Needed: New Parkinson’s Vocabulary
Friday February 26, 2016
One of the less noticed challenges of Parkinson’s Disease is mastering the arcane vocabulary that describes the particulars of the disorder. If we want to speak clearly with our doctors and others about what ails us, we have to use strange words like “dyskinesia,” “festination,” “dystonia,” and “bradyphrenia.” Words that are fun to say on their own, but even more fun to rattle off as part of a sentence. “In spite of severe dystonia, she managed to festinate across the room.”
I like showing off my vocabulary as, much as the next person, (ok- I like it even more than the next person) but why do the doctors get to have all the fun making up the words? Plus, there are many word-worthy phenomena related to PD that they have overlooked! Who controls language controls how we think about about whatever it is we are talking about. Time for a little patient empowerment.
With that in mind, I offer some new PD words for us to consider adding to the current store.
“Pinballing” this one was coined by my wife to describe the tendency I and other people with PD have to walk erratically, knocking into shelves, signposts, and one another as we lurch through life.
“Bladderdash” adapted from the free-wheeling speech of Alaska Rep. Don Young, describes the desperate process of finding a bathroom, frantically fumbling to unbutton and unzip your pants, and whipping down your underwear in time (you hope) to empty your urgent bladder.
A “Murmur” of PD patients. A collective noun for a bunch of people with PD.
“Parkanoia” the feeling that people are covertly observing your PD symptoms. And judging you for them.
“No Parking Area” A place or circumstance where you feel uncomfortable exhibiting Parkinson’s symptoms, like in a restaurant, on a plane, in a park, at school, in church, at the grocery store, in a barber shop, on the subway, at a movie, attending a concert, at work, in the gym, at the library, buying shoes, on a date, at the pool, in court, at the ball game, in a bar, at a museum, with your neurologist, etc… etc… etc…
“Depillitated” Caught without access to your pills when you need them.
“Repillitated” To have access to your pills restored.
“Ghost Dose” Skipping a pill by accident, then grinding to a halt.
“Parkinstoned” To appear to be drunk or high due to PD symptoms such as lurching, falling, and slurred speech.
“Dopameanie” A perfectly nice person with Parkinson’s Disease who is mistaken for an anti-social jerk because they don’t smile due to facial muscle freezing.
“Parkinspotting” The habit of mentally diagnosing random strangers who lack arm-swing, have soft, hoarse voices, and/or walk slowly, but are clueless about the tell-tale symptoms of PD they are exhibiting.
Think how much easier these new words will make life. When someone asks what you did today you can say “I went to the mall to do a little Parkinspotting, and suddenly realized I had ghost-dosed my last pill. Wouldn’t you know, I was depillitated, I’d left them on the nightstand at home. Naturally parkanoia kicked in, and on top of that, I had to bladderdash to the restroom. Of course, by then I was totally parkinstoned and pin-balling all over the place. Security eventually threw me out, but I’ve been repillitated, and I’m fine now., except for a few bruises.”
See how easy and fun that is? If you have any custom-made PD words you think others would find helpful, don’t be stingy, please share them via the comments field below!
This booklet explains changes in speech, voice and swallowing that can affect people with Parkinson’s disease. Exercises for speech and voice along with advice for improved swallowing are included, along with advice on speech-language therapy and medications.
Changes in speaking, chewing and swallowing are common in Parkinson’s disease (PD) and can interfere with important parts of life, such as the ability to eat well. But they don’t always have obvious signs, and many people with PD are not aware of these difficulties, or don’t know how to describe them.
A worthwhile book by Lynda Shrager from Slingerlands.
- CDC guidance on effective fall interventions
- Information about Older Adult Falls
- CDC STEADI initiative for healthcare providers
- CDC Feature “Keep Older Adults Safe from Injury”
Rob Mermin, founder of Circus Smirkus, trained with legendary mime Marcel Marceau before embarking on a 40-year career in the theater and circus world. He will talk about how he adapts basic pantomime and circus techniques to help people with Parkinson’s cope with movement limitations. Mime techniques include visualization, body language, nonverbal communication, articulation of gesture, and creative use of imagery and space. Mime is a valuable method to enhance perception of one’s immediate movement problem, visualize a better result, and overcome the limitation through focused action. Come and put your Mime Over Matter!
Premiere Performance by the PD Players directed by Rob Mermin: The Parkinson’s Performance Troupe in “Mime Over Matter!” At the Unadilla Theater in E. Calais, Vermont – June 17, 2017
In Parkinson’s Disease, early diagnosis does matter—for some obvious reasons, and also for reasons that are rarely discussed. (recent edit 2/20/2018)
Carolyn Allen Zeiger, Ph.D.
Retired Licensed Psychologist and spouse of someone with Parkinson’s Disease
The question I always hear people with Parkinson’s (PWPs)—and their spouses—ask about someone else with PD is not, “How long have you had PD?” but “When were you diagnosed?” Given that there is no definitive medical test to confirm the diagnosis, the delay between symptom onset and diagnosis is generally a few years. The thinking used to be that an early diagnosis didn’t matter. After all, at this time it can’t be cured, it’s going to progress, and perhaps it is best to delay the use of dopamine replacement medications since they only provide symptom relief. In addition, even some physicians still harbor the mistaken belief that these medications tend to lose their effectiveness over time. Generally unstated, is also the thought that early in the progression of the disease it doesn’t have a big negative impact on the patient, or his life in general. He’s doing well enough to get by. But is he or she? And what about the spouse or partner?
