACE inhibitors, in people with hypertension.
  • Encouraging people to switch to a Mediterranean diet, which is largely based on vegetables, fruit, nuts, beans, cereal grains, olive oil and fish. This has been proven to improve cardiovascular health, and may help with the symptoms of type 2 diabetes, obesity and hypertension.
  • Encouraging people to meet the recommended physical activity levels for adults. Again, regular exercise may help with the symptoms of type 2 diabetes, obesity and hypertension.
  • Using cognitive interventions, such as cognitive training, which involves a series of tests and tasks to improve memory, attention and reasoning skills. The review points out, however, that the clinical effectiveness of most commercially available brain-training tools and apps is unproven.
  • Encouraging people to become more socially active. This could be by organising social activities – book clubs, for example – for older adults. 
  • Continuing to provide support to smokers who want to quit.
Read more about ways to reduce your dementia risk.

Thursday, 20 July 2017

TBI and Dementia?

TBI and dementia: Link or no link?

Published Published Today

Brain scans
Researchers are using population studies and animal models to investigate how TBIs might lead to progressive neurodegeneration in some patients.

Whether or not traumatic brain injury predisposes individuals to dementia has long been under investigation, and the results of different studies are often conflicting. But evidence is mounting that traumatic brain injury can cause long-term damage to the brain.

Traumatic brain injuries (TBIs) disrupt the normal function of the brain. They occur as a result of a blow or jolt to the head, or an injury that penetrates it, according to the Centers for Disease Control and Prevention (CDC).

In 2013, 2.8 million people in the U.S. sustained TBI, of which approximately 56,000 resulted in death. The age groups most affected by TBI were small children up to the age of 4, teenagers and young adults between 14 and 25 years, and those over 75 years of age. The most common causes of TBI were falls, being struck by an object, and car accidents.

The immediate symptoms can range from headaches and blurry vision to slurred speech and short-term memory problems. TBIs can also have long-term effects on health, with an increased risk of seizures and infections sometimes following.

Research has suggested a link between TBI and several forms of progressive neurodegeneration - such as dementia, Alzheimer's disease, amyotrophic lateral sclerosis (ALS), and Parkinson's disease - but there is conflicting evidence.

Why is it so difficult to find conclusive evidence? And what are the long-term predictions for TBI patients?

The latest findings

Last week, Medical News Today reported on a study by Finnish researchers, which was published in the journal PLOS Medicine. Using the Finnish Care Register for Health Care, the team compared the medical notes of working-age individuals under the age of 65 with mild or moderate to severe TBI, all of whom had subsequently developed dementia, Parkinson's disease, or ALS.

They found a link between moderate to severe TBI and dementia, but no links with Parkinson's disease or ALS were discovered.

Importantly, they found that the incidence rate of dementia in moderate to severe TBI patients was similar to that found in the general population. But dementia occurs mostly in the elderly, highlighting that TBI shifts the risk from old age to working age.

The dataset used in this study was comprehensive; Finland has a tax-funded healthcare system. According to the authors, all acute TBI cases are treated at public hospitals and would therefore have been included in the study.

Yet data were only available for TBI patients who had subsequently been admitted to the hospital with neurodegenerative symptoms. The authors explain that it is possible that other patients with a diagnosis of neurodegeneration may have been missed if they had not been hospitalized at the time.

The results of the Finnish study concurred with data published last year in the Asian Pacific Journal of Public Health. Here, rates of dementia were higher among Taiwanese TBI patients than among those who had not sustained TBI.

Another study, published recently in the Journal of Alzheimer's Disease, failed to establish a link between TBI and Alzheimer's disease.

The authors compared 706 U.S. seniors with and without TBI and found that cognitive decline in participants was not affected by having experienced TBI. But in this study, TBI was self-reported by the study participants rather than assessed in their medical notes, meaning that data may not have been accurate.

A systematic review published earlier this year in Annals of Physical & Rehabilitation Medicine struggled to find a meaningful connection between TBI and Alzheimer's disease.

The review included 18 studies, but the authors were unable to classify TBI by severity. By grouping mild and moderate to severe TBI into the same category, it may not have been possible to establish a connection between TBI and Alzheimer's disease.

Other studies, however, have found clear links between TBI and Alzheimer's disease and Parkinson's disease.

