For many, living with Parkinson’s disease (PD) can make it harder to leave the house on a daily basis, let alone travel to a new time zone. However, as with any trip, planning and preparing can help. This article covers how to factor Parkinson’s into your itinerary.
Remember to pack snacks, a water bottle you can fill at the airport and throughout your trip, and anything else you need to take with medication.
Write your list of essentials before packing.
Remember to pack your go-to outfits that make getting dressed a little easier — wrinkle-free items, shorts, pants with elastic waistbands — and assistive devices you regularly use.
2. Before your trip, check in with your Parkinson’s doctor.
Before jetting off, speak to your Parkinson’s doctor to ensure that you have all the medications you need.
3. Request assistance in airports.
A few days before you fly, consider requesting special assistance at airports, such as a wheelchair or an electric cart service to help with luggage. This can make traveling much smoother and reduce stress. A physician’s written certificate of need may be required, so call the airline ahead of time.
4. Call hotels to inquire about accessibility and special accommodations.
When staying at a hotel, call ahead to request a room with accessibility features, such as a room near the elevator or with wheelchair access. Additionally, if traveling from an airport, ask about transportation services ahead of time.
5. Continue to take medication as prescribed when changing time zones.
It is extremely important to take prescribed medications using your everyday intervals between doses. Set (or keep) your medication alarms the same as when you’re home. Speak to your doctor if you have any questions.
If you're planning a longer stay, call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) to find local Parkinson’s exercise classes and support groups in the area you are visiting.
7. Check your medical insurance policy.
Be sure to check in with your health insurance before traveling so you are aware of any coverage or lack thereof.
8. Take your time, relax and enjoy.
Give yourself extra time for everything — it's vacation after all. Enjoy longer meals, take breaks between the sites and activities, rest your legs at a coffee house, and try a sightseeing bus tour. Plan to see fewer sites so you enjoy them more, and when possible, book tickets for sites online ahead of time so you can minimize lines.
Traveling with Parkinson's can come with added challenges; however, planning can help reduce stress and anxiety. Explore our Traveling with Parkinson’s page for our full list of tips.
My journey with Parkinson’s disease (PD) began at age 65, when I received a PD diagnosis. Doctors believe I had Parkinson’s for about four years prior to diagnosis. One chapter of my PD journey concluded with deep brain stimulation (DBS) surgery followed by programming and meeting with my neurosurgeon. My goal is to continue to enjoy adventure travel, cycling, photography and playing music with friends for as long as possible. There’s no doubt that DBS will add years of quality time to my life.
I began writing poetry as a catharsis for dealing with the disease and treatments. Up until my diagnosis, I had never written or even been particularly interested in poetry. Looking back, my brain’s response to the stress and adversity emerged in the form of poems that created an emotional vocabulary to express the disease at a visceral level. I never intended to share these poems with anyone.
Having come through the other side of the DBS process, and at the request of my neurosurgeon Dr. Kendall Lee, I felt it was important to share my work to give others a real understanding of the process of treating Parkinson’s with deep brain stimulation. This experience inspired me to write a book titled No Turning Back: Journey from PD Diagnosis to DBS Surgery. The goal of the book is to change antiquated perceptions about DBS as a treatment of last resort for people with PD.
I had the good fortune of working with Mary GrandPré, whose talent and artistry interpreted my words and infused a level of visual emotion beyond my imagination. I hope you will find this writing to be honest, raw, vulnerable and accessible. This is one patient’s experience with DBS.
I have also connected with the PD community through volunteering for the Parkinson’s Foundation. My daughter, wife and I volunteered for Moving Day Twin Cities in Minnesota. It was a great experience that we plan to repeat for years to come. We are also hosting a No Turning Backbook launch event at the Walker Art Center in Minneapolis, with all ticket and book sale proceeds going to the Parkinson's Foundation.
Is there a cure for Parkinson’s disease? How is it treated?
Treatment may include things that you do yourself, such as exercise, or things that you do with oversight, such as physical therapy, occupational therapy, and speech therapy or talk therapy. It may also include medications specific to your needs, such as medications aimed at improving your movement, and others aimed at improving non-movement symptoms such as constipation, urinary dysfunction, or sleep. The treatment of Parkinson’s is often best served via a team approach, with you – the person with PD – at the center and incorporation of your care partner, healthcare provider, therapists and other healthcare providers who treat specific symptoms of Parkinson’s.
