Drug trial for DLB

Public Release: 24-Jan-2018

Drug may help those with dementia with Lewy bodies

May reduce movement symptoms without worsening psychiatric symptoms

American Academy of Neurology

MINNEAPOLIS - New help may be on the way for people with dementia with Lewy bodies, which is the second most common neurodegenerative type of dementia after Alzheimer's disease.

The disease can cause movement problems and issues such as hallucinations in addition to thinking and memory problems. But the drug used to treat the movement problems can also exacerbate the hallucinations, delusions and other psychiatric problems.

In a new study published in the January 24, 2018, online issue of Neurology®, the medical journal of the American Academy of Neurology, researchers may have found some help from an old drug. They found that a drug used to treat seizures may effectively treat the movement symptoms in people with dementia with Lewy bodies without causing additional psychiatric symptoms when combined with the Parkinson's drug levodopa.

Dementia with Lewy bodies can include movement problems like stiffness, tremor and shuffling of feet. Because it has many symptoms in common with Alzheimer's and Parkinson's diseases, it can be difficult to diagnose and treat. A drug commonly used to treat movement symptoms in Parkinson's, levodopa, may worsen psychiatric symptoms in those with dementia with Lewy bodies, especially when higher doses are given as the effects of levodopa start to wane.

"We found that adding zonisamide to the current dose of levodopa was safe and improved movement symptoms in those with dementia with Lewy bodies without magnifying hallucinations, delusions or agitation," said study author Miho Murata, MD, PhD, of the National Center of Neurology and Psychiatry in Tokyo, Japan.

For the study, researchers followed 158 people diagnosed with early dementia with Lewy bodies who had been living with the disease for an average of one-and-a-half years. Participants were given either placebo, 25 milligrams of zonisamide daily or 50 milligrams of zonisamide daily. This was in addition to already taking other medications for the disease.

Their movement symptoms were measured as were their thinking abilities, behavior and psychological symptoms. At the beginning of the study, the participants had an average score of 32 on the movement test, on a scale of zero to 108.

Researchers found that after 12 weeks, those taking 50 milligrams a day of zonisamide in conjunction with levodopa had improved more than four points on the movement scale compared to those who took a placebo. Researchers found no worsening of the psychological symptoms.

"There is an urgent need for new treatments for dementia with Lewy bodies," said Linda A. Hershey, MD, PhD, of the University of Oklahoma Health Sciences Center in Oklahoma City, Okla., and Fellow of the American Academy of Neurology, who authored an editorial on this study. "The successful execution of this trial is a major accomplishment, which provides evidence that future trials are warranted."

One limitation of the study was the small number of participants. More studies are needed to investigate the effectiveness of zonisamide in larger populations.

The study was supported by Sumitomo Dainippon Pharma Co., Ltd, the maker of zonisamide.
To learn more about dementia, visit http://www.aan.com/patients.

The American Academy of Neurology is the world's largest association of neurologists and neuroscience professionals, with over 34,000 members. The AAN is dedicated to promoting the highest quality patient-centered neurologic care

. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer's disease, stroke, migraine, multiple sclerosis, concussion, Parkinson's disease and epilepsy.

For more information about the American Academy of Neurology, visit http://www.aan.com or find us on Facebook, Twitter, Google+, LinkedIn and YouTube.

Disclaimer: AAAS and EurekAlert! are not responsible for the accuracy of news releases posted to EurekAlert! by contributing institutions or for the use of any information through the EurekAlert system.

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Renee Tessman
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612-928-6137

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What is Bradykinesia

When this term "Bradykinesia" first came up on my hospital notes, I confess that I had no real idea what it meant as it was not discussed. I thought that I was just becoming more clumsy at times and left it at that.

This left me struggling to understand just what was going on inside my brain for some time, but after reading this article , from https://www.verywell.com/bradykinesia-2612077. it is all starting to make more sense now. 

  What is Bradykinesia in Parkinson's Disease?

Slowed Movement That Affects Both Fine and Gross Motor Control

By Patrick McNamara, PhD | Reviewed by Claudia Chaves, MD

Updated June 07, 2017

Bradykinesia refers to slowness of movement. It's one of the three characteristic symptoms of Parkinson's disease (tremor and rigidity are the other two). In other words, bradykinesia occurs in everyone who has Parkinson's.

