Public perception of Parkinson’s disease

Parkinson’s disease (PD) is a neurodegenerative disease characterised by motor and nonmotor symptoms, both of which negatively impacting patients’ quality of life (Ma et al. 2016). Tremors, rigid facial expressions and cognitive difficulties are among other common symptoms experienced by patients (Jankovic, 2008). A significant one experienced by both patients and caregivers that most people tend to overlook is the stigma that arises as a results to those common symptoms. Such a phenomenon affects everyday life and patient’s subjective and relational perception which may lead to frustration, social isolation and consequently negative health effects.

Stigma refers to the negative attitudes (prejudice) and negative behaviour (discrimination) toward people who appear different from what is considered normal and accepted. This can be due to appearances or behaviours of the stigmatized person which may result in shaming, isolation and possible threatening of their personal identity.

Since many people are unaware of the physical demonstrations of PD, stigma may arise due to visible symptoms experienced by people living with PD (Hermanns, 2013). Shakiness, the inability to talk or to stand still as well as cognitive decline lead to negative misconceptions in public environments. Some patients share instances of being characterized as lazy or “looking a little slow”. A few described being mistakenly perceived as drunk due to the uncontrollable motor symptoms or the inability to complete tasks.

Stigma may also be a result of relational and communication problems. In addition to being misperceived due to physical behaviours such as tremors, facial muscle rigidity makes it difficult for people living with PD to express themselves and convey their beliefs. This causes progressive frustration, especially with family members or caregivers who have replaced them in discussion or decision making (Chiong-Rivero et al. 2011). Consequently, it is common for patients to complain about not receiving the right time to express themselves and therefore not receiving the adequate help or treatment.

Nonetheless, stigma is not only linked to observable characteristics of PD patients but also to the loss of functionality. Stigma may also be self-attributed when patients develop a physical dependency and lose autonomy. Another reason for social stigmatization is due to the common belief that PD is a disease only for old people. This prejudice is strong in society, including family members.

Altogether, stigma result in patients feeling ashamed and embarrassed which often leads to isolation and therefore declined quality of health.
It is crucial that patients are in contact with their friends and family so that their physical and social needs are met. By doing so, it may guide health care professionals and caregivers to a more fitted and tailored manner of treating the patient.

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Photo courtesy of AARP The Magazine. Retrieved from: https://www.michaeljfox.org/foundation/news-detail.php?michael-fox-on-living-with-parkinson-to-me-hope-is-informed-optimism


“[Feeling] better, just empowered, knowing there were people who understood what I was going through.”

– Michael J. Fox

 

Stereotypes, misunderstandings, shame, isolation, discrimination, stigmatization are a silent, partly visible and partly invisible phenomenon which is necessary to be considered. Disease progression and management are surely affected by stigma, since it may interrupt treatment but also may lead to depressive symptoms (Oehlberg et al. 2008). Furthermore, stigma is intrinsically complex and requires better understanding; it is important that people, who are unfamiliar with chronic diseases, are reached and educated.

 

We therefore recommend the following for both people living with PD and their loved ones:

    • Reach out for social support. It was found that family support is important in order to confront difficulties that arise in daily life.
    • Participate in mutual support groups. There is strong evidence that stable, sensitive, active and reliable social networks protect people from other illnesses,  provide support and guidance, positively impact on the timely and appropriate utilization of health services, accelerate recovery, and improve survival rates (Foppa et al. 2018).

 

  • Raise awareness. During the month of April, the Parkinson’s Disease Foundation (PDF) campaign, empowers patients and their families, researchers, health professionals and others to raise awareness.

 

 

References:

  • Chiong-Rivero H, Ryan GW, Flippen C, Bordelon Y, Szumski NR, Zesiewicz TA, Vassar S, Weidmer B, García RE, Bradley M, Vickrey BG. Patients’ and caregivers’ experiences of the impact of Parkinson’s disease on health status. Patient Relat Outcome Meas. 2011. 2011(2):57-70.
  • Foppa AA, Vargas-Peláez CM, Buendgens BF, Chemello C, Charmillot FMP, Marin M, et al. Perceptions of Individuals with Parkinson’s Disease about Quality of Life. Rev Cienc Salud. 2018. 16(2):262-278.
  • Hermanns M. The invisible and visible stigmatization of Parkinson’s disease. J Am Assoc Nurse Pract. 2013. 25(10):563-6.
  • Jankovic, J. Parkinson’s disease: clinical features and diagnosis. J Neurol Neurosurg Psychiatry. 2008. 79(4):368-76.
  • Ma HI, Saint-Hilaire M, Thomas CA, Tickle-Degnen L. Stigma as a key determinant of health-related quality of life in Parkinson’s disease. Qual Life Res. 2016. 25(12):3037-3045.
  • Oehlberg K, Barg FK, Brown GK, Taraborelli D, Stern MB, Weintraub D. Attitudes regarding the etiology and treatment of depression in Parkinson’s disease: a qualitative study. J Geriatr Psychiatry Neurol. 2008. 21(2):123-32.

 

Who to See If You Have Shaky Hands?

Shaky hands

Shaky hands are more commonly known as hand tremors. These hand tremors make everyday tasks much more difficult when compared to the average person. Usually this involuntary movement is a good early warning sign that one may have an underlying neurological or degenerative condition (Healthline, 2018). Shaky hands are a symptom of and Parkinson’s Disease (PD) but more commonly od Essential Tremor (ET) (Healthline, 2018). Parkinson’s disease is a chronic neurological disorder that affects movement starting from tremors in one hand to greater involuntary movement of the rest of the body (Mayo Clinic, 2018).  Along with tremors PD also causes slowing down of movement resulting in stiffness of muscles (Mayo Clinic, 2018). The more common cause of shaky hands essential tremor is known as a neurological disorder that causes rhythmic shaking that will affect parts of the body (Mayo Clinic, 2017). The involuntary shaking associated with ET however occurs only in the hands (Mayo Clinic, 2017).

Seek Professional Help
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If you are experiencing any involuntary hand movement issues it Is in your best interest to seek professional help. In such cases one should consult their family doctor first, treatments vary widely for specific tremors and therefore it is crucial that one allows a professional to diagnose and determine what the problem is that you are dealing with (Nazario, 2017).

