Health

Raising awareness on World Parkinson’s Day

Today is World Parkinson’s Day and Changing Times is bringing you a detailed guest post from registered nurse and health writer Rebecca Evans along with information about alternative methods of healing.

Original text by Rebecca Evans, edited by Annette Gartland.

Imagine not being able to tie your shoes or to write a check legibly because tremors cause your hands to shake so badly you can’t control them. Or, not being able to get out of a chair because your body won’t move. Or not being able to lift your foot.

These are just a few of the symptoms that more than one million people in the United States alone experience because they have Parkinson’s disease.

According to the Parkinson’s Disease Foundation, more than 11 million people worldwide now have the disease, including some well-known figures like the singer and songwriter Neil Diamond; the actor and philanthropist Michael J. Fox; former basketball player Brian Grant; and the Scottish comedian Billy Connolly. 

The world-famous boxer, the late Muhammad Ali, had Parkinson’s. 

Muhammad Ali’s daughter at the 2016 World Parkinson’s Congress.

Parkinson’s disease is a neurological disorder. It starts when the cells that produce dopamine (a chemical that passes information to and from the brain and controls movement) start to die. Our brain also produces several other chemicals that work together to control movement and one of these is acetylcholine. A lack of dopamine and acetylcholine causes Parkinson’s.

Nearly 2 percent of people over the age of 65 have Parkinson’s. It is thought to be a form of brain-related aging. People can get the disease at a much younger age and it is then known as early-onset Parkinson’s.

Controlling movement

Most people take the ability to move certain muscles for granted. Motor neurons telling a skeletal muscle to contract seems straightforward, but the control of purposeful movement is vastly more complicated than it seems.

Voluntary movement is regulated, in part, by neural activity in two interconnected regions deep in the brain: the basal ganglia and the substantia nigra.

The literal translation of substantia nigra is “black substance”. The nerve cells in this area of the brain have a dark pigmentation. Loss of neurons within the substantia nigra is a hallmark of the pathology of Parkinson’s.

The possible causal role played by oxidative damage in the substantia nigra is one strand of research currently being followed.

Causes of Parkinson’s

As is the case with many other neurodegenerative disorders, the vast majority of Parkinson’s cases occur spontaneously with no known genetic inheritance from generation to generation.

 

These spontaneous, or “sporadic“, cases make up more than 90 percent of all cases of Parkinson’s.  However, inherited forms of Parkinson’s have also been identified.

There are two types of inherited Parkinson’s: “autosomal dominant” and “autosomal recessive”.

Human cells maintain two copies of each of their chromosomes and thus two copies, or alleles, of each gene. In disorders where the presence of one defective copy of a single gene can cause disease, this is described as a ““autosomal dominant”. When a mutation is present in both alleles of a gene this is referred to as “autosomal recessive”.

Some genes may increase the risk of someone developing a disorder, but will not cause the disease to appear.

It has been suggested that harmful toxins in the environment are causing Parkinson’s, but more in-depth research is needed to confirm this.

Gene function

Several genes have now been implicated in the hereditary forms of Parkinson’s.  Understanding the function of these genes is helping researchers to identify which things go wrong, not only in inherited forms of the disease, but also in the non-inherited forms.

Studies of the proteins produced by the genes implicated in Parkinson’s indicate that alterations in certain cellular functions may be an important factor in the development of the disease.

Research has indicated that some of the genes are active in the same cell pathways. 

One study has shown that types of genes called PINK1 (PARK6) and Parkin (PARK2) act together in one pathway affecting mitochondria inside cells.

An earlier study showed that, under energetically stressful conditions inside a cell, DJ1 (PARK7) and Parkin (PARK2) can interact with one another.

Signs and symptoms 

At first, the symptoms of Parkinson’s disease are mild, but they become worse as the disease progresses.

Patients may have difficulty starting a movement or slowing it down. When walking, they have a shuffling gait. As balance is impaired, people with Parkinson’s may have a stooped position.

PwPs may have stiff muscles in their legs and some patients suffer from muscle pain.

Parkinson’s disease can also cause a loss of fine hand movements, which can make it difficult to carry out tasks that involve holding an object.