TBI, neurodegeneration link supported

In an Alzheimer's disease patient cohort, those with histories of moderate to severe TBI began to experience symptoms and received their diagnosis by an average of 2.5 years earlier than non-TBI patients, according to a recent study published in the journal The Clinical Neuropsychologist. But again, TBI was self-reported in this study.
A paper published last year in JAMA Neurology found that while there was no link between TBI and dementia or Alzheimer's disease, there was a connection with Parkinson's disease.
Some of the study participants had consented to brain autopsies after their death. Both mild and moderate to severe TBI patients showed signs of Lewy bodies, a hallmark of Parkinson's disease, in their brains, while moderate to severe TBI patients also had signs of cerebral microinfarcts.
Importantly, while study participants were aged 65 and over, a third of mild and nearly half of moderate to severe TBI patients were age 25 years or younger when they sustained their TBI. This demonstrates that TBI could have long-term neurodegenerative effects.
The problem with this type of study is that they mostly rely on measures of association. This means that researchers establish whether or not there is a link between TBI and neurodegeneration in a particular study population based on the data they are using.
However, it is not possible to establish cause and effect in these studies, meaning that there could be other biological mechanisms involved in causing neurodegeneration in these patients.
To study what happens in the brain after TBI, researchers turn to animals. Here, the events following TBI are beginning to be unraveled.

How can TBI cause neurodegeneration?

A recent article in Reviews in the Neurosciences summarized what is known, to date, about the neurological damage following TBI.
The initial injury damages blood vessels, neurons, and other cell types. As a secondary effect, neurons become overstimulated, resulting in oxidative stress and cell death. Water metabolism is also affected, causing swelling in the brain.
The blood-brain barrier, which is normally impenetrable to most substances, becomes disrupted, allowing immune cells to infiltrate the damaged brain.
The combination of oxidative damage, neuroinflammation, edema, and damaged blood flow can cause significant and long-term damage to the brain.
Using a mouse model of brain injury, a recent study published in The Journal of Neuroscience set out to investigate the long-term effects of TBI in more detail.
Damage to the regions surrounding the injury site was immediate. Crucially, long-term damage was observed in distant regions in the brain and was attributed to chronic neuroinflammation.
In a mouse model of Alzheimer's disease, long-term effects were also observed after TBI in a study reported in Neuroscience Letters. Interestingly, there were no immediate differences in the brains of aged mice that had experienced TBI and those that had not.
Both injured and uninjured mice developed senile plaques, a hallmark of Alzheimer's disease, at the same rate for the first week of the study. However, at 28 days after the TBI, significantly more plaques were present in the mice. This was accompanied by impaired spatial learning.
The researchers interpreted this to mean that TBI accelerates Alzheimer's disease symptoms.
For patients who have experienced TBI, what do these data mean?

The need for long-term monitoring

While it is possible to study the cellular events that follow TBI in model systems, it is more difficult to confidently apply these results to human patients.
Many studies point to long-term effects of TBI on the brains of animals and humans, but the extent of the damage and the precise implications remain unclear.
Regardless of their results, what most studies agree on is the need for long-term monitoring for TBI patients, especially those who have experienced moderate to severe TBI. There is also a call for more accurate diagnostic criteria that would allow physicians to spot the onset of TBI-associated neurodegeneration earlier.
This would enable physicians to closely monitor patients and start treatments or interventions early on, with the aim of slowing the progression of cognitive decline.
It is clear that more studies are needed, specifically those that investigate cause and effect and that can link the results to large-scale, accurate population data.
It is also important to remember that not all of those who have sustained TBI will definitely go on to develop progressive neurodegeneration.
In the Finnish study, 1.6 percent of those with a history of mild TBI went on to develop dementia. Even though those with moderate to severe TBI were 90 percent more likely to receive a dementia diagnosis, this still only equates to a rate of 3.5 percent.
While there is strong evidence to suggest a risk of long-term damage to the brain after sustaining TBI, questions remain on why some patients go on to develop progressive neurodegeneration and how many are likely to be affected.

Monday, 17 July 2017

Right to die with dignity

People on television are discussing the rights and wrongs of ending life when you have a terminal illness.

While I am not in this position, of living with a terminal illness, I do in all honesty think that there is far too much red tape connected with this along with far too many so called gooders getting involved

If someone has something like motor neuron disease or rapid form of cancer etc, and there bodies are failing, I don't understand why they should not be allowed to die with dignity, rather than fighting to the bitter end.

In all honesty, we would be prosecuted if we allowed an animal to suffer in similar conditions, yet humans are expected to carry on struggling.

I do feel that the guidelines stop unnecessary premature deaths, yet many people think it's wrong to stop fighting an illness.

I know that there are Christian groups linked with stopping people from dying early when they have had enough, and to be honest it's time they allowed people to make up their own minds.