General Practitioner (GP)

A family doctor or general practitioner is usually the first professional a patient will see when symptoms of shaky hands become a recurring event. It can be easily confused for other conditions as shaky hands is a common symptom in conditions such as Essential tremors, Parkinson’s disease, Multiple Sclerosis, Stroke, Tourette syndrome, overactive thyroid, and neurological disorders (Staff, 2017). Early diagnosis can mean effective treatment hence it is important to get the right kind of help at the right time (Staff, 2017).

The general practitioner will start off with performing tests to look for possible causes of the shaky hands. These tests include blood tests, urine tests, neurological exam, and physical performance tests (Weill Cornell Medical College, 2018). The tests are used as a means to rule out other possible causes and determine the most accurate diagnosis (Weill Cornell Medical College, 2018). In a lot of cases the family doctor may refer one to another specialist to receive better diagnosis outcomes.

Neurologist

A neurologist is a doctor who specializes in disorders of the brain, spinal cord and nerves (Parkinson’s Canada, 2018). A referral is needed for access to a specialist of this nature. Neurologists will help further rule out conditions that are associated with shaky hands. For example, if one has Parkinson’s Disease there are no tests such as x-rays to confirm (Parkinson’s Canada, 2018). In this case the neurologist would take the root of going though one’s family history of medical conditions and the associated linkage, perform a few tests, and a physical examination to once again rule out other conditions that are similar to Parkinson’s to make an accurate diagnosis (Parkinson’s Canada, 2018).

Occupational Therapist (OT)

In some cases where individuals are living in long term care (LTC) homes an Occupational therapy (OT) is the person who they deal with first.  An OT is a profession who specializes in helping individuals with disability, illness or an injury (Floyd, 2018). The OT will help individuals with all occupations, which are the functional activities someone participates in throughout their daily life such as, dressing, reading, eating, bathing, driving, and cooking (Floyd, 2018).  When referring to an OT in association to shaky hands the OT may be the first to notice the symptom and get a doctor involved. Alternatively, if an individual does not reside in a LTC home or have access to an OT for daily services a doctor would be their first form of contact and may refer or suggest services of an OT as they may be helpful once an individual is diagnosed with a certain condition (Floyd, 2018).  OT help to teach techniques and principles that may help make daily functioning for individuals with shaky hands from tremor or Parkinson’s easier (Floyd, 2018).

 

“I’ve done a good round of OT about 6 years ago and it was a wonderful experience. I was so appreciative of my Occupational Therapist. Thanks for answering our questions and being here for us.

I am a photographer and have had to close down my business due mostly to my cognitive issues, but also due to my hand tremor that has progressively gotten worse. I continue to do my photography as a hobby (can never give it up!), but the brace I use is just not cutting it anymore. It is just one of those used for carpel tunnel syndrome, but I just used it for immobilizing my hand while holding my camera.

The great part about my OT is that once I have been established at my Neurorehab center (which I have), I don’t have to wait for my neurologist to order it. I can call anytime and they can assess me and we can decide together whether I need it ” (MSWorld, 2016).

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Naturopathic Doctors (NDs)   

A naturopathic doctor is just like a conventional medicine doctor they both trained in a similar way and provide primary care to patients (Canadian Association of Naturopathic Doctors, 2018). A naturopathic doctor however takes on more philosophical techniques where natural forms of medicine and associated therapies are utilized (Canadian Association of Naturopathic Doctors, 2018). Naturopathic doctors (NDs) are known to treat their patients as an individual and address the physical, environmental, attitude changes, lifestyle and the emotional aspects of health (Canadian Association of Naturopathic Doctors, 2018). The NDs then help to find and treat the cause of the illness or disease using various therapies.

“The naturopathic philosophy is to stimulate the healing power of the body and treat the underlying cause of disease. Symptoms of disease are seen as warning signals of improper functioning of the body, and unfavorable lifestyle habits. Naturopathic Medicine emphasizes disease as a process rather than as an entity. In addition to diet and lifestyle changes, natural therapies including botanical medicine, clinical nutrition, hydrotherapy, homeopathy, naturopathic manipulation and traditional Chinese medicine/acupuncture, may also be used during treatments” (Canadian Association of Naturopathic Doctors, 2018a).

As a comparison conventional doctors on the other hand, usually address and seek treatment for the symptoms of the disease at hand using pharmaceutical therapies or surgery (Canadian Association of Naturopathic Doctors, 2018).

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Resources

Locate your ND today. Medically trained. Naturally focused

Canadian Association of Naturopathic Doctors

 

A guide to what kind of doctor you really need.

OnHealth

 

References

Canadian Association of Naturopathic Doctors. (2018a). About Naturopathic Medicine. Retrieved from https://www.cand.ca/about-naturopathic-medicine/

Canadian Association of Naturopathic Doctors. (2018). Common Questions. Retrieved from https://www.cand.ca/common-questions-about-naturopathic-medicine/

Floyd, J. (2018). An Occupational Therapy Perspective. Retrieved from https://www.essentialtremor.org/coping/coping-with-et-articles/an-occupational-therapy-perspective/

Healthline. (2018). Shaking Hands: What Are My Treatment Options? Retrieved from https://www.healthline.com/health/treating-shaking-hands

Mayo Clinic. (2017). Essential tremor. Retrieved from https://www.mayoclinic.org/diseases-conditions/essential-tremor/symptoms-causes/syc-20350534

Mayo Clinic. (2018). Parkinson’s disease. Retrieved from https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055

MSWorld. (2016). Thread: OT/Hand Tremor. Retrieved from https://www.msworld.org/forum/showthread.php?111177-OT-Hand-Tremor

Nazario, B. (2017). Is there a treatment for shaky hands? Retrieved from https://www.webmd.com/brain/qa/is-there-a-treatment-for-shaky-hands

Parkinson’s Canada. (2018). Understanding Parkinson’s. Retrieved from https://www.parkinson.ca/about-parkinsons/understanding-parkinsons/

Staff, F. E. (2017). Essential Tremor. Retrieved from https://familydoctor.org/condition/essential-tremor/

Weill Cornell Medical College. (2018). Doctors Who Treat Essential Tremor. Retrieved from http://weillcornellbrainandspine.org/condition/essential-tremor/doctors-who-treat-essential-tremor

Why Are My Hands Shaking?