Many Parkinson’s patients experience tremors, which start when the person’s limbs are at rest.

Once patients start using the affected limbs, the tremors go away, but they can become worse when people are tired, stressed or excited. As the disease progresses, patients can have tremors in their feet, head, lips, and even their tongue.

Parkinson’s disease can also cause other symptoms and cognitive problems, such as memory loss, confusion, and dementia. Some people may have hallucinations, anxiety, or depression.

The disease is also known to cause a mask-like appearance in which patients do not display emotions on their face.

Other symptoms of Parkinson’s disease include constipation, oily skin, fainting, drooling, difficulty in swallowing, slowed speech, and a monotone voice.

Parkinson’s is a progressive disorder that usually starts on one side of the body before affecting the other. Signs and symptoms to look out for include:

  • muscle stiffness;
  • general slow movement, especially a slow walk;
  • tremors in your body, most notably in the hands and legs, or even in the neck and head;
  • changes in your speech, making it difficult for people to understand you;
  • a general loss of facial expressions;
  • poor posture and balance, making tripping over and falls more likely;
  • depressios, mood swings, and other behavioural changes;
  • memory loss and an inability to reason;
  • bowel and bladder problems;
  • difficulty swallowing and weight loss;
  • fatigue and sleep disorders;
  • feeling light-headed and having low blood pressure;
  • increased sweating and saliva; and
  • impotence.

Diagnosis and treatment 

There is no definitive test to check for Parkinson’s, so it is a case of monitoring the symptoms to make a diagnosis.

If Parkinson’s is suspected, a doctor will refer a patient to a neurologist, who will make an assessment and conduct MRI scans and blood tests to rule out other diseases.

Some patients are lucky enough to experience nothing more than a few tremors, while others find that the disease debilitates them and that they need help with all areas of their personal and daily lives.

Most treatments for Parkinson’s are supplemented with physiotherapy and speech therapy.

Medications

Certain of the medications used for Parkinson’s increase the level of dopamine in the brain and help help to alleviate such symptoms as tremor, bradykinesia (slowed movement), rigid muscles, impaired posture and balance, loss of automatic movements such as blinking and smiling, speech changes such as slurring and hesitating, and dementia.

The following medications are the main ones used to treat Parkinson’s:

Sinemet (levodopa plus carbidopa), which passes into the brain and is converted to dopamine. Carbidopa ensures that the levodopa doesn’t prematurely convert to dopamine outside the brain and is also thought to prevent nausea in some patients.

The benefit of levodopa wears off as the disease progresses, and medication adjustments are required. Sinemet tablets are manufactured in three strengths.

The most common side effects of Sinemet include dyskinesias, other involuntary movements, and nausea. Other side effects include chest pain, asthenia, cardiac irregularities, hypotension, orthostatic hypotension, hypertension, syncope, phlebitis, palpitation, dark saliva, and gastrointestinal bleeding.

Dopamine agonists, which mimic the effects of dopamine on the brain and cause neurons to act as if dopamine is present. They don’t work as well as levodopa, but their effects sometimes last longer.

Side effects include hallucinations, sleepiness, water retention, and low blood pressure when standing. Dopamine agonists may also increase the risk of compulsive behaviour such as hypersexuality, compulsive gambling, and compulsive overeating.

Monoamine oxidase B (MAO-B) inhibitors, which reduce the activity in the brain of the enzyme monoamine oxidase B (MAO-B), which breaks down dopamine.

Side effects include confusion, headache, hallucinations, and dizziness. The inhibitors cannot be used in combination with antidepressants, the anitbiotic Ciprofloxacin, Saint John’s wort, or certain narcotics.

The Michael J. Fox Foundation says that people taking MAO-B inhibitors (rasagiline or selegiline) should eat with moderation – but not eliminate

 foods that contain high concentrations of tyramine. MAO-B inhibitors increase tyramine, and the combination could elevate blood pressure. This list of foods to avoid includes:

  • cured, fermented, or air-dried meats or fish;
  • aged cheeses:
  • fermented cabbage;
  • soybean products, including soy sauce; and
  • red wine and tap beer.