Fortunately, more doctors are focusing on early diagnosis. But not for a reason that I find compelling: the impact of PD on our most intimate relationships—spouse, partner, lover. So many times I have heard, and experienced myself, the painful impact of undiagnosed PD on our closest relationships. Sometimes the impact is so great as to mean the ending of even long-term marriages when unidentified symptoms become burdensome or sources of ongoing conflict.
Rachel is a Holistic Health Coach and is really focused on helping folks dealing with chronic illness, or pain. Rachel has expressed a strong interest in helping folks dealing with movement disorders, especially people with Parkinson’s. She takes a multi-disciplined approach to dealing with her clients.
Rachel’s primary goal is to support and guide her clients, whether healthy or living with chronic pain or illness, to live a more healthy and fulfilling life. Working closely with her clients support system and health care practitioners, Rachel will develop customized programs to help achieve individual health and wellness needs. In addition, she uses
insights from the latest research in positive psychology and health.
From Here to Wellbeing
Rachel Kurtz, Holistic Health Coach
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518-260-3973 * email@example.com
See attached flyer
Parkinson’s disease (PD) can make daily living challenging. As the disease progresses, the motor symptoms such as tremor or shaking, stiffness, slow movements, and unsteady balance can make it difficult to accomplish everyday tasks, but there are many assistive devices available to make daily activities easier. Assistive devices can also help improve a person’s safety around the home and reduce the risk of falls.
There is speculation that dopamine enhancing medications can result in a surge of creativity in people living with Parkinson’s.
Some of the reasons art-making can benefit you:
- Finding Pleasure. Art making is enjoyable. There is no such thing as a “wrong” mark. Every expression is valid.
- Experiencing Control. Art making is an activity in which the artist — you— can experience choice (through color, medium, line, subject matter, etc.) and control over your environment.
- Valuing Individuality. Free creation can encourage spontaneity which can, in turn, improve confidence in your own ideas and in yourself, overall.
- Expressing Yourself. Art is another language for communication that can be done at an artist’s own pace. The pressure to communicate quickly, accurately or without hesitation does not exist.
- Relaxation. Art making has been proven to lower blood pressure, reduce repetitive and uncontrollable (anxious) thoughts and lift depression.
- Finding Flow in Mind-Body Connection. In a relaxed state with focus on the expression rather than on the physical movement itself, motion can become more fluid.
- Strengthening Concentration, Memory & Executive Functions. Art making increases the bilateral activity in the brain. When drawing or painting, you are using both the right and the left hemispheres of the brain. This is wonderful way to take greater advantage of mental resources.
ART THERAPY AND PARKINSON’S SYMPTOMS
In addition to the intangible and ethereal ways that life can be enhanced through creativity and expression, art making can be used therapeutically to address specific symptoms of Parkinson’s.
- Tremor. Approximately 70% of people living with Parkinson’s are affected by tremor, and this can be exacerbated by stress. Relaxation is key. In an art studio or other safe space where acceptance is nurtured and focus is on the process rather than on the product, art making can lower blood pressure, slow down breathing and calm the central nervous system. Acceptance of a tremor can actually soothe the tremor.
- Freezing. When the body is on autopilot, often during repetitive movement, and is interrupted, neuromuscular freezing can result. When you are deeply immersed in art making, the focus shifts to creating with deliberate, novel motions, and you are less likely to freeze.
- Impaired speech. The physical and cognitive symptoms of Parkinson’s can result in impaired speech. Self-expression and communication with others is essential to well-being. Art making opens a door for non-verbal communication. The act if creating benefits you, the artist, and the act of sharing what you’ve created strengthens your relationships with others.
- Isolation and Depression. The social and emotional connections you form by sharing a safe, creative space are invaluable for combating isolation and depression. An art therapy support group can be beneficial for those living with Parkinson’s as well as for care partners and caregivers. I have witnessed first hand the emotional support, information, and inspiration that members of these groups provide to one another in a way that only someone that has experienced living with Parkinson’s could do.
7 Ways the Arts Can Help People with Parkinson’s Disease
- Singing has been found to help people with Parkinson’s disease improve voice strength and volume.
- Besides being relaxing, playing an instrument, painting and other arts endeavors can help people with Parkinson’s maintain motor skills.
- Use your craft to help raise awareness about Parkinson’s disease. Whether you’re painting a self portrait, writing a personal essay or even penning a play, creative works can help others understand your experience better.
- Many people with Parkinson’s have found that dance helps improve their balance, and that moving to a rhythm helps them avoid freezing episodes. Any exercise has also been found to improve Parkinson’s symptoms such as gait and flexibility.
- Art isn’t limited to painting and drawing. Any engrossing activity that you enjoy can help you relax and potentially manage symptoms.
- Enjoying a hobby can also be a way to connect with others who also have Parkinson’s, or who simply share your interests.
- If there’s a hobby you enjoyed that your Parkinson’s symptoms have impacted, our community recommends trying them again and making the most of your new “style.”
Foods to eat, foods to avoid. Supplements and more
An Overview of Dyskinesia
Dyskinesia is an abnormal, uncontrolled, involuntary movement. It can affect one body part, such as an arm, leg or the head, or it can spread over the entire body. Dyskinesia can look like fidgeting, writhing, wriggling, head bobbing or body swaying. It doesn’t happen in everyone with Parkinson’s, and in those who do have it, it occurs to different degrees of severity. In some people, dyskinesia may be painful or bothersome to the point that it interferes with exercise, social life or other daily activities. Many people, though, say they prefer having dyskinesia to being rigid or less mobile due to Parkinson’s.