It is quite impossible to keep your hands completely still and therefore to some degree everyone has a tremor (Harvard Health Publishing, 2015). The root cause of this shakiness is due to the tiny muscle fibers found within the hands and arms that are constantly contracting and resting (Piedmont healthcare, 2017). At times this involuntary movement may become imbalanced as some of the muscle groups may continue to contract instead of entering the resting phase setting the timing off (Piedmont healthcare, 2017).

The trick here is figuring out if this shakiness of the hand is normal or abnormal (Harvard Health Publishing, 2015).

““You know your body best,” says Dr. Etienne. “If you feel shaky after a couple cups of coffee or as you prep for a public speaking engagement, it may very well be the caffeine or adrenaline causing your shakiness, and there is no cause for alarm. But if you can’t control it, even when you aren’t using your hands, this might be a sign to seek your doctor’s advice”” (Piedmont healthcare, 2017).

Causes

There are a variety of conditions that contribute to hand tremors. Common causes of shaky hands include:

Anxiety. Anxiety takes on a form of a psychological tremor, involuntary muscle movement occurring within the body of a healthy person resulting in mechanical and nervous system interactions (Tomczak, Gajewski, & Mazur–Różycka, 2014).  When dealing with such strong emotions, nerves are heightened causing shaky hands usually due to significant feelings of anger, stress, tiredness or being anxious.

Lack of Sleep. When the body is deprived of sleep it may trigger neurological reflexes that can then result in shaky hands, irritation, mood change, and lack of concentration (Piedmont healthcare, 2017).  Sleep deprivation can also contribute to chronic physical health issues and increase risk for things such as weakened immunity, memory issues, and weight gain (Healthline, 2018).

Alcoholism. The consumption of too much alcohol can result in liver and other health problems such as an alcohol disorder. Alcohol affects everyone differently however, common changes include personality and behavioral change such as irritability and lack of motivation, change in daily regimes, shaky hands, and slurred speech (Nazario, 2018). Depending on the severity of one’s alcohol intake hand shaking can last for a few days to years to even a longer duration of time (Nazario, 2018).   

Liver Damage. Cirrhosis occurs at the end stage of chronic liver disease when there is severe damage caused to the liver resulting in liver scarring (Healthline, 2018a). Common causes are due to alcohol abuse and viral infections (Healthline, 2018a). Positive physical examination tests will show pale skin, yellow eyes (jaundice), hand tremors, reddened palms, an enlarged liver or spleen, and finally, small testicles (Healthline, 2018a).  

Low Blood Sugar (Hypoglycemia). As the blood sugar levels decline well below normal, the nerves and muscles are deprived of fuel causing a variety of different effects such as, shakiness of the hand, sweating, anxiety, hunger, irritability, pale skin, fatigue and irregular heart rhythm (Mayo Clinic, 2018). Keep in mind that the adrenaline system will instantly respond and therefore it will make the shakiness worse for the time being. Overall hypoglycemia is a good indicator that an underlying health problem exists in some cases (Stearn, 2014).  

Overactive Thyroid (Hyperthyroidism). Known to be more prevalent in women and in individuals in their 20s and 30s (Piedmont healthcare, 2017). Excess thyroid hormone being released into the body speeds up processes and can not only result in shakiness but also anxiety, nervousness, rapid heartbeat, sweating, sleeping issues and weight loss (Aleppo, 2018).

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In 2007, Oprah Winfrey announced that she had a thyroid problem diagnosed as hypothyroidism (Gentile, 2017).

“ My body was turning on me. First hyperthyroidism, which sped up my metabolism and left me unable to sleep for days. (Most people lose weight. I didn’t.) Then hypothyroidism, which slowed down my metabolism and made me want to sleep all the time. (Most people gain weight. I did! Twenty pounds!)” (Parker-Pope, 2007).

Too Much Caffeine. If too much coffee, tea or chocolate is consumed it can result in shaky hands, feeling of jitters, anxiety, rapid heartbeat, stomach irritation and headaches especially if one has substance sensitivity (Zehr, 2017). Caffeine acts as a central nervous system stimulate and when consumed in adequate amounts it makes the consumer more awake, energetic and alert (Zehr, 2017).

Essential Tremor. A nerve disorder causing uncontrolled shaking or tremors to different areas of the body. Most common areas of the body that are affected include arms, hands, larynx, tongue, head, and chin. In majority of cases lower body parts are not affected by this condition (WebMD, 2018).  A key aspect of essential tremors is that it produces more noticeable movements as the muscle fibers contracting and resting are synchronous oppose to contracting at random (Stearn, 2014).

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“ The late “actress Katharine Hepburn is an extreme example of advanced essential tremor – it affected her voice, head and arms, as well as her hands,” Rezak notes. Playwright Eugene O’Neill also suffered from essential tremor. So does rocker J. Roddy Walston, of J. Roddy Walston & The Business, who became increasingly vocal about his condition in the band’s 2013 LP “Essential Tremors.”” (Colino, 2015).

Psychogenic Tremor (Functional Tremor).  Can come and go as any form of shakiness within the body. The tremor worsens during times of peak stress and declines or stops when distracted (Office of Communications and Public Liaison, 2018).  It is very common for individuals with psychogenic tremor to also have an underlying psychiatric disorder such as depression or post-traumatic stress disorder (PTSD) (Office of Communications and Public Liaison, 2018).

Multiple Sclerosis (MS). An immune system targeting disease that affects the nerves, brain, spinal cord and causes shaky hands (WebMD, 2017). Essential tremors in the hand or foot are very common in MS and occur when one is already performing the act of moving (WebMD, 2017).

Jack Osbourne Son of the famous British rock star Ozzy Osbourne,  publicly announced having multiple sclerosis in 2012.

“Since his diagnosis, Osbourne’s motto is “Adapt and Overcome.” He uses the hashtag #Jackshaft on Twitter to talk about his experience with MS. “I will never say that I am thankful for MS,” he said in an open letter. “But I will say that without MS, I don’t know if I would have made the necessary changes in my life that have changed me for the better” (Healthline, 2018b).

