Answering the Top Care Partner Questions About Mental Health
“Mental health includes our emotional, psychological and social well-being. It affects how we think, feel, and act,” according to the Centers of Disease Control. When it comes to living with Parkinson’s disease (PD) ― in any stage ― or caring for a loved one with Parkinson’s, it can become difficult to manage and maintain your optimal mental health.
Panelists included: Linda Pituch, Helpline Senior PD Information Specialist; Travis Turner, PhD, Assistant professor and Director of the Neuropsychology Division, Medical University of South Carolina; Caryn Balaban, MPH, Care Partner, former Parkinson’s Foundation People with Parkinson’s Council member.
People with PD have problems managing the dopamine levels in the brain, which can also be responsible for changes in mood. Common mood changes in PD are depression, apathy and anxiety. Anger and irritability are also common, whether as symptoms, side effects of medication or simply frustration that arises from feeling a loss of control.
Mood swings are a common symptom of Parkinson’s and “it’s important to know where the swing is to and from,” said Dr. Turner. This can help the care partner better understand what is causing their loved one’s change in mood, and how they can help their loved one pivot.
Active listening skills can be effective in de-escalating frustrations and mood changes because your loved one will feel understood. Examples of active listening include asking questions such as, “I think (this) is what you’re saying.” If your loved one with PD is struggling with mental health changes ask yourself: have they been sleeping well? Have they been socializing?
Exercise:Exercise is the best way to combat Parkinson’s symptoms. This is no different with mental health! Maintain an exercise schedule and make it fun. Rock Steady Boxing classes, virtual exercise classes or planning a weekly socially distanced walk with a friend can keep exercise in the routine while being fun.
Socialize: Spending time with friends and family is a great way to help alleviate depression, apathy and other mood changes. Get involved with a PD support group, volunteer, meet others through in your place of worship or an exercise group. There are even singing groups designated for people with PD. If you have a specific interest, consider starting your own group.
Being a care partner is a full-time job and it is important to take care of your own mental health, too. Linda reminds care partners to “give yourself a pep talk that not every day can be a good day. Not every hour can be a good hour — but you have gotten this far and you will do what is needed,” she said.
“We conduct regular maintenance on our cars — why don’t we regularly check up on ourselves?” Seek help professionally or from a trusted friend if you need it. Remember to take breaks — utilize people in your life, or external resources, to allow you respite from caregiving.
It can be difficult to work up the drive to exercise when we feel good, much less when apathy strikes. However, exercise can help. Exercise groups are great resources for community, accountability and it helps with symptom management.
Understandably, in the time of COVID-19 it can be more difficult to exercise and socialize. Maximize Zoom media and virtual meeting apps, texting, calling friends and family in the comfort of your own home. Motivating your loved one with Parkinson’s can be especially difficult when they are apathetic. Linda advises that you ask yourself: “what caught their interest before the diagnosis? What was it that always used to perk them up?” and use that answer to help them feel engaged in something.
When Caryn’s husband was diagnosed, he compared his social experiences to the flu. He disliked that he had to wear his disease rather than hold it inside — and that every person could see his disease. A tactic suggested by the panelists is to embrace the fact that your loved one might look and/or act differently than they used to, but people are less concerned with us than we are with ourselves. Oftentimes, friends and family quickly adapt to changes in your loved one’s communication or abilities.
Dr. Travis points out that psychotherapy or counseling is an effective way to help people process change. Affordability can be an obstacle, but some Medicare plans cover some individual psychotherapy sessions per year. A type of therapy, Cognitive Behavioral Therapy can help you see things differently so that you create new behaviors and patterns.
Staying Social During A Pandemic
As COVID-19 continues to keep us social distancing at home, we know that staying social can be difficult and feel like a low priority. Try our virtual resources for care partners and people with Parkinson’s until you find the one that works best for you:
2. PD Health @ Home: Join us for new weekly online events designed for you.
3. Expert Briefings: These educational webinars are led by an expert and dive into critical PD topics. Register for upcoming webinars and participate in the live broadcasts.
