My PD Story

Sue Waight headshot
People with PD

Sue Waight

I am a 61-year-old woman who was diagnosed with Parkinson’s disease (PD) at age 59, which apparently is a common age for women to be diagnosed. My parents both had Parkinson's, but of my four siblings, I seem to be the only one who has inherited it. The first symptom I noticed was that my left hand would twitch, especially in the evenings, but not every day. I also went walking with my husband one day and found I didn't have the strength to walk up some steps. It took me several attempts to climb them. Then we took our three granddaughters to some hot pools, and I was waiting in line with my youngest. I noticed I got very cold, and when I did, I didn't just shiver — my whole arm was shaking so badly that I had to try to hold it still with my good arm.

I had trouble getting my general practitioner to refer me to a specialist, as he stated that he had not noticed any tremors while we were talking. I told him that it didn't happen all the time, but enough — coupled with the other events — that I felt there was merit in seeing a neurologist who specialized in Parkinson's disease.

I was referred and saw the neurologist, who very quickly diagnosed me with Parkinson's. I then realized I had some non-movement symptoms as well, which I simply hadn't connected with PD. I had been experiencing swallowing issues for at least 2 to 3 years and had recently lost my sense of smell; nobody put two and two together and realized these symptoms pointed to Parkinson's disease.

I was devastated but not surprised, and it took a month or so before I felt I could come to grips with the diagnosis. One day when I was searching online for Parkinson’s resources, I came across the Parkinson’s Foundation. Reading stories from other people with PD helped me realize I was not alone. I quickly found my best way of dealing with Parkinson’s was to create a blog, which I started in January 2021 and is still ongoing. Writing allows me to process my thoughts and feelings, and I hope that my words help others in the way these personal stories helped me.

I continue to work as a social worker in a hospital — working, ironically, in a neurological ward. I am still active and plan to work for a few more years, before I retire and hopefully am able to travel with my husband.

Let others in the Parkinson’s community know they are not alone.
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Science News

Most Popular Science News Articles of 2022

Parkinson's Foundation Science News blogs

Research brings hope to those living with Parkinson’s disease (PD) and their families. Knowing about the current Parkinson’s research studies can be empowering. Our Science News blog series focuses on the latest Parkinson’s studies and what they can mean for you or your loved one living with this disease.

The Parkinson’s research realm is vast. A breakthrough in treatment can stem from any lab or researcher, which is why we fund numerous research grants every year. Ready to participate in Parkinson’s research? Visit our Join A Study page to learn more.

Catch up on our top 5 Science News articles of 2022:

1. Aerobic Exercise Positively Alters Parkinson’s Brain

Multiple clinical trials have shown that aerobic exercise can enhance cognitive functioning, such as learning, thinking, remembering and problem solving. We know brain heath and cardiovascular fitness are connected. What we don’t know is how and where in the brain aerobic exercise is enhancing cognitive functions and reducing movement symptoms for people with PD.

This study sought to investigate how aerobic exercise may influence PD-related changes in the brain. Researchers also explored the effects of aerobic exercise on the substantia nigra, the area in the brain that plays a key role in dopamine production.

READ THE FULL ARTICLE

2. Freezing of Gait: Comparing Treatments Options

80% of people with PD experience freezing of gait

The sudden feeling that your feet are glued to the floor when trying to take a step is called freezing of gait — or more commonly, “freezing.” Unfortunately, freezing can happen often for people with Parkinson’s.

A new analysis compared the 11 most common techniques used to help a person with PD recover from a freezing episode. Some of these techniques include general exercise, verbal cues (like counting or clapping) and gait training. Find out the top three techniques that help with freezing.

READ THE FULL ARTICLE

3. The Unmet Needs of Women with Parkinson’s

40% of all people living with PD are women

When it comes to PD research, women are woefully underrepresented. Compared to men living with Parkinson’s, women with PD experience different symptoms, risk factors, side effects to treatments and have more difficulty getting a diagnosis and, later on, care.

We know these health inequalities exist, so how is research addressing them? A study authored by women sought to rigorously document the current knowledge, gaps and possible ways to address the unmet needs of women living with PD.

READ THE FULL ARTICLE

4. Dopamine Medication May Help with Sleep, Depression and Pain

Think of non-movement symptoms in Parkinson’s as fingerprints — everyone has them, but they’re different for every person. These symptoms can include depression, anxiety, problems sleeping and more. They often go under-reported and under-treated in people with Parkinson’s.