Post-Traumatic Stress Disorder (PTSD). A disorder where the brain reacts with excessive fear and nervousness even after one has already experienced or seen a traumatic or terrifying event, long after the original trauma event is over (Peterson, 2018). The brain reacts by staying in overdrive and in a state of hyper alertness for the next trauma (Peterson, 2018). This causes nervousness, jittering, and shaking (Peterson, 2018). Alternately, followed by a traumatic event, one can become numb and shut down their feelings and start to avoid certain situations that recall traumatic events. Other individuals can fall prey for depression, irritability, or risky behavior (Peterson, 2018).

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Lady Gaga released an open letter to her fans talking about her battle with post-traumatic stress disorder.

She wrote: “I have wrestled for some time about when, how and if I should reveal my diagnosis of Post-Traumatic Stress Disorder (PTSD). After five years of searching for the answers to my chronic pain and the change I have felt in my brain, I am finally well enough to tell you. There is a lot of shame attached to mental illness, but it’s important that you know that there is hope and a chance for recovery” (Hinde, 2017).

Parkinson’s Disease (PD). A less common condition in comparison to essential tremor. PD causes shakiness of the hand just as essential tremor but rather than causing difficulties in performing tasks the shaking of the hand is the worst when one is resting and not utilizing the hand (Stearn, 2014). The shakiness in Parkinson’s disease is referred to as ‘pill rolling’ this is because its similar to rolling a pill between one’s thumb and side of the index finger (Stearn, 2014).

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In 1984, Muhammad Ali’s condition was officially diagnosed as Parkinson’s disease, three years after he retired from the professional boxing (Sawer, 2016).

“at the age of 38, tempted back into the ring by money and his love of the crowd, he suffered a terrible beating at the hands of Larry Holmes, his former sparring partner. In 1981 he took another pummelling, losing on points to Trevor Berbick before finally retiring for good. By now Ali’s physical deterioration was obvious. He suffered from permanent fatigue, his mouth drooled saliva and he developed a tremor in his hand” (Sawer, 2016).

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Medications. Involuntary drug induced shakiness can occur as the nervous system and muscles respond to medication’s ingested (Medline Plus, 2018). Some common medications that can cause shaking include:

  • Excessive movement disorder medication (Tetrabenazine)
  • Cancer medicines (cytarabine and thalidomide)
  • Antidepressants (tricyclics and Selective serotonin reuptake inhibitors (SSRIs))
  • Seizure medicines (sodium valproate and valproic acid)
  • Heart medications (procainamide and amiodarone)
  • Asthma medication (albuterol and theophylline)
  • Lithium (mood stabilizer)
  • Immune suppressing medicines (tacrolimus and cyclosporine
  • Stimulants (amphetamines and caffeine)  
  • Antibiotics
  • Nicotine
  • Weight loss/ bariatric medication (tiratricol)
  • Overactive thyroid medication (levothyroxine)
  • Blood pressure medications
  • Antivirals (vidarabine)
  • Epinephrine and norepinephrine

(Medline Plus, 2018)

There are many causes for shaky hands ranging from non-severe issues such as consuming too much coffee to more chronic issues such as essential tremors. Information provided is for educational purposes only and does not replace a licensed physician’s professional diagnosis, treatment or medical advice on your shaky hands problem.

Now Back To The Question, Do You Have Shaky Hands?

If so, you have come to the right place. Steadiwear has created an innovative solution to cater to your shaky hands.  Our Steadi-One glove can help reduce your shakiness, allowing you to better perform everyday tasks. Read more about the  Steadi-One.

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Fill in our survey and book your consultation today by emailing us at www.info@steadiwear.com

 

References

Aleppo, G. (2018). Hyperthyroidism Overview. Retrieved from https://www.endocrineweb.com/conditions/hyperthyroidism/hyperthyroidism-overview-overactive-thyroid

Colino, S. (2015). The Truth About Essential Tremor: It’s Not Just a Case of Nerves. Retrieved from https://health.usnews.com/health-news/patient-advice/articles/2015/11/11/the-truth-about-essential-tremor-its-not-just-a-case-of-nerves

Gentile, J. (2017). Celebrities with Thyroid Disorders. Retrieved from https://www.endocrineweb.com/conditions/thyroid/celebrities-thyroid-disorders

Harvard Health Publishing. (2015). Tremor – Harvard Health. Retrieved from https://www.health.harvard.edu/decision_guide/tremor

Healthline. (2018). 11 Effects of Sleep Deprivation on Your Body. Retrieved from https://www.healthline.com/health/sleep-deprivation/effects-on-body#1

Healthline. (2018a). Cirrhosis. Retrieved from https://www.healthline.com/health/cirrhosis

Healthline. (2018b). Celebrities with Multiple Sclerosis. Retrieved from https://www.healthline.com/health/multiple-sclerosis/celebrities-with-ms#2

Hinde, N. (2017). 17 Celebrities Open Up About Mental Health. Retrieved from https://www.huffingtonpost.co.uk/entry/celebrities-who-opened-up-about-mental-health_uk_591311ade4b050bdca6121d6?guccounter=1&guce_referrer_us=aHR0cHM6Ly93d3cuZ29vZ2xlLmNhLw&guce_referrer_cs=aUwns0nu64MgNodXX_C5lw

Livinglifewithessentialtremor. (2018). Katherine Hepburn & ET! Retrieved from https://livinglifewithessentialtremor.wordpress.com/2018/01/23/katherine-hepburn-et/

Mayo Clinic. (2018). Hypoglycemia. Retrieved from https://www.mayoclinic.org/diseases-conditions/hypoglycemia/symptoms-causes/syc-20373685

Medline Plus. (2018). Drug-induced tremor: MedlinePlus Medical Encyclopedia. Retrieved from https://medlineplus.gov/ency/article/000765.htm

Nazario, B. (2018). Signs of Drug Addiction. Retrieved from https://www.webmd.com/mental-health/addiction/signs-of-drug-addiction#2

Office of Communications and Public Liaison. (2018). Tremor Fact Sheet. Retrieved from https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Tremor-Fact-Sheet

Parker-Pope, T. (2007). Oprah’s Thyroid Club. Retrieved from https://well.blogs.nytimes.com/2007/10/19/oprahs-thyroid-club/

Peterson, M. (2018). Post-traumatic Stress Disorder (PTSD) Symptoms, Tests & Treatments. Retrieved from https://www.emedicinehealth.com/post-traumatic_stress_disorder_ptsd/article_em.htm#what_is_post-traumatic_stress_disorder_ptsd