Learn more about Parkinson’s and mental health in the following Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636):
8 Useful Parkinson’s Foundation COVID-19 Resources
With so many people with Parkinson’s disease (PD) staying safe indoors, the Parkinson’s Foundation has launched resources articles and virtual programs designed to support the PD community during the COVID-19 pandemic.
Our new virtual programs and content focuses on priority topics like exercising at home, COVID-19 preparedness, stress management, telemedicine and more. Remember, our Helpline 1-800-4PD-INFO (473-4636) is always here to help, especially now.
“As someone living with Parkinson’s disease, I know the importance of communications and providing online resources while the more at-risk PD community is socially distancing at home,” said Denise Coley, a member of the Parkinson’s Foundation People with Parkinson’s Council.
Get engaged and stay up to date with these free virtual events:
Our newest program PD Health @ Home was designed to keep the PD community engaged and moving, our new weekly online events address can help you ease the challenges of isolation. Join us for:
Mindfulness Mondays: learn relaxation techniques and boost your brainpower
Wellness Wednesdays: an expert speaker addresses a critical PD topic every week
Fitness Friday: PD-tailored online fitness program
This fall, Moving Day is going virtual! Every event will host a local, virtual version you can follow and MOVE with at home. All funds raised through Moving Day help us fund cutting-edge research and provide expert care for the one million Americans living with Parkinson’s.
Join us at a fall Moving Day: Fargo Moorhead, Rochester, Buffalo, New Jersey, Boston, Columbus, Venice, DFW, Atlanta, Nashville, Northwest Arkansas, Chicago, NC Triangle, Jacksonville, Palm Beach, Los Angeles, Phoenix and Miami.
Announcing our new season of Expert Briefing webinars! Every live broadcast will feature a PD expert and an opportunity to ask questions. Sign up for an upcoming webinar now.
Contact our Helpline specialists for your PD questions ― from COVID-19, hospitalization and more. Available in English and Spanish, weekdays from 9 a.m. to 7 p.m. ET.
From a person newly diagnosed who feels a heavy dread from their uncertain future to someone distraught about their changing abilities, the Parkinson’s Foundation Helpline occasionally receives calls from people living with Parkinson’s disease (PD) experiencing a level of despair that has become unbearable.
People with Parkinson’s are at an increased risk of suicide. When asked, up to 30% of people with PD have thought about it. Why suicide?
"I don’t want to live this way. I’m tired of it all."
"I wish an accident would happen so I could die."
"When my symptoms become bad enough, I plan to kill myself."
“For some, the thought of suicide may feel like an option, a sense of control in what seems like their only way out,” said a Parkinson’s Foundation Helpline specialist. “They may feel like they would be doing their loved ones a favor. Isolated individuals may feel no one would really notice if they died, while others may feel they are sparing themselves from a poor quality of life.”
Welcome the Discomfort
Suicide is never the only option. It is also a subject that goes unacknowledged since many find it uncomfortable. It is natural to experience fear when a loved one brings up the topic, however that feeling of discomfort can lead to silence, leaving the person with the suicidal thoughts to feel alone — when they need support the most.
What if allowing an uncomfortable and uncertain conversation to unfold meant your loved one with PD felt less alone? If you are the person thinking of suicide, what if you felt like you could have an open and honest conversation with your loved one about your thoughts?
In ideal world, every person with Parkinson’s who is thinking about suicide and every family member or friend would feel comfortable enough to candidly address their thoughts and fears. However, most people feel unprepared or don’t know how to talk about it.
You do not have to do this alone. If you or a loved one is thinking of suicide, contact the National Suicide Prevention Lifeline, available 24 hours a day at 1-800-273-8255 or virtual chat. If you think they may harm themselves immediately, please call 911.