Dyskinesia tends to occur most often during times when other Parkinson’s symptoms, such as tremor, slowness and stiffness, are well controlled. (This is what doctors and researchers call “on” with dyskinesia.) Stress or excitement can exacerbate dyskinesia.
More from M.J Fox https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?dyskinesia
Sleep is essential for everyone’s overall health and well-being. Unfortunately, problems with sleep and alertness are common in Parkinson’s disease (PD). It is likely that at some point, you will experience poor sleep and/or impaired daytime alertness related to your PD — maybe you already have.
The Parkinson’s Foundation has tools and information you can start using right now to get some quality sleep:
Our newest book, Sleep: A Mind Guide to Parkinson’s, is your practical guide for achieving good sleep health. This book addresses all aspects of sleep: healthy sleep, sleep changes due to aging and sleep problems due to Parkinson’s. Don’t miss the tips and personal stories from others in the Parkinson’s community.
What type of bed is ideal for someone with PD? Find out the answer to this question and more in our video Rest and Sleep. Learn how both you and your bed partner can get better sleep and how to create a restful environment. Caregivers, watch Part 2 for guidance on how to help your loved one safely get in and out of bed.
In our Expert Briefings webinar, Aleksandar Videnovic, MD, from Massachusetts General Hospital/Harvard Medical School discusses the most common sleep issues related to PD. Dr. Videnovic addresses sleep fragmentation, restless legs syndrome, REM sleep behavior disorder and excessive daytime sleepiness.
Have more sleep or PD-related questions?
Call our Helpline at 1-800-4PD-INFO (473-4636) to speak to one of our Parkinson’s information specialists or email firstname.lastname@example.org.
I Had Help Along The Way’ TODAY with Megyn Kelly
I love these hand-drawn illustrations of what Santiago Ramon y Canal saw when looking at brain tissue through a microscope.
Objective: Make a work of art using ink and paper. Have fun.
Reason: Making art is therapy see http://cdparkinsons.org/creativity-and-art-therapy/
- Card stock paper
- India ink
- Acrylic Ink
- Alcohol Ink
- Chopstick or shish-kabob skewer
- Cover the table with plastic table cloth. This can be messy.
- Choose a piece of card stock paper to use as your canvas
- Place a drop of ink on the paper
- Inhale slowly through your nose.
- Purse your lips as if you are whistling.
- Exhale sharply with your lips close to the drop of ink. Imagine that you are blowing a fly off the paper. Try to get the drip to move. Look for wet spots of ink and try to blow there.
- Use the skewer to make ink lines if you wish.
- Use the thicker paint to make larger colorful blobs if you wish
- A drop of alcohol ink makes a perfect circle on the paper. Drop a single drop of alcohol ink onto the paper if you wish.
- Look at what you made. Add more ink if you think that would make the design better.
- Try again with a new piece of paper if you wish.
- Sign your work(s) of art.
- Keep your art for yourself OR Give your work of art to someone else OR throw it away. Whatever you chose to do with it, you learned from the experience.
One of the most frustrating symptoms of living with a chronic illness is brain fog. There are medications to treat many symptoms of chronic diseases, but sadly there isn’t yet a pill that takes away brain fog. However, there are ways to deal with it so patients can minimize its effects and lead a normal life.
Read more from the New York Times
How to Be Happy https://nyti.ms/2hAjn5H
SuperBetter increases resilience – the ability to stay strong, motivated and optimistic even in the face of difficult obstacles. Playing SuperBetter makes you more capable of getting through any tough situation—and more likely to achieve the goals that matter most to you. Proven results in just 10 minutes a day
Phone: (518) 447-7198
Caregiver support programs assist informal caregivers—spouses, adult children, other family members, friends and neighbors in their efforts to care for older persons who need help with everyday tasks.
The programs include services to assist the caregiver in their efforts through:
- Information, Assistance and Referral
- Counseling and Support Groups
- Caregiver Training
- Home Based Services*
- Personal Emergency Response Systems*
- Short term respite to relieve the caregiver through in-home care or social or medical day care or overnight care in a facility*
Senior Services of Albany
Caregiver Support Services
Helping a relative or friend with life’s daily tasks? Unsure what help is available? Want to be prepared for the next steps? We can help!
Reaching isolated family caregivers not being served by in-person groups and evaluating the effectiveness of support groups conducted over the telephone.
Catholic Charities Senior & Caregiver Support Services
Catholic Charities began in Schenectady County more than 75 years ago. While the specific programs and services have changed, the commitment has not. Catholic Charities remains committed to offering people in need-our brothers and sisters-a respectful helping hand, a kind and caring word, and hope for tomorrow.
Catholic Charities Senior & Caregiver Support Services (CCSCSS) provides a range of programs and services to support quality of life for seniors – Caregiver Support Services, Dayhaven Social Adult Day Services, Health Insurance Information, Counseling & Assistance, Long Term Care Ombudsman, Nutrition Outreach and Education, Meal on Wheels, Senior Dining Centers – Friendship Cafés, and Transportation Services (Medical, Dayhaven, and Social).
Albany Stratton VA Medical Center
Care for Caregivers
As a Caregiver, the very best thing you can do for those who depend on you is to take care of yourself. VA offers a number of services to support Family Caregivers. These services are available in and out of the home to help you care for the Veteran you love and for yourself.
Caregiver Support Line
Help is just a phone call away with VA’s Caregiver Support Line – 1-855-260-3274. Caring licensed professionals staffing the support line can connect you with VA services, a Caregiver Support Coordinator at your nearest VA medical center, or just listen if that’s what you need right now.