Piedmont healthcare. (2017). Shaky hands – normal or not? Retrieved from https://www.piedmont.org/living-better/shaky-hands-—-normal-or-not

Sawer, P. (2016). His longest round: Muhammad Ali’s fight with Parkinson’s disease . Retrieved from https://www.telegraph.co.uk/news/2016/06/04/his-longest-round-muhammad-alis-fight-with-parkinsons-disease/

Stearn, M. (2014). Shaky hands. Retrieved from https://www.embarrassingproblems.com/problem/shaky-hands

Tomczak, A., Gajewski, J., & Mazur–Różycka, J. (2014). Changes in Psychological Tremor Resulting From Sleep Deprivation Under Conditions of Increasing Fatigue During Prolonged Military Training. Biol Sport, 31(4), 303-308. doi:10.5604/20831862.1127343

WebMD. (2017). Can multiple sclerosis (MS) cause shaky hands? Retrieved from https://www.webmd.com/brain/qa/can-multiple-sclerosis-ms-cause-shaky-hands

WebMD. (2018). The Brain and Essential Tremor. Retrieved from https://www.webmd.com/brain/essential-tremor-basics#1

Zehr, M. (2017). How to Treat Hand Tremors by Exercising. Retrieved from https://www.livestrong.com/article/449077-how-to-cure-hand-tremors-by-exercising/

Living with Parkinson’s Disease (The Caregiver Edition)

 

Parkinson’s disease is a progressive, neurodegenerative brain disorder that leads to shaking, stiffness, and difficulty with walking, balance, and coordination (Robinette, Charles et al, 2018). Symptoms usually begin gradually and worsen. Overtime individuals may experience mental and behavioral changes, memory loss, fatigue, sleep problems, and depression. PD is most common in men aged 60. However, early onset of the disease can begin at the age of 50 (Robinette, Charles et al, 2018).

Families Coping with Parkinson’s Disease  

Parkinson’s Disease like any other chronic illness manifests many physical and psychological challenges, this can be incredibly hard on the family. Along with the affected individuals the family has to also deal with change and adopt to this new lifestyle that comes along. It can be emotionally devastating to see a family member suffer and having to support and care for them throughout (WHP, 2017).

qaulity of life

Family members of individuals with PD have their work cut out for them. Caregivers and family take part in: 

  • Maintaining quality of life
  • Keeping updated on disease progression, symptoms, treatment and challenges.
  • Offer love and support

(Senelick, 2016)

Maintaining Quality of Life

It is a crucial part of maintaining quality of life even after being diagnosed with PD that affected individuals understand that they are not alone in this journey. The family should actively be apart of the affected family members daily life. Involvement can range from different activities such as going for a walk, watching television, taking a trip to the grocery store, or even doing laundry (WHP, 2017). As long as some involvement is there from the family it can act as a temporary relief from symptoms and enhance quality of life (WHP, 2017)

(Ryerson, 2015)

Keeping Updated on Disease Progression, Symptoms, Treatment and Challenges

Many symptoms of PD are almost invisible these include fatigue, anxiety and depression (Ryerson, 2015). Most of the time it is not immediately apparent that your loved is suffering as it may be internal symptoms. Having frequent conversations about how your loved one feels and what has changed or progressed within their illness is key. This keeps family members in the loop and allows them to accommodate for long-term care.

Offer Love and Support

Doctor’s appointments, support group meetings, communicating with children and other family members can all be very overwhelming. It is a good idea to have and bring a caregiver along to listen and take part in certain situations. For example, it may be a good idea to take your spouse along to a doctor’s appointment as she or he will have a better idea about any mood or behavioral changes and concerns (Ryerson, 2015).

A poem describing Jane Davis’ experience with Parkinson’s disease when her husband, Gary, was diagnosed

Watching 

“I watch
your body slowly deteriorating
not daily, not weekly,
but it is there.
I compare to a year past
and then I know,
your body is betraying you.

Friends notice
family too,
our children don’t want to admit.
To them, you are the superhero
one that can do anything
build anything
fix anything.
Maybe that is how it should be.

I watch you move and sway,
Darn medications.
Darn disease.
I watch you struggle to button,

Darn disease.
I watch you walk with your bent back,
I watch you grimace in pain.
Darn disease.
I watch your hands tremor,
Darn disease.
I watch those many trips to the bathroom
Darn disease
I watch you take your medications
throughout the day
too many to count.
Darn disease
I watch you keep going
fighting back that pain and stiffness

I love your drive
I love that you never give up
I love that you refuse to slow down

I watch you with admiration and love.”

(Parkinson’s Foundation, 2018).

As the poem portrays PD is a rough journey that needs a strong will and strong supportive caregiver. Have any of our readers created any other poems? We would love to read or hear them. Reach out via our Facebook page

External Support Resources

We sometimes forget to keep in mind that PD takes a toll on the caregiver and family. Support is also needed to those providing care to their loved ones. Families no longer have to cope with Parkinson’s disease alone. Many support groups, charities and educational material and aid are openly available. Here is a short list that our team has found to be greatly supportive:

Caring in a Family with Parkinson’s –  Parkinson Canada

The Emotional Side of Caregiving: Parkinson’s Caregivers Share Advice  – Michael J. Fox Foundation

Parkinson’s Disease and CaregivingFamily Caregiver Alliance

References

Parkinson’s Foundation. (2018). How to Cope with Parkinson’s as a Caregiver. Retrieved from http://parkinson.org/Find-Help/Blogs/Caregiver-Corner/How-to-Cope-With-Parkinsons-as-a-Caregiver

Michael J. Fox Foundation. (2018). Support & Caregiving for Parkinson’s Patients: The Michael J. Fox Foundation. Retrieved from https://www.michaeljfox.org/understanding-parkinsons/supporting-caregiving.php

Robinette, J. W., Charles, S. T., & Gruenewald, T. L. (2018). Neighborhood cohesion, neighborhood disorder, and cardiometabolic riskSocial Science & Medicine, 198, 70-76. doi:10.1016/j.socscimed.2017.12.025

Ryerson, N. (2015). Parkinson’s Disease and Your Marriage: Advice from Our Community. Retrieved from https://www.michaeljfox.org/foundation/news-detail.php?parkinson-disease-and-your-marriage-advice-from-our-community

Senelick, R. (2016). Coping Tips for Caregivers of Those With Parkinson’s Disease. Retrieved from https://www.webmd.com/parkinsons-disease/guide/parkinsons-caregivers#1

WHP. (2017). We Have Parkinson’s. Retrieved from https://wehaveparkinsons.com/things-family-members-should-know-about-parkinsons/

Tremors in the Workplace

Written by Tiana Corovic
Some of us take the ease for which it takes to perform a 9-5 job for granted. For others, this is a luxury that can’t be afforded. Tremors can do more than affect one’s capability to perform tasks, but can lead to discrimination, employment termination, and (most importantly) loss of confidence.

