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Parkinson's Disease

Body Talk

Body Talk

Originally posted blog by Murf on pdjunction.

Published by: IrritaTim (Murf) on 5th Nov 2011 | View all blogs
by IrritaTim (Murf)

Body Talk – Exercise and
Parkinson’s

I have a background in engineering and
to me the body is a hugely complex machine.

Let me relate a short story – a factory
had a machine that was critical to their manufacturing output. One day it broke
down and despite many people spending many hours trying to carry out repairs it
just wouldn’t run. The engineer that had designed and built it had been made
redundant and was contracted on a consultancy basis to come back in and help to
make it work. He spent a couple of hours and then took a stick of chalk out of
his pocket and put an “X” on the machine indicating the part that was the
problem. The machine was soon up and running so the engineer submitted his
invoice – £50,001. The management team queried this and asked for a breakdown to
which he replied that the £1 was for the stick of chalk. And the £50,000?
Knowing where to put the “X” came the reply.

In a nut shell no one has really known
where to put the X in PwP which has resulted in a bit of stagnancy with
treatments, however, there are some really exciting developments with current
medical research and I strongly believe that the X will soon find it’s true
location.

In the meantime we keep popping the
pills.

Pill popping aside it has been shown
that above everything else exercise has great benefits for PwP. Now I’m not a
particularly good example as I tend to take things to the extreme. Remember,
something is better than nothing. If I fail to exercise (work sometimes gets in
the way) my body / mood sure tells me about it later in the day. My body craves
exercise and if I can’t do it at the gym then I have to make do with the urban
gym! Whats an urban gym I hear you say…… it’s called not taking the car to
get the paper, walking up / down stairs rather than taking a lift or escalator,
travelling on a bus – try going up stairs when it’s moving, great for balance,
don’t phone a colleague – pop over and talk face to face. Go for a lunch-break
walk. You get the idea, something is better than nothing. Keep on
moving!

Your body is actually a great
communicator of what it needs. Unfortunately we are not great listeners and
sometimes don’t interpret the signals clearly enough. For example – you feel
hungry. Nine times out of ten you are more than likely to be thirsty. Have a
glass of water and if you still feel hungry ten minutes later chances are that
your body needs food. It’s a similar thing with exercise, your body needs
periods of increased metabolism and pays you back by leaving a feeling good
sensation where you’ll be more alert (you might feel a bit tired to
start).

Try exercising / walking to music, it
sometimes seems to create a brain circuit by-pass that somehow makes it all seem
possible. Alternatively if you belong to a gym have a go at group exercise
classes and ask if you can have music playing while you exercise. The audible /
visual stimulation you get from a class can be really
beneficial.

Just a quick note about hydration. Maintaining the correct fluid balance in our
bodies is so important and has a significant effect on how it performs. After
exercise rehydrate properly and look to replace salts/minerals. Sorry about this
but you should pee a champasgne colour, darker and you are de-hydrated, lighter
and you are nearly drowning!

There are lots of exercise
alternatives, it’s all about finding something that you enjoy and works for you.
Try different things and listen to what your body is telling
you.

In no particular
order:

Tai Chi                                                       Group

Hydrotherapy / Aqua Arobics               Group

Nintendo Wii
Group or solo

Gym Classes
Group (a trainer will help personalise a routine for you)

Dancing

Group

Cycling
Group or
solo

And many more

Interestingly all the exercises listed
above are generally group based and all offer audible and visual
stimulation.

So, exercise is great for PwP, can
possibly slow progression, is possibly neuroprotective, improves posture and
works for mind, body and soul. Go for it!

Before you begin an exercise regime
consult a doctor or your specialist and they’ll be able to give you advice based
on your medical history.

 

 

November 20, 2013 Posted by | Exercise | , | Leave a Comment

I’m Fine!

Walking down my local high street last Tuesday, on autopilot, lost deep in thought on some earth shattering subject like the scandalous state of potholes versus the whacking great local authority’s pensions bill, both funded by my Council Tax payments, I was oblivious to the world and to the individuals sharing my bit of pavement.

“Hi there! How’s it going?” asked a voice above the traffic noise, words that started my exit from my inner world. A good slap on the shoulder hastened the exit.

“Fine,” my subconscious replied out loud on my behalf.

I became aware of my assailment’s identity as Wee Jim the Painter, who, without the slightest invitation from me to go beyond the initial exchanges of greetings, proceeded to monologue on all the people scrounging from the state. He included such low life like the unemployed (me), the disabled (me), and the English (me). Paranoia was starting to take hold of me.