Este libro ha sido diseñado como guía práctica para explicar el proceso completo recomendado para las personas con Parkinson y las familias que consideran una terapia quirúrgica. El contenido explora todo desde la decisión de someterse a la cirugía, hasta el día de la cirugía y su recuperación. Si bien la información de este libro pretende facilitar una discusión sobre las opciones quirúrgicas con la familia, los amigos y el equipo de cuidado de la salud, no pretende sustituir la asesoría de los expertos en la materia, a cargo de su cuidado.
How a Neurologist is Using Data to Make Parkinson’s Research and Care More Inclusive
Life with Parkinson’s disease (PD) is unique to every person. The journey to a diagnosis, symptoms and disease progression varies. Roshni Patel, MD, MS, believes that diverse and inclusive care practices and research recruitment are key to ensuring access to quality care for everyone, and to learning more about PD.
“There has been a push for more diverse and inclusive patient recruitment in Parkinson’s research studies,” Dr. Patel said. “And that push actually led me to a subtopic I've become very interested in – LGBTQ+ health and neurology. Not much is known about LGBTQ+ health in Parkinson’s. People with Parkinson’s have high rates of mood disorders, depression and anxiety, and it’s also been shown that LGBTQ+ patients with other neurological disorders have high rates of those symptoms, so I wanted to see if LGBTQ+ people with Parkinson’s may be at a higher risk for mood disorders.”
During her movement disorders fellowship at Rush University Medical Center, a Parkinson’s Foundation Center of Excellence, Dr. Patel reviewed recent self-reported survey data where she looked at the movement and non-movement symptom burden among LGBTQ+ people with Parkinson’s. This is one of the first studies looking at Parkinson’s symptom burden for LGBTQ+ people and could inform care practices for this population. She recently submitted her findings and is awaiting publication.
During her fellowship, Dr. Patel became interested in epidemiological research (the study of diseases as they relate to populations), where she used large datasets to answer questions. In her current role as a neurologist at Jesse Brown VA Medical Center, Dr. Patel splits her time between seeing patients and conducting research. While she has access to the VA system’s robust clinical database, she is excited to see the current trend in research is making more data open access.
“The move to make more data available for any researcher to access and analyze is really promising,” she said. “It offers the chance for new people to take a look and possibly see new things that the original researchers might not have thought about or looked at. It can hasten discoveries and makes things more transparent.”
She also believes that genetic studies of Parkinson’s, like PD GENEration: Mapping the Future of Parkinson’s Disease, can make a big impact. “Access to data from a big genetic cohort will be amazing,” she said. “I think that data will speed up the rate of discovery in terms of identifying genetic risk factors.”
Lately, through patient visits, Dr. Patel has noticed a trend of increased telehealth neurology opportunities. The ability to see a movement disorders specialist virtually improves inclusivity since it simplifies access to care. One program she is excited to get more involved with offers telehealth neurology visits to veterans in rural areas who do not have access to a neurologist. Participants wear a device similar to an accelerometer that measures their movements and generates a report that helps their doctor see their movement response to their medications.
“This program will be a good proof of concept to show that in a cohort of telemedicine-only Parkinson’s patients, a doctor could manage their movement Parkinson’s symptoms with a remote body-worn sensing device that provides objective data. Something like this has the potential to greatly increase access to care.”
Dr. Patel credits her Parkinson’s Foundation fellowship for her deep interest in leveraging data to find Parkinson’s disease trends and information that can be helpful for doctors and people with PD — along with her passion for improving inclusivity in PD research and care.
“This unique two-year fellowship gave me time to both care for patients and develop a research interest and learn more about the research process,” she said. “Research fellowships need funding. The Parkinson’s Foundation is essential because it allowed Rush to provide that fellowship to me.”
The Parkinson’s Foundation is proud to provide several types of grants that encourage young clinicians and researchers like Dr. Patel to devote their talents to the study of Parkinson's disease.
8 Questions You’ve Always Wanted to Ask a Movement Disorders Specialist
Movement disorders specialists (MDS) are neurologists who specialize in conditions such as Parkinson's disease (PD) and have experience treating PD at every stage. Janis Miyasaki, MD, is a movement disorders specialist and Professor of Neurology and Medicine at the University of Alberta. We asked Dr. Miyasaki to delve into the doctor’s side of the Parkinson’s experience.
Why is it important to see a neurologist rather than a primary care doctor for Parkinson’s?