Caregivers can participate in monthly telephone education groups, where they can discuss self-care tips and ask questions on a variety of topics. Want to learn more about the monthly calls? Listen to a recording or view an educational handout.
Peer Support Mentoring
Caregivers of Veterans of all eras may participate in peer support mentoring, both as mentors and as mentees usually for 6 months. Mentors and Mentees communicate using email, telephone, and letter writing depending on what works best for both of them. Unable to commit to 6 months, one-time support is available through the Compassionate Connections Program.
Building Better Caregivers
Build the skill and confidence to care for your Veteran at home with the free, online workshop, Building Better Caregivers™. The program has been recognized for its ability to reduce caregiver stress and depression, and increase caregiver overall well-being.
Caring for Seriously injured Post-9/11 Veterans
The program for Comprehensive Assistance for Family Caregivers provides approved caregivers services such as a monthly stipend, travel expenses, health insurance, mental health services, and respite care.
Mentoring in the challenging areas of caregiving, stress management, mood management, and problem-solving is available through REACH VA . The program is available for Caregivers of Veterans diagnosed with: ALS, Dementia, MS, PTSD, or Spinal Cord Injury/Disorder.
Visit Tips & Tools for additional information on managing medicines, talking with your provider, caring for oneself, staying organized, and moving around safely.
Caregiver Support Coordinator
Your local Caregiver Support Coordinator is a licensed professional who can support you by matching you with services for which you are eligible, and providing you with valuable information about resources that can help you stay smart, strong and organized as you care for the Veteran you love. Enter your zip code to view contact information for your area.
Caregiver Support Line
With VA’s Caregiver Support Line – 1-855-260-3274 – assistance is just a quick phone call away. If you’re just getting started with VA, calling the Caregiver Support Line is a great first step to take to learn more about the support that’s available to you.
Kinship Caregivers 449-2001
Catholic Charities Caregivers
275 State St., Albany, NY 12202
Meets 1st and 3rd Tuesdays
|Family Caregiver Support provides support groups for caretakers of the elderly and disabled or for seniors age 55 and up, caring for grandchildren.||Albany||FAMILY CAREGIVER SUPPORT||ALBANY COUNTY DEPARTMENT FOR AGING|
|Caregiver Services||Provides information, counseling, assistance, and support to caregivers at home or in the workplace. Also provides telephone support groups and educational programs to adult children and spousal caregivers of the elderly across the Capital Region. Caregiver Connection manages grant funds that can help caregivers pay for other services, such as Meals on Wheels, Social Adult Day Programs, and Personal Emergency Response Systems (PERS).||Albany||CAREGIVER CONNECTION||SENIOR SERVICES OF ALBANY|
Stress can magnify Parkinson’s symptoms. This video may give you some stress reducing strategies.
It is not uncommon for the stresses of daily life — feeling overwhelmed, under prepared and over stimulated — to bring about anxiety and unrest. These psychological issues can be very important to your health, and even exacerbate the symptoms of Parkinson’s disease. That is why it is so important to take a good look at what may be causing stress in your life and learn how to deal with the situations that give rise to anxiety.
Reducing stressors in life is not always easy. You might need to take a closer look at your life to find what needs to change. Sometimes just reducing the negative influences in your life can make a big difference. Here is what I do to reduce stress and overcome anxiety — and what you can try, too.
Turn off the news. Overexposure to events that are beyond your control can create tension and worry.
Eliminate violent and mindless TV and stressful video games. Use that time to engage in a hobby or something you enjoy.
Minimize exposure to negative people. Instead, connect with people who uplift you.
Learn some relaxation techniques. Meditation, yoga and deep breathing can help restore a sense of calm. Seek a yoga class tailored to Parkinson’s patients.
Seek solace in music. Try classical, soft rock, nature sounds or alternative. Set up a comfortable listening area where you can fully enjoy the moment.
Stay passionate. If Parkinson’s takes something you love away or care about, find a hobby to replace it. If you can no longer paint, pick up a camera and take pictures or learn to sing.
Stay open-minded and resilient. This will help you handle adversity.
Exercise away the anxiety. Talk to your doctor or physical therapist about setting up an exercise regimen that meets your health needs.
Socialize. Nothing can empower you like a feeling of camaraderie. Get involved with a community organization, a support group, or a charity that you believe in.
Learn to laugh. Keeping a sense of humor is a sure way to beat anxiety. Watch a funny video and read something that makes you laugh every day.
Remember, anxiety and depression often go together. But the symptoms of anxiety can include: feelings of panic, fear and restlessness, sleep disturbance, poor concentration, palpitations, shortness of breath, irritability, and dizziness.
If you feel that you are totally overwhelmed by your feelings, consult with your physician. He or she can refer you to a mental health professional. There is no shame in seeking help, when you need it. Everyone deals with his or her anxiety differently.
People with Parkinson’s disease may have higher levels of creativity than their healthy peers, a new study finds.
Researchers compared the creativity levels of 27 Parkinson’s patients with 27 healthy people of the same education level and age. Participants were asked to interpret abstract pictures, answer questions aimed at provoking imagination (such as, “What can you do with sandals?”) and explain imaginative metaphors such as a “scarf of fog.”
Robin Morgan, who was diagnosed with Parkinson’s several years ago, read four “quietly powerful poems — meditating on age, loss and the simple power of noticing” at a recent TED talk.
From MJ Fox foundation
Should you avoid any foods or supplements with Parkinson’s disease?
What dietary changes can ease Parkinson’s symptoms?
What are antioxidants and what foods contain them?