Catechol O-methyltransferase (COMT) inhibitors, which block an enzyme that breaks down levodopa and is combined with carbidopa and levodopa therapy. Medications include:

  • Tolcapone (Tasmar), which has been linked to acute fulminant liver failure and is only used for patients who haven’t responded to other medication.
  • Entacapone (Comtan) doesn’t cause liver damage, but may increase side effects including involuntary movements, nausea, hallucinations, and confusion.

Anticholinergics, which inhibit parasympathetic nerve impulses by blocking the neurotransmitter acetylcholine’s pathway to its receptor.

In many patients, the drug’s benefits do not outweigh the side effects, which include fever, irregular heartbeats, anxiety, hallucinations, confusion, agitation, hyperactivity, and seizures.

Glutamate-blocking drugs, which limit the activity of glutamate, which is a neurotransmitter in the brain that is responsible for sending signals between cells. Abnormally high amounts of glutamate can overexcite nerve cells. 

Side effects include purple mottling of the skin and hallucinations.

Surgical treatments

While treatment with medication is always the first choice for Parkinson’s, surgical treatments have proven useful for many people. The earliest surgical treatments involved intentionally damaging specific structures in the brain that are involved in modulating movement control.

The idea behind this is that some of the symptoms of Parkinson’s – mainly the tremors – could be dampened. The procedures included pallidotomy (damaging a brain region known as the globus pallidus) and thalamotomy (damaging a specific area of the thalamus).

One option for treating Parkinson’s disease is Deep Brain Stimulation (DBS), which helps  with walking problems, tremors, slowed movements, rigidity, and stiffness.

DBD stimulators

In DBS, the surgeon implants an electrode, or lead, into the patient’s brain at specific motor locations. The lead connects to an extension wire, which attaches to a neurostimulator.

As the National Institute of Neurological Disorders and Stroke (NINDS) explains, the neurostimulator sends electrical impulses through the extension to the lead. The impulses block the abnormal nerve signals that cause tremor and other Parkinson’s disease symptoms.

study published in the New England Journal of Medicine and funded by the Department of Veterans Affairs  and the NINDS investigated the use of DBS for Parkinson’s disease at two different sites in the brain.

Surgeons implanted the electrode in the subthalamic nucleus and the globus pallidus interna, which are both parts of the basal ganglia system.

The study involved three hundred Parkinson’s patients, who were followed for two years.

Stimulation of both the subthalamic nucleus and globus pallidus interna provided benefits as both brain regions are linked to motor control pathways.

The researchers found that the most effective method was bilateral stimulation, i.e. both sites receiving electrical stimulation.

DBS does not treat the non-motor symptoms of Parkinson’s disease and may worsen them in some patients. Parkinson’s disease patients undergoing DBS still need to take medications for other symptoms.

(More complete information on Parkinson’s medications, including dosages) is available at GeriatricNursing.org.)

Managing Parkinson’s 

Exercise

A Parkinson Wellness Recovery! (PWR!) session in Tucson, Arizona, in the United States.

Exercise and physical therapy can have direct effects on the mobility of a person with a neurological condition such as Parkinson’s . 

Studies have shown that aerobic exercise augments blood flow in the body, which helps with the removal of waste products. This is especially important because one of the non-motor symptoms of Parkinson’s disease is constipation.

Exercise can also help boost survival factors in brain cells, and thus limit cell death in certain cases. 

Balance training can increase the number of synapses in the brain.

Other research has shown that moderate exercise can complement medication and help it work more effectively. 

Increased exercise is helpful to patients with Parkinson’s disease because the body responds to the increase in oxygen and glucose, both of which are critical to brain function, by forming new capillaries to deliver additional blood to nerve cells.

Exercise programmes need to be prescribed specifically for each Parkinson’s patient, however, as every case is different.

Aquatherapy has been found to have great benefits for people with Parkinson’s.

Speech, occupational, and physical therapy

Speech therapy focuses on people’s ability to swallow and talk and other functions that are related to a person’s vocal musculature.

Occupational therapy focuses on the activities of daily life, such as getting dressed and cooking.

