tag:blogger.com,1999:blog-3008965140160244592024-03-13T02:26:24.479+00:00Disability - a dialogue with Parkinson's and other diseasesExploring the impact of disability and Parkinson's disease
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.comBlogger299125tag:blogger.com,1999:blog-300896514016024459.post-79735398201456589702013-12-27T11:23:00.002+00:002013-12-27T11:23:53.029+00:00Honesty<div dir="ltr" id="yui_3_13_0_ym1_1_1388142924299_1763" style="background-color: white; padding: 0px;">
<span style="font-family: inherit;">You mustn't be yourself, they say. You must follow our path, for it is the right one. They lie. You must avoid yourself and consume as we do, for it is good. Hide from yourself and be thankful for the hiding places we provide, they declare. Meaning is meaningful only with us. We will take your responsibility and answer for you, they answer. Emptiness is fullness at our table, they disassembling say...but, I reply, my heart remains hungry for something more.</span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1388142924299_1763" style="background-color: white; padding: 0px;">
<span style="font-family: inherit;"><br /></span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1388142924299_2001" style="background-color: white; padding: 0px;">
<span style="font-family: inherit;">Verily quoth I, the meaning of the world and those in it is equally unsubstantiated, untestable and meaningless as the perception of it. Authority is inconsequential pageant for, quoth I, all equally afear the dark of an indifferent world and their unjustifiable position in it. They all cry, "what is left?" </span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1388142924299_2001" style="background-color: white; padding: 0px;">
<span style="font-family: inherit;"><br /></span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1388142924299_2001" style="background-color: white; padding: 0px;">
<span style="font-family: inherit;">I say unto you, "Honesty".</span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1388142924299_2001" style="background-color: white; padding: 0px;">
<span style="font-family: inherit;"><br /></span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1388142924299_2002" style="background-color: white; padding: 0px;">
<span style="font-family: inherit;">Take off the masks we wear, take back responsibility, learn to be yourself in all you are, learn to make mistakes because in their meaninglessness we can make of them as we wish. Does the burden of the childhood question "why?" scare you? Good, be scared! They scoff and laugh, "You don't know that?!" I say, "I'm glad I don't know your answer!" To pretend to know is to deceive yourself and close off your nature. Learn to say, "I don't know ". Question everything because there is no absolute reason we can wrap around our curse of consciousness to give us comfort. Your answer and your comfort is equally as made up as mine. We are in this together, not separately.</span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1388142924299_2003" style="background-color: white; padding: 0px;">
<span style="font-family: inherit;"><br /></span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1388142924299_2003" style="background-color: white; padding: 0px;">
<span style="font-family: inherit;">Question everything! There is no more honest way to be than with "I don't know". Only then can we know ourselves!</span></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com2tag:blogger.com,1999:blog-300896514016024459.post-55520747557987450112013-12-26T07:16:00.003+00:002013-12-26T07:25:44.904+00:00What makes the possible actual?<div class="MsoNormal">
<span style="background-color: white;">There are endless
possibilities but seemingly only one actual world that we can experience. Where
are these possibilities if not in the actuality of the world? What makes the
possible actual?</span><o:p></o:p></div>
<div class="MsoNormal" style="background: white; line-height: 15.0pt;">
<br /></div>
<div class="MsoNormal">
<span style="background-color: white;">It is only with hindsight that we can truly know whether a possibility can be made into an
actuality in the world. Therefore, an observer is needed to verify at this
moment if a possibility has occurred and become actual. However, human
observers are limited in that we think one thought after another and are therefore stuck in the present; the future is unknown to us. We can predict
what might happen in the future by assuming what happened in the past will
continue to occur in the future. But the further we try to leap from the present
the more unlikely we will be able to predict what actually will happen. This is because of the vast number of variables in the world, including the free will of others. If we avoid the present, we are left with only a world of possibilities.</span><o:p></o:p></div>
<div class="MsoNormal" style="background: white; line-height: 15.0pt;">
<br /></div>
<div class="MsoNormal">
<span style="background-color: white;">As observers we
are the ones who introduce possibility into the world; we create it to enable us to navigate a path through our complicated world. But t</span><span style="background-color: white;">he world is a
series of actualities and takes little notice of our possibilities even when we
try to impose our free will onto the world (unexpected things happen and
unexpected consequences of our actions can occur). In other words,
possibilities are only predictions located in our heads as actual thoughts; the
world is not a possibility, it can only be actual. Thought seems to detach us from the immediate sensory input we are receiving and in its place enable us to sense possibilities; we do this by taking all we have learnt, chopping it up into its component parts and being free to glue these parts back together in any configuration. For example, the idea of "seal sister" isn't actual (I don't have a seal for a sister) but its component parts ("seal" and "sister") are things in the world I know about. We become lost in the thick forest of these sorts of possibilities.</span></div>
<div class="MsoNormal" style="background: white; line-height: 15.0pt;">
<br /></div>
<div class="MsoNormal">
<span style="background-color: white;">We can manipulate
the world to make things like computers and phones but we can't change the laws
that govern such things; we can only discover them. The discovery can be
made actual. Similarly, we can live a life but we can't choose the state in
which we exist; it is only a possibility glued together from the component thoughts "we create things", "I was created" therefore "I created + myself". Thoughts only influence other thoughts within ourselves. Thought can influence something outside of yourself if it is translated into action. However, in this translation process the possibility is reduced down to an actuality of the world.</span><br />
<span style="background-color: white; line-height: 15pt;"><br /></span>
<span style="background-color: white; line-height: 15pt;">Therefore, living
with Parkinson's requires me to focus on the actuality of the disease and not
get lost in the possibilities, which are just thoughts with limited influence.