Connecting to appropriate support to help you or a loved one stay safe from suicide is essential. If present, depression or other mental health concerns should be treated by your care team and could involve psychotherapy, medications or both.
Envision a Way Through
Establishing safety from suicide does not necessarily mean the suicidal thoughts have completely stopped. Thoughts and intentions can change from day to day, so continue having candid conversations and accessing help from trained professionals as needed.
If you or your loved one has decided to move forward with a commitment to safety, what comes next?
Find A Specialist
In some cases, better managing PD symptoms can provide relief from despair. Partner with a Movement Disorder Specialist who you trust. A PD specialist can help you optimize medication options and explore surgical options, if recommended. Seeking additional specialists like physical therapists, occupational therapists and speech language pathologists and licensed clinical social workers or neuropsychologists with PD training can also help you manage symptoms. Talk to your care team about depression and suicidal thoughts.
Try other forms of therapeutic support: music therapy, dance/movement therapy, art therapy, massage therapy or acupuncture and other complementary medicines. Engaging in counseling, Parkinson’s support groups, exercise and wellness programs can also help you manage your PD symptoms. Explore palliative care as an added layer of support.
Plan Ahead
End-of-life planning is more than establishing who will handle your affairs after you die. End-of-life planning includes making plans for what could happen before we die, allowing us to assert some control over one’s future and one’s death.
Arranging a living will and durable powers of attorney for healthcare and finances, partnering with your doctor to sign a portable medical order (POLST/MOLST), and/or completing a Five Wishes advance directive are all ways to plan ahead. This effort can also bring peace of mind and comfort to our loved ones. Learn more about planning ahead.
Death with Dignity / Medical Aid in Dying
People with Parkinson’s may think of the challenges or complications that can occur during late-stage PD and decide they prefer dying on their own terms. Some Helpline callers have inquired about assisted dying or assisted dying laws. According to Death with Dignity, “Death with dignity laws allow qualified terminally-ill adults to voluntarily request and receive a prescription medication to hasten their death.
As of September 2019, aid in dying statutes are in effect in California, Colorado, District of Columbia, Hawaii, Maine, New Jersey, Oregon, Vermont and Washington. More information about Death with Dignity can be found on their website or by calling 503-228-4415. The Parkinson’s Foundation acknowledges that assisted dying is one among many end-of-life options that some might consider.
Re-establish Your Identity and Meaning
Our identity, sense of self and understanding of our purpose or reason for living can be challenged when we feel disempowered, disheartened or in despair. People at any point along the journey of PD may struggle with these challenges. Try these approaches:
Turn to a family member or friend, support group member, counselor or spiritual leader for support with existential questions.
Seek ways to reconnect with the parts of your identity that are not tied to your diagnosis and symptoms.
Help or mentor other people with PD. Offer to make telephone check in-calls to members of your exercise class or support group. Utilize your experiences to answer questions posted on online PD forums.
Volunteer outside the PD community. Many local senior service organizations or grief support agencies look for volunteers to help with telephone-based support programs. Visit a site like VolunteerMatch.
Anyone who has considered suicide has their own reason for doing so and their own journey to find hope again. If you have been there, share what has helped you. Consider submitting a My PD Story as we continue to open the dialogue on this under-discussed topic.
Parkinson’s disease (PD) is much more than a movement disorder. It can have wide ranging effects throughout the body. In terms of the brain, people with PD may experience changes in cognition, mood, emotion, perception, attention, sleep, memory, motivation, and the senses, as well as drug-induced behavioral changes. One of the key professionals on a comprehensive PD treatment team is the neuropsychologist, a person with training and expertise in asking questions and administering screening and assessment tests to evaluate a person’s mental abilities and psychological state. Deficits in one or more of these areas can make it difficult to control motor symptoms such as tremor and balance.