The average family doctor will see less than five people with Parkinson's disease in their entire career. That doesn't allow them the comfort level of seeing a patient, diagnosing them and guiding them through PD stages to help them maximize their quality of life.
A neurologist specializes in illnesses of the brain, spinal cord, muscles and nerves, which includes Parkinson's disease. A neurologist also spends four to five years in residency to obtain this expertise, which means they have a lot more opportunity to see these patients over time. They can look at the advanced therapies that have been developed in recent years to improve life for people with PD.
How do movement disorders specialists collaborate with other members of the PD care team?
Movement disorder neurologists, first, collaborate with the patient and their family. People often don't think of a spouse or family member as part of the care team, but in my mind, they are the most important members of the care team. Care partners are a second set of eyes to observe symptoms and they can help advocate for their loved one.
Then there's the traditional team. Most movement disorder clinics will include nurses who have spent their career involved in the care of Parkinson’s patients. This gives them an expertise to problem-solve in between neurology visits and reinforce messages from the care team.
We often work alongside physiotherapists and occupational therapists. As an MDS, I communicate with these specialists because they might see a symptom or challenge that we may not have seen in the clinic visit. Many units also have speech language pathologists, who help with speech and swallowing as they relate to Parkinson’s, as well as dietitians who can assist with symptoms like constipation.
It's important that the team is always communicating, so everyone is on the same page about how we can best help our patients. In my clinic, every morning we check in to discuss the patients we'll be seeing that day. Everyone on the care team has an opportunity to talk about what they have noticed recently in a patient’s life. From there, we decide what to highlight during the visit.
Diagnosing Parkinson’s can take time and not always be cut and dry. Can you walk us through how you diagnose PD? What are you looking for?
At this point, we do not have imaging or a blood test that definitively confirms a Parkinson’s diagnosis. Rather, the diagnosis needs to be taken in the context of the person. This can be frustrating for patients and families, but to me, this is the beautiful part of neurology. We have to talk to our patients, examine them and follow them over time.
If a neurologist notices your response to medication is very typical and that you develop common symptoms of PD (like motor fluctuations or dyskinesia), the accuracy of diagnosis is about 70%. The accuracy of diagnosis for an MDS with those same criteria is about 80%.
Movement disorders specialists see a lot of patients, so we know which symptoms are typical in Parkinson’s disease. Or if the symptoms don’t seem to be consistent with Parkinson's, we can think about alternative movement disorders and send this person for other tests.
What symptoms do patients find most invasive to their quality of life? How do you address them?
There are many Parkinson’s symptoms that affect quality of life. Symptoms that impact mental health can be particularly problematic. In Parkinson’s, changes in the brain can increase the risk of anxiety and depression.
One challenge we face is that many people with PD who need mental health support grew up in an era where it was shameful to ask for help. If your family is encouraging you to seek help, it's not because they find you bothersome — it’s because they hope that you can be better. I encourage people who are experiencing these symptoms to seek out help from mental health experts, because the landscape of medications and approaches available are vast compared to decades ago.
Pain is another symptom that people often don't associate with Parkinson's disease. Some patients present with pain before they develop movement symptoms of PD. You may experience pain or aching as you notice stiffness and mobility problems. Palliative care principles have been introduced to treat Parkinson's disease because palliative care specialists are experts in assisting with pain control.
Do you recommend exercise to your PD patients?
We have evidence that people with PD do better when they exercise. The baseline activity should be moderate intensity exercise five days per week, for about 30 minutes each day. Moderate intensity means you're slightly short of breath when you're doing the activity and trying to carry on a conversation.
When you exercise, keep it consistent and make sure you enjoy it. Try varying the type of activity as well. You could ride on the exercise bike twice a week, attend a boxing class twice a week and join a walking club in your neighborhood. This type of varied movement is good for your body, your joints and your brain. Exercise is even associated with a decreased risk of cognition problems and dementia.
What made you decide to pursue movement disorders as a specialty?
I entered the movement disorders field with a little bit of luck. During the last year of my residency, Dr. Anthony Lang, who is a luminary in movement disorders, asked me what I was doing the coming year. I didn't have plans, so he asked me to be his fellow.
I had already developed an affinity for movement disorders patients, especially people with Parkinson's disease. This was before deep brain stimulation was a treatment option. The patients were so brave and giving to us in our research; they were willing to help with any project that might shed more light on people with Parkinson's.
I enjoyed knowing that no matter who walked through that door, I could help them feel a bit better. This area has been a never-ending revelation to me about what I can learn about patient care.
