Wednesday 10 July 2013

Alzheimer's Disease - Is there likely to be a cure in the near future?





Alzheimer's disease was first described in 1906. In the century since then, scientists have made some strides in trying to understand how Alzheimer's affects the brain and are striving  to make life better for affected individuals and families. But is it enough? As a sufferer of this insidious disease,I have a vested interest in discovering the truth in the current evolution of treatment for it and if that outcome will be positive for myself and fellow sufferers in what time we have left.
A worldwide quest is currently under way to find new treatments to stop, slow or even prevent Alzheimer's. Because new drugs take years to produce from concept to market—and because drugs that seem promising in early-stage studies may not work as hoped in large-scale trials—it is critical that Alzheimer's and related dementias research continue to accelerate. To ensure that the effort to find better treatments receives the focus it deserves.  Researchers are looking for new ways to treat Alzheimer's. Current drugs help mask the symptoms of Alzheimer's, but do not treat the underlying disease. A breakthrough Alzheimer's drug would hopefully treat the underlying disease and stop or delay the cell damage that eventually leads to the worsening of symptoms. There are several promising drugs in development and testing, but we need more volunteers to complete clinical trials of those drugs and increased funding of research to ensure that fresh ideas continue to fill the pipeline.
What if we could diagnose Alzheimer's before symptoms started? The hope is, future treatments could then target the disease in its earliest stages, before irreversible brain damage or mental decline has occurred. Research on new strategies for earlier diagnosis is among the most active areas in Alzheimer's science.We're about to find out if there will be a way soon to slow the course of Alzheimer's disease. It is hoped that positive results are due soon from  studies of drugs that aim to clear the sticky plaque gumming up patients' brains.

Can Alzheimer's be prevented? It's a question that continues to intrigue researchers and fuel new investigations. There are no clear cut answers yet — partially due to the need for more large-scale studies — but promising research is under way. The various fragmented Alzheimer's researchers continue to carry out studies exploring the influence of mental fitness, physical fitness, diet and the environment. As the number of people affected by Alzheimer's rises, the effort to find prevention strategies continues to gain some momentum in several different countries.However the reality is after more than a decade plus of failed efforts to develop a drug to halt the mind-robbing disease we appear to be static. Medicines such as Aricept only give temporary ease  of the symptoms. There is no known cure. Experts say that if new treatments continue to fail, drug companies may pull out of the the hunt for a cure in frustration, leaving little hope for the millions of people with the disease.

 An estimated 35 million people worldwide have dementia, which includes Alzheimer's.Why oh why? can we not have a more systematic and co-ordinated International approach to finding a cure? Instead of the many different individual companies, groups,charities,organisations all trying to achieve the same goal,but in an inefficient fragmented fashion for different reasons? If such a project could be funded and administered under a single International umbrella with truly global membership,I firmly believe that we would see a cure much sooner. Or is such a proposal too mind blowingly simple?

Friday 28 June 2013

Someone to watch over me.






Even though I am terminally ill, I consider myself very fortunate to have my wife caring for me.
Her selfless dedication moved up a gear immediately following my Alzheimer diagnosis. Not once has she been overwhelmed or shown any self pity for inheriting the awful sentence of ongoing self sacrifice  and drudgery brought about through my illness. Nether does she have any illusions of what lies ahead for both of us, as I continue my journey.
There are many other Alzheimer Pilgrims in similar situations throughout the world, all reliant on personal care from guardian angels. All striving to give love, support, comfort and solace to their charges. Without these men, women,carers and family members, our quality of life would  be completely intolerable. We the victims of this dreaded disease salute you all.
I dedicate this humble verse to all of the guardian angels.


'Someone to watch over me.'

'Reality ceased when told my brain was dying,
fear and dread joined in partnership to replace hope and optimism,
all thoughts of future happiness came crashing,
the foggy curtain of mixed emotions denies the scale most awesome,
selfish thoughts do conspire to survive these events most daunting,
I look to gather armour and support from within the caring familial sanctum,
the all encompassing and reassuring comfort of having,
Someone to watch over me.'

Sunday 23 June 2013

"Down Memory Lane"



This stunning surrealist painting inspired me to write another poem.



"Down Memory Lane"

This dreaded malady robbing precious glimpses of times and things past,
my prognosis of Alzheimer's dictating what the fates cast,
the clinging to ghostly reflections and experiences of the cerebral process, 
inspires me to wage war on my new enemies time and aimlessness,
thoughts pervade the eroding cognitive operation to seek sanctuary,
by walking the path down memory lane to times more happy. 

nostalgia swells within my being offering backward glimpses worth seeing,
safer times offer comfort to the Pilgrim entering this wondrous place of healing,
memories coming thick and fast will they stay will they last,
anxieties,irritation and stress momentarily exorcised in this oasis of the past,
to stay and take refuge from the crafty evil MrAlzheimer, 
to keep walking the path down memory lane to times more happier.