 

It’s Your Right

Under the Canadian Charter of Rights and Freedoms it is clearly stated that every individual is to be considered equal. People can also turn to The Canadian Human Rights Act to protect themself against harassment or discrimination based on disability (Government of Canada, 2017). Canada data demonstrates that about half of disabled Canadians are employed, leaving many more under-employed compared to their non-disabled counterparts (McQuigge, 2017). Unfortunately, regardless of disability laws, there continues to be cases of discrimination.

 

A case reported by Knowsley (2015) described a lift technician who was dismissed after his boss became aware of his hand tremors. While his excuse was the termination was due to safety reasons, the technician had worked there for over 5 years without prior interference. Furthermore, the employer did not seek a medical examination to determine whether working conditions were unsafe, and the tremor was overall very slight. As result of this discrimination in the workforce, the technician received $3, 700 for lost wages and $25, 000 for loss of dignity and injury.  Cases such as this one also extends to a waitress with tremors who was fired for spilling items when carrying her tray (Brody, 2007).

 

If qualification for work remains unchanged, employers have no grounds to dismiss based on disability. Everyone has the right to make a livelihood for themselves without having to worry about additional discrimination from employers.

 

How tremors affect the workplace

 

Personal anecdotes on the International Essential Tremor Foundation site provided insightful details about daily struggles faced with tremors and various coping mechanisms that were used to surpass them. For example, one author and musician revealed how his essential tremors used to be a constant source of embarrassment and anxiety. Learning guitar with tremors was a great struggle, which made him modify his pursuit to singing. After many years of trying to hide his tremors, he finally embraced it and decided to spread awareness through his music and novel audience. Another story took on the viewpoint of a Los Angeles Times new editor whose essential tremors interfered with his ability to draw cartoon characters. While his tremors were not a source of embarrassment, he was aware that his ability to draw cartoon characters without assistive devices might soon become impossible.

 

Various professions will face various barriers when dealing with tremors, however it’s important to take appropriate steps to ensure you can work to your full capacity.  A personal account by Vito Cosmo (2014) described how tremors led to small and illegible handwriting, which can be seen as a problem for a State and Local Tax director. As a solution to this issue, he would carry his laptop to meetings or have someone else take handwritten notes for him. Another student had a similar problem where she couldn’t write her own notes, but once the disability laws entitled her to a note taker she was able to return to college (Brody, 2007). While tremors are a common issue for these individuals, so is fatigue. As result, occasionally working from home or having later start times might be necessary to deal with fatigue. One important distinction with disability in the workplace is that while it might affect one’s ability to perform tasks, it doesn’t change one’s qualifications to do a good job.

 

Additional tips and tricks reported by individuals suffering from tremors include: surround yourself with positive individuals, practice deep breathing exercises and stay organized (Cosmo, 2014). Others have practiced yoga to gain flexibility or other forms of physical activity.  One woman even wrote a book where she provided advice for dealing with essential tremors, including: hold half mugs with all fingers at the rim, use a travel mug with a lid and straw, ask for already cut food from restaurants, use pens with rubber grips, replace buttons with Velcro, and carry a stack of printed labels with your contact information (Brody, 2007).

 

Tremors Brought on by the Workplace

Toxins in the workplace environment can compromise health long-term both physically and mentally. Numerous studies have pointed to manganese toxicity exposure, common for manganese miners, smelters, welders, and battery workers, as a cause for psychiatric symptoms and postural tremors. In a study that compared welders with tremors to tremors in patients with Essential Tremors (ET) and Parkinson’s Disease (PD), tremor intensity and amplitude was greater in the first two groups respectively. Hand tremors worsened with arm extensions, resulting in greater reporting of action and postural tremors in welders than patients with PD. For example, welders’ tremors doubled when the right arm was extended, but remained largely unchanged in patients with PD (Sanchez-Ramos et al., 2011). After 20+ years free of environmental toxins, blood samples yielded low to zero traces of manganese, but postural tremors continued to persist.  Unfortunately, this is neither the first nor last reporting of manganese exposure in literature.

 

Another possibility for work onset tremors is stress. One case study examined a 52 year-old nurse in the intensive care unit who developed tremors for fine motor activities. That made tasks, such as handling an arterial line, next to impossible. However, after she switched to day surgery, which she found far less stressful and allowed her adequate sleep, her tremors did not impede on nursing duties as they had on previous occasions (Lurati, 2015).

 

There are plenty of stories shared online of daily struggles faced by individuals with tremors. Creating a support network, knowing your rights, and making changes to improve daily living will help individuals take control of their tremors and workplace.

 

References:

 

Brody, J.E. (2007). Understanding and coping with tremors. The New York Times.

Retrieved from: http://www.nytimes.com/2007/05/30/health/30iht-29brod.5924602.html

Cosmo, Vito A, Jr,C.P.A., C.G.M.A. (2014). Embrace the elephant in the room:

Disability in the workplace. Pennsylvania CPA Journal, 85(2), 24-26.

Government of Canada. (2017). Rights of People with Disabilities. Government of

Canada. Retrieved from: http://www.canada.pch.gc.ca/eng/1448633334025

Knowsley, A. (2015). Employee discriminated against in workplace for hand

tremor,. Rainey Collins Lawyers.

Lurati, Ann, AR NP, AC NP-BC, MPH,D.N.P., C.O. (2015). An ICU nurse with a

history of tremors. Workplace Health & Safety, 63(1), 6-8. doi:http://dx.doi.org.myaccess.library.utoronto.ca/10.1177/2165079914565346

McQuigge, M. (2017). Canadians with Disabilities Act to focus on employment:

minister. Global News.

Sanchez-Ramos, J., Reimer, D., Zesiewicz, T., Sullivan, K., & Nausieda, P. A.