A type of drug known as a Monoamine oxidase-B (MAO-B) inhibitor helps make more dopamine available to the brain. These drugs can mildly improve some PD movement symptoms, but we do not if or how these medications help with non-movement symptoms. Parkinson’s Foundation National Medical Advisor Michael S. Okun, MD, co-authored a study analyzing a total of 60 MAO-B inhibitor studies and how they impact non-movement symptoms in Parkinson’s. Find out which symptoms improved, and which ones did not.

READ THE FULL ARTICLE

5. PD & Pollution: Something in the Air

Most experts agree that PD is caused by a combination of genetic and environmental factors

Air pollution is linked to heart disease, stroke, respiratory diseases, and diabetes, as well as neurogenerative diseases such as Alzheimer’s disease. Mounting evidence suggests that Parkinson’s might be added to the list soon.

A new study shows that air pollution is an emerging risk factor in the development of Parkinson’s. Exactly how do polluted air particles negatively impact the brain? From the lungs to the gut, study authors explain the pathways air pollution takes to enter the brain — all of which are linked to an increased risk of developing PD.

READ THE FULL ARTICLE

My PD Story

Paul and dad at a football game
Family Members

Paul Farahvar

My father was diagnosed with Parkinsonism in 2019, which likely resulted from a traumatic head injury. He was a successful and well-respected orthopedic surgeon for almost 40 years in Chicago, IL. He was the first to bring many bone surgeries to Chicago in the 1970s and ‘80s. 

As a pioneering surgeon, he loved helping others as a physician, so much so that he didn't want to retire, even into his 70s. He was known as a no-nonsense surgeon, who always thought of surgery as a last option, not the first — which was something rare in the ‘80s and ‘90s and is even rarer now. 

He didn't need to work anymore, as he had provided for his family for years and deserved retirement. We finally convinced him to retire so that he could work on his golf and tennis games! Sadly, less than five years into his retirement, he had a bad fall and then started to experience symptoms consistent with Parkinson’s disease. It slowly took away his independence and forced him to accept assistance. We are still unsure what form of parkinsonism he has as it has progressed for the past three years, quite quickly, making his ability to walk and talk very limited. 

Paul during a comedy show

I did not know much about Parkinson's before my father's diagnosis, but since then, I have become a student of the disease, and have been raising thousands of dollars for the Parkinson’s Foundation by donating all the proceeds from the T-shirts I sell at my comedy shows. I travel the country as a stand-up comedian, promoting my "Better Call Paul" shirts at my shows — I used to be a lawyer so it's a wink and nod to the show "Better Call Saul!” 

I regularly hear stories from others who have been personally affected by Parkinson’s and continue to learn more about this disease and its wide-ranging impact. Many of these conversations and connections end with tears and hugs with fellow family members who have suffered and lost.  

When it comes helping your loved one with Parkinson’s, talk to as many people who have been affected by Parkinson’s as possible, read as much as you can, be an advocate for your loved one and be positive.

In December 2022, I launched Stand Up for Parkinson’s, a Comedy Night supporting the Parkinson’s Foundation Midwest Chapter. I hope to continue my work with the Parkinson’s Foundation in the coming years!

Looking for ways to help your local PD community? Learn more on our How You Can Help page.

Caregiver Corner

Caregiver Corner: Lewy What? Explaining Lewy Body Dementia

Older and younger woman

Many people first heard the term dementia with Lewy bodies when it grappled headlines alongside Robin Williams, who was diagnosed with the disease before his passing. What should you know about this brain disease? 

Approximately 1.4 million people in the U.S. are estimated to live with dementia with Lewy bodies (DLB), a progressive brain disorder also known as Lewy body dementia. This progressive disease is often difficult to diagnose. However, knowing the signs can help you or your loved one get answers, and treatment, sooner. 

Symptoms  

Dementia with Lewy bodies can cause confusion, alter the way a person thinks and behaves and impact movement and memory.  

Symptoms include: 

  • Challenges with memory, concentration or multitasking. 

  • Tremor 

  • Rigidity 

  • Slow movement 

Diagnosis 

Dementia with Lewy bodies is diagnosed when cognitive decline (thinking changes) is an early symptom, occurring before or within a year of the onset of movement symptoms. 

DLB is known as an atypical parkinsonism. Atypical parkinsonism is difficult to diagnose. Over half of the people living with atypical parkinsonism disorders are initially diagnosed with Parkinson’s disease (PD). In most cases, people see multiple doctors before receiving a diagnosis. 

Treatment 

While there are currently no medications that slow or reverse DLB, there are many treatments aimed at relieving symptoms and helping ensure safety. People living with dementia with Lewy bodies benefit most from comprehensive, team-based healthcare that includes a mental health professional.  

Caring for the body and the mind — through medication, physical and mental exercise — is essential for people living with DLB. 