Depending on the results of the evaluations, the neuropsychologist can work with other team members to implement therapies and teach strategies to improve the life of the person with PD. Also, it may be useful to have a neuropsychological evaluation early in the course of the disease to establish a baseline so that a neurologist can later determine if changes, especially in cognition, are related to medications, to progression of the PD itself, or to other factors such as depression. In this episode, Dr. Travis Turner, Director of the Division of Neuropsychology and chief liaison to the Movement Disorders Program at the Medical University of South Carolina in Charleston, a Parkinson’s Foundation Center of Excellence, discusses the role of the neuropsychologist, the process of neuropsychological evaluation, and some of the kinds of problems he deals with.
Released: June 2, 2020
Travis H. Turner, PhD, is assistant professor and director of the Neuropsychology Division at the Medical University of South Carolina. He is also senior clinical director of Movement Disorders at VeraSci. He studied psychology and neuroscience at the University of Pittsburgh, earned his doctorate in clinical psychology through San Diego State University and the University of California, San Diego, and completed internship and postdoctoral training at MUSC. He has been active in clinical and research efforts with the Movement Disorders program for over 10 years. Clinical activities include neuropsychological evaluations and focused interventions for patients with Parkinson’s disease and related disorders. His research program is aimed at developing new ways to measure and treat neuropsychiatric symptoms in Parkinson's disease. Current projects include standardization of computerized behavioral saccade tests, neuropsychological assessment via videoconferencing (i.e., telemedicine), and clinical trials. He supervises neuropsychology postdoctoral fellows and provides training to graduate students, medical students, interns, and residents. When he’s not working, he enjoys fishing, building furniture, and spending time with his family.
For many, it is embarrassing to bring up taboo topics with your doctor ― from sexual dysfunction to incontinence. However, when it comes to living with Parkinson’s disease (PD), sometimes these topics can be connected to the disease itself or side effects to PD medications.
No topic should be considered off limits to discuss with your healthcare team. The more we normalize and bring awareness to these issues, the less taboo they become. Scroll down to view some of these topics and their connection to Parkinson's, or click to jump straight to a specific topic.
Sexual Dysfunction
Sexual dysfunction is common in men and women with PD. The issue often goes unaddressed as patients, spouses and healthcare providers may not be comfortable discussing sex. Parkinson’s itself may cause sexual dysfunction due to the loss of dopamine. Medications, such as anti-depressants, can also contribute to sexual dysfunction. To note, most PD drugs are not associated with impotency or loss of libido.
Hypersexuality can also be linked to certain dopamine agonists. There are many ways to address PD-related sexual dysfunction, and it all starts with speaking to your doctor. Try writing your symptoms down before your next appointment and telling your doctor you have a sensitive issue you want to discuss.
Dopamine medications have improved life for millions of people, but researchers believe that some people with PD on dopamine agonists or monoamine oxidase (MAO) inhibitors can develop impulse control disorders: unhealthy levels of gambling, shopping, eating or sexual activity.
If you believe that you or a loved one has an impulse control disorder, try to identify a trend in unhealthy behaviors and discuss it with your doctor. These disorders usually respond to medication changes. Your doctor can often work with you to reduce your dosage or switch to another medication.
For many, stress can be a part of life when caring for someone with a chronic illness such as PD. However, some care partners may have a tough time coping with the fact that they need help. Care partners and their loved ones should address caregiver burnout as soon as you notice warning signs: feelings of anxiety, anger followed by guilt, bitterness towards family members and depression.
In general, 40 to 70 percent of caregivers are significantly stressed, and about half of these meet the criteria for clinical depression. While a challenge in itself, learn your limits as a care partner and find a support network that works for you. Many times, you can work with your loved one’s care team or a social worker to find additional help and resources that work best for you.
For many, the term palliative care is associated with fear. Think of palliative care as supportive care, defined as helping people with Parkinson’s and care partners plan for the future, address non-motor symptoms and provide an extra level of support. Palliative care can help people with PD and their families at any stage.