What is it like being an Asian woman in this field?
To give you an idea of how long I've been in this field, my membership number in the International Parkinson and Movement Disorders Society (IPMDS) is 96 [Today, IPMDS states they have 11,000 members]. When I started my career, I was one of the few women in the society, and I believe I was the only Asian woman at the time.
I have not had a lot of role models who look like me, but I have had role models who embody the characteristics that I hope to bring to my work. I always say to my students, “If you get to be in a place of power, give a chance to someone who doesn't look like you.” It's so easy to choose someone who thinks and looks like us, but it’s much harder to choose someone who looks and thinks differently.
Diversity of thought can help make great leaps in knowledge, especially when people stretch outside of their comfort zone.
Why are you also interested in PD research? Can you summarize some of your work?
As an academic neurologist, research is part of what we do. I began my career as a clinical trialist focused on early drug studies for Parkinson’s disease. Over time, I became interested in palliative care for Parkinson's.
After watching patients deteriorate after decades of living with PD, it broke my heart when other physicians would say, “There's nothing more we can do for you.” I felt that there is always something that we can do for our patients. I started applying palliative care principles to Parkinson’s patients in our movement disorders clinic.
I started as one lonely voice in 2007, but now there are dedicated clinics that provide palliative care to people with Parkinson's. I’m currently involved in a research project to initiate palliative care at all the Parkinson’s Foundation Centers of Excellence in the U.S. I find this project to be incredibly rewarding, and I hope that everyone who participated now understands the benefits of palliative care.
Board Member Since 2021
Dr. Janis Miyasaki is a Professor of Neurology and Medicine at the University of Alberta. She previously worked at the University of Toronto for 22 years, where she founded the world’s first Palliative Care Program for Parkinson’s Disease and Related Disorders. Dr. Miyasaki currently serves as Vice President of the Board of Directors of the American Academy of Neurology. She is the first director of Equity, Diversity, and Inclusion for the Department of Medicine at the University of Alberta and has held leadership positions at the International Parkinson Disease and Movement Disorder Society and the Parkinson Study Group.
For help finding a movement disorders specialist near you, contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).
La Guía de seguridad hospitalaria es un recurso para personas con la enfermedad de Parkinson (EP) y sus aliados en el cuidado, repleta de información y herramientas útiles para estar preparados para una estancia hospitalaria.
¿Por qué es importante la seguridad hospitalaria para las personas con la enfermedad de Parkinson? Las personas con la EP tienen un mayor riesgo de hospitalización y enfrentan muchos desafíos durante su estancia en el hospital. Es posible que el personal del hospital no sepa lo suficiente acerca del Parkinson como para comprender los síntomas o saber que pueden empeorar cuando la medicación para la EP no se suministra a tiempo. Una preparación cuidadosa y una comunicación clara pueden ayudar a minimizar las complicaciones y el tiempo de recuperación.
La Guía de seguridad hospitalaria ofrece información y herramientas útiles para ayudarle a abogar por la mejor atención posible, como:
Las cinco necesidades de atención para el Parkinson
Formularios para llenar con datos sobre cuidados personales y horarios de medicación
Consejos para aliados en el cuidado
Información sobre los cuidados del Parkinson para compartir con el equipo médico del hospital
Episodio 26: La hospitalización con la enfermedad de Parkinson
Las investigaciones han encontrado que 3 de cada 4 personas con la enfermedad de Parkinson no reciben medicamentos a tiempo cuando están internadas en el hospital. Cuando esto ocurre, 2 de cada 3 personas experimentarán complicaciones innecesarias.
Con visitas hospitalarias más a menudo y una alta sensibilidad a la frecuencia y dosificación de los medicamentos para la enfermedad de Parkinson, las personas con Parkinson enfrentan grandes riesgos en un hospital.
En este episodio, hablamos con Adrian Mireles acerca de sus experiencias en el hospital desde su diagnóstico de Parkinson. Adrian comparte los desafíos que ha enfrentado cuando ha estado hospitalizado y qué le resultó útil durante esas visitas, como el kit de seguridad hospitalaria Aware in Care de la Parkinson’s Foundation.
Adrian también explica lo que significa ser su propio promotor y comparte consejos para otras personas con la enfermedad de Parkinson acerca de cómo conseguir una mejor atención en el hospital.