Symptom management is tailored to a person’s unique needs and can include: 

  • Medications such as donepezil (Aricept), galantamine (Razadyne) or rivastigmine (Exelon), may improve cognitive symptoms. 

  • Selective serotonin reuptake inhibitors (SSRIs) and Serotonin and norepinephrine reuptake inhibitors (SNRIs) medicines are used to address depression and anxiety.  

  • Clozapine (Clozaril), quetiapine (Seroquel) and pimavanserin (Nuplazid) are used to lessen hallucinations. 

  • Melatonin or clonazepam can be helpful for RBD. 

For those with dementia with Lewy bodies, many Parkinson’s dopamine medications can cause or worsen confusion. These may need to be reduced or eliminated, under a doctor’s guidance. Certain medications sometimes used to treat tremor, called anticholinergics, such as trihexyphenidyl (Artane) and amantadine, can also negatively impact thinking. 

Older antidepressants, some bladder medications and nonprescription antihistamines containing diphenhydramine (Benadryl and others) can also negatively impact cognition. 

Learn More 

If you recognize dementia with Lewy bodies symptoms in your loved one, speak to their Parkinson’s doctor, or a neurologist, who can help you find answers. For more information, explore these resources:  

We’re here for you. Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s and caregiving questions.  

Advancing Research

What's Hot in PD? Short and Long-Term Problems with Anticholinergic Drugs used for Sleep, Bladder, and Tremor Symptoms in Parkinson’s Disease Patients

Reading pill boxes

People with Parkinson's disease (PD) frequently struggle to identify drug therapies that can address bothersome symptoms such as sleep dysfunction, bladder urgency, drooling and tremor. Many of the drug therapies such as Benadryl (diphenhydramine), Advil PM, Alleve PM, common antihistamines, and others pills are readily available over the counter and do not require a prescription. These medications block a cholinergic receptor in the brain, and can improve many Parkinson’s disease symptoms. However, the price of taking these drugs may be steep (thinking problems, confusion, unsteadiness and even falling). An older French study of hospitalized Parkinson’s disease patients revealed that though 46% of all demented patients were confused, 93% on anticholinergic therapy had delirium and confusion when in the hospital (Agid et. al.). Deficiencies of the chemical acetylcholine have been reported to underpin thinking issues and shortages of the chemical have been observed in the brainstem, hippocampus, and cortex of Parkinson’s disease patients. Though anticholinergic use can result in drowsiness, dry mouth, urinary retention, memory problems as well as constipation, many patients find these therapies useful. In this month’s What’s Hot column we will address the short and long-term potential side effects of using of anticholinergic medications in Parkinson’s disease.

Cooper and colleagues in 1992 addressed thinking ability in a group of 82 freshly diagnosed and untreated Parkinson’s disease patients. The patients in this study were all randomized to receive levodopa (Sinemet), bromocriptine (a dopamine agonist) or an anticholinergic drug. Though all three treatments improved motor performance, the anticholinergic drugs produced memory impairments. Many subsequent studies including the Parkinson's Foundation QII prospective study have confirmed these findings.

Perry and colleagues in 2003 investigated the idea that blocking brain acetylcholine receptors could lead to more “Alzheimer’s changes” in the Parkinson’s disease brain. Interestingly, the researchers reported that an important marker of Alzheimer's disease, the amyloid plaque density, was present in more than double the concentration in Parkinson’s disease patients treated with long-term anticholinergic therapy. Another marker of Alzheimer’s disease, the neurofibrillary tangle, was also more prominent in the brains of those taking anticholinergic drugs.

The most recent worrisome evidence surrounding anticholinergic therapy is drawn from an article in a recent issue of JAMA Internal Medicine written by pharmacist Shelly Gray. The authors utilized data from the Adult Changes in Thought Study. The investigation was based in Washington state and had an impressive 3,434 people enrolled who were 65 years or older. All study participants were screened at inclusion to be sure there was no evidence for dementia. The authors cleverly used computerized pharmacy data to assess each participant’s exposure to anticholinergic drugs. The most common anticholinergic drugs were old-fashioned tricyclic antidepressants (TCA’s), antihistamines, and also drugs used for bladder and sleep. The patients were followed for 7 years and the data revealed that over 20% were shown to develop dementia. Participants who took anticholinergic drugs for three years or more had a greater than 50% higher dementia risk. Also, a higher cumulative dose of anticholinergic drugs increased the risk for dementia when compared to those taking anticholinergic drugs for 90 days or less.

The bottom line for people with Parkinson’s is that there should be a greater awareness of the short and the long-term potential side effects of anticholinergic therapy. Short-term, Parkinson’s patients should be aware that anticholinergics may precipitate drowsiness, dry mouth, urinary retention, memory problems, blurry vision, and constipation as well as a host of other side effects. Long-term, there is an increased risk of dementia. It is important for people with PD to routinely review medication lists with both a doctor and a pharmacist and to try to identify other medication alternatives.