Using the actual as the basis of my response I have more chance of successfully
changing the context of the disease to cope better with it. For example, I can stubbornly ignore the presence of Parkinson's in my life but this makes the symptoms worse because I am not adapting to them.</span><br />
<br />
One crucial aspect of thought that is supremely beneficial in dealing with difficulty is the <span style="background-color: white;">privileged</span> access we have to our thoughts. We have the ability to think different thoughts, which can trigger many different trains of thought. For example, when I was diagnosed I could have thought, "My life is over" and closed myself down. Instead, I thought, "There is space for me in my disease", which opened up thought and the world again.</div>
<div class="MsoNormal">
<span style="background-color: white;"><br /></span></div>
<div class="MsoNormal">
<span style="background-color: white;">We cannot change the fundamental actuality of the world but we can think and act to achieve a closer, more beneficial relationship with it. </span></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com2tag:blogger.com,1999:blog-300896514016024459.post-74886665820552232552013-12-25T05:21:00.000+00:002013-12-25T05:21:43.479+00:00The richest person in the world<div dir="ltr" id="yui_3_13_0_ym1_1_1387948254706_2227" style="background-color: white; padding: 0px;">
<span style="font-family: inherit;">Material wealth is immaterial to the true value of the state of your existence. In a world devoid of internal justice the worth you place on yourself is not determined by how much of the world you own nor is it the power you have over other people. These are fabricated social constructs; diamonds are just another form of carbon, gold is just another metal, political power is illusionary, heaven is just a noble lie to protect the lie of a just world.</span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1387948254706_2227" style="background-color: white; padding: 0px;">
<span style="font-family: inherit;"><br /></span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1387948254706_2237" style="background-color: white; padding: 0px;">
<span style="font-family: inherit;">According to the World Health Organization (WHO) 57 million people died in 2008. Assuming that figure is typical, it means that today around 160,000 people will die worldwide. The certainty of our own death one day means that we only ever lease our material wealth.</span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1387948254706_2237" style="background-color: white; padding: 0px;">
<span style="font-family: inherit;"><br /></span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1387948254706_2238" style="background-color: white; padding: 0px;">
<span style="font-family: inherit;">Therefore, what do we truly lose when we die? <i>We lose the ability to do one more thing</i>. No matter if the next thing you do is to buy a diamond ring or buy an onion ring what is valuable is the act of <i>doing</i>. So, when you are opening your gifts today appreciate the contents of the gift and the loving thought behind it; also appreciate the ability <i>to</i> open a gift. Don't take that for granted. Treasure the gift of doing one more thing! It makes you the richest person in the world!</span></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-37872385753615166832013-12-24T14:37:00.001+00:002013-12-24T14:37:42.247+00:00Fade out and Fade in againIt is a particular feature of Parkinson’s disease and the
medication (Levadopa) I am taking that my symptoms initially ease when I have a tablet but about three hours later my Parkinson's suddenly comes roaring up to me like a vicious dog. I shrink
back from my body as my Parkinson’s, with bared teeth, takes over. I feel as
if I fade out into what is called an “off” period: the boost in the levels of
dopamine supplied by the medication is used up my body. As a result the levels of dopamine I naturally generate isn’t enough to control my movement and that’s
when I freeze up. It's as if I am walking against a very strong wind. I literally have to fight control of my body back from
Parkinson’s. When I take a tablet again I slowly fade in and can take
relative control of my body again. The strong wind goes away.<br />
<br />
The oscillation between “off” periods and
“on” periods has become worse in the past few weeks. Before I would go down a gradual decline into an “off” period. Now, at the end of a dose I am
literally falling off the cliff of the “on” period into the freezer of an “off”
period.<br />
<!--EndFragment--><br />
<div class="MsoNormal">
At the moment my life consists of fade out…fade in…fade out…fade
in…fade out… Try dancing to that rhythm!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi95VW4rkBuT1SnaULUNajtkqqp7_EnIgAgRp5VG7dvjYVNy1f0niFwp7JSlRTUD4gg7Rza8EwenzWNRGUnLdxWTgXloxHWzTrChEkpPcUqA9Xk6aaS97CvbM0KhJgCVphgN8ECSV0aDTsx/s1600/dogs.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="331" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi95VW4rkBuT1SnaULUNajtkqqp7_EnIgAgRp5VG7dvjYVNy1f0niFwp7JSlRTUD4gg7Rza8EwenzWNRGUnLdxWTgXloxHWzTrChEkpPcUqA9Xk6aaS97CvbM0KhJgCVphgN8ECSV0aDTsx/s640/dogs.jpeg" width="640" /></a></div>
<br /></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-26995575822883894942013-12-23T05:29:00.000+00:002013-12-23T05:29:43.399+00:00An emotional hand grenade with the pin pulled outI’ve had to deal with the aftermath of three major emotional
explosions in my life. All three involved a period of deep mourning for the
loss of who I perceived I was and eventual reconciliation with myself. It turns
out the explosions took away a perception I had of myself that wasn’t really
part of me; like a sculptor who creates by chipping the marble away.<br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The first explosion occurred when I was 16 and in the final
year of secondary school. I had been going to speech therapy throughout my
childhood in the hope I would get rid of my stammer. I had unwavering faith in
this. I had to get rid of my stammer so I could cope with being an adult, or so
I thought. I constantly asked myself, "How could anyone function as a grown up with a severe stammer?" Also, I
heard that it was easier for a child to get rid of their stammer and much
harder for an adult. Therefore, I had to catch the last boat to Fluent-ville
and I was already running late. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I attended speech therapy as usual one day when my speech
therapist handed me an emotional hand grenade with the pin pulled out. She told
me "I am going to pass you on to a therapist who deals with adults who
stammer".</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I thought, "Sorry, what did you just say?" I said, "Sssssssssssssss..." and stammered, both verbally and emotionally.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And that's when the hand grenade went off. I was dragged
into adulthood before my time and in the process lost hope and lost my
perceived fluent future. I simply wasn't ready to be called an adult nor was I
ready for the realization that I would have to live the rest of my life with a
stammer. I felt I had failed myself in the worst possible way. I had failed to
give myself the means to be myself.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I saw myself as horribly disfigured from that explosion and
the ringing in my ears deafened me to my voice for years. It took 12 years of
emotional turmoil to come to terms with being an “adult who stammers”.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The second hand grenade I had to deal with was my depression
and nervous breakdown. The explosion blow away my flesh so I was just a
skeleton; it drove away everything except my bare bones. I had to layer each
muscle back onto my skeleton and repair each nerve fibre and tendon. I had to
rebuild my emotional wellbeing one cell at a time. It took two years. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The third hand grenade that was handed to me was Parkinson’s