This slowness of movement is most obvious when a person with Parkinson's is starting or performing activities that require several successive steps. These can include all kinds of activities of daily life like getting dressed, making a sandwich, or getting to a  doctor’s appointment.

Tasks requiring fine motor control (buttoning a shirt or using utensils, for example) are particularly slow for someone with bradykinesia from Parkinson's disease, and reaction times are much slower, as well.

Bradykinesia also can cause someone with Parkinson's to shuffle more than walk, and  to use slow, short steps. Finally, this problem may lead to soft speech that's difficult for others to understand.

Testing for Bradykinesia in Parkinson's Disease

When your doctor tests for the presence of bradykinesia, she will ask you to perform rapid, repetitive, alternating movements of the hand (such as moving your palms up and down, finger taps, and hand grips).

People who have bradykinesia generally can't move quickly.

The slowness of movement can manifest in gestures, in speech, and even in how often or how quickly you can blink your eyes.

Sometimes, bradykinesia is subtle in a person with Parkinson's disease, especially in the early stages of the condition.

To detect it, doctors look for hesitation before the person starts to move, and for reduced arm movements while walking.

What Does Bradykinesia Feel Like?

When you have bradykinesia due to Parkinson's disease, you may feel like your body isn't obeying your brain's commands, at least immediately (the way it used to do).

You may also feel as if your arms and legs are weak, because they won't do what you want them to do, or your limbs may ache as you try to perform tasks that involve repetitive motion, such as walking.

In some people with advanced Parkinson's disease, bradykinesia leads to a sensation of their feet being stuck to the floor, because they feel as if they're unable to get them moving. It may be possible to break this pattern through therapy that encourages you to perform such tasks as marching in place and stepping over imaginary lines.

You may also have trouble writing, and notice that your handwriting is getting smaller and slanting upwards to the right. This is a symptom called micrographia, and it's related to bradykinesia in Parkinson's disease.

Your emotional state may also affect your bradykinesia but in a beneficial way.

 For example, even if you cannot move due to your Parkinson's, if someone shouts “fire!” you may be able to get up and run fast. This is called "kinesia paradoxica."

 Fortunately, Parkinson's disease does not destroy the programs in your brain that allow you to react this way in an emergency.

A Word From Verywell

Although Parkinson's disease can't be cured, medications and other therapies can help manage the symptoms, including bradykinesia.

If you're having trouble accomplishing tasks in daily life because of your Parkinson's disease, talk to your doctor about treatments that might help stabilize or even improve your symptoms.

Sources:

Frontera, Walter R., J. K. Silver, and Thomas D. Rizzo. Essentials of Physical Medicine

and Rehabilitation: Musculoskeletal Disorders, Pain, and Rehabilitation. Philadelphia, PA:

 Saunders/Elsevier, 2008. Print.

Gazewood JD, Richards DR, Clebak K. Parkinson Disease: An Update. Am Fam Physician. 

2013 Feb 15;87(4):267-73.

Social care

Over the years we have seen  Social Care being cut back more and more due to savage government cuts.

However it amazes me that no one in authority has stood up and said anything constructive

I would have thought that social care is far more important than HS2,  which in many people views , is actually waste of public money, but obviously the wealthy of this country think otherwise

When we look at the House of Lords with all of it's Bishops  etc, I do wonder why they alone have not stood up to be counted.  

They are supposed to look after the people in the land, yet they turn their noses up and do nothing.

However it's not just the Bishops, it's down to the Government who have cut the services down to the bare minimum,  while enjoying a healthy life style

In all honesty I don't think I can ever remember so many religious people in a Government, yet they simply don't care about anyone or anything but them selves

How can these people including the Prime Minister, dare to go into a church every Sunday as if there is nothing wrong. "These people cannot possibly know or understand the meaning of religion"

I honestly think that this country is now,  in a worse position than it's ever been since the 2nd world war, yet these people cannot see what they are doing.

There are thousands of people using food banks, along with thousands living and sleeping on the streets each night, all of who should have been picked up by social care. So many people living on the bread line that this really does not make any sense at all.

I would have thought that they would have moved social care into the NHS,  before now because councils cannot afford to run the service and  thousands are suffering as a consequence of this

I would have thought that social care was a legal right, but obviously many of our politicians think the opposite

Some claim that the NHS  could not possibly carry the social care side of life. 