Saturday 22 June 2013

Friday 21 June 2013

"The Garden"



I love gardens, particularly my own! Having mobility problems I tend to take advantage of any good weather and camp outside in a favourite seat. Often smoking my beloved pipe in contemplation, I am instantly transported to an oasis of calm.
Recently I started dabbling in Poetry, having decided to jump in and have a go. I was moved to write another , number two.This one was inspired by my garden, I trust that it is not to terrible!



"The Garden"

In the beginning Eden was the first,
born of contrived partnership with nature,
to be eternally nursed,
bringing seem-less order from chaos,
man and nature combine to emboss,
from a floral palette making less duller
bringing a kaleidoscope of colour,
painful thoughts and worries absorbed by beauty,
quiet contemplation gives birth to peace and tranquility,
birdsong enhancing the ambient choir of insect sound,
defies the impression of being here earthbound,
so easy to see this sanctuary of natural and sensory delights,
compelling the Pilgrim to memorise a feast of reflective insights.

My Alzheimer's and Inspirational stimuli - Music appreciation.




It has long been known by health professionals, that the use of music in it's various forms can enhance the quality of life for dementia patients. Particularly for those in the later stages of the disease.

I have always enjoyed listening to music. There are many types that are easily categorised such as popular,classic,jazz,country,folk,rock,reggae etc.It is easy to see how it can interrelate with people's memories in regard to personal events,time and place.
Going through the decades which I have known,there are certain popular tunes and melodies that evoke a smile of recognition each time I hear them.

Even as a child of the 1940's,I remember well the recognisable tunes of that era such as Glen Miller's "Moonlight Serenade",Vera Lynn "The White Cliffs of Dover",Bing Crosby and the Andrews sisters"Don't fence me in",Bing Crosby and "White Christmas",Edith Piaf La Vien Rose.
The 1950's brought Nat King Cole and "Mona Lisa", Fat's Domino "On Blueberry Hill", Patii Page "The Tennesee Waltz",Elvis Presley "Jailhouse Rock",Bill Haley and The Comets "Rock around the Clock".
In the 1960's popular music really took off with,Chubby Checker "The Twist",Elvis Presley "It's Now or Never",Neil Sedaka "Calendar Girl",The Shadows "Apache",the Beatles "Love Me Do".

1970's brought Simon and Garfunkel and "Bridge over troubled water",the Beatles and "Let it Be", the Jackson 5 "ABC",the Carpenters "Close to You", Free and "Alright Now",the Hollies and "He ain't heavy he's my brother",Anne Murray"Snowbird".
1980's we had Phil Collins "In the air tonight",Huey Lewis "The Power of Love",the Buggles "Video killed the radio star",Survivor "Eye of the Tiger", Billy Ocean "When the going gets tough", Toto and "Africa".
1990's brought Madonna "Vogue",MC Hammer "U can't touch this",Sinead O'Connor "Nothing compares to you",Gloria Estefan "Here we are",Bette Midler "From a Distance".

With the commencement of the new millennium my musical tastes mellowed somewhat and I began to enjoy the easier more relaxing listening of Jazz and Classical pieces. Having a brief flirtation with Jazz giants such as Ella Fitzgerald, Sarah Vaughan,Louise Armstrong,Dizzy Gillespie,Duke Ellington and the incomparable Miles Davis.

New technology has meant that we can carry hundreds of our favourite pieces in small MP3 players such as iPods. Linked to these by light, discreet headphones. Even at this stage of my illness I am still able to maximise this technology and hope to do so for some time to come.

My ideal treatment, weather permitting is peaceful contemplation, sitting in the garden on a warm summer's day, with a glass of wine, listening to some soothing classical gems, such as Vaughn Williams "The Lark Arising", or Debussy's "Clair De Lune", Beethoven's "Moonlight Sonata" or the serene Chopin "Nocturnes", any of these beautiful pieces will  set the mood to calm and smooth any anxieties.



The beauty of music being used in the fight against dementia is not the type or choice of content but the effect that it has on individuals in taking them to a place of sanctuary in their turbulent minds.



Wednesday 19 June 2013

My Alzheimer's and Inspirational stimuli - Visual Art appreciation.