Physical therapy concentrates on walking, overall mobility, balance, and general body strengthening.

A physio session for people with Parkinson’s in Sibu, Sarawak, Malaysia.

Promoting balance and strength

There are other activites that help people with Parkinson’s build strength and improve their balance.

Kayaking motions can help reduce stiffness in the trunk area of the body and sports like boxing give people practice in shifting their weight back and forth. 

Tai Chi focuses on whole body movement while dances such as the tango or the waltz can also be beneficial as they involve long, drawn-out movements.

People with Parkinson’s in Sibu practising tai chi.

One of Israel’s leading economists, Rafi Eldor, who has Parkinson’s, has become a proficient, impassioned, and now semi-professional ballroom dancer.

Multi-tasking activities, such as walking while counting backwards, are helpful as they employ motor function and cognition. 

Assistive devices

There are various assistive devices for Parkinson’s patients. These include the U-Step Walker, which contains a breaking mechanism to help control walking speed.

The breaking function enables users to stop before they start moving too fast, and fall.

The walker also uses lasers to provide visual cues in the form of a red line on the floor in front of the user.

Another device is the laser cane, which can help when Parkinson’s patients have trouble with freezing during walking. The line on the floor gives them a target to step through.

Cycling

Cycling has been shown to improve mobility, balance, and muscle control in patients with Parkinson’s. One explanation of the benefits of cycling might be that it uses a different part of the brain than walking, or perhaps the rhythmic pressure of the pedals on a patient’s feet may cue the nervous system to perform the cycling movement.

Research has shown that when people with Parkinson’s pick up speed on a tandem bicycle, they show markedly increased manual dexterity. 

It is possible that high-cadence cycling simulates normal brain activity, and this is a subject for further research.

Coping with Parkinson’s

Learn about your illness

Find the best doctors in your area and get second opinions. Get your test results explained. When it is clear that you have Parkinson’s, research the disease as much as you can. Go to the library for medical reference books. Consult Parkinson’s organisations and go to reputable websites for more information. Never stop learning about new treatments.

Communicate with your spouse, partner, or other caregiver

Communicating honestly and openly with your spouse, partner, or other caregiver is essential. Let those close to you know what you can and cannot do.

If you can no longer work full-time, you may need to reassess your finances. Sharing your personal feelings about Parkinson’s disease also enables you to maintain some control over the situation.

Holding feelings in can be stressful and harmful. You need your significant other or personal caretaker to be one of your biggest supporters, both physically and emotionally.

Build up a strong support network

It is also important to be connected to a wider circle of friends and relatives. These bonds help people with Parkinson’s cope on a day-to-day basis.

Isolation is particularly damaging when you have a debilitating neurological illness.

Strengthen the bonds with your support network to get help with errands, childcare, and driving, etc.

For networking on a deeper level, you can join a Parkinson’s support group. Bonding with people who are going through the same thing as you are, and truly understand your plight, can be soul-soothing.

RESOURCES:

The Aging Parents and Eldercare website carries informative articles, comprehensive checklists, and links to key resources that make it easier for relatives who are caregivers to quickly find the information they need.

The American Parkinson Disease Association (APDA) is the largest grassroots Parkinson’s network in the world. Its members work tirelessly to provide the support, education, and research that helps those impacted by Parkinson’s disease live life to the fullest.

In 2014, the Bachmann-Strauss Dystonia & Parkinson Foundation  formed a research alliance with the Michael J. Fox Foundation and established The Bachmann-Strauss Prize for Excellence in Dystonia Research to broaden public awareness and recognise key scientific discoveries about dystonia.

The Davis Phinney Foundation was created in 2004 by the Olympic medalist and retired professional cyclist Davis Phinney to help people with Parkinson’s live well.

The Northwest Parkinson’s Foundation’s mission is to improve the quality of life of people affected by Parkinson’s through raising awareness, education, advocacy, and care.

NeuroTalk Communities is an online forum where people with neurological and brain disorders can find support.

PD Movement Lab is a blog where people with Parkinson’s can pick up innovative and practical tips for increasing their mobility and be inspired by the stories of PwPs doing marathon runs, biking across the state of Iowa, boxing, skiing, running, and juggling.

