Cuando a un ser querido le diagnostican la enfermedad de Parkinson (EP), pueden surgir muchas emociones y preguntas. ¿Qué puedo hacer para ayudar? ¿Cómo puedo apoyar si no soy el cuidador o no vivo cerca? Siga leyendo para conocer 10 consejos prácticos sobre cómo mostrar su apoyo a un ser querido que vive con la EP.

1.   Infórmese.

Cada persona que vive con Parkinson experimenta la enfermedad de forma diferente, por lo que es crucial comprender cómo afecta la EP a su ser querido. Infórmese sobre los síntomas comunes del Parkinson, incluyendo síntomas no motores. Lea nuestro libro Preguntas frecuentes: Una guía sobre la enfermedad de Parkinson para una rápida introducción a la EP.

2.   Contáctese.

Ofrezca apoyo a su ser querido y a su cuidador. Una visita de dos horas puede dar al cuidador tiempo para sí mismo. Invite a su ser querido al cine u ofrezca llevarle una comida a casa. Busque maneras de ayudar de forma habitual, como ir a hacer la compra, podar el césped o recoger la medicación.

3.   Comuníquese y charle.

Llame o hable por videollamada con su ser querido con Parkinson, incluso si no está seguro de qué decir. Pídale su opinión o cuéntele una anécdota sobre algo que haya ocurrido esta semana.

4.   Ofrézcase a ayudar con las citas.

Ofrezca llevar a su ser querido o amigo a una cita médica o de fisioterapia o a una clase grupal de ejercicio. Si vive lejos, intente llevar un registro de las citas y llame a su ser querido para saber cómo le fue.

5.   Trabaje en conjunto con el equipo de atención.

Manténgase en contacto con el equipo de atención de su ser querido para asegurarse de que reciba la mejor atención posible. Nuestra Red Global de Atención crea oportunidades para que las personas que viven con la EP accedan a una atención de alta calidad por parte de un equipo de expertos. Encuentre atención experta cerca de usted.

6.   Comuníquese.

Comunicar sus pensamientos a su ser querido, así como escuchar sus sentimientos, puede ayudar a aliviar la tensión en su relación. Tenga charlas familiares a menudo para compartir los sentimientos de todos, comprender por lo que está pasando cada individuo y platicar formas de apoyarse mejor mutuamente.

7.   Acceda a los recursos locales.

Interactuar con su comunidad local de la EP puede ayudar a toda su familia a encontrar apoyo y a aprender más acerca del Parkinson. Busque su Chapter local y otros recursos cerca de usted.

8.   Involúcrese.

Interactuar con la comunidad de la EP es una forma estupenda de mostrar apoyo a su ser querido. Asista a una caminata local de Moving Day, organice su propia recaudación de fondos para apoyar la investigación a través de los Campeones del Parkinson (Parkinson’s Champions) o genere conciencia en su comunidad.

9.   Encuentre su sistema de apoyo.

El diagnóstico de Parkinson de un padre o un ser querido puede pesarle mucho. Busque un entorno cómodo y de apoyo para compartir sus pensamientos y sentimientos acerca del Parkinson. Únase a un grupo de apoyo local para conectar con miembros de la comunidad de la EP. Además de los grupos para las personas que viven con Parkinson, también existen grupos de apoyo para familiares. Póngase en contacto con nuestra Línea de Ayuda llamando al 1-800-4PD-INFO (1-800-473-4636), opción 3 para español, para encontrar un grupo de apoyo cerca de usted.

10.   Practica el autocuidado.

Al cuidar o apoyar a una persona que vive con Parkinson, los cuidadores secundarios pueden experimentar agotamiento. Abordar estos sentimientos antes de que provoquen fatiga por compasión es vital para una relación sana. Dedíquese tiempo a sí mismo para disfrutar de lo que le gusta e incorpore el autocuidado en su rutina.

Ayudar a un ser querido con Parkinson es diferente para cada individuo. Con la mentalidad y los recursos adecuados, puede ayudar a su ser querido o amigo a superar algunos de los desafíos de la EP.