Many of us have set up guidelines for the end of our lives, and I see nothing wrong with that at all because it was discussed between my wife and I.

To be honest there is no way that I want to be left living in a cabbage state, and if it came to it, I may want to look at alternatives if the chips were down

So let us hope that common sense steps in and people can die with the dignity they deserve

Saturday, 15 July 2017

Depression in Dementia etc

A lot has been written over the last few months about depression, yet it seems to appear in many illnesses like Parkinson and Dementia, to name only two.

Many doctors don't look at the cause of the depression, and simply want to issue sedatives etc, "but is this the real  answer.".
Surely they should be looking for the true cause, rather than using drugs,

I know that there are times now when my brain goes,  and I am no longer able to think or plan things as I was used to, and this is upsetting, because it's very hard to accept or understand.

I have often been accused of frowning these days, yet there are times when  I  have no real  idea when I am smiling, unless I can look into a mirror.
Facial expressions don't mean a lot to me anymore.

It's not easy when you are not I control of these things,  and sometimes it's embarrassing.

Things like reading and understanding letters and documents can be an experience, because I don't always understand what I am reading or seeing.

I often misunderstand what people are saying these days, and this in turn causes upset,  until it's all explained properly. But I think this is my brain working things out wrongly

This causes mistrust between people, but unless you to have been there you would never understand it.

These days it takes me longer to work to things out, or try to carry on doing  normal things, and have to resort to items such as voice activated software on my computer, so that I can write my blogs etc.

But I guess over the years we have all said, that we feel totally depressed, but it's only when things go wrong and you cannot workout how to correct them.

It's a phrase which can cause a lot of trouble these days, especially if you say it to the wrong person, like an uncaring doctor

When I was first aware that things were going wrong, and had not been diagnosed with Lewy Body Dementia, all I got from the family doctors was that it was depression

Yet the job I was in, there was not enough time to get depressed, as I worked 24 hours a day doing breakdowns.

Yes it was hectic from what I can remember, but it was a job I loved.

I did not always get a full nights sleep, but my employers always said, that when the chips were down, I stepped up a gear to get the breakdowns or power failures sorted out.

Perhaps other people would have simply become stressed or depressed,  but I enjoyed my life, until I could not do my Job anymore.

I guess that because I could not remember how to do estimates and electrical work anymore,  and ended up counting on my fingers, which was distressing

But in this case who wouldn't be depressed, it was because I was losing control over my brain and thought that I was going mad.

I do feel that life has been turned on it's head, in more ways  than one, and things are no longer what they seem, and this causes me at times to feel depressed, but as with memory problems etc, I have to fight it for my families sake.

But I do feel that we need more support for depression or the symptoms of this illness to stop it getting any worse

I don't remember in all honesty hearing about so many suicides as we have these days, but if we are honest there is not the support out there, that we should have.
We also have Government who don't care about anyone but themselves and that does not help.

Let us hope that in the future we get more support for those in need, before it's too late.

While I openly admit to getting depressed at times, I do have ways of trying to deal with it, and turn things around.

Yes it's to do with losing control over my brain, but that's life and I have to hang on to that and help others wherever I can.

I realise that I am starting to lose control of my photography quite a lot these days,  but I will just have to find something else to do and be positive

I have my family and grandchildren and they are more important to me.

Friday, 14 July 2017

Brain training app reduces symptoms of pre-dementia

Brain training apps can help ward off early signs of dementia, according to a new study.

The study, jointly carried out by Cambridge University and University of East Anglia researchers, and partly funded by Janssen, found that an app called Game Show improved the memory of patients with amnestic mild cognitive impairment – a precursor for dementia.

The game involves associating geometric patterns with locations. Its difficulty increases each time a player guesses correctly.

Half of the patients used the app for two hours per week over four weeks. The other played no games at all.

The app specifically improved ‘episodic’ memory by around 40%. This type of memory is based on autobiographical events like past locations they have visited. Better episodic memory therefore helps with day-to-day activities, for example remembering where a car has been parked.

“Game Show could hold some benefit for people with mild memory problems,” said Dr Carol Routledge from Alzheimer’s Research UK, speaking to The Telegraph.

“But without more research we can’t tell if the same benefits could be achieved with any other electronic game.”
Larger trials investigating the game’s use have been planned.
An alternative to medicine?
Numerous studies have indicated the benefits of regularly using brain training apps. However, more, longer-term studies need to be conducted to understand whether they can help with symptoms or prolong disease onset.

In the pharmaceutical world, no company has so far developed a cure for dementia, although some drugs can control symptoms.