Cycling enthusiast and explorer Nan Little not only crossed Iowa six times, she hiked eight days through the Himalayas to the Annapurna Base Camp in Nepal, and climbed to the peak of the highest mountain in Africa, Mount Kilimanjaro.

PD Movement Lab helps PwPs foster a renewed sense of self and learn how they can live active, engaged lives.

The Parkinson’s Foundation’s mission is to make life better for people with Parkinson’s.  It promotes improved care and has been engaged in research that has led to breakthroughs in treatment. “In everything we do, we build on the energy, experience and passion of our global Parkinson’s community,” the foundation states.

The Parkinson Association of the Rockies connects people with their community, provides critical resources, and empowers PwPs via support groups and exercise classes. It enables home consultations with licensed clinical social workers.

The Parkinson Alliance organises the Parkinson’s Unity Walk, which is the biggest one-day community fundraising event for Parkinson’s in the world, and the Team Parkinson events.

Radio Parkies is a radio station run from Belgium, which was launched in 2010 and now has DJs in 12 countries: the US, Australia, Belgium, Denmark, the United Kingdom, Germany, Spain, Romania, Iceland, France, Malaysia, and Nepal.

The complete, unedited version of Rebecca Evans’ article can be found At GeriatricNursing.org.

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Alternative treatments for Parkinson’s

By Annette Gartland

Exercise, relaxation therapies, and a good diet are all important for people with Parkinson’s and there are other alternative treatments that have been shown to be beneficial.

One of the main ones is the use of medical cannabis, which is used in the form of cannabidiol (CBD) oil.

The use of medical cannabis is still illegal in many countries of the world, however.

Mexico, Brazil, and Paraguay have approved the use of CBD as a prescription medication, and dozens of other countries allow its use as a dietary supplement.

In December 2017, the World Health Organisation recommended that CBD should not be scheduled as a drug.

Information from cannabis.info:

Cannabinoids are chemical compounds found in the cannabis plant that interact with receptors in the brain and other parts of the body. Tetrahydrocannabinol (THC) is the most widely known compound, and is the one that gets recreational users high.

CBD oil is made using either hemp or cannabis. Hemp is highly fibrous, is used  industrially, and contains minimal THC to comply with drugs laws, whereas cannabis is grown specifically for its cannabinoid content.

There are two types of CBD oil: black and gold. Black oils are extracted with very little processing, and are cheaper than golden oil, but contain far more impurities because of the extraction process used so are not recommended for medicinal use.

A much more advanced extraction process, which separates all of the compounds in the cannabis plant, is used to produced golden oils.

Golden oil also undergoes a process of full decarboxylation which turns the inactive cannabinoid into an active CBD compound that has medicinal value.

The non-profit educational news service Project CBD cites numerous studies indicating the various benefits of cannabidiol for people with Parkinson’s.

Nisha Whitely wrote in an article for Project CBD that the endocannabinoid system and digestive imbalance play major roles in Parkinson’s disease.

She made the following points:

  • Cannabinoids have neuroprotectant, anti-oxidant, and anti-inflammatory properties that can be beneficial for managing PD.
  • Various combinations of CBD, THC, and THCV (tetrahydrocannabivarin) may provide relief for Parkinson’s symptoms.
  • Scientists at the University of Louisville School of Medicine in Kentucky have identified a previously unknown molecular target of cannabidiol (CBD), which may have significant therapeutic implications for Parkinson’s disease.

Acupuncture

Acupuncture has been shown to significantly alleviate the symptoms of Parkinson’s, for instance muscle stiffness. It gets energy flowing better in the body and can have a relaxing effect, thus improving general well-being.

Homeopathy

The basic principles of homeopathy were set out in the book “Organon of the Art of Healing”, published by German physician Samuel Hahnemann in the 19th century. He stated that a remedy could cure a disease if it produced similar symptoms to those of the disease in a healthy person.

The remedies are activated during their preparation by vigorous shaking, known as succussion.

Homeopathic remedies go deep. They don’t just work on a physical or mental level; they affect the etherical body of the person taking them.