Explore los videos de nuestro Programa de Cuidadores, diseñados para ayudarle en este recorrido, en nuestro Canal en Español: Recursos para ti en YouTube.

Watching a parent navigate Parkinson’s disease (PD) brings forth a flood of questions about the future. At some point, you may wonder if Parkinson’s is genetic and whether you’ll develop it. Having a parent with PD naturally comes with many concerns. The following five tips offer ways to approach this uncertainty.

1.  Understand the role that genetics plays in developing PD.

Genetics cause about 10% to 15% of all Parkinson's,  which means their children may have a higher risk of developing PD. If you learn that your parent carries a genetic variation linked to PD, this does not guarantee that you will eventually develop the disease. Still, it is natural to be uncomfortable with that risk, even if it is low.

When a parent has Parkinson’s, you may be thinking about genetic testing. Ask yourself, “Will knowing if I carry a genetic link to PD help me or cause me to worry more?”

If you want to get genetically tested, consult with a genetic counselor first to discuss the potential benefits and drawbacks. Genetic testing helps estimate the risk of developing Parkinson’s but cannot provide your probability of developing the disease or guide you on how to prevent developing PD

2.  Prioritize what you can do now for your well-being.

Researchers believe Parkinson's is caused by a combination of genes, environmental and lifestyle influences. While you can’t choose your genes, you can try to make choices that help you stay as healthy as possible, increasing your likelihood for a healthy future overall.

Make it a priority to treat your body well. Try:

• Exercising regularly.
• Eating nutritious, heart-healthy foods.
• Getting adequate sleep.
• Keeping your mind active by learning new things.
• Avoiding loneliness by staying engaged socially.

Consider partnering with people for help working on these priorities, or finding a support group that works for you. Just like your parent with PD needs a care team to manage the disease, start working to create a team to support your health goals.

3.  Strive to maintain a positive outlook on life.

For some adult children, the possibility of developing PD can feel like a looming threat that may strike any day. For others, their PD fears may be mild and fleeting but still unsettling. Big or small, ongoing worries about whether you’ll develop PD can impact your outlook on life and disconnect you from the good around you and wellness within you.

Mindfulness exercises may help you regain focus on the present, and gratitude practices may help you savor life’s small joys. Take breaks from your worries by making time for favorite activities and uplifting relationships. Seek out professional support to help you cope with the unknown if the anxiety is affecting your day-to-day life. Explore our free Mindfulness Mondays events.

4.  Tend to your feelings of grief and loss.

Your parent’s Parkinson’s diagnosis and journey has likely impacted you on a deep level. Perhaps they are doing well but you worry about their future. Maybe you are already navigating ambiguous loss, a common experience for people with Parkinson's and their loved ones when there is a loss of emotional connection. Perhaps they have advanced Parkinson’s or have even passed away.

Because of the love you have for your parent, you may experience loss with every stage of their disease, and these losses can affect your body, mind and spirit.

Trying to make healthy choices or keep a positive outlook can be difficult when you are grieving. You are tasked with being hopeful amidst painful feelings. This calls for extra attention to your self-care and maintaining connection with a caring community.

5.  Define and create your well-lived life.

Reflect upon what you can do now to feel confident that you are living your life to the fullest, despite what may happen down the road. Ask yourself, “What would a well-lived life look like to me? In what ways am I already living that life? How could I work towards my definition of a well-lived life?”

The following suggestions may also help you as you seek to live your life to the fullest:

• Consider diversifying your interests and hobbies.
• Try to identify what brings you joy and strive to make more time for it.
• Seek out opportunities that may bring your life new sources of meaning and purpose.
• Prioritize what will help you feel well and whole.

Additional Resources

• Care Partner Program: a series of self-paced online courses designed for care partners

• Building Your Resilience

• Can't Stop Worrying About the Future?

Regardless of where you are in your caregiving journey, explore our Care Partner pages.

Navigating Parkinson’s disease (PD) can come with many surprises for the person living with the disease and those who love them. Since Parkinson’s progresses, symptoms often begin to complicate daily activities as a person progresses through the stages of PD.