In the US, Roivant Sciences spinout Axovant recently received FDA fast track designation for its pipeline drug nelotanserin. The drug treats visual hallucinations associated with dementia with Lewy bodies.

The firm’s lead candidate, intepirdine, is currently in a phase 3 trial for the treatment of Alzheimer’s disease. It is being tested in combination with current standard therapy of donepezil in its ability to improve patient cognition.

Other, larger companies have developed candidates in the past which have unfortunately proved unsuccessful. One of the more notable examples is Eli Lilly’s solanezumab, which failed in a phase 3 study involving patients with early stage disease late last year.

Thursday, 13 July 2017

Lewy Body Dementia

Lewy body dementia: Thousands 'at risk of injury or death' due to inappropriate prescription of antipsychotics

Prescription of these drugs often worsens symptoms and has been found to increase the risk of death fourfold

The Independent Online

Thousands of people in the UK with a commonly misdiagnosed form of dementia are at increased risk of injury or death because they are being prescribed potentially harmful antipsychotic medication, experts have warned.

The symptoms of Lewy body dementia include hallucinations, motor problems, fainting spells and disturbed sleep in which people appear to “act out” their dreams, as well as the cognitive decline associated with other forms of the disease.

Dementia with Lewy bodies is the second most common form of the disease after Alzheimer's and is estimated to account for 10 to 15 per cent of all dementia cases.
However, up to 60,000 people in Britain may be unaware they have the condition, which is missed or misdiagnosed in up to 50 per cent of cases, said Professor Clive Ballard, a leading researcher of the disease at the University of Exeter.

Antipsychotic drugs given to dementia sufferers to treat behavioural disturbances has been found to increase the risk of death for people with Lewy body dementia fourfold, compared to one and a half times in people with Alzheimer’s disease, he warned.

These medicines, prescribed to around 15 per cent of people with dementia overall, can worsen symptoms of Parkinson’s disease commonly seen in Lewy body dementia sufferers, leading to risky falls.
They can also trigger a potentially fatal syndrome known as a “neurolaptic sensitivity reaction”, described by Professor Ballard as “a very acute syndrome which can come on within one or two hours of taking an antipsychotic drug, or increasing the dose”.

“When people have these reactions they develop very severe Parkinson’s symptoms and become very confused. You also get a breakdown of muscle cells which can lead to renal failure; there’s quite a high mortality rate acutely associated to these reactions.

Professor Ballard said around a quarter of people diagnosed with Lewy body dementia will have such a reaction when given the wrong medication.

Even if people do not die as a result of the syndrome, they may experience a steep decline in their condition “which they usually do not recover from”, he added.

A new set of diagnosis guidelines have been introduced by the Dementia with Lewy bodies consortium in the hope that better diagnosis rates will reduce the risk of patients being given drugs that may harm them.

“Getting the diagnosis right is very important, particularly for the treatment of the psychiatric symptoms those people may have,” said Professor Ballard.

The vast majority of Lewy body dementia patients – 80 per cent – experience a very high frequency of distressing psychotic symptoms, he added.

“If they’re misdiagnosed there’s a very high likelihood those individuals will be given an antipsychotic drug, which could be very damaging for that individual.”

In total, around 120,000 people are estimated to suffer from Lewy body dementia in the UK. The NHS says “more than 100,000” may have the condition.

    Monday, 10 July 2017

    Lewy Body Dementia and Parkinsons Dementia

    Lewy body dementia, an umbrella term for both Parkinson’s disease dementia and dementia with Lewy bodies


    Lewy body dementia (LBD) is an umbrella term referring to both Parkinson’s disease dementia and dementia with Lewy bodies. In dementia with Lewy bodies, cognitive symptoms interfering with daily living present themselves before or within one year of Parkinson’s-like movement problems. In Parkinson’s disease dementia, cognitive symptoms usually don’t appear until after a year of the onset of movement problems.

    Researcher Howard I. Hurtig explained, “An early and accurate diagnosis may be lifesaving. The avoidance of medications that can worsen the symptoms of LBD cannot be overemphasized. Every patient with LBD and their caregiver(s) should memorize the list of acceptable and forbidden drugs.”

    Lewy body dementia is characterized by an abnormal buildup of Lewy bodies in areas of the brain responsible for memory, behavior, movement, and personality. Parkinson’s disease symptoms primarily affect mobility and motor abilities. Diagnosis can be difficult because more than one cognitive disorder can be causing changes in the brain. For proper diagnosis and differentiation between dementia and Parkinson’s disease, it’s best to consult with a neurologist or geriatric physician.