Some practical suggestions include:

  • Identify alternative antidepressants with less anticholinergic effects
  • Watch out for over the counter drugs like Benadryl (diphenhydramine) and antihistamines
  • Dopamine agonists, levodopa, and deep brain stimulation can all potentially be used for difficult to control tremor instead of anticholinergics
  • Botulinum toxin injections can be employed for drooling and for some cases of bladder dysfunction
  • Sometimes atropine drops under the tongue or chewing gum can be employed for drooling issues
  • A type of physical therapy referred to as pelvic floor rehabilitation can be helpful for bladder retraining in those with urinary frequency
  • If hospitalized be sure the doctors do not use anticholinergics for sleep or bladder dysfunction
  • Parkinson’s disease patients and their interdisciplinary care teams can usually work together to reduce or to eliminate anticholinergic drug use

 

Selected References:

Cooper JA, Sagar HJ, Doherty SM, Jordan N, Tidswell P, Sullivan EV. Different effects of dopaminergic and anticholinergic therapies on cognitive and motor function in Parkinson's disease. A follow-up study of untreated patients. Brain. 1992 Dec;115 ( Pt 6):1701-25. PubMed PMID: 1486457.

Perry EK, Kilford L, Lees AJ, Burn DJ, Perry RH. Increased Alzheimer pathology in Parkinson's disease related to antimuscarinic drugs. Ann Neurol. 2003 Aug;54(2):235-8. PubMed PMID: 12891676.

Bédard MA, Pillon B, Dubois B, Duchesne N, Masson H, Agid Y. Acute and long-term administration of anticholinergics in Parkinson's disease: specific effects on the subcortico-frontal syndrome. Brain Cogn. 1999 Jul;40(2):289-313. PubMed PMID: 10413563.

Gray SL, Anderson ML, Dublin S, Hanlon JT, Hubbard R, Walker R, Yu O, Crane PK, Larson EB. Cumulative use of strong anticholinergics and incident dementia: a prospective cohort study. JAMA Intern Med. 2015 Mar;175(3):401-7. doi: 10.1001/jamainternmed.2014.7663. PubMed PMID: 25621434; PubMed Central PMCID: PMC4358759.

Faulkner MA. Safety overview of FDA-approved medications for the treatment of the motor symptoms of Parkinson's disease. Expert Opin Drug Saf. 2014 Aug;13(8):1055-69. doi: 10.1517/14740338.2014.931369. Epub 2014 Jun 24. Review. PubMed PMID: 24962891.

Sakakibara R. [Cognitive adverse effects of anticholinergic medication for overactive bladder in PD/DLB]. Rinsho Shinkeigaku. 2013;53(11):1389-92. Review. Japanese. PubMed PMID: 24292000.

Campbell NL, Boustani MA. Adverse cognitive effects of medications: turning attention to reversibility. JAMA Intern Med. 2015 Mar;175(3):408-9. doi: 10.1001/jamainternmed.2014.7667. PubMed PMID: 25622111; PubMed Central PMCID: PMC4346513.

Mate KE, Kerr KP, Pond D, Williams EJ, Marley J, Disler P, Brodaty H, Magin PJ. Impact of multiple low-level anticholinergic medications on anticholinergic load of community-dwelling elderly with and without dementia. Drugs Aging. 2015 Feb;32(2):159-67. doi: 10.1007/s40266-014-0230-0. PubMed PMID: 25566958.

Kalisch Ellett LM, Pratt NL, Ramsay EN, Barratt JD, Roughead EE. Multiple anticholinergic medication use and risk of hospital admission for confusion or dementia. J Am Geriatr Soc. 2014 Oct;62(10):1916-22. doi: 10.1111/jgs.13054. Epub 2014 Oct 3. PubMed PMID: 25284144.

Kidd AC, Musonda P, Soiza RL, Butchart C, Lunt CJ, Pai Y, Hameed Y, Fox C, Potter JF, Myint PK. The relationship between total anticholinergic burden (ACB) and early in-patient hospital mortality and length of stay in the oldest old aged 90 years and over admitted with an acute illness. Arch Gerontol Geriatr. 2014

Jul-Aug;59(1):155-61. doi: 10.1016/j.archger.2014.01.006. Epub 2014 Feb 5. PubMed PMID: 24582945.

Dubois B, Pilon B, Lhermitte F, Agid Y. Cholinergic deficiency and frontal dysfunction in Parkinson's disease. Ann Neurol. 1990 Aug;28(2):117-21. PubMed PMID: 2221841.