Should I eat fava beans or any other special foods?
When facing a diagnosis of Parkinson’s disease, it is understandable to feel anxious or depressed. But mood disorders such as anxiety and depression are real clinical symptoms of Parkinson’s, just as rigidity and tremor. In fact, at least half of all Parkinson’s patients may suffer from clinical depression at some point during the course of their disease, according to some estimates.
The good news: Over the past decade, researchers have placed increasing focus on investigating these aspects of the disease, and today we have a better understanding of how to treat mood disorders in Parkinson’s and increase quality of life.
Feeling worried is an understandable reaction to a Parkinson’s diagnosis. But when feelings of constant worry or nervousness go beyond what is understandable, a person may be experiencing anxiety, which is more serious.
Anxiety is a common nonmotor symptom of PD. It is important to note that anxiety is not simply a reaction to the diagnosis of Parkinson’s, but is instead a part of the disease itself, caused by changes in the chemistry of the brain. Estimates show that between 25 and 45 percent of people with PD experience an anxiety disorder at some point.
Read more at http://www.pdf.org/anxiety
There are two main types of treatment options for anxiety: medications and psychological counseling (psychotherapy). Depending on the severity of symptoms, psychotherapy can be used alone or combination with medication. NPF recommends a personalized, holistic and comprehensive strategy for the treatment of mental health problems, meaning that care should be tailored to each person’s individual health needs and preferences.
There are many different ways in which a person with Parkinson’s can experience anxiety. The following is a list of common anxiety disorders and a description of symptoms associated with each form. As many as two out of five people with Parkinson’s will experience one of these forms during the course of their illness.
Some people with Parkinson’s may experience anxiety including feelings of unease, worry and fear.
It is often a natural reaction to situations we find threatening or difficult. There are a number of ways of managing anxiety.
read more at http://www.pdf.org/sleep_disturbance
Many people with Parkinson’s disease (PD) have trouble sleeping through the night.
In some cases, PD symptoms like rigidity or tremor keep people awake. The brain changes that are part of PD also can cause sleep difficulties, and some people have problems sleeping even before movement symptoms develop and PD is diagnosed. In addition, some PD medications can disrupt sleep at night, and others make people sleepy during the day.
A good night’s rest is essential to feeling well. Disrupted sleep can affect your health, mood and overall quality of life. Furthermore, when people with PD don’t sleep well, the sleep of their care partners is disrupted too. Care partners also need restful sleep to stay healthy.
Nighttime Sleep Difficulties
- Difficulty going to sleep, because PD symptoms like rigidity make it hard to get comfortable or turn over.
- Difficulty falling asleep due to symptoms of anxiety or depression.
- Difficulty staying asleep, because of a need to use the bathroom during the night, the return of motor symptoms when medications wear off, pain or hot flashes with night sweats.
- Noise produced by tremor against a pillow.
- Vivid dreams or nightmares caused by levodopa medications.
- Early morning awakening, from a too-early bedtime or associated with depressed mood.
- An overwhelming urge to move or an unpleasant sensation in the legs caused by restless legs syndrome.
- Loud snoring, restless sleep and pauses in breathing during the night caused by sleep apnea. Although sleep apnea is usually associated with being overweight, this is not the always the case for people with PD. As many as 40 percent of people with PD have sleep apnea.
- Activity, sometimes violent movements such as kicking, punching, running or getting out of bed due to rapid eye movement (REM) sleep behavior disorder. People with REM sleep behavior disorder do not relax their muscles normally during sleep, and thus act out violent dreams. This affects about a third of men with PD, but is less frequent in women with PD.
- Disruption in the normal sleep-wake cycle caused by excessive sleepiness during the day or taking long naps during the day.
Troublesome Daytime Sleepiness
- Excessive sleepiness during the day may be a symptom of PD and may even start before the characteristic movement symptoms appear.
- Many PD medications can cause sleepiness during the day and may even cause sudden sleepiness with potentially dire consequences, such as falling asleep while driving.
- Too much napping during the day makes it hard to sleep through the night.
Good sleep is a foundation for good health. Not only does it contribute to tiredness and fatigue, it can also worsen any cognitive issues you are experiencing. If you have trouble sleeping, remember that you don’t have to “just live with it.” Medical therapies can help some sleep difficulties:
- A long-acting levodopa medication might prevent PD symptoms from returning during the night. Talk to your doctor about adjusting your PD medications to maximize wakefulness during the day and sleep at night, while controlling your symptoms.
- For REM sleep behavior disorder, doctors may prescribe melatonin or clonazepam (Klonopin®), which is a long-acting sedative.
- For sleep apnea, wearing a CPAP device (Continuous Positive Airway Pressure device) at night can help prevent obstruction of the airways. You need to have an overnight sleep evaluation for a sleep apnea diagnosis to be made.
- Talk to your doctor about over-the-counter sleep aids, such as melatonin, as well as those available with a prescription. It is important to balance the benefits of sleep medications with the risks, especially of daytime sleepiness, cognitive decline and increased falls.
- Antidepressants are sometimes prescribed to help nighttime sleep.
- If urinary frequency keeps you up at night, be sure your doctor rules out causes other than PD. In addition, there are several medications that can be helpful, including oxybutynin (Ditropan®), tolterodine (Detrol®), trospium (Sanctura®), solifenacin succinate (VESIcare®), darifenacin (Enablex®), mirabegron (Myrbetriq®) and fesoterodine fumarate (Toviaz®). If your doctor has difficulty managing bladder symptoms, you may be referred to a bladder specialist (urologist).