    Signs and symptoms of dementia with Lewy bodies and Parkinson’s disease dementia

    Parkinson’s disease dementia

    ·         Changes in memory, concentration, or judgement

    ·         Trouble interpreting visual information

    ·         Muffled speech

    ·         Visual hallucinations

    ·         Delusions, paranoid thoughts

    ·         Depression

    ·         Irritability and anxiety

    ·         Sleep disturbances

    ·         Loss of decision-making ability

    ·         Disorientation in familiar surroundings

    ·         Trouble learning new material

    ·         Difficulty using complex language

    Dementia with Lewy bodies

    ·         Changes in thinking and reasoning

    ·         Confusion and alertness that varies significantly

    ·         Parkinson’s symptoms

    ·         Visual hallucinations

    ·         Delusions

    ·         Trouble interpreting visual information

    ·         Acting out dreams

    ·         Memory loss

    As you can see, Parkinson’s disease dementia and dementia with Lewy bodies share many signs and symptoms. It’s important that a specialist reviews the patient’s specific symptoms to establish a proper diagnosis and recommend an appropriate mode of treatment.

    Wednesday, 5 July 2017

    What is Lewy Body Disease

    What Lewy Body Disease Is
    On this page:
            Lewy body disease is a kind of dementia
    Lewy body disease is a kind of dementia. Dementia is a general decline in cognitive abilities (thinking, memory, language, etc.) usually due to degeneration of the brain. There are many kinds of dementia. The most common and best known kind is Alzheimer's disease. Lewy body disease is thought to be the second most common kind of dementia. It causes cognitive problems similar to those seen in Alzheimer's disease and motor problems like those in Parkinson's. Like Alzheimer's disease, Lewy body disease is currently incurable and it gets worse with time. It should be noted that there are some kinds of dementia (for example, those caused by a thyroid problem or a deficiency in vitamin B-12) that can be reversed. That's why it's important to have a full work-up done when dementia is suspected.
    Lewy body disease is also referred to as dementia with Lewy bodies, Lewy body dementia, diffuse Lewy body disease, senile dementia of Lewy body type, and Lewy body variant of Alzheimer's disease.
    Despite its prevalence, Lewy body disease is not well known. Every year, it seems that Newsweek and other popular magazines run a feature article on the progress made against Alzheimer's disease, and any new information about Alzheimer's is big news. In these articles there's never a mention of Lewy body disease. In our experience many health professionals (physical therapists, nurses, and even some doctors) aren't well informed about Lewy body disease.
            What are Lewy bodies?
    In 1912, while Frederick Lewy was examining the brains of people with Parkinson's disease, he discovered irregularities in the cells in the mid-brain region. These abnormal structures (microscopic protein deposits found in deteriorating nerve cells) became known as Lewy bodies. Since that time, the presence of Lewy bodies in the mid-brain has been recognized as a hallmark of Parkinson's disease. In the 1960s, researchers found Lewy bodies in the cortex (the outer layer of gray matter) of the brains of some people who had dementia. Lewy bodies in the cortex are known as cortical Lewy bodies or diffuse Lewy bodies. (That's why Lewy body disease is sometimes called cortical Lewy body disease or diffuse Lewy body disease.) Cortical Lewy bodies were thought to be rare, until the 1980s when improved methodologies showed that Lewy body disease was more common than previously realized.
    People with Lewy body disease have Lewy bodies in the mid-brain region (like those with Parkinson's disease) and in the cortex of the brain. It's believed that they usually also have the "plaques and tangles" of the brain that characterize Alzheimer's disease. Conversely, it's believed that many people with Alzheimer's disease also have cortical Lewy bodies. Because of the overlap, it's likely that many people with Lewy body disease are misdiagnosed (at least initially) as having either Parkinson's disease or Alzheimer's disease. A big factor in the misdiagnosis might be that Lewy body disease is relatively unknown.
           Symptoms of Lewy body disease
    People with Lewy body disease have cognitive problems (problems with thinking, memory, language, etc.) similar to those that occur in Alzheimer's disease. Therefore, it can be hard to distinguish the two. Some doctors think there are three distinguishing features and the presence of two of them makes the diagnosis of Lewy body disease probable:
    • Motor problems typical of Parkinson's disease but usually not so severe as to warrant a diagnosis of Parkinson's. Of these problems, an impairment in walking (a shuffling gait) might be the most common one. Also common would be muscle stiffness and a tendency to fall. Tremor would be less common.
    • Fluctuations in cognitive function with varying levels of alertness and attention. Periods of being alert and coherent alternate with periods of being confused and unresponsive to questions.
    • Visual hallucinations, usually occurring early on. Delusions may be common too.
    It's possible that people with Lewy body disease are better able to form new memories than those with Alzheimer's disease. Compared with Alzheimer's, Lewy body disease may affect speed of thinking, attention and concentration, and visual-spatial abilities more severely than memory and language. Depression may be a typical symptom too.
    Right now, doctors prescribe drugs to treat four major features found in Lewy body disease (also see the medication section of our Information page):
    • Cognitive problems. Usually, a drug like Aricept is prescribed. This is the same drug that is commonly prescribed for Alzheimer's disease. In some people, it seems to slow the progression of the disease.
    • Motor problems. Levodopa/carbidopa (Sinemet) is frequently prescribed to deal with the motor problems. This medication can worsen hallucinations, though.
    • Hallucinations. An antipsychotic medication, such as Zyprexa, might be prescribed. This kind of medication can worsen motor problems, though. Also note the FDA warning.
    • Depression. In cases of depression, an antidepressant, such as Zoloft or Prozac, might be prescribed.