Dr. Michael S. Okun

Dubois B, Danzé F, Pillon B, Cusimano G, Lhermitte F, Agid Y. Cholinergic-dependent cognitive deficits in Parkinson's disease. Ann Neurol. 1987 Jul;22(1):26-30. PubMed PMID: 3631918.

Dubois B, Ruberg M, Javoy-Agid F, Ploska A, Agid Y. A subcortico-cortical cholinergic system is affected in Parkinson's disease. Brain Res. 1983 Dec 12;288(1-2):213-8. PubMed PMID: 6661617.

You can find out more about our National Medical Director, Dr. Michael S. Okun, by also visiting the Center of Excellence, University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life and 10 Breakthrough Therapies for Parkinson's Disease.

Advancing Research

What's Hot in PD? Measuring Quality and Assessing Depression in Parkinson’s Disease

depressed woman

April is Parkinson’s disease awareness month and we thought it would be fitting to discuss how we are approaching the measurement of quality, and how best to measure depression at the bedside in Parkinson’s disease.

The Parkinson's Foundation has been committed to improving the quality of care throughout its Centers of Excellence network and throughout the world by funding and promoting the Quality Improvement Initiative Study. The study was modeled after the Cystic Fibrosis Foundation’s successful registry, profiled by Atul Gawande. In the Cystic Fibrosis experience, their focus on identifying best practices yielded a 10 year increase in life expectancy. In Parkinson’s disease we are hoping for similar success.

The Parkinson's Foundation Quality Improvement Initiative was launched several years ago and the aim was to understand Parkinson’s disease and its care by annually completing a simple profile of the status of people with Parkinson’s and the treatments they receive: one patient assessed on one page, once a year. The study now has 5000 enrolled patients, and, by looking at how patients change each year, we are getting new insight into important issues like mobility, depression, and cognition in patients and their impacts on quality of life, caregiver stress, and hospitalization. 

A management guru named Peter Drucker described his philosophy as, “what’s measured improves.” Now, for the first time in a massive, multi-center study across all stages of the disease, we are measuring health and health care in people with Parkinson’s. I am really thrilled to be a part of this important initiative and I and my team are drawing insight from this project every day.

Another of the leaders on our Quality Improvement Initiative is Laura Marsh, MD, of the Houston VA. She specializes in mental health and Parkinson’s and has focused on the evaluation of depression in Parkinson’s disease. This month she published the long-awaited Methods of Optimal Depression Detection in Parkinson's Disease (MOOD-PD) study. This study compared 9 depression scales and made recommendations for use in Parkinson’s disease.

The most important finding was that depression is more common than many thought. She recommends that doctors always screen for depression in Parkinson’s disease patients because it can be well managed, but when it’s not identified, it can affect everything in a patient’s life. Interestingly, the depression screening on the commonly used Unified Parkinson’s Disease Rating Scale performed the worst, and was not recommended for use in screening patients. All other scales performed well. The authors stressed that depression screening should be part of the routine evaluation in Parkinson’s disease patients.

In conclusion, as we strive for better quality of care, we will need to improve our ability to measure quality and to select bedside tests that can help us to better optimize the management of all Parkinson’s disease patients. The Parkinson's Foundation Quality Improvement Initiative Study and the MOOD-PD study are two important steps in this direction.

Selected References

1. Okun MS, Siderowf A, Nutt JG, O'Conner GT, Bloem BR, Olmstead EM, Guttman M, Simuni T, Cheng E, Cohen EV, Parashos S, Marsh L, Malaty IA, Giladi N, Schmidt P, Oberdorf J. Piloting the NPF data-driven quality improvement initiative. Parkinsonism Relat Disord. 2010 Sep;16(8):517-21. Epub 2010 Jul 6. PubMed PMID: 20609611.

2. Williams JR, Hirsch ES, Anderson K, Bush AL, Goldstein SR, Grill S, Lehmann S, Little JT, Margolis RL, Palanci J, Pontone G, Weiss H, Rabins P, Marsh L. A comparison of nine scales to detect depression in Parkinson disease: Which scale to use? Neurology. 2012 Mar 14. [Epub ahead of print] PubMed PMID: 22422897.

Dr. Michael S. Okun

You can find out more about our National Medical Director, Dr. Michael S. Okun, by also visiting the Center of Excellence, University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life and 10 Breakthrough Therapies for Parkinson's Disease.

For more insights on this topic, listen to our podcast episode “Staging PD – UPDRS: What it Measures and What Your Score Means”.