- Some physicians prescribe stimulants to help people with PD stay awake during the day.
Tips for Better Sleep
People with PD — and their care partners too — can take these steps to get to sleep faster and stay asleep:
- Keep a regular sleep schedule — go to bed at the same time each night and get up at the same time each morning.
- Choose your bedtime based on when you want to get up and plan to spend seven to eight hours a night in bed.
- Make a bedtime routine — for example, snack, bath, tooth-brushing, toileting — and follow it every evening.
- Spend time outdoors and exercise every day, in the morning if possible. Avoid exercise after 8:00 PM.
- If you can’t get outdoors, consider light therapy — sitting or working near a light therapy box, available at drug stores and department stores.
- If you nap, try to do so at the same time every day, for no more than an hour, and not after 3:00 pm.
- Avoid stimulants like caffeine, nicotine and alcohol, especially six hours before bedtime. While alcohol can initially cause sleepiness, it actually disrupts sleep.
- Avoid heavy meals in the evening.
- If you take PD medications at night, keep your dose and a glass of water close by so you don’t have to get up in the middle of the night.
- Sleep in a cool dark place and use the bed only for sleeping and sexual activity. Do not read or watch television in bed.
- Avoid “screen time” — television, phones, tablets such as your iPAD — one or two hours before bed.
In addition, people with PD can:
- Use satin sheets and pajamas to make moving in the bed easier.
- Minimize drinking liquids for three hours before bedtime to help prevent frequent nighttime urination.
- Go to the bathroom immediately before retiring.
- Place a commode next to the bed, to minimize the effort, and the light needed, to get up during the night.
What causes sleep problems in Parkinson’s?
Difficulties with sleep can be caused by a number of factors. Some are directly related to Parkinson’s and its treatments, while others are completely unrelated. While many common issues can be improved with minor medication changes or other tweaks, it is important to understand the causes of common sleep issues associated with Parkinson’s and to discuss with your neurologist and other members of your care team to get the best sleep you possibly can.
MEDICATIONS read more
PAIN read more
ANXIETY, DEPRESSION AND OTHER PSYCHOLOGICAL ISSUES read more
NIGHTTIME TRIPS TO THE BATHROOM (NOCTURIA) read more
CAUSES NOT RELATED TO PARKINSON’S read more
pain not connected to Parkinson’s or sleep apnea.
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If you have Parkinson’s disease, you are likely to feel stress related to your tremors. Sometimes, you may feel self-conscious. That alone is stressful. These simple relaxation solutions open up natural relaxation responses which can help improve your mood and ease your mind.
The National Institutes of Health (NIH) considers relaxation exercises to be safe for most people. However, just like with exercise routines, people with serious physical health problems such as Parkinson’s should discuss the techniques with their healthcare provider before starting a relaxation routine.
There are many viable techniques for relaxing. These include deep breathing exercises, self-hypnosis, and guided imagery. Each relaxation technique goal is to produce a natural reaction from the body. This should include: lower blood pressure, slower breathing, and a sense of well-being.
We found five easy relaxation exercises that are simple enough for most people to do1 in a chair or while lying in bed.
Place your hand just beneath your navel so you can feel the gentle rise and fall of your belly as you breathe. Breathe in. Pause for a count of three. Breathe out. Pause for a count of three. Continue to breathe deeply for one minute, pausing for a count of three after each inhalation and exhalation.
While sitting comfortably, take a few slow deep breaths and quietly repeat to yourself, “I am” as you breathe in and, “at peace” as you breathe out. Repeat slowly two or three times. Then, feel your entire body relax into the support of your chair.
Raise eyebrows up and tense the muscles across the forehead and scalp. Feel the tension build and hold. Take a deep breath. As you exhale say “relax” while letting the tension leave your body.
Relax your facial muscles and allow your jaw to open slightly. Let your shoulders drop. Let your arms fall to your sides. Allow your hands to loosen so there are spaces between your fingers. Uncross your legs or ankles. Feel your thighs sink into your chair, letting your legs fall comfortably apart. Feel your shins and calves become heavier and your feet grow roots into the floor. Now, breathe in slowly and breathe out slowly.
Observe your abdomen rising and falling with each breath. Inhale and press your navel toward the spine then tense your abdomen. Feel the tension build and hold it. Take in a deep breath. As you exhale say “relax,” and let the tension leave you.
Here’s a PDF with more relaxation techniques from the University of Michigan.
The NIH recognizes the relaxation response as having broad health benefits including the reduction of pain and restoration of sleep. In addition, research on the relaxation response has shown that this simple technique can increase energy and decrease fatigue. It can increase motivation, productivity, and improve decision-making ability, too. The relaxation response lowers stress hormone levels and lowers blood pressure.
The relaxation response is your personal ability to make your body release chemicals and brain signals that make your muscles and organs slow down and increase blood flow to the brain. We hope these stress relieving solutions help you find a relaxation routine that suits you so that you will continue to practice it each day.
From AARP Prepare to Care Manual
This guide is designed to help you and other family members discuss and create a caregiving plan for yourself or an aging parent, other relative, or close friend or neighbor. Each of the following five steps includes information on how to get started, questions to ask, and where to find basic resources. Don’t be discouraged if you can’t answer every question or fill in every blank. And remember, you don’t have to do it all at once. The important thing is to start—and continue—the conversation in a way that works for you and your family. STEP 1 Prepare to Talk STEP 2 Form Your Team STEP 3 Assess Needs STEP 4 Make a Plan STEP 5 Take Action
Parkinson’s disease creates many challenges to getting a good night’s rest. Try these tips to help you get enough rest and sleep, which is an important component of overall health and quality of life.