As I stood there not listening to Wee Jim, I pondered on the word fine. “How’s it going?” or “How are you today?” or similar questions are always answered by me as “Fine!” or, if I’m in playful mood, I drag out the syllables of “Fan-tas-tic!”

Last Tuesday I was far from fan-tas-tic, things were not going well and to reply to Wee Jim’s greeting as “Fine!” was nothing short of a lie. Each limb had aching bones, I was walking slowly with uncertain, clumsy feet, my speech was slurred, I couldn’t get the small change out of my pocket and I craved sleep.

In the newsagent, trying the simple act of buying a newspaper held up the queue of busy people behind me: I lost the battle with my pocket trying to extract a pound coin, then dropped my wallet which emptied some of its content on the floor. The assistant took the opportunity to serve some of her normal, sane customers whilst below I fought with the floor to release my credit card from its wet and dirty grip. Having won that battle, and extracted a twenty pound note from my wallet in preparation for payment, I rose to my normal height.

The assistant ignored me and her eyes went to the next in the queue – which turned out to be the right thing to do if not for the right reason. I had stood up too quickly and was suffering nausea and the world was becoming rather grey. In short I was fainting! (Fainting in public is not advisable – believe me – I’ve been several times. But will leave that for another day).

Fortunately I was able to hang on to the counter and avoid collapsing in a heap. I was now aware of the assistant’s horrified look in my direction, no doubt I was a funny colour. She snatched the paper out of my hand, scanned it, and thrust it back in my hand, along with a fist full of change and the receipt. I left the shop clutching this as I was in no fit state to resume battle with pockets.

So all was fine!

Looking back, I ask why hadn’t I told Wee Jim how things were really going for me? Why not turn to the people held up by me in the newsagent and apologise for holding them up and tell them that I have Parkinson’s? Would it do any good? Possibly.

Wee Jim might gain an understanding of what it’s like to live with PD, challenge his prejudices. His ability to get a point across is strong, pity he’s not on our side. I doubt it. Noel coward defined a boor as any person who, when asked how they were, proceeded to tell you. Wise words.

Strangely, upon reflection, I feel I was at fault in the newsagents. Like many Parkies, I like to look “normal” – I don’t have many of the obvious signs like a tremor. Clumsy and slow – yes. The assistant wasn’t naturally aggressive, probably just stressed out by an awkward customer who was possibly under the influence of drink. In these situations where our PD is taking control, I believe we have a duty to let others know. How can we expect understanding if we don’t let them know we are far from normal?

Hey, I’ve got PD, the sun is shining and today I really feel fine!

February 15, 2012 Posted by | Self Management | | Leave a Comment

GUT INSTINCT perhaps its time to change the focus

We’re all familiar with the term “gut feeling”. As it turns out, the term may be more apt than we realize. In recent years, research has increasingly identified the role the gut can have on mood and behavior, leading many scientists to refer to the gut as the “second brain”. Now, for the first time, researchers have found conclusive evidence that conditions such as anxiety can originate in the gut instead of the brain.

http://www.tbyil.com/Anxiety_in_the_Gut.htm

Wait for it…Oh dear its pooh well thats what the guts about I guess,I like the humour interjection in this snippet  read on and smile.

I’m not making this up.

A few years ago, John Gillies had trouble picking up his grandchild. He would stand frozen, waiting for his Parkinson’s disease to relinquish its hold and allow him to move. Then in May 2008, Gillies was given antibiotics to treat constipation, and astonishingly his Parkinson’s symptoms abated. What on earth was going on?

Thomas Borody , a gastroenterologist at the Centre for Digestive Diseases < http://www.cdd.com.au/ > in New South Wales, Australia, put Gillies on antibiotics because he had found that constipation can be caused by an infection of the colon. “He has now been seen by two neurologists, who cannot detect classic Parkinson’s disease symptoms any more,” says Borody.

Borody’s observations, together with others, suggest that many conditions, from Parkinson’s to metabolic disorders such as obesity,might be caused by undesirable changes in the microbes of the gut. If that is true, it might be possible to alleviate symptoms withantibiotics, or even faecal transplants < http://www.newscientist.com/article/mg20827911.100-taboo-transplant-how
-new-poo-defeats-superbugs.html > using donor faeces to restore the bowel flora to a healthy state.

Yes.  Poop transplants.

To test a possible link between the gut and Parkinson’s disease, Borody and neurologist David Rosen of the Prince of Wales Private Hospital in Sydney are embarking on a pilot study, hoping to recruit people with both constipation and Parkinson’s. The plan is first to treat them with antibiotics and eventually with faecal transplants. They hope both faecal transplants and antibiotics will treat gut infection and hence Parkinson’s.