 

Tips for Daily Living

Parkinson’s Disease and Strength Training: Benefits

Women exercising with weights

Exercise is vital for improving balance, mobility and overall health in persons diagnosed with Parkinson's Disease (PD). PD is the second most common neurological disease in the world(1). It is characterized by a deficit in dopamine resulting from a progressive loss of neurons in areas of the brain responsible for movement and coordination(2).

Recently, literature has demonstrated that participating in strength training regularly can improve symptoms, make dopamine use more efficient and possibly even slow the progression of PD! In this article, we will look at why strength training has benefits specific to PD, and discuss ways to make it safe and fun.

Why Exercise?

Exercise is amazing because it changes the way our brain functions. Studies have shown that in people who regularly exercise, brain cells use dopamine more efficiently. This occurs because areas of the brain responsible for receiving dopamine signals – the substantia nigra and basal ganglia, are modified. Exercise also increases the number of D2 receptors in the brain, meaning dopamine has more places to go. Additionally, researchers at the University of Pittsburgh were able to demonstrate that in animal models, exercise increased the amount of a neurotrophic factor called GDNF, which helps protect dopamine neurons from damage(3).

Choose Strength Training

The benefits of strength training include increasing muscular strength, endurance, dynamic balance and cognitive functioning. Recent studies have demonstrated that there are decreases in gross muscular strength in people diagnosed with PD, most notably in the back and hip extensors4. Researchers have speculated that this occurs secondary to postures developed throughout the course of the disease. As people begin to hunch their shoulders and lean forward instead of standing upright, postural muscles become weaker. When postural muscles become weaker, it is more difficult to balance, or recover from perturbations. This increases the likelihood of falling. Strength training is an excellent, safe way to increase strength, stability and confidence for those with PD.

Where to Start

Beginning a new exercise program can be intimidating at first. My suggestion is to find a fitness buddy – a friend or family member to start with, and help you stick to your program. Then, do your research. Build a strong program, and execute it with good form. A great resource for learning to perform exercises correctly is Exrx.net. You can also consult a local fitness expert, or ACSM guidelines for strength training. When exercising, be sure to focus on all 5 major muscle groups – chest, back, legs, arms and core (abdominals).

Tips for Exercising Safely

  1. Check with your doctor before beginning any new exercise program, and continue to take all medications prescribed by doctors. Strength training is not an alternative to medication.
  2. Make sure you hydrate! Drink water before, after and during your exercise to feel better and stay safe.
  3. Bring a copy of your workout with you, so you don't forget any exercises!
  4. Progress slowly. Make goals, and work towards them by perfecting your form and starting with light weights first. Remember, all good things take time. Have patience and enjoy the ride!

Danielle Leshinsky is a Certified Strength and Conditioning Specialist (CSCS) and a doctoral candidate at Emory University School of Medicine's DPT program. She is currently researching with Dr. Madeleine Hackney and the Atlanta VA Center for Visual and Neurocognitive Rehabilitation , looking at the effects of Tango on Parkinson's Disease. She is also working in the INSPIRE laboratory at the Emory Rehabilitation Hospital. Danielle chose to pursue a career in physical therapy because she finds it both challenging and rewarding. She plans to obtain a Specialist Certification in Neurology upon graduation in May 2016.

Science News

New Evidence Links Traumatic Brain Injury with Parkinson’s

Parkinson's Foundation Science News blogs

A new study finds that traumatic brain injury from a blow to the head, with loss of consciousness, may increase a person’s risk of developing Parkinson’s disease (PD) later in life. The results appear in the July 11 online edition of JAMA Neurology. The researchers did not find an association between head injury and Alzheimer's disease.

The neurological effects of head injuries are much in the news, with worry over repeated, relatively mild, concussions among athletes, and with the recent death of boxing great Muhammad Ali, who lived with Parkinson's disease. This new study, however, focused narrowly on the long-term effects of even one instance of trauma to the head — especially injuries involving loss of consciousness — among older people more representative of the general population.

Researchers led by Paul K. Crane, M.D., M.P.H., at the University of Washington in Seattle, analyzed self-reported data, collected between 1994 and 2014, from 7,130 people who had enrolled in other studies that gathered data on memory, cognition and aging. On average, study participants were 80 years old at the time of this report, and did not have dementia, PD, or Alzheimer’s disease when they enrolled in the original studies. Forty percent were men. Brain tissue was examined on autopsy for 1,589 participants, to search for signs of PD and Alzheimer’s disease.