(2011). Quantitative analysis of tremors in welders. International Journal of Environmental Research and Public Health, 8(5), 1478-90.

http://www.essentialtremor.org/coping/personal-storiessharing/

Having Parkinson’s and Tips for Coping Daily

Having a disability, such as Parkinson’s disease, in the workplace can prove to be very challenging. This degenerative disease affects the motor system, resulting in tremors, rigidity, bradykinesia (slowness of movement), instability and fatigue. The number of individuals with disabilities and chronic diseases in the workforce is increasing due to longer life expectancy rates.

It is the government’s responsibility to take on an active role in providing both emotional and financial support for those in need. In Canada, The Ontario Human Rights Code fights against ableism in the workplace – the discrimination against those with disabilities. It also ensures that people with disabilities in the workforce receive proper services and the necessary adjustments that would allow them to receive equal access to the same opportunities as the rest of the working force.

Studies show that PD patients tend to retire earlier than anticipated (Koerts et al, 2016). The average diagnosis age is 55 years and the longer they stay in the labor force, the harsher their symptoms progress. As a result, it becomes more challenging to perform certain tasks and duties. A PD patient’s “working capacity” (Martikainen, et al, 2006) eventually decreases and they require major adjustments in the workplace. PD patients may ask for work adjustments, such as extra breaks, option of working from home and taking on fewer responsibilities. However, these adjustments may not be enough to help them meet certain expectations. As the disease progresses, they are faced with severe symptoms preventing them from moving forward. This may lead to work dissatisfaction, which is a key factor in their decision for pursuing early retirement.

When studying the impact of having PD in the workplace, one must consider the direct and indirect costs to society. Direct costs include costs such as treatment and medications while indirect costs involve early retirement, reduced income, unemployment and the impact PD has on one’s mental health.

Many studies reveal that factors other than the diagnosis can impact an individual’s employment status. When diagnosed with PD, the challenges do not only stop at the physical level, but also spill over to the individual’s financial and mental health. Koerts et al. (2016) found that level of income depends on the age of onset, “patients who were younger than the age of 60 received a lower monthly income than individuals without PD of a similar age”. This is indicates that those with PD are more likely to be in a worse off financial state than their colleagues.

From a psychological perspective, PD patients tend to avoid public spaces due to their movement disorder being perceived as disruptive and erratic. It is psychologically problematic for one to constantly feel anxious of being in public spaces, afraid to attend work gatherings and meetings, and receive unwanted attention. Therefore, PD patients tend to leave their jobs earlier than they have to because of emotional distress. Unfortunately, the diagnosis coupled with the loss of employment does not alleviate distress.

In conclusion, PD creates many challenges for an individual in the labor force. While the direct costs may seem significant, it is the indirect costs that truly pose the greater problem to our society. Working with PD can be difficult and have psychological implications that force many PD patients to retire early. Work adjustments are important to improve an individual’s “working capacity”, however, some adjustments may not be enough to meet their work expectation. Is the government’s effort to reduce these challenges effective?

TaiChi.jpg

Tai Chi, an exercise involving yoga and meditation, is an excellent way for Parkinson’s disease patients to improve balance and motor control. This exercise known for its health benefits and would not only allow PD patients to regain control over their lives, but also increase working capacity and functionality.  If interested in Tai Chi, our blog covers the exercise more thoroughly along with other options in the post “Exercise, Not Only for the Realm of Athletes”

Sources:

Banks , P., & Lawrence, M. (2006). The Disability Discrimination Act, a necessary, but not sufficient safeguard for people with progressive conditions in the workplace? The experiences of younger people with Parkinson’s disease. Disability and Rehabilitation, 28(1), 13-24.

Koerts, J. et al. (2016). Working capacity of patients with Parkinson’s disease – A systematic review. Parkinsonism and Related Disorders, 27, 9-24.

Martikainen, K. K. (2006). Parkinson’s Disease and Working Capacity. Movement  Disorders, 21(12), 2187-2191.

Wayne, P. (2013, May 03). Tai chi improves balance and motor control in Parkinson’s disease. Havard Health Publishing 

(2016) Policy on ablesim and discrimination based on disability, Ontario Humans Rights Commission

Exercise, Not Only for the Realm of Athletes  

Written by Tiana Corovic

Among its many known benefits, exercise may also be used as a rehabilitative treatment for the reduction and control of Essential (ET) and Parkinsonian tremors (PT). Performing every day tasks requires some degree of physical ability, such as strength, dexterity, and steadiness. Gaining control of movements does not have to come at the expense of a needle or a surgical procedure. Improvements in movement control and severity of tremors may occur after only six weeks of diligently applying to an exercise routine. This doesn’t have to take form of the huffy puffy weightlifting challenges aired on ESPN. Targeted strength training, tai chi, and yoga may bring about the desired increases in physical ability.

Strength Training

Strength training may range from kettle bell movements, speed lifting to body weight exercises, all of which require muscle groups to work against a force. Besides the obvious benefits for overall health, numerous studies point to strength training as a rehabilitative program for ET and PT. Resistance training is believed to induce neuromuscular adaptions that may benefit patients with ET by reducing the variability in motor firing rate (Sequeira, Keogh, & Kavanagh, 2012). When trained on heavy versus light resistance loads, patients were more likely to have increased steadiness, overall reduced tremor amplitude, and improved dexterity, noticeably in their most affected limb (Bilodeau et al., 2000; Sequeira et al., 2012).

Furthermore, even an untrained limb may begin to see improvements in muscle contractions by about 8.2% due to the cross-over effect of resistance training (Lee, Gandevia, & Carroll, 2009).  This is further reflected in the increased activity of the sensorimotor region in the brain, associated with the untrained limb during exercise (Farthing et al., 2007).