Rosen is cautious: “I wouldn’t for one minute be suggesting that this is the next cure,” he says. But the idea that Parkinson’s could be caused by bacteria dovetails with work by neuroanatomists Heiko Braak and Kelly Del Tredici at the University of Ulm in Germany.

There is no one more devoted to finding a cure for Parkinson’s that yours truly.  I’ve undergone experimental brain surgery as part of a clinical trial looking for new and better ways to treat, reverse, and perhaps cure Parkinson’s.

But no.  No.  No.

No poopyplants for Billy!

Slate magazine takes a look at this phenomenon from a non-parky poop POV.

The donor takes a stool softener the night before and then gives a full morning bowel movement to the recipient, who takes it to a doctor for screening. It’s important to make sure that the sample doesn’t contain any parasites or other pathogens, such as hepatitis, salmonella, or HIV. Once the transplant material has been cleared, the doctor mixes it with saline to make about a pint of liquid with the consistency of a milkshake. This is pumped into the patient’s colon using a colonoscope or endoscope, or siphoned into the stomach via a nasogastric tube. (The latter method is considered more dangerous, since there’s a chance feces will end up in the lungs. Colonoscopies carry their own risk of bowel perforation.)

Eeew.  I will never look at a chocolate malt the same way again!

The Slate article continues…

And then there’s the do-it-yourself crowd. All you need is a bottle of saline, a 2-quart enema bag, and one standard kitchen blender. Mike Silverman, a University of Toronto physician who wrote up a guide to homespun fecal transplants for the journal Clinical Gastroenterology and Hepatology, says it’s entirely safe to do the procedure this way, provided that a doctor gets involved at some point to screen the donor sample. He felt he needed to draw up the instructions because administrators at his hospital wouldn’t allow their doctors to perform a procedure that hasn’t been validated in a large, peer-reviewed study.

My recommendation?  Don’t try this at home.

Am I saying this won’t work?  Nope.  Not saying that.  Just saying that if you come after me with the idea of putting someone else’s poop in my colon, you’d better bring some ropes, some sedatives, and a lot of strong friends to hold me down.

See, fact of the matter is, I’m already irritable — even WITHOUT the Parkinson’s disease.

I take shit from NO ONE!

written by parky pundit link below

http://www.wellsphere.com/parkinson-s-disease-article/fecal-transplants-might-cure-pd-no-sh-t-and-i-mean-that/1343322

January 23, 2012 Posted by | Parkinsons Disease | , | Leave a Comment

Educate to Medicate

Dont be afraid of medication,it just one tool to use,more powerful

Educate yourself and others,cure or not a quality life can be had.

Western society, science and medicine have a very long tradition of discrediting and wrongly looking down at the others science and natural approaches to healing the entirbody instead of treating symptoms.

Chinese medicine has a history of over 6,000 years and it treats the patient by focusing on preventing disease in the first place by keeping the entire body healthy in every way, mind, vitality, energy, immune system, etc. Modern medicine still treats chinese medicine as second class rather than a potential partner.

Perhaps after reading the story below thern and chinese medicine at the time they met the Chinese and how it attempted to treat King Charles II in 1685:

“The king was bled to the extent of a pint from a vein in his right arm. Next, his shoulder was cut into and the incised area was sucked of an additional 8 oz of blood. An emetic and a purgative were administered, followed by a second purgative, followed by an enema containing antimone, sacred bitters, rock salt, mallow leaves, violets, beetroot, camomile flowers, fennel seeds, linseed, cinnamon, cardamom seed, saffron, cochineal and aloes. The king’s scalp was shaved and a blister raised. A sneezing powder of hellebore was administered. A plaster of burgundy pitch and pigeon dung was applied to the feet. Medicaments included melon seeds, manna, slippery elm, black cherry water, lime flowers, lily of the valley, peony, lavender and dissolved pearls.

As he grew worse, forty drops of extract of human skull were administered, followed by a rallying dose of Raleigh’s antidote. Finally, bezoar stone was given.

“Curiously, his Majesty’s strength seemed to wane after all these interventions and, as the end of his life seemed imminent, his doctors tried a last-ditch attempt by forcing more Raleigh’s mixture, pearl julep and ammonia down the dying king’s throat. Further treatment was rendered more difficult by the king’s death.”

We can be sure that the physicians gathered around the king’s bed were all leaders in their particular field–royalty and presidents do not settle for anything less.

To be continued

January 15, 2012 Posted by | Parkinsons Disease | | Leave a Comment

Gut pathology in Parkinsons Disease

The function of the gut and pathology of evidence is gaining credibility.