Results

  • Eight hundred sixty-five study participants reported having had a traumatic brain injury with loss of consciousness at some time in their lives.
  • During the time study participants’ health was followed, 117 new cases of PD were diagnosed among the total of 7,130 participants.
  • A past traumatic brain injury with loss of consciousness longer than an hour was associated with three and a half times increased risk of developing PD.
  • History of traumatic brain injury was also associated with the accumulation of Lewy bodies in brain cells, the toxic clumps of alpha-synuclein protein that are the hallmark of PD.
  • Traumatic brain injury was not associated with mild cognitive impairment (MCI)|, dementia, Alzheimer’s or brain changes associated with Alzheimer’s.
  • Microinfarcts — microscopic strokes in the brain that may be a cause of dementia — were found more often in the brains of people who had traumatic brain injury that lost consciousness for more than one hour.

What Does It Mean?

Head injuries are common, even among non-athletes. Earlier studies have suggested that they might be related to developing Alzheimer’s.

But the new research found instead that just one traumatic brain injury with loss of consciousness of more than one hour was associated with Parkinson’s, and not Alzheimer’s. Although most people recover to normal functioning after a traumatic brain injury, this study suggests that the consequences from even a single head injury may take decades to develop.

The finding underscores the importance of preventing head injuries. It also suggests that additional research to understand the relationship between brain injury and Parkinson's, and why they are linked, might provide ideas for possible interventions for reducing risk of PD.

Beth Vernaleo Ph.D., Associate Director of Research Programs, PDF added, “While previous research has linked head injuries to neurodegenerative disease, this study illustrates a more specific finding — that a single blow to the head causing a loss of consciousness for more than an hour, even in one’s 20s, may lead to a three-fold increased risk of Parkinson’s decades later. Although the vast majority of people who experience head injury will not develop Parkinson’s, this study may provide clinicians with an additional diagnostic tool. For example, asking patients about history of head injury, amongst other symptoms and risk factors, may prove a valuable means of ascertaining the likelihood of a PD diagnosis.”

Science News

Is Parkinson’s Disease on the Rise?

Parkinson's Foundation Science News blogs

A new study finds that the number of new cases per year of Parkinson’s disease (PD), and related diseases known as parkinsonisms, may have increased over a 30-year period. A possible explanation lies in the dramatic decline in cigarette smoking in recent decades. The research appears in the June 20 online edition of JAMA Neurology.

Smoking reached its peak in the 1940s and 1950s in the United States. Between then and 2009, the smoking rate among American men went down from 67 percent to 23.5 percent. An earlier study suggested that smokers may have a reduced risk of PD, and speculated that the decrease in smoking could lead to a higher incidence of PD decades later.

Couple reading together in bed

Researchers led by Walter A. Rocca, M.D., M.P.H., set out to test the idea. They analyzed medical records of people living in Olmsted County, MN, a set of data that is exceptionally complete and available electronically. In records between 1976 and 2005, the researchers identified 906 people with parkinsonisms (diseases such as Lewy body dementia and progressive supranuclear palsy, which share some symptoms with PD) and 464 people with PD.

Results

  • Incidence rates of parkinsonism in men increased from 38.9 per 100,000 person-years between 1976 and 1985 to 55.9 between 1996 and 2005.
  • Rates of PD in men increased from 18.2 between 1976 and 1985 to 30.4 between 1996 and 2005. The increase was greater for men over age 70.
  • No similar trends were seen for women.
  • PD incidence was higher for people born between 1915 and 1925, suggesting that early-life exposure to influenza boosted PD risk.

What Does It Mean?

In the group studied, researchers found that parkinsonism and PD increased, especially among men over the age of 70. However, they caution that aspects of this population make it different from others — it is nearly all white, for example — and so it will be important to confirm the findings in other populations.

The decline in smoking provides a possible explanation, although other lifestyle or environmental changes also could increase PD risk or provide protection from PD.

Projected into the future, the rate of increase found in this study points to a much larger number of people with PD in the coming decades than indicated by earlier estimates. If this is indeed the trend, then effective planning throughout the health care system will be needed — and the requirement for new therapies and a cure is more urgent.

Investment in Parkinson's Prevalence
The foundation is taking a proactive role in understanding prevalence, by investing $250,000 in P4, the PDF Parkinson’s Prevalence Project. Read reactions from Dr. Beck and more about this project below.

“I believe this will be the first of several reports in the US to demonstrate what the Parkinson’s Disease Foundation has come to realize — that the number of people living with Parkinson’s is dramatically undercounted. However, because the population studied is not as ethnically diverse as the population of the US as a whole, it will be critical to see if the results hold true in other communities. It is for similar reasons that we view current estimates of Parkinson’s prevalence as likely inaccurate. This is why PDF is taking a proactive role in determining Parkinson’s prevalence in the US — using a diverse group of datasets to improve our estimates of how many people live with the disease and who they are. The answers will be the impetus to remind government, industry, and science of the urgency to better treat and end this disease."
-James Beck, Ph.D., Vice President, Scientific Affairs, Parkinson’s Disease Foundation

Raise Awareness

Expert Care Experience: Dance/Movement Therapy

Group of people dancing at exercise class

This blog is the fifth in a series detailing the roles of each member of a comprehensive care team, covering social workoccupational therapy, speech-language pathology and physical therapyLearn more about the healthcare professionals that are part of a comprehensive care team and how you can put your care team together today.