disease, “You might have Parkinson’s disease”, my disease said and dangled the
pin from the hand grenade in front of me. The wait was agonising to find out
whether the hand grenade would explode or not. It eventually did and separated
my mind from my body and catapulted me into the clutches of a prognosis which
tries to dictate to me, “you will be severely disabled”. I’ve been trying to
glue my mind and my body back together ever since.</div>
<!--EndFragment--><br />
<div class="MsoNormal">
Ultimately, the three explosions have enabled me to know how
determined and resilient I can be in my life. The aftermath has helped me to
refine how I see myself and become a lot more realistic about who I am. I’ve
learnt to be alongside the problems I have. Each explosion taught me something
new and gave me the opportunity to learn and challenge my perception of who I
am. I’ve slowly emerged from the marble…<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-50891259937006501032013-12-22T06:45:00.000+00:002013-12-22T06:45:24.569+00:00Fragile suspensionAfter years of driving on rough ground with three heavy
passengers riding in the backseat (stammering, depression and Parkinson's) my
suspension has started to wear out. Whenever I am in a pressurised situation my
problems put on weight and become prominent, causing the weakened suspension to
buckle; therefore making the journey more uncomfortable and the car likely to
break down.<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Recently my speech and depression has suffered with the
burden of worsening Parkinson's symptoms. Why does Parkinsons have to attack
such a weak spot as my stammer and depression?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have spent quite a bit of time in the cognitive
behavioural therapy garage getting my suspension repaired. I’ve been using the
tools I’ve learnt to carry out the repair; the idea of thrownness (I am
blameless for my problems but I can do something about them by reacting to
them); my future is unwritten; I’m savouring the slice of cake I have (stop
asking for the rest of the cake, you <i>have</i>
got the whole cake!).</div>
<!--EndFragment--><br />
<div class="MsoNormal">
I am sat in the garage taking a break from the repairs,
drinking powdery hot chocolate from the drinks machine they always have in the
reception. I look towards my body on the car ramp and I think, “We’ve been
through a lot together! Hang on in there and I’ll try to repair you to get you
going again!”<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB2NRYCG6qPV0KRJ_pKQASNKD_-bxPAHgA2pIWPu5G1fmP3LZ-JeX-u7fEpg4B3MlIzv3bf7xLTBjR2lLk7gpjVSB0M_Hw1ltK3RFuA9-x3bA880wy8104LGawjSeGfO3nolcgqkoklfmB/s1600/Garage3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB2NRYCG6qPV0KRJ_pKQASNKD_-bxPAHgA2pIWPu5G1fmP3LZ-JeX-u7fEpg4B3MlIzv3bf7xLTBjR2lLk7gpjVSB0M_Hw1ltK3RFuA9-x3bA880wy8104LGawjSeGfO3nolcgqkoklfmB/s400/Garage3.jpg" width="400" /></a></div>
<br /></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-62784346549648114052013-12-21T06:12:00.001+00:002013-12-21T06:26:29.226+00:00Where am I?I get off the train and I don't know where I am. I am <b><i>nowhere</i></b>...<br />
<!--EndFragment--><br />
<div class="MsoNormal">
I get off the train again but this time I am <i><b>now here</b></i><span style="font-style: normal;">... I am where I've arrived (no matter how I got here) and I am here right now</span></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-12379146186378811232013-12-21T06:11:00.002+00:002013-12-21T06:11:35.456+00:00The suffering of a Parkinson’s sufferer<span style="background-color: white;">Parkinson's disease is a slow violation of your life;
an inexplicable, unstoppable, defining yet indefinite disintegration of
everything you have built in your life. The suffering comes from the awareness
of the violation and the lack of power to intervene. It comes from the burden
of "should have done more in the past" and what I can't do now
and in the future. It is knowing when the violation is over there will be
nothing left of me. A life in ruins. </span><br />
<span style="background-color: white;"><br /></span>
<span style="background-color: white;">Yet I can admire a ruined building
and what a life leaves behind. That is my aim now: to live a life in the
present to the best of my ability and ensure through the process of living
something of me remains.</span>Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-86436636698491301542013-12-20T10:30:00.000+00:002013-12-20T11:54:56.212+00:00Hold on tight to our Shiny Red BalloonI<br />
<br />
We all tightly grasp,<br />
The string we attach,<br />
To our shiny red balloon<br />
<br />
The red skin is stretched,<br />
Over dark flesh and bone,<br />
We are that red balloon<br />
<br />
We mustn't let go,<br />
Before we can know,<br />
Whether we will go pop<br />
<br />
We keep ourselves close,<br />
For fear of that stop,<br />
But instead we must let go<br />
<br />
It is only then,<br />
Can we possibly know,<br />
Of new fields we can sow<br />
<br />
II<br />
<br />
It is with Parkinson's lead,<br />
That we float to the floor,<br />
<br />
But we must trust,<br />
We are more than our rust,<br />
<br />
We can only be free,<br />
If we float in the air,<br />
<br />
So enjoy the view,<br />
From high in the sky,<br />
<br />
Because...<br />
<br />
Control melts like purest snow,<br />
When we grasp it soAnonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-6066055644012090232013-12-20T06:03:00.000+00:002013-12-20T10:29:53.650+00:00Resisting fear<span style="background-color: white; font-family: Helvetica, Arial, 'Droid Sans', sans-serif; font-size: 14px; line-height: 19.984375px;">One of the hardest things to come to terms with when you are diagnosed with a progressive disease is fear of the future. It can plague your every move and throw you into the future while you miss the present. </span><br />
<span style="background-color: white; font-family: Helvetica, Arial, 'Droid Sans', sans-serif; font-size: 14px; line-height: 19.984375px;"><br /></span>
<span style="background-color: white; font-family: Helvetica, Arial, 'Droid Sans', sans-serif; font-size: 14px; line-height: 19.984375px;">Fear is useful when you are faced with an immediate threat; it focuses your attention and prepares you to fight or flight; it is a mechanism for self preservation. </span><span style="background-color: white; font-family: Helvetica, Arial, 'Droid Sans', sans-serif; font-size: 14px; line-height: 19.984375px;">However, with the evolution of </span><span style="background-color: white; font-family: Helvetica, Arial, 'Droid Sans', sans-serif; font-size: 14px; line-height: 19.984375px;">self awareness and</span><span style="background-color: white; font-family: Helvetica, Arial, 'Droid Sans', sans-serif; font-size: 14px; line-height: 19.984375px;"> imagination fear began to turn inward and prepare us physiologically to fight or flight from the </span><i style="font-family: Helvetica, Arial, 'Droid Sans', sans-serif; font-size: 14px; line-height: 19.984375px;">idea</i><span style="background-color: white; font-family: Helvetica, Arial, 'Droid Sans', sans-serif; font-size: 14px; line-height: 19.984375px;"> of fearful things; we react to fearful ideas perpetually because we cannot take flight from the idea of fear (we are tied to our self-awareness of the fear) and fighting it is fighting our self.</span><br />
<div style="background-color: white; border: 0px; font-family: Helvetica, Arial, 'Droid Sans', sans-serif; font-size: 14px; line-height: 19.984375px; margin: 0px; padding: 0px;">
<br /></div>
<span style="background-color: white; font-family: Helvetica, Arial, 'Droid Sans', sans-serif; font-size: 14px; line-height: 19.984375px;">Fear doesn't change the nature of the external object we are fearful of; fear is just a thought and thoughts have a limited sphere of influence. This is even more applicable to abstract objects of thought. For example, fear of a Parkinson's future is fear of nothing actual except thought itself since the future is not real yet (and thoughts do not create the future).</span><br />