    Thursday, 22 June 2017

    Stepping back

    Over the last year months I have had problems trying to plan things out, and concentrate on what I am doing.

    So I have decided after a lot of careful thought, that its time to step back from a lot of things and take it easy.

    I have noticed that I can't keep up with fast moving topics in meetings these days, and that is hard to accept, but  I  want to stop before I make a terrible mistake

    It's difficult I know, but I do believe it's all for the best, although I will still write the occasional blog if i can, and try to carry on with my photography. However I think it's getting close to the time where I have to say that  enough is enough.

    I have arranged to complete some talks to graduate nurses this year, and after that I will have to consider what happens in the future.

    It's been hard to accept just what is going on in my brain, but I feel that I have to slow down. This has had a knock on effect with walking, as I have also had problems with tripping while walking over the last few months, and this appears to be getting much worse these days.

    Early next month I have another assessment with the Clinical Phychologist and  I confess that I am not looking forward to that.

    I next expected this blog to get the coverage it has got over the last few years,
    "218-300" page views in "114 countries",  but I find it very hard to think of topics these days, so I guess I will soon be stopping altogether.

    However I know in my own mind that I have achieved many things since my diagnosis, and have been amazed and honoured to have been so involved with so many new friends.

    This is all down to my family and so many wonderful friends

    Thank you one and all

    Wednesday, 21 June 2017

    Blogs around the world

    Blogs are used by many people these days, some as a daily journal, while others are about personal medical problems or interests

    Although my own started off as a way of describing my graphic nightmares and other problems linked to Lewy Body Dementia, I often look at things like photography and wildlife, something I love to follow while I can.

    I have often been in the lucky position of photographing wildlife, which has given me so much pleasure, because to me on a good day, it's a real bonus.

    While the professionals see things on a daily basis, I am not always thinking clearly enough, or don't have a camera with me, so when things really click together it gives me so much joy.

    The other day my wife and I were out for a walk and I saw something move, but as normal, I have to look at it carefully to see if it's real or my brain playing trucks.

    It was only when my wife yelped that I realised, that yes it was real, and it was some form of mouse.
    I don't know if it was a door mouse or a field mouse, but it was happily munching away on something ignoring us.

    So I managed to get my phone out of my pockets and photographed the small animal.

    Some days at our caravan I see other wildlife,  if I am lucky to get close enough, like the young rabbits around the site.

    There is something relaxing about watching wildlife, and I really enjoy it,  when my eyes and brain are working

    However many people these days write about one topic or another and never  cover anything else.

    These days I don't always have the ability to remember as much as I used to do, so I use voice activated software to remember things, or the recorder on my phone,  and this helps me to remember the topics I want to write about, and any useful information

    Writing blogs is a way of exercising explaining things like an illness, in the hope it can help others, or it may be a way of removing stigma etc.

    If I ever get stuck on a topic, I sometimes look it up on the internet and then use any relevant information, but also state where utility come from.

    I do this so that it may help others understand medical problems I have, but also highlight the useful websites or charities who produced the information.

    The reason for this is because I feel that many consultants don't have three times to explain things as you need them, so you are left to find your own way

    Thursday, 15 June 2017

    Excessive Daytime Sleep

    I feel very tired these days and it's unnerving to simply drop off to sleep without any warning, but this is happening on more and more occasions these days, which is embarrassing, if someone else is in the room.