Visual art can provide meaning to what many with dementia experience as an ever increasingly meaningless life. In my opinion, art connects people to their culture and to their community. It gives meaning to life after diagnosis and it's meaning and stimulus that people living with Alzheimer's like me so dearly crave. I enjoy the simple visual pleasure of art appreciation, having failed miserably due to arthritis, at the physical taking part by trying to improve my practical skills of sketching and painting. 

As a child I used to frequent the local Museum's and Art Galleries at week-ends.We were very fortunate in that the City where we lived, had a marvellous inherited collection of world famous works.Viewing these collections sowed the seeds of my appreciation,I was in awe of the beauty and craft that was on show.One painting in particular had a profound effect on me as a child,I never tired of standing, sometimes for long periods of time and being lost in that painting. It was Salvador Dali's 'The Christ of St John of the Cross'. As a child of seven the religious significance of the picture was lost to me, it was purely the realistic panoramic effect of a man suspended in the sky overlooking the world.Magical.



Since my diagnosis I have taken advantage of the new computer technology of the Internet and it's potential for viewing wonderful pieces of art from all over the world. I appreciate that the ambience of a museum or gallery is missing when surfing art examples on the web. However there are myriad styles to help stimulate the mind's various moods and emotions in the interpretation of the visual senses triggered. Art reveals to us the essence of things,the essence of our existence. I also find comfort in viewing certain art works.Many I find calming when I am feeling agitated,afraid or anxious. I find it very theraputic and hope that I can continue to benefit from these marvellous visual experiences,even into the latter stages of my inevitable cognitive decline .

Monday 17 June 2013

"Think of me my friends, forget me not"



Over the years I have enjoyed reading poetry but have never really got up the courage to attempt having a go, until now! I humbly submit my first attempt, it is called "Think of me my friends, forget me not". The inspiration was from my wife's garden and her beautiful little blue Myosotis flowers (Forget me not's) seemed appropriate! I hope the Blog followers enjoy it.



"Think of me my friends, forget me not"

Forget me not when I am dead and gone,
having lived my life, loved laughed and won,
with these words the years  flew by,
laugh with me, forget me not,
now with Alzheimer's I will pass by,
having lived, loved laughed and won,
always remember my friends, forget me not.

the final appointment with death one day soon,
my pain and terror thankfully vanquished forever,
forget me not when I am dead and long gone,
demented stigma no longer cast,
having gratefully lived,loved laughed and won,
now at peace with my mortality at long last,
think of me my friends and forget me not.

Saturday 15 June 2013

The Pilgrim's progress





The Pilgrim's progress - from this world
         to that which is to come.

The first few weeks after my diagnosis, the emotional impact of having been told that I had Alzheimer’s disease, was so powerful for me that it became the main focus of my life. I took the decision that my previous lifestyle and expectation was now gone and that It now required a complete re-evaluation.

I have previously referred to this disease as “the long good-bye,” during which a person with Alzheimer’s gradually moves away toward a land into which friends and family cannot follow. 

This now leads me to speculate on my own personal beliefs on mortality and the essence of spirituality, having previously held an agnostic viewpoint on religion and faith.That is not to say that I never stopped wondering and tended to keep an open mind.The unknown invites you to question and search for the meaning of life, in the past, present and future.When we are seriously ill, we tend to get caught up in statistics and averages; How soon will the illness progress? How long do I have left? These can be helpful to know, but they don’t always provide spiritual and emotional comfort.

Since my confirmed diagnoses I find as I look inward that I am starting to re-evaluate my position. I suspect that this is a natural reaction when faced with one's own mortality when it comes into focus. Discovering that you are dying naturally makes you take inventory of your life. You have a right to have questions, fears and hopes. Illness establishes new directions and often causes some questioning of old directions. New thoughts, feelings and action patterns will emerge. 

These are the kind of things we might discuss with one another at any time, any day, as we live our lives, but most of us don’t; it’s almost taboo,  at least among men. So often we wait until the person is close to death or, more often, perhaps, until the memorial service, before we dare articulate these human feelings and the possibility of spiritual belief for comfort. Even with the certainty that you will die from this illness, you can find hope in your tomorrows, your next visit from someone loved, your spirituality. At bottom, hope means finding meaning in life, whether that life will last five more days, five more months or five years.If faith is part of your life, express it in ways that seem appropriate to you. You may find comfort and hope in reading spiritual texts, attending religious services or prayingIt must be comforting  to be around people who can understand and support your religious and spiritual beliefs. Comforting to find someone to talk to who won’t be critical of whatever thoughts and feelings you need to explore.you don’t have to depend on anyone else. But confronting a terminal illness cannot and should not be done alone. As difficult as it may be,I believe that we must reach out to our fellow human beings. Most of us know whom we feel comfortable turning to when we are under stress. I would dearly love to have a spiritual mentor to help me face what I know is ahead,however the reality is I have never attended any church or religious groups in my later years.