<span style="background-color: white; font-family: Helvetica, Arial, 'Droid Sans', sans-serif; font-size: 14px; line-height: 19.984375px;"><br /></span><span style="background-color: white; font-family: Helvetica, Arial, 'Droid Sans', sans-serif; font-size: 14px; line-height: 19.984375px;">A way out of this fear of nothing is to acknowledge thoughts can be replaced by other thoughts; the idea of fear can be challenged by other ideas. We have an extraordinary ability to create thoughts and this gives us immense power in understanding and dealing with the external world and the world of thought. We can carry out a similar analysis to the one I did just now: the idea of fear is fearful about nothing except itself and elicits a perpetual physiological response normally reserved for the instant of being threatened by things in the external world.Thoughts change and with it the idea of fear can change.</span><br />
<span style="background-color: white; font-family: Helvetica, Arial, 'Droid Sans', sans-serif; font-size: 14px; line-height: 19.984375px;"><br /></span>
<span style="background-color: white; font-family: Helvetica, Arial, 'Droid Sans', sans-serif; font-size: 14px; line-height: 19.984375px;">We can choose to live in a world of fear, which is really a world in our imagination or use thought to limit fear to the immediate experience of external objects that threaten and resist carrying fear beyond the object to objects of thought.</span>Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-18585927983100040742013-12-19T07:25:00.001+00:002013-12-20T10:28:25.312+00:00Opening your Christmas gifts with Parkinson's handsThe excitement bursts all around you like the sun moving from behind a cloud. It is Christmas morning and a pile of presents, wrapped in shiny multicoloured paper, is before you. Santa's been! You kneel down and pick up the first present...but that's when the problems start. Your tremor starts again and it is difficult to move your rigid fingers. You try to hold the present in your left hand and tear at a loose bit of wrapping paper with your right hand but every part of you moves so slowly (except the tremor; such is the dichotomy of Parkinson's!) that you eventually drop the present. "I'll try another one, it might be easier". But the same thing happens; the present, unopened, drops on the floor. As you try to open more gifts the pile of untouched presents diminishes and the attempted but unopened pile of gifts increases.<br />
<br />
This isn't just on Christmas morning, it is every morning. Living with a disability is easier if the gifts of life are not gift wrapped (which sometimes removes the excitement of the discovery) but at least life is made user-friendly by adapting the way you live to your difficulties. That doesn't mean becoming your disability and not approaching the gifts of life; it means making the gifts more accessible to you.<br />
<br />
Merry Everyday Everyone!Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-86967866206620155512013-12-18T08:17:00.001+00:002013-12-18T08:17:24.757+00:00What my depression feels likeMy life is like a carefully woven ball of wool. To live my life I use the ball of wool to create all sorts of garments; in the past I’ve
made a DPhil jumper and currently I am trying to make a pair of writers
trousers. I need the wool in a neat ball so it unwinds without getting tangled,
allowing me to live a smooth and contented life.<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
However, I am currently going through a bout of depression
related to my worsening Parkinson's symptoms. The effect of my depression is to
unravel the ball of wool so it ends up in a tangled mess on the floor. It is
very difficult trying to find the exposed end of the ball of wool to enable me to knit a
garment and get through the day; I spend ages untangling the wool before I
even pick up my knitting needles.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The longer the wool is left on the floor the quicker it
becomes frayed and damaged, making it harder to knit the necessary clothes to
function in daily life. Even when I manage to knit a garment it falls apart
because of the damaged wool. The unused wool then becomes scattered around my life
and my feet get caught in it and I continually trip over.<br />
<br />
In the absence of new clothes to replace the old, the clothes I am
wearing become faded and drop off me. I am left exposed to the cold winds of the depression
storm.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I need to see the ball of wool as unraveled and not accept its tangled state as something normal. I need to gather together the wool again and make sure it is wound into a neat ball. I need to recognise again the range of garments I can make. I need to be me again...</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyGnl1zyHjlz6c8785PuYPj9_jclSWCvhkdi9rKr9PBT6X239FOHz0KKm3UelcdCiU9vztB45m8-hxbjXIubpvXFhac0w5IoAIqYDW9WxdGjgq7KvooRSp4Gk2N0k03mkdF18h6O-B1uit/s1600/knit.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyGnl1zyHjlz6c8785PuYPj9_jclSWCvhkdi9rKr9PBT6X239FOHz0KKm3UelcdCiU9vztB45m8-hxbjXIubpvXFhac0w5IoAIqYDW9WxdGjgq7KvooRSp4Gk2N0k03mkdF18h6O-B1uit/s400/knit.jpg" width="297" /></a></div>
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-43801443092404845952013-12-17T09:28:00.001+00:002013-12-17T09:28:28.072+00:00Losing and gaining hopeLosing hope is caused by not being able to see the
possibility of your free will influencing the outcome of an event. In our random, unjust world it is a constant battle (mostly filled in by religion and
science) to maintain your hope. All hope is based on the basic premise that one day we will fully understand the
world and be able to be the cause of its effect on us. In the absence of hope we sink down to our
knees and let the howling winds of the world shake us out of ourselves.<br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Therefore, we lose the connection between ourselves and the world when we lose
hope. Like the arrival of Parkinson’s in your life, you see
the future you expected to have being snatched away. How do we gain our hope
back?<br />
<br />
We do not lose our free will when we lose hope; we lose the <i>perception</i><span style="font-style: normal;"> of what our free will can do. Therefore, even
when we lose hope we are free to choose our reaction to the world and in doing so colour
the world according to our will. For example, losing hope I will ever share my
life with someone because of my Parkinson's causes me to perceive every woman I meet as automatically not
interested in me. This causes me to lose even more hope and makes me determined
to give up any possibility I have to express my heart. The world
continues with its perceived indifference towards me because I don’t engage with it. I need to see the possibility of the world accommodating me and allowing me to express myself within it. If, with renewed hope in the efficacy of my free will, I can create space for me it means I can create space for others to join me.<o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-81449283719184623502013-12-16T15:03:00.000+00:002013-12-16T15:03:28.787+00:00Reaching out to myselfIn an average lifetime, we will take a breath about
588,000,000 times (at rest we breath about 16 times a minute). Obviously
breathing is fundamental to life in that it provides oxygen to the body and
takes carbon dioxide away. Breathing is also a rhythm of the body we all dance
to and which forms a window into the fundamental anatomy and physiology of the
body.<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Parkinson’s disease is disrupting the conscious control I
have over my body (it is as if Parkinson’s has pushed my body ahead of my mind)
but it has mercifully left unconscious functions like my breathing intact.