    Some days I sit down after a slight walk and before I know what is happening, I have gone off to sleep and this does not make any sense at all

    I know that I don't sleep well at night for one reason or another, but when this hits it is a shock to all around, as I have even drifted off when people have been in the room, and that can be upsetting

    I have never experienced anything like this until the last year, and it's frightening and embarrassing when it happens

    Some days I can feel my eyes feeling as if they are being forcibly closed, and I cannot fight it or stop it
    We had put it down to other problems but nothing seemed to fit until I read a report from the Parkinson's UK website.

    I am not sure if anyone else has the same problems, but its well worth reading

    I am being assessed again next month, so its something that we need to bring up   

    I know that Lewy Body Dementia and Parkinson's are similar but after reading the clip below it all started to make sense to me

    Taken from the Parkinson's Web Site

    New research into fatigue and excessive daytime sleepiness in Parkinson's

    New research published in the European Journal of Neurology this week suggests that 72% of people with Parkinson's suffer from fatigue or excessive daytime sleepiness, with just under half of them suffering from both.
    This study highlights just how common sleep problems are in people with Parkinson's.
    The researchers at the University Hospital of Zurich in Switzerland studied 88 people with Parkinson's.
    They looked at how common fatigue and excessive daytime sleepiness are, if they overlap, and whether they are linked to other Parkinson's symptoms or medications.

    What the researchers found

    • 72% of people with Parkinson’s experience fatigue, excessive daytime sleepiness or both.
    • Fatigue was found in 52 (59%), excessive daytime sleepiness in 42 (48%), and both complaints in 31 (35%) patients.
    • Fatigued people with Parkinson's had more severe movement problems and were more likely to suffer from insomnia and depression.
    • Insomnia was also more common in people with excessive daytime sleepiness.
    • Medication seemed to play a greater part in excessive daytime sleepiness than fatigue - taking dopamine agonists plus levodopa appears to make excessive daytime sleepiness problems worse.

    Tackling sleep problems for people with Parkinson's

    Our Director of Research and Development, Dr Kieran Breen, comments:
    It's hard to explain just how overwhelming the tiredness is, it's as though every ounce of strength just pours out of my body.
    "This study highlights just how common sleep problems such as fatigue and excessive daytime sleepiness are in people with Parkinson's.
    "It's vital that healthcare professionals assess these symptoms because they often have a major impact on people's quality of life.
    "We still don't fully understand what causes sleep problems in Parkinson's.
    "But studies like Dr Roger Barker’s project 'Combating the sleep problems facing people with Parkinson's' funded by Parkinson's UK will hopefully lead to an improved understanding and better treatments."

    Wednesday, 14 June 2017

    Signed off from Chest Clinic

    To day "Tuesday" I returned to the chest clinic to see how things were progressing

    I have Bilateral Bronchiectasis, Emphysema, and a problem with a Chronic  Heamophilis Influenza bug,  which is embedded deep inside my lungs.

    While there is no way to remove the Heamopholis Influenza bug, the new tablets and inhaler seem to be keeping my lungs free from further infections which is good.

    So today I have been signed off from the chest clinic, and any future problems will be dealt with by the family doctor.

    While this is a good thing, I am left wondering if I will get a doctors appointment  of I ever need one.

    Last time we tried my wife was told that there would be a three week wait, so if things went wrong I would end up in hospital.

    I do have an emergency pack of antibiotics at home  just in case things go wrong, and I need to take them on holiday so that I am covered if I get another chest infection.

    I guess its all down to us keeping an eye on my chest problems, and hope that I remain free of chest infections for a bit longer, possibly until the winter time, when we know that they are bound to return again.

    I am now feeling positive about this now, so I am hopeful.

    Tuesday, 13 June 2017

    Shopping centres

    I confess that I struggle in modern town centres these days, but that is for many reasons.

    One of my main concerns are these very large statues or manikins which seem to get sprouting up all over the place

    I have been shocked at times when I have turned a corner and have come up to one of these enormous figures, which seem to come on all shapes sizes and colours.

    I confess that I don't understand why shops etc,  need these enormous figures because they are far too big to use as displays for clothing etc.

    They are more like things from outer space these days and thus dies not make any real sense at all.

    But I guess that I am not alone with this.

    There have been many occasions, when I have stopped somewhere in a clothing shop, and when I have turned,  I have been right next to one of these things, and then end up getting a shock.

    No one seems to have any idea as to why these things are unused at all because of the shear size.

    These statues can also be seen on the streets around town centres, and many people are spooked by these, but I guess thus happens when your brain is not working as it should do.