Getting a Good Night’s Rest
- Make a regular, relaxing bedtime routine a habit.
- Maintain a regular sleep schedule: get up and go to sleep at the same time every day.
- Get plenty of bright light exposure during the day, particularly natural daytime light.
- Decrease fluids several hours before bedtime, and go to the bathroom before getting into bed to sleep.
- Avoid strenuous exercise, alcohol, nicotine and caffeine within 4 hours of your bedtime.
- Use your bed only for sleeping and intimacy with your partner.
- Banish animals from the bed!
- Customize your sleep environment: invest in a good mattress and pillows.
- Set the bedroom temperature at a cool, comfortable level.
- Limit daytime napping to a 40-minute NASA nap (yes, tested by astronauts!).
- Lie down to sleep only when sleepy. Learn to tell the difference between fatigue and sleepiness.
- If you are unable to sleep after 15 minutes, get out of bed and engage in a relaxing activity like listening to music, meditation or reading until you are sleepy.
- Turn off the TV. If weaning yourself of a TV habit is difficult, try a relaxation or nature recording.
- Keep lighting and noise at low levels when trying to sleep.
- Eliminate the common but bad habit of “checking the clock” throughout the night.
- Limit prescription sedatives to a 2-week period; instead, try over-the-counter alternatives such as Valerian root capsules.
- Sleep as much as needed to feel refreshed, but avoid spending too much time in bed.
Getting into Bed
- Approach the bed as you would a chair; feel the mattress behind both legs.
- Slowly lower yourself to a seated position on the bed, using your arms to control your descent.
- Lean on your forearm while you allow your body to lean down to the side.
- As you body goes down, the legs will want to go up like a seesaw.
- DO NOT put your knee up on the mattress first. In other words, don’t “crawl” into bed.
Rolling or Turning Over in Bed
- Bend your knees up with feet flat.
- Allow knees to fall to one side as you begin to roll.
- Turn your head in the direction you are rolling and reach top arm across the body.
- Some PD patients find that “silk sheets” help them move better in bed.
Scooting Over in Bed
- Bend your knees up with feet flat.
- Push into the bed with feet and hand to lift your hips up off the bed. Then shift hips in the desired direction.
- Finish by repositioning feet in the direction your hips moved.
Getting Out of Bed
- Bend knees up, feet flat on the bed.
- Roll onto your side toward the edge of the bed by letting the knees fall to that side. Reach across with the top arm, and turn your head to look in the direction you are rolling.
- Lower your feet from the bed as you push with your arms into a sitting position.
Introducing the 2017 Summer Adaptive Recreation Experiences … Sunnyview’s Adaptive Recreation Experiences program provides individuals with disabilities the opportunity to return to previously enjoyed activities or to try something new. Sessions are designed to encourage and assist each participant to have fun, and be successful on a variety of levels. All programs are open to those in wheelchairs, as well as ambulatory participants. Experiences are staffed by Sunnyview therapists, volunteers, and experts in that specific activity. Each activity offers a unique opportunity to try our adaptive equipment
More information on printable flyer here
Most people know of Parkinson’s disease and have a good idea of its symptoms, but very few know much more than that about this progressive illness. Since April is Parkinson’s disease awareness month, we’ve put together some simple stats and facts that you can share near and far.
This post appeared first on Parkinson’s News Today.
It’s a movement disorder.
Parkinson’s disease is a neurodegenerative disease whereby cells responsible for producing dopamine die off in the substantia nigra area of the brain. Dopamine is essential for movement as it acts as a transmitter for signals from the brain to other parts of the body.
Who found it?
Parkinson’s disease was discovered by British surgeon Dr. James Parkinson in 1817.
How prevalent is it?
Approximately one million people have Parkinson’s disease in the U.S. and there are around 50,000 new cases diagnosed eac1h year.
Most patients are middle-aged.
The average age of someone diagnosed with Parkinson’s disease is 56. Around 4 percent of Parkinson’s patients are diagnosed before the age of 50 and it’s considered young-onset if diagnosed before the age of 40.
When is it considered young-onset Parkinson’s disease?
It’s considered young-onset if diagnosed before the age of 40. The youngest recorded case of Parkinson’s was a 12-year-old patient.
How is it diagnosed?
There is no blood test or scan that can diagnose Parkinson’s disease. Doctors look for four classic symptoms of the disease before reaching a diagnosis: tremors, rigidity in the wrist and elbow joints, lack or slowness of movement, and an unstable posture.
It affects mostly men.
Parkinson’s disease is twice as likely to affect men than women.
There’s no known cause.
There is no known cause of Parkinson’s disease although a family history of the disease will increase your risk. Researchers think environmental factors such as smoking, pollution, heavy metals, medications and illegal drugs may be responsible for the onset of the disease. Head trauma, brain inflammation, and stroke have also been associated with the disease.
Parkinson’s is expensive.
Treating patients with Parkinson’s disease costs the U.S. around $25 billion a year. The average patient will need $2,500 worth of medication each year and therapeutic surgery could cost up to $100,000.
How do you treat it?
There is no cure for Parkinson’s disease but there are medications that can help patients with the symptoms. Patients can also undergo deep brain stimulation where electrical current is used to help block tremors and other movement symptoms of the disease.
There’s a correlation between Parkinson’s and depression.
Dopamine is also associated with mood as well as movement. It’s estimated that more than half of Parkinson’s disease patients suffer from depression and around 40 percent suffer from anxiety.