Palliative care is not the same as hospice care. It does include hospice, which is end-of-life palliative care, but also provides support for patients and families from the time of diagnosis.
Many adults avoid the subject altogether. However, all adults, even if their health is excellent, should document their wishes and preferences should a health emergency occur. If you have a spouse, partner, children or others you care about, as your disease progresses estate planning can help you ensure that they are provided for and cared for, if necessary.
Get organized. Consider creating a binder with the following main document categories: Medical, Family, Insurance/Property and Finance. Make sure that a close family member or friend knows where to find them in case they are needed. Taking the time to make advance preparations for this inevitability is practical and necessary. Honest conversations about end-of-life planning and care may not be comfortable or easy, but they are important so you can ensure that your wishes are honored.
Doctors usually wait until the end of an appointment to ask, “anything else?” How do you transition into your potentially uncomfortable topic?
Remember that your doctor has heard it all. She/he wants to help you increase your quality of life.
Give yourself a quick pep talk. Your symptom or issue has been impeding on your quality of life. The conversation will only last a few minutes and may have a simple solution.
Write it down. Give yourself a natural transition in the conversation to bring up your topic. Try something like, “I wrote down some symptoms and/or issues I want to discuss, and they are sensitive in nature.”
Add details. Try to remember when the issue began, how long it has been a problem, when it occurs and all your symptoms.
Your doctor will work with you to address the issue and can often provide guidance or a recommendation.
For more information visit our non-movement symptoms page. You can also discuss any topic with our Helpline at 1-800-4PD-INFO (473-4636).
People With Parkinson’s Share Their COVID-19 #KeyToPD
The Parkinson’s Foundation is dedicated to helping keep our Parkinson’s disease (PD) community safe and healthy during the COVID-19 pandemic that has disrupted so many of our daily routines. Access to gyms and exercise classes have been limited or entirely inaccessible. In-person gatherings are no longer encouraged. Even certain nutritious food items have been harder to find.
With all this in mind, we found it essential to expand our virtual programs. Through PD Health @ Home, we now offer more online health and wellness classes than ever before to ensure you have the resources you need to stay social and active through the foreseeable future.
We asked a few of our friends to share their top tips for managing PD during the pandemic. Here’s what they had to say:
MY PD STORY: Heather Wolynic
“Art is my passion and during the pandemic I’ve had more time to paint. I would highly recommend any form of art to help you relax and boost your mood while physically distancing.”
Navigating the Challenges of Young-Onset Parkinson's
People living with young-onset Parkinson’s disease (YOPD) ― those diagnosed before age 50 ― are often managing careers, raising families or juggling both at the time of diagnosis. Finding time to take an early, active approach to YOPD care can seem daunting, but it is essential.
Discovering expert team-based health care to treat your Parkinson’s disease (PD) needs can slow Parkinson’s progression and decrease symptoms. This is especially true for people diagnosed with Young-Onset Parkinson’s, where early intervention benefits can be monumental. Younger brains have greater neuroplasticity ― the ability to grow and change in response to therapy.
This article is based on a Parkinson’s Foundation Expert Briefing “Not What I Planned, For Me or My Family” hosted by Allison Allen, MSW, LCSW, from Duke University Medical Center, a Parkinson’s Foundation Center of Excellence.
Young-Onset Parkinson’s Distinctions
About 100,000 of the nearly one million people living with Parkinson’s disease in the U.S. live with YOPD. While there are many motor and non-motor symptom similarities between PD and YOPD, there are also notable differences:
Young-onset PD symptoms may progress slower.
People living with YOPD can be more likely to experience involuntary movements and muscle tightening or cramping like dyskinesias and dystonia from common PD medicines, such as levodopa.
There may be greater fluctuations between “on” and “off” times in YOPD.
People with YOPD are more likely to carry genes linked to PD, though not all who carry such genes will develop the disease.