I remember well some years back, visiting a Benedictine Priory on a day visit. It left a very lasting impression on me which made me start to question my own beliefs.The place was an amazing mixture of calm, peace and strong vibes of love and understanding. In complete contrast to the modernity which surrounded it. I have often thought of going into a retreat there to try and come to terms with my inner thoughts. As an Alzheimer's Pilgrim I am now on a personal spiritual journey to help me find an inner peace to arm me for the battle ahead.I realise that perception and failing mental abilities will impact on  
these preparations, however I will fight this to the end.
Whatever I do, I will not isolate myself and withdraw from the people that love me.




Friday 14 June 2013

Evolution





People with Alzheimer's may have personality changes, such as poor impulse control and judgment, distrust, increased stubbornness, and restlessness.
I have undergone all of the above in the last year or so.
Impulsive behaviour and poor judgement has resulted in my wife taking control of my finances and in particular my credit cards. I have had to curtail impulse buying on line as I have been told that it was becoming obsessive.One good thing to come of it is that my very good friend the postman, now has a quieter time, with far fewer deliveries of strange large parcels and packages !!
I was starting to mistrust my wife with my allowances and pension money.As she explained to me she was not diverting it to buy new shoes and clothing for herself. Anyway none of it would have fitted me !! I am now on a par with Royalty in  that I do not carry any money on my person now!
Each week my wife takes me and a family friend,who  also happens to be an Alzheimer Pilgrim,out for trips in the car. These journeys are tailored to our special needs for distance ,feeding stops and toilet facilities. Which in my case can be a frequent and necessary requirement!! On one of these outings my wife had decided to go somewhere different and necessitated a slightly longer journey.I took exception to this and ruined the day by being moody and expressing my anger by being out of my comfort zone of familiarity.
I find that I have a much shorter attention span and can become restless after 20 to 40 minutes of reading a book or typing on the computer. Even jumping between both activities ,which I now describe as Alzheimer multi tasking! a recipe for disaster in continuity!!
s.

Thursday 13 June 2013

A journey into darkness






A journey into darkness

Having been diagnosed with Alzheimer's, it is difficult not to think of what the next few years has in store for me in terms of my illness,particularly the later stages.

Alzheimer’s last stages of which are shrouded in mystery, each of us with this disease will be exploring an unknown wilderness.Ultimately,will I be able to tell others what the last stages are like?   I wonder whether I’ll be conscious toward the end when I appear to be completely out of it and, if not, what it will be like.We just don’t know.  

In trying to second guess what  my journey into the darkness might be like  might seem like a form of denial,soft-peddling the likelihood of future suffering for me and the people close to me.  I don’t believe I’m in denial, but even if I were, does that change the reality that this process will be some sort of adventure? 

Perhaps we don’t think of Alzheimer’s as an adventure because we want happy endings and believe that the word adventure applies only to successful adventures, where the hero faces enormous dangers and suffering but eventually returns to tell the exciting story.  But what if the hero does not return.  
It sounds strange, as well as trepidation, I can still sense an excitement.  Growing up, I relished exploring uncharted territory.  But each of us with this disease must explore it for the first time; each of us faces a unique adventure.Knowing that we will never return.

Tuesday 11 June 2013

Looking on the bright side of life




I honestly wish that my sense of humour stays with me to the end of life, I would miss it dearly should it fade, it shines a light that others fail to reach. It is both my sword and shield in fending off anxiety and depression.

I surf many blogs and forums of interest in attempting to expand my knowledge of this dreaded disease. Many personal to those with the disease are inspirational,others harrowing and indicative of individual experience of this accursed affliction of Dementia in it's various forms.
As someone with a diagnosis of Alzheimer’s disease, I can still identify with the joy that people feel in the sheer living experience and being involved with the day to day expectations of maximising it, despite cognitive decline due to the condition in it's various forms.
I recognise that while there is great sadness in losing one’s cognitive abilities, family members and caregivers can still share a wealth of love and moments of great joy and laughter with those people living with dementia.



I hope that our view of Alzheimer’s can through humour and laughter, shift from “the long goodbye” to “the long hello.”
These posts and their humorous content, are not intended to be flippant or disrespectful of the seriousness of the AD condition, but are intended to shine a light into the dark private places that can be depression and anxiety.
Providing occasions for humour, laughter, and the celebration of life, in my humble opinion is another weapon in our armament for helping to improve the quality of life for those who have the disease in it's various forms, including that of their carers and family.