Homeopaths treating people with Parkinson’s report success in reducing the patient’s spasms, trembling, and limb stiffness. However, for improvement to be durable, the treatment needs to be continued over a signifiant length of time, for at least six months to a year.

Homeopathic treatment is tailored to the individual patient. Homeopaths use a constitutional remedy that matches the patient’s overall sensitivities and symptoms and works on the origins of ailments rather than just treating the acute situation.

Essential oils

Using essential oils can reduce and calm some of the symptoms associated with Parkinson’s disease, such as depression, sleep disturbance, skin inflammation, and digestive problems.

Helichrysum and frankincense oils have been shown to reduce inflammation of the brain, and vetiver oil has been found to reduce tremors.

It’s recommended to massage the scalp and back of the neck every night with 1-2 drops of frankincense oil diluted in half a teaspoon of fractionated coconut oil or olive oil.

It is important to use unadulterated essential oils from a reputable supplier.

Diet is an important factor in managing Parkinson’s and people with the disease are advised to avoid processed foods and eat healthy, balanced meals.

There is advice on the Michael J. Fox Foundation’s website:

  • Eating fruits and vegetables may help keep you energised and hydrated. Fiber-rich foods and fluids may ease symptoms of constipation or low blood pressure.
  • Your medication regimen may impact your diet, too. Adjusting the timing and composition of meals might allow medications to work better, and you may need to avoid specific foods to prevent side- effects.

Meng Chuo Wong, from Sarawak, Malaysia, founded the Sibu Parkinson Society and is a Parkinson’s ambassador. He went to the World Parkinson’s Congress, in Portland, Oregon, in the US in 2016 and plans to attend the congress in Kyoto, Japan, in 2019.

Wong’s attitude to Parkinson’s is that it is not a disease to be fought, but to be faced. He prefers to talk about People with Parkinson’s (PwPs); “people with shortcomings, not people who are sick”. He does tai chi and derives great benefit from physio and water therapy and speech therapy sessions.

Wong has found that acupuncture has helped relieve his symptoms and he is now working with a practitioner of the ancient healing system, Yellow Emperor’s Inner Classic (YEIC).

According to YEIC, there are tell-tale signs well before major diseases develop.

Malaysian YEIC practitioner Andrew Wong says these tell-tale signs usually cannot be detected by modern medical tests, but can be felt and sensed by the people concerned. “Such tell-tale signs are summarized in YEIC as yin-yang imbalance.”

YEIC sees a human being as an integrated whole, made up of several subsystems, with each subsystem consists of various parts. The functionalities of the subsystems are linked

In the case of dry eyes and blurred vision, whether as an early tell-tale sign or a symptom in full-blown Parkinson’s, a YEIC practitioner will point to the relationship of the eyes to the liver subsystem. Fluid relates to the kidney subsystem.

The liver and kidney subsystems are related to certain emotions and consciousness.

“This awareness helps the patient to not only consider environmental or genetic factors, but also his or her inner self, over which he or she needs to have control,” Andrew Wong said.

“YEIC views such therapies as exercise, massage, drumming or other forms of music, and acupuncture as integral parts of the healing system and they should not be practised or administered separately.

“Different people with imbalanced yin and yang respond differently to different therapies. Hence, in YEIC, there is the principle of treating the whole person, not just the symptoms.”

One should be in full control of one’s consciousness, Andrew Wong says, “not just the medicines one is taking and the activities one is carrying out”.

Andrew Wong says that all therapies and medication should be aimed at restoring the functionalities of the body’s subsystems, and hence the well-being of the person as a whole.

Therapeutic activities, he says, should not be practised in a fragmented way. “It is important that people are constantly sensing bodily sensations and are observing the reactions that indicate there needs to be adjustment in the various therapies.”

Food therapy is very important, Andrew Wong says. “According to YEIC, the foods that we consume daily act as medicines for the functionalities of the bodily system.

“YEIC food therapy is based on 5,000 years of practice in China. Western science about diet dates back only a few hundred years.”

Reiki can also benefit people with Parkinson’s. It relaxes the person, harmonises his or her energy, and raises the person’s vibratory level, thus assisting self-healing.