Younger brains are capable of more easily learning or being trained or retrained after an illness or an injury.
Prioritize Early Collaborative Care
Though people with young-onset Parkinson’s are often in one of the busiest stages of life, prioritizing self-care is vital. It is also important to acknowledge your feelings surrounding the diagnosis and those of your family. Treat yourself with compassion.
A movement disorder specialist (a neurologist skilled in movement disorders) is central to living optimally with YOPD. Early collaborative care ― including social workers, physical and occupational therapists, and other health professionals ― also improves quality of life. Baseline assessments with multidisciplinary care specialists can help you determine healthcare goals, discover opportunities to stay well or identify areas for improvement.
Steps to Navigating YOPD After Diagnosis
While a diagnosis can be disruptive and unexpected, it doesn’t have to stop you from reaching your goals. When you are ready, think about your current family and career responsibilities, and set up a new long-term plan. Take one step at a time as you move toward achieving your priorities.
1. Build a Care Team: Work with your movement disorder specialists or neurologist to find the medication that is right for you. Your doctor can also help you determine which collaborative care specialists can help you further your goals. The Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) can recommend PD specialists in your area.
2. Talk to Family: Parkinson’s affects everyone in the family. You may be concerned that telling your children you have Parkinson’s will cause undue worry. Fostering an open, honest and age-appropriate conversation early can help children understand PD-related changes and feel secure.
3. Tell Your Employer When You are Ready. Many people with Young-Onset Parkinson’s are still working. You decide when, with whom and how to share your diagnosis.
4. Discover Community: Whether finding a support group, educational program or getting involved with a non-profit, there are many ways to connect with others living with PD. Consider joining the Parkinson’s Foundation online PD Conversations community, which features a young-onset PD discussion group.
5. Genetic Testing: People with YOPD who have children, or who are considering pregnancy, may wonder whether they carry a PD-related genetic mutation. The Parkinson’s Foundation PD GENEration: Mapping the Future of Parkinson’s Disease national testing initiative offers free, confidential Parkinson’s-related genetic testing and counseling.
Planning
Parkinson’s disease impacts the whole family. While it may seem challenging, planning for the future can alleviate stress and foster security.
Familiarize yourself with your disability and long-term care insurance policies.
Complete health care power of attorney (HCPOA), advanced directive and family care plans.
These documents are critical to your care ― and that of your family ― in an emergency, and they can always be updated.
Proactive Ways to Live Well
As important as it is to plan ahead, it is even more important to live well in the present. There are many steps you can take today to live your best life with Parkinson’s, start with these:
Exercise has known neuroprotective benefits for people living with PD. Good for the mind and body, exercise should be a top priority.
Ellie has been a part of the Parkinson’s community ever since her father received his Parkinson’s disease (PD) diagnosis more than 12 years ago. Having undergone multiple surgeries and facing infection, he now lives in an assisted living facility where he is receiving care for not only his PD, but his other health complications. She visits him, often accompanied by a welcomed guest - her dog, Winnie Belle.
Winnie is a Great Pyrenees mix, but more than that, she is Ellie’s partner, teammate and inspiration. A working dog by breed, Winnie needed a task to keep her busy and motivated through life. Even as a puppy, Ellie noticed that Winnie was drawn to people. She was affectionate towards children and if anyone was ever in trouble, Winnie sought to comfort them. It was decided: Winnie would become a therapy dog. Unbeknownst to both, it was a matter of time before they would make their way to the PD community.
After some research, Ellie and Winnie joined Pet Partners: an organization that offers education for trainers, renewed registration every two years for the therapy team, and opportunities to volunteer. For three years, Winnie took part in a variety of obedience classes outside of the program to learn how to care and comfort people with a range of needs in a medical setting, while Ellie received training of her own to become a therapy dog handler.