Therefore, Parkinson’s has left a gap in which I can assert the feeling of a
connection to my body.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was at yoga today feeling annoyed with my Parkinson’s as I
was struggling to get into the poses. I began to ask myself, how can I feel a
closer connection to my body no matter how my symptoms fluctuate? I thought of
an image of reaching into my body and touching the heart of me; like plunging my hand through a layer of oil to get to the clear water underneath. Then I
noticed my breathing; I breathe in, my chest expands, I breathe out, my chest
deflates. I focused on this rhythm for a minute or two and then it hit me:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I breathe in, my chest lifts up <b><i>as if I am reaching
out to myself</i></b>.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I breathe out, my chest contracts <b><i>as if I am pulling
myself closer</i></b>.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>I reach out for myself, I pull myself closer. I reach out
for myself, I pull myself closer.</b></div>
<!--EndFragment--><br />
<div class="MsoNormal">
This is a profound realisation. No matter how my symptoms
fluctuate or deteriorate I will always be able to reach out to myself and feel
a connection through my breathing. And I will be given the opportunity to do
this hundreds of millions of times. I can be myself…<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-12609425338579202092013-12-16T08:10:00.002+00:002013-12-16T08:10:44.327+00:00RetreatImagine Michelangelo’s disappointment if he stood back to
admire his David and all the dust and chipped marble that he laboriously
removed over months slowly began to reattach to the sculpture. David was
gradually becoming covered up and drowned in the discarded marble.<br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Would Michelangelo give up art if he then saw his Sistine
chapel fresco brush stroke by brush stroke go back to an ordinary ceiling?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is what it feels like to see the gains you have
achieved in managing your Parkinson’s symptoms be pushed back. My symptoms have
worsened recently and I have retreated from where I was.</div>
<!--EndFragment--><br />
<div class="MsoNormal">
But, I won’t give up trying to sculpt or paint my life…<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhas0iFV0IjUoxuqQG-1lUh8rbqgb3WpSszKV91a2VhPZ9kZsBKxbOl8M0UavwP1JpoEgo6vdTN6rPnoJkt7aSUiojTuWK2o00afvYruSrMVRwAdHuOJKAyFka6pst_9WB-XRHoGkfP2OFf/s1600/IMG_2329.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhas0iFV0IjUoxuqQG-1lUh8rbqgb3WpSszKV91a2VhPZ9kZsBKxbOl8M0UavwP1JpoEgo6vdTN6rPnoJkt7aSUiojTuWK2o00afvYruSrMVRwAdHuOJKAyFka6pst_9WB-XRHoGkfP2OFf/s1600/IMG_2329.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="206" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhas0iFV0IjUoxuqQG-1lUh8rbqgb3WpSszKV91a2VhPZ9kZsBKxbOl8M0UavwP1JpoEgo6vdTN6rPnoJkt7aSUiojTuWK2o00afvYruSrMVRwAdHuOJKAyFka6pst_9WB-XRHoGkfP2OFf/s320/IMG_2329.JPG" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdkULd4b_kFlvYEyMpwAzYrhz6y2bChWts4i9A3ox0E9LoeMeiQSnvIP70RZtAlPMSr9uOSbqPi-qmhGEvbNOA2-rYsZkQZm_kAow7f-gm3vZsBAwq-2QPBD0sPIAJhIaLWDu7uglyyUJk/s1600/marble.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="299" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdkULd4b_kFlvYEyMpwAzYrhz6y2bChWts4i9A3ox0E9LoeMeiQSnvIP70RZtAlPMSr9uOSbqPi-qmhGEvbNOA2-rYsZkQZm_kAow7f-gm3vZsBAwq-2QPBD0sPIAJhIaLWDu7uglyyUJk/s400/marble.jpeg" width="400" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-79713868745830346852013-12-14T10:00:00.003+00:002013-12-14T10:09:25.354+00:00Walking through open doors<div dir="ltr" id="yui_3_13_0_ym1_1_1387013855655_7497" style="background-color: white; padding: 0px;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Coping means approaching, confronting and moving through the open doors of a disease.</span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1387013855655_7497" style="background-color: white; padding: 0px;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1387013855655_7506" style="background-color: white; padding: 0px;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">It is very difficult to see beyond the room you occupy with your disease. It can confine you and define what you can do and who you are. It can appear you have no options, nowhere to go and nothing to do except remain where you are.</span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1387013855655_7507" style="background-color: white; padding: 0px;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1387013855655_7507" style="background-color: white; padding: 0px;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">However, there is always something left to do in this life; there is always at least one door in the room you are in.</span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1387013855655_7508" style="background-color: white; padding: 0px;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div dir="ltr" id="yui_3_13_0_ym1_1_1387013855655_7508" style="background-color: white; padding: 0px;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">If you ignore the door or hesitate on the approach you will be in denial and remain in the dark of the disease. Learning to accept the disease but seeing it as your only possibility means you stop in the doorway without going through. However, accepting it as part of you but not the whole of you means switching on the light in the next room, seeing space in there for you and then moving through the open door.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxzk1lluvSdzTC4YC7sf5tlTSJS7t1hA8vd26KqApKGHLCc5jyaDpcnyw2M2cjP-OUTDqQ9mMZcMSQs1XifbvDiLoV4T7-JB2GBd99r7iytxyr9F-0m0cwA_MlDFzmOf9E22LrFXn0XRAL/s1600/open-doors.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxzk1lluvSdzTC4YC7sf5tlTSJS7t1hA8vd26KqApKGHLCc5jyaDpcnyw2M2cjP-OUTDqQ9mMZcMSQs1XifbvDiLoV4T7-JB2GBd99r7iytxyr9F-0m0cwA_MlDFzmOf9E22LrFXn0XRAL/s320/open-doors.jpg" width="303" /></a></div>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-55234452341900914942013-12-13T08:01:00.003+00:002013-12-14T09:54:42.881+00:00Unlocking doorsCoping with life is trying to unlock and lock the doors
around you. We find ourselves in a world full of choices and there are many
doors we can open and close. Each door leads to a room we can inhabit and each
room contains doors that lead on to other rooms.<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
No matter what type of room you find yourself in there's
always at least one door waiting for you to unlock and walk through. You
also have a choice to lock the door behind you either emotionally or within
your memory; indeed you have a choice to keep it open. However, you can never
go back to the same room; the context always changes since you were there last.