    I often have to look at things a few times to work out if they are real or imaginary which does not help, but that's all down to my illness, but I wonder how many others are troubled by these things these days

    Sunday, 11 June 2017

    New Guidlines for Lewy Body Dementia

    New international guidelines to identify dementia with Lewy bodies

    Published on: 8 June 2017

    From Newcastle University

    New guidelines have been published on the clinical and physical indicators to help ensure patients with dementia with Lewy bodies get an accurate diagnosis and the best care possible.

    Professor Ian McKeith
    Professor Ian McKeith
    The death of Hollywood actor Robin Williams in 2014 threw the condition into the spotlight as it was identified he struggled with the illness.

    Now scientists at Newcastle University have led an international team of experts to produce new recommendations to help diagnose the disease more accurately and improve management of the complex disorder.

    According to research published online today and in the July 4, 2017, issue of Neurology®, the medical journal of the American Academy of Neurology, the world leaders in their field highlight important clinical and diagnostic biomarkers, but call for more clinical trials into the illness.

    Pressing need to understand condition

    Ian McKeith, Professor of Old Age Psychiatry at Newcastle University’s Institute for Ageing, led the international dementia with Lewy bodies (DLB) consortium, which last reported on diagnosis and management of the illness in December 2005.

    Professor McKeith has been instrumental in leading this research over the past decade, which has been supported by the NIHR Newcastle Biomedical Research Centre, a partnership between Newcastle upon Tyne Hospitals NHS Foundation Trust and Newcastle University.

    The new recommendations were established by experts, including patients and care organisations and highlight the importance of detecting the disease early.

    Professor McKeith said: “There remains a pressing need to understand DLB, to develop and deliver clinical trials, and to help patients and carers worldwide inform themselves about their disease.
    “It is important that people are aware of the condition’s prognosis, best available treatments, ongoing research, and how to get adequate support.

    “Our guidelines now distinguish clearly between clinical features and diagnostic biomarkers, and give guidance about the best methods to establish and interpret these.
    “Without accurate diagnosis we can’t do the clinical trials that are needed to demonstrate a treatment that works.”

    Dementia with Lewy bodies

    DLB is a disorder that shares symptoms with both Alzheimer’s disease and Parkinson’s disease. It may account for 10% to 15% of all cases of dementia yet it is not sufficiently recognised.

    The new guidelines focus on clinical features, such as visual hallucinations, motor features of Parkinson’s disease, and rapid eye movement sleep behaviour disorder.

    Detailed information is also provided about the best biomarkers to use to help confirm a diagnosis when a patient presents with one or more clinical features.

    It is estimated that more than 100,000 people in the UK are affected by the illness, and over 5 million people worldwide.
    Professor McKeith said: “Newcastle has been at the forefront of DLB research since the late 1980s and we continue to be so as more and more is understood about the condition.”

    Future research will focus on family studies to find genes relating to DLB, on collecting biological samples from large population-based cohorts, and on developing a publicly available DLB genetic database.

    Jacqui Cannon, CEO of the Lewy Body Society, said: “It is so important that people receive a diagnosis of the correct subtype of dementia, only then will they receive the correct support, care and medication. This is particularly important for people living with DLB.”

    Devastating disease

    Marjorie, Harry and Debbie Ainscow
    Marjorie, Harry and Debbie Ainscow
    Debbie Ainscow knows first-hand the devastation that dementia with Lewy bodies can cause as her father lived with the condition for more than seven years before his death, aged just 79.

    Harry lived an active lifestyle, yet his illness turned him into a man who was unrecognisable as he suffered upsetting visual hallucinations, became incoherent at times, and was rigid in his movements.
    Mother-of-one Debbie, 48, of Boldon, South Tyneside, said: “I didn’t know anything about the condition until my dad received his diagnosis – it came as a shock and was devastating.

    “It was heartbreaking to see how the condition changed him. He would shuffle along and became very rigid in the way that he would walk and move.

    “It was very upsetting and challenging to see my dad’s dramatic change in personality and his aggressive behaviour, this was probably the hardest part.

    “At the time we didn’t know anything about DLB and it was difficult, especially for my mum, Marjorie, who was with him 24/7.

    “Had we had the ability to access guidelines like the ones published today it would have made a big difference and we would have felt less stressed because we’d have understood the condition better.

    “It is very important that patients and families know how the illness presents itself as this can help people develop coping strategies to get the best quality of life possible.

    “It is fantastic that Newcastle is leading the research into DLB and I am delighted to see that new recommendations of how to diagnose and manage the condition have been published.”


    Diagnosis and management of dementia with Lewy bodies
    Ian McKeith et al
    Neurology: doi 10.1212/WNL.0000000000004058 

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