Tai Chi

Tai Chi is an exercise involving fluid movements that occur in a sequence while body weight shifts from one leg to the other. Studies demonstrate that patients with Parkinson’s Disease (PD) benefit in terms of balance and well being from practicing tai chi (Li et al., 2012). Since impaired balance is a common issue associated with PD and is known to reduce patients’ functional abilities, tai chi may act as a beneficial tool for reducing falls and its associated injuries. The improvements in physical function are thought to occur due to the reduction of dyskinesia (i.e., impaired voluntary movement) and bradykinetic movement (i.e., slow movement).  One study demonstrates that after tai chi practice twice a week for 24 weeks, participants had an average of 10.3cm increased stride length, increased walking speed, and greater knee extensions when compared to a stretching program (Li et al., 2012). While there are varying results in gait (ability to walk at a normal pace), mobility, aerobic endurance, and flexibility among studies, there’s a common consensus that tai chi improves physical function and well being among persons with PD (Ćwiękała-Lewis, K.,J., Gallek, M., & Taylor-Piliae, R, 2017). Tai chi’s many beneficial effects for physical ability make it a promising candidate as a behavioral intervention in patients with PD.

Yoga

Yoga is another tool that may be used to improve the severity of tremors. Due to its relaxing effects and the fact that tremors are frequently aggravated by stress, yoga may serve as a noninvasive relief method for patients with ET and PD. When individuals experience tremors, their default mechanism tends to be to tighten their muscles, often producing the opposite of the desired effect (Reeva & Cambell). Learning to relax can help overcome these maladaptive techniques to prevent worsening of tremors.   Stress may increase tremor amplitudes by activating various neural projections in the brain (Helmich & Dirkx, 2017).  A characteristic that separates PD from ET is that tremors frequently occur at rest during the former and during activity performance in the latter.

Tremors in PD increase markedly during cognitive stress to the point where they may even surpass effects of drugs, such as Levodopa, used for muscle control (Zach et al., 2017). Because of yoga’s common relaxing effect, it may be used as a form of behavioral therapy to reduce stress and its adverse effects.   Yoga’s benefits may further surpass the realm of stress reduction to improve patients’ physical abilities. After three months of yoga twice a week, there’s a significant reduction in bradykinesia, rigidity, and increased muscle strength in patients with PD (Ni, Mooney & Signorile, 2016). Another study demonstrated Bikram yoga’s ability to increase maximum voluntary force by 14% as well as reduce knee extension force fluctuations in patients that had the greatest difficulty prior to training (Hart & Tracy, 2008).  Exercise in multiple forms may be used as an additional treatment option for patients with ET and PD to improve physical well being.

Health does not need to come at the expense of high cost treatment options, negative side effects or invasive procedures. Improving one’s well being and capacity to perform activities in everyday life may be attained in the comfort of one’s home. Emerging evidence is indicating that strength training, tai chi, and yoga may benefit patients with ET and PD, helping patients to regain control of their movements and, by association, daily living activities.

References

Bilodeau, M., Keen, D. A., Sweeney, P. J., Shields, R. W., & Enoka, R. M. (2000).
Strength training can improve steadiness in persons with essential tremor. Muscle & Nerve, 23(5), 771-778.

Ćwiękała-Lewis, K.,J., Gallek, M., & Taylor-Piliae, R. (2017). The effects of tai  chi on physical function and well-being among persons with parkinson’s disease: A systematic review. Journal of Bodywork and Movement Therapies, 21(2), 414-421.
doi:http://dx.doi.org.myaccess.library.utoronto.ca/10.1016/j.jbmt.2016.06.007

Farthing, J. P., Borowsky, R., Chilibeck, P. D., Binsted, G., & Sarty, G. E. (2007). Neuro- physiological adaptations associated with cross-education of strength. Brain Topography, 20(2), 77-88. doi:http://dx.doi.org.myaccess.library.utoronto.ca/10.1007/s10548-007-0033-2

Hart, C. E. F., & Tracy, B. L. (2008). YOGA AS STEADINESS TRAINING: EFFECTS ON  MOTOR VARIABILITY IN YOUNG ADULTS. Journal of Strength and Conditioning Research, 22(5), 1659-69.

Helmich, R.C., & Dirkx, M.F. (2017). Pathophysiology and Management of  Parkinsonian Tremor. Seminars in Neurology, 37, 127-134.

Kavanagh, J. J., Wedderburn-Bisshop, J., & Keogh, J. W. L. (2016). Resistance  training reduces force tremor and improves manual dexterity in older individuals with essential tremor. Journal of Motor Behavior, 48(1), 20-30. doi:http://dx.doi.org.myaccess.library.utoronto.ca/10.1080/00222895.2015.1028583

Kidgell, D., & Pearce, A. (2010). Neural adaptations following cross-education  strength training: A pilot study. Journal of Science and Medicine in Sport, 12, 1. doi:http://dx.doi.org.myaccess.library.utoronto.ca/10.1016/j.jsams.2009.10.107

Lee, M., Gandevia, S. C., & Carroll, T. J. (2009). Unilateral strength training increases  voluntary activation of the opposite untrained limb. Clinical Neurophysiology, 120(4), 802-808. doi:http://dx.doi.org.myaccess.library.utoronto.ca/10.1016/j.clinph.2009.01.002

Li, F., PhD., Harmer, Peter,PhD., M.P.H., Fitzgerald, K., M.D., Eckstrom, Elizabeth,M.D.,  M.P.H., Stock, R., M.D., Galver, J., P.T., . . . Batya, S. S., M.D. (2012). Tai chi and postural stability in patients with parkinson’s disease. The New England Journal of Medicine, 366(6), 511-9.

Ni, M., Mooney, K., & Signorile, J. F. (2016). Controlled pilot study of the effects of  power yoga in parkinson’s disease. Complementary Therapies in Medicine, 25, 126-131. doi:http://dx.doi.org.myaccess.library.utoronto.ca/10.1016/j.ctim.2016.01.007

Pal, P. K. (2011). Guidelines for management of essential tremor. Annals of  Indian Academy of Neurology, 14(Suppl1), S25–S28. http://doi.org/10.4103/0972-2327.83097

Reeva, M., & Campbell, D. Exercise for relaxation & improve life’s quality

Sequeira, G., Keogh., J.W., & Kavanagh, J.J. (2012). Can resistance training  improve fine manual dexterity in Essential Tremor patients? Archives of Physical Medicine and Rehabilitation, 93, 1466-8.

Yang, Y., Li, X., Gong, L., Zhu, Y., & Hao, Y. (2014). Tai chi for improvement of motor  function, balance and gait in parkinson’s disease: A systematic review and meta-analysis. PLoS One, 9(7), e102942. doi:http://dx.doi.org.myaccess.library.utoronto.ca/10.1371/journal.pone.0102942