Where do we get the keys to unlock these doors? We are thrown into the world
with a specific set of keys but we can learn to adapt and mould keys to fit
other locks.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We tend not to notice the doors in the rooms we inhabit, we
are creatures of habit and tend to stay emotionally where we are or follow the
route we have used before. This is understandable given the multitude of doors
available and the incessant choices there are to make. It is this bewildering
openness, which can close you down, that makes life so complicated. But this
openness gives you the opportunity, when doors are locked due to disease or
circumstance, to find alternative routes to live your life.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Now, go and open some doors! <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGSKs7fB-CHGlxvVxyeNlZQqOF4t7929aABow-3jfsY4jxkRoqM3TUgnAwFi33vY9ozpnULf9dQBVLchI8n2E0dWYsI9CFzVyoecK3xjOJgcLIOJceeOZAlXFssnENG06ODTm7QhhK9Ri1/s1600/doors.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="182" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGSKs7fB-CHGlxvVxyeNlZQqOF4t7929aABow-3jfsY4jxkRoqM3TUgnAwFi33vY9ozpnULf9dQBVLchI8n2E0dWYsI9CFzVyoecK3xjOJgcLIOJceeOZAlXFssnENG06ODTm7QhhK9Ri1/s400/doors.jpeg" width="400" /></a></div>
<br /></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-13859253359838593322013-12-12T21:43:00.004+00:002013-12-12T21:43:59.985+00:00“Jonny in the blind...”Based on the movie "Gravity"<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The majestic earth was spinning on its axis beside me; the
sun reflected off the polar ice caps and a storm swirled over the Atlantic
ocean. I was in orbit trying to finish work on my doctoral thesis satellite; I
was ready to push the satellite into the intellectual firmament when a warning
came on the radio. It said, "you might have Parkinson's disease". I
scrambled to get back to the life I had known but it was impossible. Then it came,
the debris from a Parkinson's diagnosis; it slammed into and destroyed the
shuttle that would have taken me back to my former life. I was sent spinning
off into space. I felt disorientated, confused and desperately lost; “this is
Jonny in the blind, do you copy…?”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The support I received from my family and friends and my
doctors give me a jet pack with enough fuel to get to the nearest space
station. Once I got there I readied the escape module but another wave of
debris hit as my symptoms worsened, damaging the module. There was no other
choice but to use the module, I had to reach the next treatment space station and I just made it. Here I am, waiting for the next wave of Parkinson's
debris to hit, longing for something to get me back to earth...</div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-60379130636524781762013-12-12T07:23:00.002+00:002013-12-12T07:23:32.993+00:00Being in love with a Parkinson’s sufferer????Parkinson’s disease changes you physically; it drives its
car in such a way as to continually cut you up on the motorway of your life; it
causes traffic jams, accidents and under takes you while you are sat behind the
wheel of your car impotent with road rage: “get the f**k out of my way!!”<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This must be the same for partners, family and friends who
are driving with you; the scream out of their own car windows, “we are trying
to get somewhere Parkinson’s, get the f**k out of our way!!”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is especially true when you are trying to start a
relationship (in my case) or maintain a relationship. Your partner (who has
potentially known you for years) or potential partner (who has expectations of
what they want in a partner) will expect you to drive at a certain speed and
with a certain level of skill. As they are wanting to race ahead with you, you
are stuck behind the Sunday driver that is Parkinson’s. Eventually you drift
apart (or never drift together) and lose sight of each other.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I think we respond to love and being wanted both emotionally
and physically; we can normally reciprocate love in the same way. Because
Parkinson's undermines us physically and emotionally however and at the same
time increases the need to be loved (especially somebody to love our crumbling
physical body) it reduces this response and reciprocation to dreadful
isolation; the disease stops the normal cycle of being in love: you engage
emotionally with someone, they reciprocate, then you engage physically which
lays new ground for a deeper emotional connection (in an ideal world).
Parkinson's dissolves this possibility both for you and your partner. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Parkinson’s makes you and your (potential) partner drive at different speeds…<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiRRcVkqdHwZge68j17f668bRYSpjd6ITr4KnWpn-CVWObzxT0Bdsf558inSUqC2dDdbKZhcANXUVc9JzMKyFbNkI4UF-06ZCizy6LLZYmUwMgdf2iKogC8J38RRs01-XgsEXiAEdhrlLA/s1600/driving.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiRRcVkqdHwZge68j17f668bRYSpjd6ITr4KnWpn-CVWObzxT0Bdsf558inSUqC2dDdbKZhcANXUVc9JzMKyFbNkI4UF-06ZCizy6LLZYmUwMgdf2iKogC8J38RRs01-XgsEXiAEdhrlLA/s400/driving.jpeg" width="400" /></a></div>
<br /></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-21569933820520184042013-12-11T06:41:00.000+00:002013-12-11T06:52:02.957+00:00Living in an unjust world“Alone! I’m alone! I’m a lonely, insignificant speck on a
has-been planet orbiting a cold, indifferent sun!”<br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Homer Simpson</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It is a comforting fiction that asserts we live in a world
with a kindly paternal overseer, like the ultimate alpha male looking after his
chimp group. The incidence of natural injustice such as children having
Parkinson's disease or a million other examples demonstrates we live in a world
without any internal justice. This is why searching for an answer to "why
me" questions is so fruitless; there is no entity in the world to provide
any answers to these questions.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It may be uncomfortable to acknowledge that we truly are
alone in this world but it is a valuable insight into the world. Of course this
lays a terrible burden of responsibility on our shoulders; in an indifferent
world we have to justify our own actions and define justice and injustice
ourselves. For some this is too much to bear and they retreat into the fiction
again.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For me, as a Parkinson's sufferer, I prefer the liberation
of not trying to understand an entity that isn't there. It dissipates the rage
and the self-flagellation. If there is no natural justice then I can understand
my disease in any way I wish. I can build my own sense of justice and
injustice; I don’t have to subscribe to the paternal overseer story and its
contradiction of an all powerful creator who is powerless to stop suffering; of a
just creator who is unjust; the ultimate moral good who isn’t morally good. As
the German philosopher Immanuel Kant said, we assume the ultimate moral good
(i.e. the paternal overseer is our assumption) but we have a choice to question
the validity of the assumption; we don’t have to believe in the religious
interpretation of where the moral good comes from to be a good person. We can
choose to understand the relative nature of morality while still remaining morally
good. We can choose the responsibility of being the justification of what is
just in our world; we do this anyway when <i>we choose</i> a religious morality.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This choice creates space within the world for me; a chance
to exercise my free will and take on the responsibility of choice, which
enables me to choose to live alongside my disease.</div>
<!--EndFragment--><br />
<div class="MsoNormal">
A sense of justice is not internal to the world; we create
it to heat up the cold indifference of the world. <o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-87695100088732504482013-12-10T07:10:00.001+00:002013-12-21T06:45:44.100+00:00What is beautiful?Where does our concept of “beauty” come from?<br />
<br />
Beauty is aspirational but it is also a mere convention. Who is deemed beautiful and the standard we are measured by <i>is a fabrication</i> designed to make you feel inadequate so you attempt
to buy the means to be “beautiful”. Fashion, cosmetics, music stars, film
stars, celebrities are based on this. “Beauty” is designed to make you spend
money.<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It is also based on a ludicrous assumption that we have fallen in love with. Judging somebody suggests that you hold that person responsible;
for example, we judge academic or athletic performance because we assume that the person
being judged actually did the work. We apply this same logic when we judge
whether somebody is “beautiful”; we assume that they are responsible for their
facial features and body type. <b><i>However</i></b>, our genes determined these characteristics when we
were developing in the womb. <b><i>You did not choose either your genes
or these characteristics</i></b> because you are incapable as you are developing to control the
process of your development; control is only possible once you are outside of the womb and the
developmental process has come to an end.