Braak’s staging scheme is that the areas of the nervous system littered with Lewy bodies at the earliest stages of disease could account for the non-motor symptoms. The staging system, , “has drawn attention to the damage in other transmitter systems—in other words, apart from and before the nigrostriatal system. In addition, it can serve as a framework for relating the pathology in other parts of the nervous system (gastrointestinal tract, spinal cord, and so on) to that in the brain.”

The focus on the substantia nigra faces challenge, most PD patients have additional, non-motor symptoms, and PD is coming to be understood as a much broader disease.

Chronic constipation, loss of smell, and REM sleep disorders often occur before the motor

problems (O’Sullivan et al., 2008 and ARF related news story). A large epidemiological

study, the Honolulu-Asia Aging Study, showed that men who reported less frequent

bowel movements had a significantly higher risk of developing PD within the next 24

years (Abbott et al., 2001; Abbott et al., 2003).

One of the attractive features of Braak’s staging scheme is that the areas of the nervous system littered with Lewy bodies at the earliest stages of disease could account for these non-motor symptoms. The staging system, wrote Braak in an e-mail “has drawn attention to the damage in other transmitter systems—in other words, apart from and before the nigrostriatal system. In addition, it can serve as a framework for relating the pathology in other parts of the nervous system (gastrointestinal tract, spinal cord, and so on) to that in the brain.”

Read on————–

http://www.alzforum.org/new/pdf/ParkinsonsSeries.pdf

January 13, 2012 Posted by | Anatomy-gut | | Leave a Comment

Parkinsons Disease beginings,gut implicated.

Brain-gut axis dysregulation

Novel brain-gut neurotransmitter imaging and functional brain imaging show dysregulation of the brain-gut axis at the peripheral, spinal, and cerebral levels, all of which contribute toward the symptoms of Gastro Intestinal Disorders. particularly IBS Irritable bowel syndrome

Neurotransmitters such as serotonin, norepinephrine(Drug information on norepinephrine), corticotropin-releasing factor, and opioids modify both motility and sensation in the gut. Therapies that target the CNS are commonly used because of their effect on the serotonin and norepinephrine pathways, which cause direct modulation on all levels of the brain-gut axis. Serotonin and norepinephrine have been traditionally used to manage psychological and psychiatric disturbances that are commonly associated with GI disorders.6

 

Treatment of IBSs with psychiatric agents has grown significantly in the past 2 decades. Close to 15% of patients with IBS are offered an antidepressant, and in many of these patients, a gastroenterologist initiates the treatment,still regaded by some schools as aquestionable action

Past and Present

Since the days of Descartes, there has been a clear delineation in Western medicine between functional and organic conditions in the biomedical model of medicine.Using traditional diagnostic techniques, such as endoscopy and imaging, IBS were often considered at the functional end of the functional-organic spectrum. This would necessarily imply an absence of detectable structural abnormalities.

In the past 2 decades, there has been a great surge of research on motility, brain imaging, and neurotransmitters, which has given us the brain-gut axis—a working formulation now used ubiquitously by all international research groups.The pathophysiological understanding of the organic aspects of IBS has increased to such a degree that there is some debate whether we can still strictly call it a functional disorder.11 The time of Descartes is being challenged, but unfortunately the negative stigma associated with functional conditions still lingers in the minds of many clinicians and patients.

 

One of the most clinically useful ways to conceptualize IBS is with the biopsychosocial model. In this model, the influences of the CNS (at the spinal and cerebral levels), autonomic nervous system, and hypothalamic-pituitary-adrenal axis result in sensory and motor dysfunctions of the GI tract in a bidirectional way.

The trigger can be peripheral (eg, GI infection, abdominal surgery) or central (eg, sexual abuse, personal losses, separation, deprivation). Psychosocial factors, such as alexithymia, catastrophization, ongoing work stress, and life events, often play an important role in the perpetuation and clinical manifestation of IBS through centrally mediated pathways.

Persons with IBS commonly have a history of major stressful life events; those at the severe end of the spectrum may also perpetuate their symptoms by means of maladaptive illness behavior–like catastrophizing This groups inability to incorporate and successfully deal with these psychosocial factors leads to more gastroenterology referrals and needless investigations at great cost, both financial and in quality of life.

Stress can enable IBS symptoms. Likewise, chronic IBS symptoms can lead to physiological effects. In addition, stress aggravates motility, lowers pain thresholds, and increases gut inflammation.