Looking to connect to volunteer opportunities in the PD community, Ellie signed her and Winnie Belle up for the first-ever Moving Day fundraising walk in Nashville’s Percy Warner Park to participate in honor of her father and his fight against Parkinson’s disease. They attended as a therapy team. “Sometimes people are afraid to or don’t know how to approach people with Parkinson’s. Having a dog breaks the ice,” said Ellie about one man they met at the walk. Wheelchair-bound and likely experiencing facial masking due to his Parkinson’s, the man didn’t seem to take an interest in people. But Winnie caught his eye. He then spoke slowly and softly about his own pet and was thrilled to meet Winnie.
This is what Winnie Belle can do. Even Ellie’s father, who is not an animal-person, finds joy in Winnie’s visits.
She and Ellie have since become quite the therapy team: they volunteer at Vanderbilt children’s hospital twice a month, attend monthly events for young kids with special needs and even visit juvenile court every so often. “Everyone knows Winnie,” says Ellie about the kids, nurses, and staff they encounter, “they’re eyes light up when they see her.”
Hoping to support other therapy teams in Nashville, Ellie and other Pet Partner handlers started the local affiliate group called Music City Pet Partners in July of 2017. Since then, the group ran their own booth at an annual dog days event with the goal of extending the support of pet therapy teams to those who could truly use it.
Ellie and Winnie plan to further explore dog therapy in the Parkinson’s community and rally more Pet Partners teams to attend Moving Day Nashville next year. They can’t wait.
Moving Day Nashville 2018 will take place on Saturday, April 7 at Centennial Park.
My dad, Jorge, was born in 1942 in Mexico to a hardworking family. My father and grandfather started a company dedicated to manufacturing hand-made, artisanal candy. Eventually the company prospered and was recognized in Mexico and throughout Latin America.
My father’s Parkinson’s disease (PD) symptoms first manifested as fatigue. He would get exhausted from just walking. His face also started to change. He underwent medical tests and exams until the doctor diagnosed him with Parkinson’s in 2005. He was given Sinemet as his primary medication to help with symptoms. Here in Mexico, we pay for health insurance so he can regularly visit a neurologist, psychologist and psychiatrist to manage his PD and make adjustments to his medications.
Over the last 11 years his health and quality of life started to deteriorate. But recently, something inspired him to begin making homemade candy again. It’s become a hobby for him. He’s been teaching young adults how to make his artisanal candy, because it is a craft after all. Since he’s returned to his passion he’s now coping better with his Parkinson’s and his mood has improved as well.
In order to make his artisanal candy he has to constantly move. His Parkinson’s makes his muscles rigid, but when he’s constantly moving to mold the candy it breaks his rigidity. When he stops moving he gets tired since the PD affects his energy. He’s also lost a lot of weight and muscle mass, which makes his body weaker.
In Mexico we can’t find any PD support groups to attend. We consider ourselves lucky to have access to his medications, although they are expensive. There are people here who do not have access to the resources we do because they are enrolled in the country’s free health insurance, which is not sufficient. My father has met very few people with PD here in Mexico. He’s never been outgoing, but now with PD he’s even less willing to make new friends. However, his outlook and desire to speak to people completely change when he’s around his assistants in the confectionary or teaching others how to mold candy.
I wanted to share a video of my father making candy because it makes me happy to see how he’s living his life again. He is trying to make his life better and not let PD win. I’m incredibly proud of him.
Español
Mi padre, Jorge, nació en 1942 en México a una familia trabajadora. Mi padre y abuelo empezaron una empresa dedicada a la fabricación de dulces hechos a mano. Con el tiempo la empresa se hizo muy conocido dentro de México y en toda América Latina.
Para mi padre, los síntomas de la enfermedad de Parkinson manifestaron por primera vez como fatiga. Se ponía agotado de sólo caminando. Su cara también empezó a cambiar. Fue a pruebas médicas y exámenes hasta que el médico le diagnosticó con Parkinson en 2005. Le dio Sinemet como su principal medicina para aliviar los síntomas. Aquí en México, pagamos para el seguro de salud para que mi padre puede ir regularmente a un neurólogo, psicólogo y psiquiatra para gestionar los medicamentos y el Parkinson.