Therefore, you are not responsible for the state in which you exist in the world, which
includes how “beautiful” you are. Indeed, <i>nobody</i> chose your facial features or body type. It follows
that when you judge yourself or others to be “beautiful” or “ugly” your
judgement doesn’t apply to that person; nobody is responsible. Therefore,
the statement “you are ugly” is devoid of meaning and can be shrugged off; it
doesn’t apply to me, I’m not responsible; it’s the same as judging me for a murder
committed in 1783; in no way can I be responsible. It simply makes no sense.
This reasoning also applies to judgements about the colour of your skin or your
gender.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We are beautiful for who we are and what we do in this life
because these can be our responsibility.<br />
<br />
Please, don’t judge somebody solely on whether they are “beautiful” or “ugly” because you are
really judging <i>nobody</i> when you do that!</div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-90494476357803232192013-12-09T07:29:00.001+00:002013-12-09T07:36:32.354+00:00The reasons whyWe are obsessed with understanding why things happen;
Science tries to find out why the world acts the way it does, it is the basis
of religion too. Our curious nature is <i>the </i>wonder
of the universe but it is also a terrible burden; it can lead us to seek
answers where there are none.<br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Why do bad things happen in the world? Why do I have
Parkinson’s disease? <b><i>There is no reason</i></b>. <i>It just is</i>. Our need to answer the question is a need for control in a hostile
world. If we can understand why we can prevent it and make the world and
ourselves safer. But sometimes the world cannot offer any answers and this
leads us into logical despair; we end up praying to God who, as author of the
world, is responsible for (or at least neglectful of) the evil in the world.
So, we end up replacing “why is there evil in the world” with “why does God
allow it” and get absolutely nowhere in answering the <i>why</i>. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Some people blame themselves for being “born into sin”. But
such reasoning is a cry of despair. In no way did we choose to be born or
choose the way we exist. What have I got to do with what supposedly happened
2000 years ago? That’s not my responsibility; that’s like saying I committed
murder ten years before I was born and I should be punished for it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We should learn to live with uncertainty and not knowing
why. It just <i>is</i><span style="font-style: normal;">. We can learn to do
something about it by trying to understanding </span><i>how</i><span style="font-style: normal;"> the world works but filling our lives trying to
understand </span><i>why</i><span style="font-style: normal;"> is trying to climb
through the looking glass; instead we bang our heads and we are left looking at
our reflection and wondering, “why am I here?” </span><b><i>No reason…<o:p></o:p></i></b></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-9041735949425554152013-12-08T07:29:00.000+00:002013-12-08T07:58:23.720+00:00Why does it take 60 years for Parkinson’s symptoms to emerge?One of the outstanding questions in Parkinson’s research is what enables the nerve cells in the region of the brain affected in Parkinson’s (i.e. substantia nigra) to tolerate the insults of the disease for over 60 years (in late onset Parkinson’s) before symptoms emerge? Conversely, in early onset Parkinson’s (symptoms emerge before 60) why is this tolerance missing?<br />
<br />
I listened to a talk given by Prof Ole Isacson (Harvard) at the OPDC where he discussed a fascinating possibility to explain this puzzle. I will try to explain what I understood of his reasoning (the analogy is my way to understand the idea):<br />
<br />
Imagine some annoying person is tapping you on the shoulder. Initially it is very gentle so you barely notice it. But the tapping becomes steadily harder and eventually begins to hurt. At a certain point you lose patience, "STOP IT or I'm leaving!"<br />
<br />
The thing that annoys cells in your body is highly reactive chemicals called reactive oxidative species, which are by-products of energy production in the cell. These chemicals tap the cell on the shoulder but they are tolerated because the cell normally either neutralises the chemical before cellular damage can occur or repairs the damage (the cell can shrug off the shoulder tapper). However, as the cell ages, natural damage accumulates (repair isn't perfect) and the tolerance of the cell to damage is overwhelmed. Eventually the cell loses patience ("STOP IT or I'm leaving!") and presses the self-destruct button and dies (in a process called apoptosis or programmed cell death).<br />
<br />
Now imagine your shoulder has been very active doing exercise and is sore to the touch. But the tapping starts again. Your patience wears very thin a lot quicker this time.<br />
<br />
This is what happens in nerve cells that die in Parkinson's: these cells are very active and need lots of energy so they generate lots of reactive chemicals and are prone to more damage; the shoulder is sensitive to even the lightest touch. Add to this the extra reactive chemicals generated as a result of Parkinson's gene mutations and these high energy dopamine nerve cells press the self-destruct button sooner and are preferentially lost.<br />
<br />
In other words, the threshold for triggering self-destruction of these cells gradually declines with age, which may exaggerate the affect of Parkinson's associated mutations in later stages of life (initially the Parkinson's affect is small because it is well tolerated but increases as tolerance declines). This provides one possible explanation why in most cases Parkinson's emerges after 60 years of life.<br />
<br />
This raises the question, what make cells in early onset Parkinson’s (I was diagnosed age 33) especially intolerant of this natural wear and tear of the cell? What is it about the changes in my DNA that makes cell death occur earlier?<br />
<br />
Thinking of new avenues of treatment: how can we boost this tolerance so we can push back onset of symptoms by another 60 years?<br />
<br />
Prof Isacson’s idea demonstrates what all good ideas in science do: raise more questions!Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com1tag:blogger.com,1999:blog-300896514016024459.post-36434584246956807932013-12-07T06:46:00.000+00:002013-12-07T06:57:46.387+00:00Using stem cells to treat Parkinson's<div class="MsoNormal">
We all start out as the ultimate stem cell; a fertilised
egg generated you with all 200 different cell types that make up the human
body. This is the definition of what a stem cell is; it has the potential to
develop (or differentiate) into different types of cell. The body normally uses