Laughter and humour help you stay emotionally healthy.It makes you feel good. And the good feeling that you get when you laugh remains with you even after the laughter subsides. Humour helps you keep a positive, optimistic outlook through difficult situations, disappointments, and loss.
More than just a respite from sadness and pain, laughter gives you the courage and strength to find new sources of meaning and hope. Even in the most difficult of times, a laugh–or even simply a smile–can go a long way toward making you feel better. And laughter really is contagious—just hearing laughter primes your brain and readies you to smile and join in the fun.
Laughter dissolves distressing emotions.You cannot feel anxious,angry,or sad when you are laughing.It also reduces stress and increases energy,enabling you to stay focused and achieve more.
Humour shifts perspective,allowing you to see situations in a more realistic,less threatening light. A humorous perspective creates psychological distance,which can help you avoid feeling overwhelmed.

One essential characteristic that helps us laugh is not taking ourselves too seriously. We’ve all known the classic tight-jawed sourpuss who takes everything with deathly seriousness and never laughs at anything. No fun there!
Some events are clearly sad and not occasions for laughter. But most events in life don’t carry an overwhelming sense of either sadness or delight. They fall into the grey zone of ordinary life–giving you the choice to laugh or not.Having a good laugh with friends really does help us to deal with pain, suggests a new study. The international research team, led by Oxford University, found that when we laugh properly, as opposed to producing a polite titter, the physical exertion leaves us exhausted and thereby triggers the release of protective endorphins. These endorphins, one of the complex neuropeptide chemicals produced in the brain, manage pain and promote feelings of well being. According to the team’s research paper, published online in Proceedings of the Royal Society B, watching just 15 minutes of comedy with others increased the pain threshold by an average of about ten per cent.

"Sometimes I laugh so hard the tears run down my leg". 

Considering - 'To be or not to be'





I passionately believe that people who have a hugely debilitating and ultimately fatal illness should be able to make the decision to end their lives when they wish, rather than suffer. It is my life,it will be my death and it should be my decision.
Of course here in the UK, there needs to be some legal framework or regulations that can judge me to be of sound mind when I make this choice, and ensuring that I have not being coerced. 
While not an easy subject to discuss, Euthanasia and physician assisted suicide, it is a very important one in the face of a terrifying bleak outlook. It is my sincere hope that the Law will eventually change to accommodate people who are facing such situations,not just for their own sakes but also for the families and those who are caring for them.

Ethical problems of euthanasia
Does an individual who has no hope of recovery have the right to decide how and when to end their life?
Why euthanasia should be allowed
Those in favour of euthanasia argue that a civilised society should allow people to die in dignity and without pain, and should allow others to help them do so if they cannot manage it on their own.
They say that our bodies are our own, and we should be allowed to do what we want with them. So it's wrong to make anyone live longer than they want. In fact making people go on living when they don't want to violates their personal freedom and human rights.It's immoral, they say to force people to continue living in suffering and pain.
They add that as suicide is not a crime, euthanasia should not be a crime.
Why euthanasia should be forbidden
Religious opponents of euthanasia believe that life is given by God, and only God should decide when to end it.
Other opponents fear that if euthanasia was made legal, the laws regulating it would be abused, and people would be killed who didn't really want to die.

The legal position
Euthanasia is illegal in most countries, although doctors do sometimes carry out euthanasia even where it is illegal.
Euthanasia is illegal in Britain. To kill another person deliberately is murder or manslaughter, even if the other person asks you to kill them. Anyone doing so could potentially face 14 yearsin prison.
Under the 1961 Suicide Act, it is also a criminal offence in Britain, punishable by 14 years' imprisonment, to assist, aid or counsel somebody in relation to taking their own life.
Nevertheless, the authorities may decide not to prosecute in cases of euthanasia after taking into account the circumstances of the death.
In September 2009 the Director of Public Prosecutions was forced by an appeal to the House of Lords to make public the criteria that influence whether a person is prosecuted. The factors put a large emphasis on the suspect knowing the person who died and on the death being a one-off occurrence in order to avoid a prosecution.
(Legal position stated at September 2009)
Changing attitudes
The Times (24 January 2007) reported that, according to the 2007 British Social Attitudes survey, 80% of the public said they wanted the law changed to give terminally ill patients the right to die with a doctor's help.
In the same survey, 45% supported giving patients with non-terminal illnesses the option of euthanasia. "A majority" was opposed to relatives being involved in a patient's death.

Monday 10 June 2013

Alzheimer's - Whats it like to have it?.