But if we are honest about all of this, the NHS,  is to big, with far too many quangos hidden inside it.

The last Lady Tory Prime minister Margaret Thatcher  got rid of these quangos, but they are back.

To many people these days think that the NHS are doctors surgeries and hospitals?

When in fact it takes in lots of areas, from research to thousands of people working in office blocks around the country, for the Department of  Health, and also the  NHS in all of it's different variations. 

The NHS could cope with social care, if the services were run properly and people like the weekend drunkards were charged for their treatment and services. 

Millions of pounds are wasted every year on people abusing the system, and it's time things changed, to allow treatment to go to those up in real need.

I am sure that if the NHS was running social care, they could have care homes built in so that this people needing care at home could be moved out of hospitals, thereby freeing up beds. This all makes sense to me, but I am not a  politician

Let us hope things change soon and for the best 

Drop foot

Over the last few years I have struggled to cope with something called drop foot  which is partially linked to Parkinson's disease.

I have no real idea what caused all of this in the first place, and had wondered if it was something to do with my lower back and hip problems,  but no one seems to know

This has caused me to trip at times, because this foot cannot always clear the ground, so I catch it on uneven footpaths and stairs etc, which can be embarrassing

I have spoken to the physiotherapist department in s few occasions about this problem, but was merely told to carry on doing exercises, in the hope that the muscles will get stronger

However on Tuesday  I was given a trial of an OSSUR Foot / Ankle Brace, which it is hoped will help me get over this problem.

This was ordered at the last balance clinic in November, but arrived last week, so an appointment was arranged for Tuesday, so that I could  get it fitted for the trial

After this we went into Newcastle for around 3 hours, and the difference was amazing

I found that I could walk without having to watch the ground all of the time. It was strange to feel my ankle being held up in one position, but at least it worked.

We were concerned about the fact that this may have an effect in my ankles,  as they tend to swell up at times, but the physiotherapist said that this should not happen.

Once we got home it was removed to check thing's over, but all was well.  We had been told that I was to wear it for a few hours a day, until I was happy with it.

Later on in the afternoon and evening,  I started having problems with my foot, knee and hip, which were very sore. But as my wife pointed out, the Brace is straightening up my foot which in turn is having a knock in effect on my hip etc.

So I guess it's going to take time getting used to the effects of  wearing this. But I am sure that if it makes life easier, then its all we worth it 

Falls and Freezing

December 2017

Over the last few years I have had many minor accidents and many near misses, due to brain problems.

I know that I am not alone with this problem because many others with neurological llnesses have the same, or very similar  problems

However I do wonder how much is known about these problems, by the professionals like physiotherapists and occupational therapists.

While they are true professionals,  I guess their knowledge may be limited when it comes to certain neurological illnesses.

After seeing people at the movement clinic, it annoyed me because they always say the same things without thinking about it. While some people are helpful, I do wonder about others.

I sometimes go light headed when standing up after being sat down for a while. Their answer as usual, is to take it slowly, stand up slowly and then gradually turn or move off.

But if you wake up from a snooze and need to go to the bathroom, the last thing in your mind is to rise slowly. It's the same when someone comes to the door or the phone rings, you just want to get there without thinking about anything else.

My memory simply does not cope with remembering to do things slowly, because I either don't remember to do it, or I am in a hurry.

I guess it's the same thing when I am writing on my computer, because my brain is trying to go much faster than my fingers, so I miss words out of a sentence,  without even noticing until I check it much later

One problem I have at home, is that when I am washing up in the kitchen,  I some times turn to walk away, which is quite normal, if that is your brain is normal.

But in my case I have this problem where my body moves, but my feet stay firmly fixed to the spot, "Freezing"  so it's a case of grabbing something or facing the floor or anything else which gets in the way.

When I was working I heard about an alcoholic drink which used to give people the idea, that they were sober until they tried to move. Needless to say their bodies moved,  but their feet stayed firmly welded to the floor.

I had no idea what this drink was, and had no intention of trying it, because I can get the same effect without having a drink these days.

I gather this "Freezing" thing is part of Parkinson's disease, which may be the case, but it's embarrassing when it happens as well as distressing

While I can understand that these physotherapists and other experts are trying to be helpful, I do wonder if they really understand what we are going through.