Learning how to manage Parkinson’s is a constantly evolving learning curve that should always be modified to best suit both the needs of the person with Parkinson’s and the care partner. In this article, we highlight tips that can help your loved one adjust to these changes.

Daily Living

Moving

Movement changes are common in Parkinson’s and can become more difficult to manage in later PD stages. As a care partner, you can help your loved one move safely.

• Check that your loved one’s feet are placed firmly underneath before standing. You may need to help with proper foot placement.
• Remind your loved one to take big steps. People with PD often need “cues” to take long steps as automatic motions become more difficult to perform. Keep cues short and simple, for example by saying, “Big steps.”
• Find an occupational therapist. These rehabilitative experts can help your loved one maintain independence and ways care partners can assist.

Freezing and Falls

People with Parkinson’s sometimes experience freezing episodes, which is the temporary and involuntary inability to move. Freezing is a significant cause of falls, as it creates a feeling like your feet are glued to the floor.

• Avoid tight turns when possible. Instruct your loved one to make wider turns as freezing often happens while turning around in close quarters.
• Make a plan. Consider how you’ll access help in the event of a fall, such as calling a neighbor or friend.

Travel and Transportation

Leaving the home can be difficult, but outings to a doctor’s office or physical therapist are often necessary. Consider methods that promote safety and decrease care partner stress.

• Plan appointments around your loved one’s daily routine. Try to schedule appointments while the person with Parkinson’s is rested and PD medications are working well.
• Maximize your time. If endurance allows, schedule a few appointments on the same day, especially if they are in the same clinic or medical complex.

Read More: Traveling with Parkinson’s

Mealtime and Swallowing

Advanced Parkinson’s can cause difficulty with eating and drinking because of movement and swallowing problems. Making adjustments to mealtimes can help your loved one get the nutrition they need.

• Serve foods that are easy to eat. Avoid tough, dry, or crumbly textures that might be difficult to swallow.
• Focus on hydration. To ensure your loved one is drinking enough fluids, encourage sips of liquid between solid foods.

Caring for the Care Partner

Parkinson’s symptoms change over time, as will your role as a care partner. The most important thing to remember is that if you do not take care of yourself, you will not be able to take care of your loved one.

Caregiver burnout is a state of physical, emotional and mental exhaustion. Burnout can occur when caregivers don't get the help they need, or if they try to do more than they are able, physically or financially. Caregiver burnout symptoms can include:

• Extreme fatigue unrelated to sleep
• Unusual frustration and anger
• Feeling “cloudy” or “foggy.” Often dismissed as age-related change, this can occur as a result of carrying too much responsibility and/or anxiety

These tips can help you navigate your own wellbeing as a care partner:

• Manage stress. Identify what triggers your stress and find ways to control your emotions, like writing in a journal or going for a walk.
• Seek connection. Connect with a Parkinson’s Foundation chapter near you to find local resources and events.
• Accept help. Make a short list of specific tasks that typically help you care for your loved one, so family and friends know what they can do to help when you need a break.

Read More: Self-Care & Caregiving Tips

Parkinson’s & Dementia

When thinking changes are mild, these symptoms often do not impact everyday life. But as Parkinson’s advances, more profound changes in thinking can occur, including dementia. Dementia is when someone experiences problems with memory and thinking that are advanced and interfere with daily activities and quality of life.

To improve communication, try these strategies:

• Ask one question at a time. Slowing down and asking one thing at a time can be helpful.
• Give hints and cues. Use short and simple phrases to provide cues. Give a short hint if your loved one has difficulty finding a word or loses their train of thought.
• Resist the urge to argue or correct. If your loved one is experiencing a delusion, try to find ways around the situation instead of contradicting them. It can be helpful to keep in mind ‘it is the disease making these accusations, not my loved one.’
• Look for community resources BEFORE you need them. Explore resources in your community, such as the Area Agency on Aging.

The Parkinson’s Foundation is here for care partners. Explore all stages of the care partner journey and essential information and resources designed to help along the way.