Publicado: 16 de mayo de 2023
Adrian Mireles fue diagnosticado con la enfermedad de Parkinson en 2017. Trabajó durante 21 años principalmente en servicios de transporte en campos petroleros, pero también cuenta con experiencia en radio y en escena y ha desempeñado algunos papeles menores en películas. Adrian es un Embajador de la Parkinson's Foundation. Cree firmemente en la educación, la promoción y en tener una actitud positiva, todo lo cual ha sido una parte integral de su recorrido por el Parkinson.
¿Quiere escuchar más?
Suscríbase o descargue el podcast hoy! Hay varias opciones para escuchar:iTunes, TuneIn (Amazon Echo),Spotify o RSS Feed.
I was diagnosed with Parkinson’s disease (PD) in September 2009. My DBS story began in June 2020, when I underwent three surgeries to have a deep brain stimulator (DBS) installed in my head. A DBS device is similar to a cardiac pacemaker, except it sends electrical shocks to my brain instead of my heart. The benefits of said stimulator are relief from some Parkinson's symptoms, including tremor, bradykinesia and rigidity/stiffness. Successful DBS surgery also allows people with PD to reduce their medication.
My first surgery took place on June 9. The surgeon inserted screws into my cranium and used an MRI to take a picture of my brain. This was an outpatient surgery and I found it to be the most painful recovery of the three surgeries.
My second surgery took place on June 19. The surgeon opened my brain to insert an electrical circuit. With assistance from my neurologist and a trusted PA, my surgeon placed two leads: one in the right and one in the left side of my brain. The leads helped improve function on opposite sides of my body. The last step was to connect the wiring to the leads and wind up the wiring under my skin, for the future connection to the neurogenerator. This was an inpatient surgery requiring one night's stay. After a well-deserved night of pampering, I returned home in preparation for the final surgery.
My third and final surgery, to connect the system, took place on June 29. This was an outpatient surgery that placed the neurogenerater under the skin in my chest and connected the pieces of my three-piece brain puzzle. The surgeon used a ‘boring’ tool to create a tunnel from behind my ear down my neck to the neurogenerator to complete the circuit.
I understand that currently, they are offering a single surgery of a longer duration instead of the three I experienced. I believe that this all-in, one-time surgery still includes the option of being awake during the second procedure. If you trust your neurologist and surgeon completely (as I did, do, and always will) and you think you can handle staying awake during surgery, I promise that you won't regret it. I found it to be the most fascinating experience in my life! I wasn't in pain, and I was able to communicate with my neurologist as I watched him 'tune in' the system by testing my arms and legs for rigidity.
Two weeks later, they turned the system on. My wife and I watched as my neurologist adjusted the frequency and amplitude and the tremors miraculously melted away! Tears welled up in my eyes as I rose from my chair and walked, without freezing, right out the door.
This is not where my story ends, though. I was told that the battery life in my neurogenerator would last some three to five years but would probably need replacing sooner. On the day before Thanksgiving (November 23, 2022), the iPod that I used to monitor my neurogenerator indicated in yellow that I should replace the neurogenerator as the battery was losing its strength. I called and scheduled my replacement surgery, which was delayed until December 27 due to the holidays and a blizzard.
In the four days between Christmas Eve and the rescheduled day of surgery, my neurogenerator had failed completely and as expected, my condition worsened steadily as my brain wasn't generating enough dopamine. The tremors, bradykinesia and rigidity were taking over. The only relief I found was when I slept.
The doubts began to creep in: What if my neurosurgeon couldn't turn on the new neurogenerator right away? What if the DBS didn't function as well as I had previously experienced? After all, my symptoms had progressed since my original surgeries; would the DBS be able to keep up?
Upon my return home after the surgery, I went to take a nap. In that moment, I suddenly understood the wave of emotions that Ebenezer Scrooge experienced as he gleefully repeated, "I don't deserve to be this happy." I had been given not one, but two, opportunities for redemption in my life! The significance of the first I had minimized and attributed to the marvels of modern science. But the second has stricken me so powerfully, I feel compelled to share my story in hopes that it might encourage someone else to consider DBS!
I am grateful to all the neurosurgeons, neurologists, PAs, nurses, anesthesiologists and support staff personnel who work to help people with Parkinson’s disease live better lives. I am also grateful to the Parkinson’s Foundation for providing resources to the PD community. I have attended symposiums and used their online exercises classes to learn more about Parkinson’s and manage my disease. I have also used their legal resources at times.
Finally, I cannot express in words how grateful I am to my wife and soulmate whom I so wisely married over 34 years ago.