If you’re struggling with Parkinson’s disease or know someone who is, it’s incredibly helpful to have a list of organizations that can support you or your loved one along the way. The following is not an exhaustive list, but hopefully it will prove to be a helpful resource.
The post 10 Organizations That Support Parkinson’s Disease Patients and Their Families appeared first on Parkinson’s News Today.
1. National Parkinson’s Foundation helps patients actively enjoy life through expert care and treatment research.
2. American Parkinson’s Disease Association provides support, education, and research to help you live a fuller life.
3. Michael J. Fox Foundation is helping to raise money for much-needed research to help find a cure. From ways you can get involved to a great blog chock-full of Parkinson’s-related information, there is so much information here.
4. Parkinson’s Disease Foundation provides information including news about the disease, information about upcoming events, insight into the latest research, and education about what to expect.
5. European Parkinson’s Disease Association advocates for the rights and needs of patients and their families.
6. The Davis Phinney Foundation is committed to supporting programs as well as research that help to deliver inspiration, information and provide tools that will enable people living with Parkinson’s to have more control in managing their disease.
7. The Parkinson Alliance is the umbrella organization for the Parkinson’s Unity Walk that takes place every spring in New York City. They also sponsor Team Parkinson, a fundraising racing event. You can find current news and information on research projects on their site.
8. Partners in Parkinson’s has a program where you can be connected to an advocate who will listen, offer advice and support to patients and caregivers at no cost. This is just one of the services you can find through Partners in Parkinson’s.
9. Caring.com has a support group for caregivers, family and friends of those with Parkinson’s disease. No subject is off-limits in this forum.
10. The National Parkinson Foundation has a site specifically geared to caregivers. They help carers navigate the emotional, financial, and physical challenges they may face caring for someone with Parkinson’s.
Having resources that help keep you informed, and offer support and encouragement to patients and their loved ones is so important. These are just 10 of the hundreds of organizations out there that are available to you. You can search online or visit your local library for more.
“We speculate that chronic emotional stress may cause dopaminergic cell loss in susceptible individuals and propose that functional somatic syndromes are commonly seen in patients with PD. Dopaminergic dysfunction with abnormalities in striato–thalamo–cortical brain circuits may be the shared underlying cause.”
“Look on the sunny side of life.”
“Turn your face toward the sun, and the shadows will fall behind you.”
“Every day may not be good, but there is something good in every day.”
“See the glass as half-full, not half-empty.”
Researchers are finding that thoughts like these, the hallmarks of people sometimes called “cockeyed optimists,” can do far more than raise one’s spirits. They may actually improve health and extend life.
Watch the video: Food for Thought: Diet & Nutrition in PD – Dr. Laurie Mischley, ND, PhD, MPH
For senior citizens, a good way to get some exercise is through group fitness classe
Mitch Faile was diagnosed with Parkinson’s Disease at an early age. But that didn’t stop him from the pursuit of his dreams and helping to bring worldwide awareness to this life changing affliction.
32 Minute video from Davis Phinney Foundation
Partners in Parkinson’s has opened a video gallery online to help educate people about the disease and to support services to Parkinson’s patients worldwide. The group is also planning to host information events in two U.S. cities this year.
The gallery’s aim is to bring essential information to patients that can help improve their care at every stage of Parkinson’s. The events carry a more personal touch.
“I feel more comfortable . . . more knowledgeable, more connected and more hopeful,” said a participant at a New York event in 2016. “Thank you for a powerful day.”
This year, the live events that bring information, educational tools and resources to patients will be in Grand Rapids, Michigan, and Orlando, Florida, according to a press release.
Online video gallery
The online gallery at the Partners in Parkinson’s website can be accessed at any time.
Its videos include stories by Parkinson’s patients and caregivers, and talks with healthcare professionals and researchers working on the disease.
Find Pleasure: Art making should be enjoyable. There is no such thing as a “wrong” mark. Every expression is valid.
Experience Control: Art making is an activity in which the artist can experience choice (through color, medium, line, etc.) and control over one’s environment.
Value Individuality: Free creation can encourage spontaneity which can, in turn, improve confidence.
Express Oneself: An experience of slowed speech or flat affect can limit one’s ability to communicate. Art is another language for communication which can be done at the artist’s own pace.
Relax: Art making has been proven to lower blood pressure, reduce perseverative thoughts, and lift depression.
Improve Flow in Mind/Body Connection: In a relaxed state when focus is on the artistic expression rather than on the physical movement itself, motion can become more fluid.
Promote Concentration, Memory, Executive Functions, Improve Hand-eye Coordination: Art making increases bilateral activity in the brain. When drawing, one uses both the right and left hemispheres of the brain. This is a wonderful way to take greater advantage of mental resources.
Prepare for Your Hospital Stay Worksheet — Information regarding medications, symptoms and advanced directives in preparation for your hospital stay. Also included is a list of what to inform, ask and know during your hospitalization.
“The earlier people begin exercising after a Parkinson’s diagnosis, and the higher the intensity of exercise they achieve, the better they are,” Marilyn Moffat, a physical therapist on the faculty of New York University, said. “Many different activities have been shown to be beneficial, including cycling, boxing, dancing and walking forward and backward on a treadmill. If someone doesn’t like one activity, there are others that can have equally good results.”
Take a deep breath, expanding your belly. Pause. Exhale slowly to the count of five. Repeat four times.
Congratulations. You’ve just calmed your nervous system.
Controlled breathing, like what you just practiced, has been shown to reduce stress, increase alertness and boost your immune system.
From The New York Times read more