With Alzheimer's on the increase with an ageing population, people want to know, what is it like to have dementia? 
I have been diagnosed for some time now and have been logging my illness progression while I can. At first I suspected that I might have it as there is a family history of it. I have now come to terms with my illness and accept that it is there and will get progressively worse over the coming years. It is my Karma and I just have to keep going for as long as I can without being too much of a burden to others. if you imagine your worst fears, you won't come close to what being diagnosed with Dementia can do to a person or the person you thought you knew!

No, there aren’t any of what you might call obvious symptoms. Dementia  just seems to slowly creep up on you without you realising it. I know in my own case I started to realise I had a problem when I was around 64 years old, having seen the same thing with my late father and mother, it was just like my mind was frozen in a fuzzy state and I noticed that I could not remember simple things like ,"what day of the week is it". I was starting to become anxious over minor things and issues. Whereas previously I considered myself to be a reasonably calm and collected person in any stressful situations.

The irony of it is, I do still realise that I have dementia and can still tell what its doing to me as a person.  Sometimes turning me into a person with a Jekyll and Hyde personality, yet before the illness I was one of the most calm of people, with a sound analytical and logical mind.

There is a reference list in use by health professionals, of the 7 so called stages of Alzheimer’s , but it doesn’t necessarily mean that every sufferer will fall neatly into these various stages as listed. Dementia seems to affect each individual in many different ways and at different stages of the illness progression. Tiredness, depression, and definitely irritability are all part and parcel of the illness, it's not just a case of simply 'getting older' or being forgetful.

At the present time with my own unique health conditions, I’d say that my physical condition and in particular, my mobility, has deteriorated faster than my mental condition. Sometimes when I go for my daily afternoon short walk, I feel as though I’m wading through thick mud.I also have osteoarthritis and require two sticks to aid walking, both hips having previously been replaced with mixed success. 

I battle with frustration everyday, particularly not being able to practice my once beloved profession, Horticulture(Gardening). That needed a lot of memory and physical coordination, these have now got lost within a labyrinth of other dementia problems.I now have to watch helplessly as my wife takes on an ever increasing role and does all of the regular ground maintenance work that I used to enjoy doing. My contribution to regular household chores is now at a minimum and increases my dependancy on my wife,who has had to 'double up' on many things in the past year or so. 



With dementia I also have occasional speech problems, that can manifest itself at any time during my illnesses progression. In company of others, someone may ask me a question, but when I go to reply, the mind and voice becomes frozen and all that comes out is gibberish. Yes the words of a reply are within me but they won't come out,which then makes me even more frustrated and bewildered and I can often end up in tears, but that’s what dementia does to a person. Sometimes when I sit at the computer with intentions of typing, I end up just staring at the monitor screen, as any form of communication has got lost in my minds maze of bewilderment. 
Holding 'normal' conversations with my wife has started to become problematic,with her occasionally losing her patience with me requiring information to be repeated.  

When my illness was first diagnosed and confirmed by the health professionals, I agreed to start a course of the drug Aricept. I knew from discussion, that this was not a cure, but that early research had shown that in a small percentage of patients who were diagnosed in the early stages of the illness, that it could delay further deterioration of the brain cells by a couple of years. From the beginning of the course of these drugs I had a really bad adverse reaction and eventually had to cease taking them altogether.
Sudden noises of any type can cause me anxiety and I end up trembling.  It can be from the daily noise from people shouting, children crying, or even the passing traffic.
Being a passenger in a Car that is being driven in a less than smooth fashion can make me very anxious. I have also now become insecure when on occasion I am left alone,answering the front door and telephones can be very problematic. You could say at times scared of my own shadow and I seem to see plenty of shadows and images that really aren’t there, and night times can be horrific from the  nightmares that have me lashing out my arms and legs in my sleep.



Well, that gives you just a brief look into my daily dementia mind. First thing this morning  I was having a bad cloudy day full of doom and gloom, but I have to try and keep fighting this illness no matter how hard and stressful it becomes, knowing that if I give in, then the dementia sneaks in further through the back door of the mind.


Without a doubt dementia is one of the most insidious of illnesses, yet I still say I’m far better off both materially and health wise, than many others in this world. Mainly through the constant care and support of my wonderful wife and family. My guardian angels.



Sunday 9 June 2013

Am I proud of how I have lived?