What Is Dance/Movement Therapy?

Dance/movement therapy is a form of psychotherapy that uses movement, in all forms, as a means of observation, assessment and intervention in the therapeutic relationship. Unlike dance, dance/movement therapy does not focus on a stylized choreography, specific set of skills or technique. Instead, it allows individuals to move and find comfort in their bodies and to express what words might be too difficult to uncover.

Dance/movement therapy can help support people with Parkinson’s disease (PD) in the moment, even when it is hard to be present to physical sensation and symptoms.

What Do You Do During a Dance/Movement Therapy Session?

There is no one-size-fits-all session, though there are some common basic components. In an individual session, you will likely start with a warm-up where the therapist guides you through movements, from head to toe.

You will be encouraged to move each body part, no matter how small. This allows you to become more aware of your body and experience your capacity for movement. Next, the therapist will coach you to use your body to express behaviors and thoughts or to explore movement patterns and preferences.

Group sessions might incorporate elements from a support group, a social dance or mindful movement class. For example:

When asked how she felt at the beginning of the dance/movement therapy group, Sally reported feeling isolated, standoff-ish and unsure of her ability to participate because of her tremor and poor balance. The therapist invited Sally to show what that looked like using her body. Sally slumped over in her chair, crossed her arms and lowered her gaze. Sally then lifted her chest, looked up to the ceiling and threw her arms up in the air. With a smile on her face, Sally said, “A weight has been lifted. Now, I feel free!”

Who Is a Dance/Movement Therapist?

Dance/movement therapists are registered or board-certified individuals with a master’s degree in dance/movement therapy. Depending on where they practice, dance/movement therapists may be clinical counselors, social workers, creative arts therapists or psychologists. Most have a background in psychology and dance, with a focus on dance as an outlet for mental health and expression. Dance/movement therapists are required to fulfill clinical internships in such settings as hospitals, treatment facilities, day programs, nursing homes, day schools or even private practice.

A dance/movement therapist is an integral part of the care team because he/she can mesh clinical counseling or social work with movement observation and assessment. The therapist’s keen ability to observe the relationship between movement and mental health helps foster a more holistic, mind-body approach to medicine.

Dance/movement therapists receive referrals from other care team members and often co-treat, co-facilitate and collaborate with them. As part of the team, your dance/movement therapist should communicate with other care team members about treatment plans, symptom management and disease progression.

What Symptoms Can Dance/Movement Therapy Help Treat?

Dance/movement therapy addresses motor and non-motor symptoms of Parkinson’s. It focuses on balance, coordination, gait and mobility, but also uses movement to address depression, digestive complications, anxiety and fatigue.

Furthermore, dance/movement therapy encourages individuals to prioritize their mental health. Embracing the arts as a mode of psychotherapeutic intervention and expression seems to help reduce stigma around mental health issues.

Research specifically on dance/movement therapy with PD is taking off. For example, Northwestern University in Illinois recently conducted a study on the effects of dance/movement therapy on fatigue in people with PD. More researchers are becoming interested in this topic, so expect to hear more about the impact of dance/movement therapy in the future. In the meantime, try it for yourself.

How Do I Find a Therapist or Program?

Dance/movement therapists and programs are all over the country. To find one nearest you, go to The American Dance Therapy Association’s website at www.adta.org. You can find a list of resources and a directory of therapists in your area. The toll-free Parkinson’s Foundation Helpline can also help connect you to information and resources: 1-800-4PD-INFO (473-4636).

Dance/movement therapy is often a wonderful complementary or adjunct therapy for individuals affected by movement disorders. Some dance/movement therapy sessions may be covered by private health insurance, which can make it an affordable and accessible option for treatment of symptoms and maintenance of quality of life. 

Erica Hornthal, LCPC, BC-DMT, is CEO of Chicago Dance Therapy. She is a clinical counselor and board-certified dance therapist who specializes in working with individuals living with movement and cognitive disorders. Additionally, Erica works with people of all ages and abilities to connect the mind and body to promote self-awareness, self-expression, healthy attachments, compassion and improved quality of life. 

For more insights on this topic, listen to our podcast episode “A Western Perspective on PD: Understanding Complementary Medicine”.

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