Trying to live a normal life, doing things around the house etc, is my way of being helpful while remaining active. 

However there comes a time when I just don't want to do anything because of musjudging things.

Even washing up can be a nightmare at times, because I often misjudged distances between the basin taps and the items in my hands, so things get damaged or broken.

It's not even a ploy to get out of washing up, because I like to keep active in any way I can, but there  are days when I will not wash a drinking glass up just in case I break it, and I have done this on many occasions

I tried to explain recently that I some times misjudged things like the  curb at the edge of footpaths. But this is all coupled to the fact that I cannot judge things like speeds or distances anymore, and this can lead to me being dragged back by my wife who is more switched on. 

Furniture in our house has been set out so that I can grab something if I am going to fall, or if I get up too fast, but the brain does not always recognise these things at times.

I also have a habit of missing a door opening at times and bump into the door frame or the door, ending up being bruised. Here again I find this to be a nightmare,  if I need to get up during the night.

I know where I am going, but I think my brain sends me in a straight line, but forgets about the obstructions which are in the way.

It's embarrassing enough when it happens at home, but when I am else where  it feels much worse because people tend him think I am either on something or I am drunk.

I can understand how the police etc, misunderstand our actions, and think we may have been drinking,  but it does not really help us.

Dementia and Hope

Taken from an earlier Blog

When I was undergoing my first diagnosis in Oxford, and was still working, I never let my religious beliefs go.

I suppose I was hoping that my religion would keep me going, and would save me from whatever was coming.

At this time most, clergy prayed for those who were sick, or dying, and it was generally accepted, because these people were usually seriously ill, either at home in bed or in hospital. 

However, I remember reading notes in my old Office diary the other day, that I was at an Evening Service in Oxford and was staggered to hear the priest praying for me.  My wife said that I looked at her in disbelief, and perhaps shock, wondering why I was being prayed for, when I was in church.

I now understand that it is quite common, to pray for everyone who is ill these days, but I confess this did not help me at the time, and left me feeling very confused 

Originally, I had started going to this evening service because it was very quiet compared to the normal Sunday service, and easier to cope with, however by this stage I had forgotten how to say the Lord’s Prayer, and it took a lot of demanding work to bring it all back.

We eventually moved back to my family home in the North East, and we decided to return to my old church where we had been married and where I had been in the choir for over ten years. 

I then realised that the words I had learnt again, were totally different to those being said at the service. After going to a second service where they sang the Lord’s Prayer, I decided enough was enough, simply because I don't cope with constant changes.

By this stage, I simply could not read words and sing at the same time. 

I then found that the Church leaders, from Bishops to Clergy,  were not interested in people with memory problems, because we were told that if I was not happy I should attend the 8 am service on a Sunday morning.

At this point I had been struggling to sleep at night and had very graphic nightmares, which meant that I was just going to sleep at around 4-5am each day, but this was totally ignored by the church when it was mentioned.

Having spoken to a few elderly clergymen over the last few years, they are lost for words when I discuss this, but it sounds as if this is the way modern churches are going

While I struggle to cope with my religious beliefs these days, I can understand why people turn to turn back to religion, to keep them going, and I guess to help them understand meaning of life.

I guess it also gives them” Hope", that small word with a big meaning.

Hope can bring meaning into a person's life, and help them to face challenging times without despair.

Hope is future orientated and experiencing, and "Hope", provides the strength to cope with painful and stressful events, such as receiving a diagnosis of Dementia

Hope gives a person the will power to think a cure may come along, or medication may improve or stop their illness in its tracks.

Finding "Hope" is a means of coping with this illness, and what is happening in our lives, and Professionals need to be aware, that even when "Hope" is unrealistic people must find their own meaning to life

Although I am struggling to cope with my faith these days, I still have "Hope"

I know that even though I lose the ability to do some things, I "HOPE" to fight on, enjoying my family for a bit longer, and enjoying the hobbies I can still do without assistance.

I know that I will never be able to enjoy my faith in the same way as I used to do, because of the constant changes to services and prayers these days, but as one clergyman said recently, that’s the way things are moving in the Church of England and there is nothing anyone can do about it.

To me it feels as if the religious leaders in this country have turned their backs on those who are ill, and struggling with their faith. 