Su salud y calidad de vida empezaron a deteriorar durante los últimos 11 años. Pero recientemente algo le inspiró para empezar a hacer los caramelos de mano otra vez. Ahora es un pasatiempo para él. Es algo que le gusta y quiso intentar de nuevo con algunos ayudantes y enseñar a gente joven también porque es un trabajo artesanal. Desde que ha vuelto a su pasión está mejorando con su enfermedad de Parkinson y su estado de ánimo.
Mi padre tiene que moverse constantemente para preparar los caramelos. El Parkinson deja sus músculos rígidos, pero cuando está en constante movimiento haciendo los caramelos se rompe su rigidez, ayudando al cuerpo temporalmente. Está cansado después porque es un trabajo duro y el Parkinson le ha hecho perder peso y masa muscular.
No hay grupos de apoyo para el Parkinson en la ciudad. Nos consideramos afortunados que es fácil conseguir los medicamentos, aunque no son baratos. Aquí hay personas que no tienen acceso a todos los recursos porque tienen el seguro de salud gratuito que no es suficiente. Mi padre solamente ha conocido a algunas personas en México con el Parkinson, pero no es muy sociable y no hace amistades fácilmente. Él siempre fue así, y es más difícil socializarse ahora que tiene el Parkinson.
Sin embargo, su punto de vista y el deseo de hablar con la gente cambia cuando está alrededor de sus ayudantes en la confitería y cuando está enseñando a otros cómo moldear el caramelo.
Quería compartir un video de mi padre trabajando con los caramelos porque estoy feliz verle viviendo su vida de nuevo. Él está tratando a mejorar su vida para no dejar que el Parkinson gana. Estoy muy orgullosa de él.
Four years after a diagnosis of Parkinson's disease at age 44, Beth Bjerke took on a big challenge in a "grand" way. On April 11th, Bjerke, now 48, crossed the invisible finish line of Bright Angel Trail, a 20-mile hike to the bottom of the Grand Canyon and back again. The Tucson-resident and mother of two chose to hike the Grand Canyon during Parkinson’s Awareness Month to raise awareness of young-onset Parkinson's disease (YOPD) and the huge toll it takes on families.
"We're not all alike, but as a family, we live life on a tight rope," Bjerke explained. "My hope is to find ways to bring together kids who have a parent with Parkinson's and help them cope."
To prepare for the backpacking trip, Bjerke focused on setting short-term goals. “The Grand Canyon gave me a reason to get up and get going every day, and not give in to apathy,” she said. “I didn’t want to become depressed.” To regain her strength and balance, Bjerke worked with a personal trainer. “I went into the gym half-crunched over, like an 80-year-old lady, and came out looking normal again,” she said. Bjerke’s homegrown hiking team included her husband, her youngest son and his girlfriend, her stepsister and a close friend.
Together, they entered the Grand Canyon in a snow flurry and trekked to the bottom, reaching the Colorado river hours later. They continued their four-day journey on foot through unpredictable weather and amazing views. At one point, a painfully swollen toe threatened to sideline Bjerke, but the avid outdoorswoman decided to “cow girl up” and stuffed her purple toe back into her shoe and pressed forward in pursuit of her goal.
Bjerke’s family and friends surpassed her goal of raising $5,000 for the Parkinson's Foundation.
“After being diagnosed with PD, so many people say what now? We all start off that way,” she said. “For me, this is what works best; for how long, I don’t know, but I just came out of one of the Seven Natural Wonders of the World.” Today, Bjerke is taking scuba diving lessons and dreaming of paragliding the Grand Tetons someday. “You can dream,” she said. “It may not be the best time or conditions, but you can still reach for small goals and build on them.”
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