It  is suggested that Patients with severe and  symptoms of IBS may have central dysregulation of their pain regulatory pathways (central sensitization).16 Because many of these pathways are activated by the same neurotransmitters  (eg, serotonin, norepinephrine, opiates)

Neuroplasticity

Perhaps the most striking rationale for the use of centrally acting treatments in recent years is the concept of neuroplasticity. Antidepressants, and possibly psychotherapy, can promote neurogenesis (ie, the regrowth of neurons) following the loss of cortical neurons in psychiatric trauma. Functional MRI studies have shown reduced neuron density in cortical brain regions involved in emotional and pain regulation in patients with pain disorders and with IBS. Pain and psychological trauma (and particularly the combination of both) can be neurodegenerative—much like Alzheimer disease and Parkinson disease are.


In these psychological and pain conditions, antidepressants and other CNS-targeted agents and methods might offer some remedy by stimulating an increase in the levels of brain-derived neurotrophic factor following treatment. Brain-derived neurotrophic factor is a precursor to neurogenesis, and with prolonged treatment, neural increases that correlate with the degree of recovery from depression are seen.

 

The duration of antidepressant treatment also correlates with decreased relapse frequencies and recurrence of depression. These findings provide insight into neuronal growth regulation in key areas of the central pain matrix and provide new and important opportunities for research and patient care using antidepressants for the treatment of IBS

 

Summary

As our understanding of the pathophysiology and psychopathology of IBS grows, it is becoming evident that the use of centrally acting psychopharmacological medications and concomitant psychotherapy should play an ever-increasing role in its treatment. Psychosocial factors play a key role in the etiology of IBS, especially at the more severe end of the spectrum Psychiatrists have an important role in understanding and treating patients.

November 20, 2011 Posted by | Nutrition | | Leave a Comment

The contradictory complexity of Parkinson’s disease

How you manage your  condition when not under direct medical supervision makes a difference to your quality of life, your general health, and your usage health services.
Self-management takes time and demands interest in short you need to educate yourself  in  the many complexities related to your illness,

As I see it,youve got it. its not  going  to go away,your its manager.This was not somewere I suddenly arrived at, it was years after diagnoses and living with PD now it lives with me.
Our health care management colleauges GP Neuro,PDnurse.Physiotherapist,prescribe care by tradition but are increasingly the providers educating and enabling self-management. By  definition this is the tasks that individuals must undertake to live well with 1 or more chronic conditions.

These tasks include having the confidence to deal with the medical and emotional management of your condition.This is the difficult bit,in life without an illness  its not easy to achieve.In our present system its not really promoted,or financially supported,making people well isnt a good long term investment.Dont mistake what I am saying is not intending to undervalue medication or health professionals but it most certainly is easier and safer to prescibe care,than unleash you on yourself.

Accept we must not all want to choose this path and those who pursue it will graduate at different times,be it ten years or two .Patients are afraid to self manage,needing the reassurance of approval and the safety of direction from professionals.We forget a most important role,the patient as the educator,of professionals as well as fellow sufferers.There is some development in this direction.but in the main it is under-resourced and under researched.

Self-management programs are an effective complement to the work provided by health care teams..Programes location, staffing, and the extent of personal interaction between self-management educators and patients are fragmented and diverse
The overall objective of self-management programs should be to support and influence by educating the behaviors of all participants. While variation will always exists regarding the implementation of such programs ultimatley I feel you cant manage someones lfe but supporting choices is important empowering wellness,disempowers illness,live long live well,be happier.

Dont sit back and wait for the system TO DELIVER do a little DIY.
Manage illness
Take action,
Face problems,
Make choices.

Your on the way to Personal “Wellness ”.
Simple and easily grasped and accessible strategies,we know them ,but old habits die hard, so be it, choice made,I am not the mistress of self sacrifice.I know whats good for me whats not so I compromise.
Healthy diet,
Exercise,
Sleep,

Reset you goals, rebuild your dreams

It has been shown that’ Sharing responsibilities with patients and emphasizing the vital role patients play in improving health-related habits and self-managing their health conditions are key issues, regardless of diagnoses’.
One study found that 4 months after participating in  patients with diabetes mellitus showed significant improvements in eating breakfast, mental stress, aerobic activities, shortness of breath, and pain.
The way forward with this one ,well its upto you,and whatever you choose be it right for you at this moment tommorow may be different,if its the only exersise you undertake choice is always your own.

I cant be evangelical, but I can still improve my health.Im never going to win the health olympics but then I wouldnt enter,Im not a competitor.I prefer a fun run,thats mylevel of participation,my choice today,but the path unkown.

November 16, 2011 Posted by | Self Management | , | Leave a Comment