Am I proud of how I have lived ?
If you don’t express the passion inside you – the ideas and deeds that make you feel alive – you will die one moment at a time without ever having lived.
Don’t be scared of death.  Be scared of leaving too much of your life un-lived.  Be scared of leading a tedious daily existence that doesn’t empower you to be your best self.  A fear of death is simply a fear that you haven’t yet accomplished what you were born to do.  When you live a fulfilling life that’s abundant in meaning the thought of dying becomes less worrisome, because your mind isn’t focused on it.  Instead, it’s consumed with living passionately in the present moment and embracing all the beauty that life has to offer.
Someday inevitability will take place and your life will flash before your eyes.  Make sure it’s a spectacle worth watching – one you’re proud to have been a part of.  
Some of the best discoveries in life come when you least expect them, in places you never even thought to look.  What you were not looking for can end up being more than you ever hoped to find.  So seek your goals and dreams diligently, but do not become so obsessed that you develop tunnel vision.  Do not blind yourself from all the unpredictable wonders and opportunities passing in your periphery.
Life’s greatest beauty is found in its surprises.  Its dynamic nature continually renews the possibilities before you; you honestly never can be certain when the next gust of wind will arrive and what it will blow in your direction.  Open yourself to these surprises.  Many of them will bring goodness you never knew you were missing.
Remember, you are never too old, too young, too busy, or too educated to find value and joy in new, unexpected opportunities.  So stay on the lookout, because with each step down the road of life you take, a fresh supply arrives.
Everything in life is gamble.  It’s either a daring, rewarding venture, or nothing at all.  You never know beforehand what you are capable of; you have to wait, practice and give it time.

It’s time and experience that controls your eventual destiny.  Time is like the deck of cards the dealer at a casino is pulling from; it holds all the possibilities.  When you sit down at the table, you can’t control the cards you are dealt, but you can control how you play each hand.  The more hands you play, the more experienced you get at playing the game.
You shouldn’t bet the farm, but you shouldn’t be overly conservative either.  Your bets are just learning experiments.  The more experiments you make, the better. 
Not every event in your life is your fault, but they are all your responsibility.  A combination of your decisions and external factors for which you had no control brought you to where you are in the world today.  Negatively blaming yourself, someone else, or some other force will change nothing.  Positively taking full responsibility for your situation and your path forward can change everything.
 As you diligently give yourself to the present moment.  In this moment is every possibility you seek.  Take responsibility for it, and bring these possibilities to life.
Every worthwhile goal requires a struggle to get there.  If your actions don’t take effort, you won’t make progress.  Wanting success without sacrifice is like trying to run before you learn to walk.  It’s like wanting a rainbow without the rain.  It’s like wanting oxygen in your lungs without making an effort to breathe.
There is scarcely any love, passion or fulfilment in life without reasonable effort.  Your struggle may be physical, it may be emotional, or it may be both.  In all cases it is necessary and worth every bit of strength you can muster.
True love is not a fleeting feeling, it’s not an equation that can be solved, and it’s certainly not a fairytale.  True love is the air you breathe, the ground you walk on, and the foundation for all human growth.  It’s the path for everything worthwhile, an energy that’s within you always, regardless of where you are or where you’re headed.

Many with Alzheimer's are living and involved with the day to day expectations of maximising it, despite cognitive decline due to the condition.
I recognise that while there is great sadness in losing one’s cognitive abilities, family members and caregivers can still share a wealth of love and moments of joy and laughter with people living with dementia. 

With the help of these occasional posts, I hope that our view of Alzheimer’s can, shift from “the long goodbye” to “the long hello.”

These posts and their content, are not intended to be flippant or disrespectful of the seriousness of the AD condition, but are intended to shine a light into the dark private places that can be depression and anxiety.


"My Contemplation, because". 

I sit and smoke my pipe in the garden because I love to;
because I love that environment , which is invariably beautiful, 
particularly on a warm sunny day 
and hate the environment where crowds of people are found, 
which are invariably always ugly; 
Because of all the sport, television competitions, parties, 
and assorted social posturing, I thus escape; 
because, in a world where most men seem to spend their lives doing things they hate. 
My contemplation is at once an endless source of delight and an act of small rebellion; 
because Chickens, Flowers,Bugs and animals do not lie or cheat and cannot be bought or bribed
or impressed by power, but respond only to the quiet,kindness, humility and endless patience;
because I suspect that I am going along this way for the last time, 
and I do not want to waste the trip. 
Because mercifully there are no bloody telephones ; 
because only in the garden can I find solitude without loneliness; 
because Wine out of a glass always tastes better out there; 
because maybe one day I will see something wonderful, 
like my smiling wife and sons; and, finally, 
not because I regard contemplation and smoking my pipe as being so terribly important, 
but because I suspect that so many of the other concerns of men are equally unimportant 
- and not nearly so much fun. 