Many clergy say that it's a waste of time performing services in front of those who have memory problems or dementia, because they simply cannot take an active part. If only they took the time to think carefully.

I personally feel that this is the way clergy are trained these days, its not the best way, but with modern Bishops and modern ideas, things like people with dementia etc  are largely forgotten as a waste of effort. In other words the days of pastoral care and visits from clergy are long gone and confined to the history books 

Many people grew up with familiar types of service and forms of prayer, and do not cope with constant changes to services etc.  

Nor do they want to hear long winded sermons, which have no bearing on modern day life. As one elderly vicar once told me, it takes a lot of care and thought to do a sermon which means something these days, otherwise people simply give up all hope and drift off

So, we must all find our own way, and Hope we can carry on as best we can. 

Yes we lose so many hobby's and things we enjoy in life, but we have to adjust and move on, and I guess if that means losing touch with our religion, then so be it. Its not easy but we need to do want is best for us, and forget everything else.

Not a good start to the year

It's not been a good start to the year, but I am confident things will improve.

Along with memory and Chest problems, my old problem with Irritable Bowel Syndrome returned with a  vengence over Christmas and slightly spoilt our holiday.

I have had to change my diet,  because it's been obvious that things like Curries and Chillies, which I loved have now started to fight back, so these have had to be cut back. I can still manage a Chicken Korma but the rest have been confined to History.

Even chocolate seems to be having the wrong effect these days, and that's hard to accept.

So it's been quite since we got home after Christmas while we waited to see how things were going to pan out. It's now a case of trial and error as far as food is concerned,  which feels odd because I thought the IBS had settled down a few tears ago.

Over the last few years I got quite adventurous as far as food was concerned, but that has now stopped until we see what happens

I confess that this IBS  was quite embarrassing at times because of the loud  weired noises coming from my stomach, it's one thing at home, but in public I don't know where to put myself.

I already had a chest infection over Christmas, so this has made life even more interesting, because where ever we go I need to be watching for toilets.

However I am hopeful things will get sorted out very soon, and I can get back to normal again.

Abuse

After hearing in the News that a convicted rapist was being released back into the public domain again, I started to think of all of those abused by this evil monster.

He will be able to move on with a new life, while those he abused will struggle to move on with their lives, and may never get any relief from what happened.

The heart ache and trauma will live with them forever, and will be in the back of their minds for the rest of their lives. They will never really trust anyone, ever again.

Many people have been abused over the years, some as children, some abused in married life by their husband/wife, some in the armed forces and others in schools or care homes.

The military seem to get away with this by claiming, that its a way to toughen up recruits, but how can they get away with this sort of thing.

No matter what happens in life, there really is no excuse at all. I can only assume that by abusing others, you are in some way forcing them to give in, so you are in fact controlling them.

I think the lowest form of this is child abuse, either by a family member, or a friend of the family, a case where the child cannot speak up for themselves because no one will ever believe them.

Children are usually threatened by the abuser, telling them that they will be ruined for life if they are to speak out. Having been haunted by this for years until I met my wife, I can understand the horrors others struggle with in a daily basis, and it never goes away.

Like others I had no one to talk to, because the person was a close family friend and no one would have believed me.

How many times has it been claimed, that the abuser was someone in a high profile or public position, and therefore the officials and police closed ranks, and believed the abuser, before the abused person.

Jimmy Seville is a prime example of this, and yet for years neither the police or the BBC did anything about it, until he had died, by which time it was far too late to do anything.

It was later on that I learnt that my mother had been abused by her step mother when she was a young child, simply because mother was adored by her father, something her step mother was jealous of. In this case motheŕ was always being locked outside in a black dark coal house, which had rats running through it.

So I guess that to a 5 year old child this must have been terrifying She often said that she hated the dark after this, because the memories of those horrors came back to her.

But abuse seems to to be happening more these days, and it's made much worse by the fact that the media use it as a good story, to grab headlines, and this makes me sick.

Other people who were abused as children, have often complained to the independent press association, but nothing ever happens.

However this abuse often happens in institutions like schools, and even religious bodies are not immune from it, because in many cases they simply hid it from the public, and in some cases destroyed the evidence.

When a religious body like the Catholic Church, or Church of England do this, it shows just how much contempt they have for those poor individuals who were abused while in their care.

There really is no excuse for abuse of any kind in this day and age, and it should be outlawed.