stem cells as a special reserve of cells to replenish any differentiated cells
that are naturally lost (e.g. replacing blood cells). </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Stem cells are directed towards a specific cell type by
chemical messengers that give the go ahead for the stem cell to transform its blank canvas
into, for example, a nerve cell. </div>
<div class="MsoNormal">
<br /></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0cm;">
To
do this, a stem cell first of all switches off genes that make it a stem cell
and activates other sets of genes within itself (e.g. nerve cell genes). Since
genes produce proteins, this changes the proteins in the cell (i.e. stem cell
proteins are replaced by nerve cell proteins). These new proteins set to work
changing the structure and function of the cell so it becomes a specific cell
type (e.g. nerve cell).<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0cm;">
As
the nerve cell is emerging one of the genes that is switched on may contain a
Parkinson's related mutation and will therefore produce a faulty protein. This
faulty protein will lower the efficiency of the cell either by over activating
or inhibiting a specific function. Cells are dynamic entities so will try to
compensate and adapt to this inefficiency; they are remarkably successful at this since
it typically takes 60 years for Parkinson's to emerge. However, as cells age
they accumulate additional wear and tear; this natural slowing down within the
context of the Parkinson's mutation will be too much and will trigger the
cell to die. As more cells die, less dopamine will be produced and more
Parkinson's symptoms will emerge.<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0cm;">
This
is when science strides into the picture and tries to find ways to restore
dopamine levels; there are at least three ways we can do this; stop cells from
dying, replace the cells that are lost or replace the dopamine. Science has been
moderately successful in replacing dopamine by giving it in tablet form.
However, this does nothing to address the underlying cause of Parkinson’s; the
loss of nerve cells. Current research is looking towards replacing the A9
substantia nigra nerve cells lost in Parkinson's with equivalent cells grown in
the lab from stem cells.<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0cm;">
In
the future the procedure will probably be something like this: skin
cells will be taken from sufferers and these cells will be transformed back
into stem cells (called induced pluripotent stem cells) and then driven towards
a specific nerve cell type. A9 nerve cells will be selected and the Parkinson's mutations
will be corrected by replacing the mutant DNA with normal DNA.<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0cm;">
These
corrected, induced A9 nerve cells will be transplanted into the substantia
nigra of sufferers, where they will connect to other nerve cells in the brain
and generate dopamine to restore movement.<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0cm;">
A recent paper by Sundberg et al (2013; <a href="http://onlinelibrary.wiley.com/doi/10.1002/stem.1415/full" target="_blank">http://onlinelibrary.wiley.com/doi/10.1002/stem.1415/full</a>) has shown in principle all steps (except replacing mutant DNA) are successful in treating Parkinson's in the rat and transplanted cells survive in primates for at least a year.</div>
<div style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0cm;">
The ability to precisely replace DNA is an emerging technology (<a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2443.2012.01599.x/full" target="_blank">http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2443.2012.01599.x/full</a>). A specific part of DNA, which contains a Parkinson's mutation, is targeted by zinc finger nucleases (ZHF); these are proteins which grab onto specific sequences of DNA and essentially carry a pair of scissors to cut the DNA at this point. Normally the cell glues this cut together again. If two ZHF's are used and they bind a certain distance apart then the intervening bit of DNA (containing the mutation) will be cut out. A new bit of DNA can be introduced into the cell and it can slot into the gap created by the ZHF's and glued in by the cell. Therefore, the normal DNA sequence of a gene is restored. This technology has huge potential in the treatment of all disease.<br />
<br />
Exciting prospects are slowly coming into focus!</div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0tag:blogger.com,1999:blog-300896514016024459.post-13248400780957781092013-12-06T19:14:00.001+00:002013-12-06T19:14:26.349+00:00“I'm going to be severely disabled...”Parkinson’s is a chronic, incurable, progressive disease. How
would you feel if you faced the prospect of severe disability in the future?<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Would it scare you? Would it make you sad? Would it make you
give up? <b>Or does it make you try to live up to the opportunities life can
still give you?<o:p></o:p></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Would you end up obsessed about the
future? Would you hesitate and feel an overwhelming burden to achieve
everything now while you can? <b>Or does it make you celebrate who you are in this
instant?<o:p></o:p></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Would it make you look back and regret the opportunities
missed? Would you feel the anxiety of the march from independence to dependency? <b>Or does it make you celebrate what you were able to do in the past and what you are still able to do?<o:p></o:p></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Would you feel isolated at the prospect of being within a
body that is unresponsive to you? <b>Or does it make you try to live your life
to the best of your ability?<o:p></o:p></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Would you give up hope of finding someone to share your life
with? Would you devalue yourself in the face of such a prospect? <b>Or does it
make you see yourself as preserved within the disease and still capable of
being a loving person?<o:p></o:p></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Would it make you rage against the unfairness of it all?
Would it devalue your mind as your body is stolen away? Would it disappoint you
that your mind isn't strong enough to overcome Parkinson's? <b>Or does it make
you appreciate the power and privilege of thinking as the tool to sculpt Parkinson's into a life with space for you?</b><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dare to ask yourself these questions and understand what
chronic, incurable and progressive means. By the very act of formulating the
question, understand the <i>choice</i><span style="font-style: normal;"> you have
in such a disease…<o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/04184192512479947188noreply@blogger.com0