Saturday 8 June 2013

Tilting At The Windmills Of My Mind



Hi, my name is Jim, welcome to my website. I am an old guy in my late sixties who has been diagnosed with Alzheimer's disease, an incurable and eventually terminal form of dementia.
It is my hope,that through this blog that I can relate with other sufferers, my remaining life's journey for as long as I can.This may be of interest to others with dementia diagnosis and their family or carers. 
"When life itself seems lunatic, who knows where madness lies? To surrender dreams--this may be madness; to seek treasure where there is only trash. Too much sanity may be madness! But maddest of all--to see life as it is and not as it should be."
Miguel DeCervantes. 
This is how I feel about the state of my own mind: like everything is just swirling around in circles, like I am frantically trying to organise the mess, both up there and in the world that surrounds me. Searching for meaning in things that on the surface seem meaningless, finding order in things that seem chaotic, searching for truth when others say that there is none to be found. Creating this blog was an opportunity for me to be able to talk to the world, to share my thoughts, to have a voice. It was also a way for me to work out a lot of my own ideas, to see if the things I believe and hold to be true really make sense of my terminal illness , Alzheimer's.
The character of Don Quixote in the book by Cervantes, could be suffering from dementia . He is the right age, right sex, he has illusions/visual hallucinations, as well as the accompanying delusions. Occasionally, however, he also experiences moments of clarity, which illustrate his fluctuating cognition.
We see an older man who is said to have "slept and eaten too little and got too carried away reading chivalric novels". We get a clear insight into, not only what he experiences when he has illusions of monsters (the giants towering above him that emerge from windmills and wine skins), but also how he experiences moments of joy with his beloved Dulcinea. For instance, when she throws him a flower during the joust the flower vanishes in a puff of smoke when he catches it. A brief moment of double experience – reality and illusion simultaneously co-existing – like those so often described by patients, in particular, those in which they see figures which "vanish in a puff of smoke".

I am now well into my first year, since being diagnosed with Alzheimer's. Although the medical professionals are of the opinion that I have had AD for several years now. I am unaware of any major changes in my condition since official diagnosis. At least that is my perception,which may not be that of my dear wife and carer. I am certainly aware that there have been some minor changes to my cognitive abilities and to my personal confidence when socialising with others. I am also conscious of being more anxious and irritable in certain stressful situations.Travelling by car as a passenger in particular,I regularly sit with my eyes closed until we reach our destination.Needless to say we do not travel very far,etheir to go for shopping, or to visit medical and welfare professionals. 
My sleep paterns and sleep quality have also changed and continue to deteriorate. I cannot remember (unintentional pun!) when I last had a long, uninterrupted and refreshing sleep.I tend to have several mini sleeps with vivid dreams or nightmares,all of which leaves me feeling tired both physically and mentally during the day. 
I am also banned from answering the home telephone,I am now required to let it ring to answer machine in the event of my wife being un available to take any call. I previously got chastised for being rude and aggressive ,particularly to cold callers,or individuals trying to sell me stuff.I have a wonderful talking parrot and allowed her to join in the conversations!! I honestly wish that my sense of humour is with me to the end,I would miss it dearly,it shines a light that others fail to reach.It is my sword and shield.
Following my initial negative experience with the drug Aricept, taken at different strengths, over a period of several months, my daily routine has now settled down to one of ongoing dependance on my dear wife for my care and welfare. Without her I would be in serious trouble. I am also physically disabled with Arthritis and require assistance with walking. She continues daily, at an incredible rate of knots! to ensure that I am washed,clothed ,fed and have all of my daily medication, which I may require. I constantly worry about her and the eventual toll that this increasing drudgery, generated by me, will inevitably have on her own health. I firmly believe that to come to terms with someone who has been diagnosed with Alzheimer's, carers and family must first of all, let go of the previous person they knew and embrace the new person, just as they are. Since that person will continue to change as time goes by. Remembering that he or she is living in the present and to let go of the person they used to love.That person is never coming back.



"Look Closer"

Small changes,mistakes,
thoughts no longer clear
illogical logic,
herald an unspoken fear.

Dark days are upon me,
our future dreams dead,
I think of the life we had planned,
I shudder with dread.

Too young, I grow old,
and nature is cruel,
'tis brutal to make such intelligence,
look like a fool.

My mind twists and crumbles,
vigour and grace depart,
no one can hear my thoughts,
know that I still have a heart.

But inside this old carcass,
the young man still dwells,
and every now and then,
my battered heart swells.

Though I cannot speak it,
I remember the joys and pain,
in my mind I am living,
life over again.

Please think of those years,
all to few,gone to fast,
and accept the stark fact,
that nothing can last.

So open your eyes people,
open and see,
not a shell of a man,
look closer....see ME!!