Parkinson's: useful resources

Receiving a Parkinson's diagnosis can be overwhelming. It is normal to feel fear, sadness, anger, relief at finally having an explanation, or a mix of everything at once. This guide is intended for two people at the same time: for the person who has just received the diagnosis and for their family or close circle. The idea is not to anticipate every possible problem, but to help you organize the first steps, know what questions to ask, and find reliable resources from the beginning.

Guide index:

• Parkinson's diagnosis
• The medical team and support network
• Treatment: what you can expect and what you should ask
• Physical exercise
• Rehabilitation: physiotherapy, occupational therapy, and speech therapy
• Nutrition
• Mental health and sleep
• Work and daily life
• For the family of the person diagnosed
• Parkinson's associations and communities
• Current research and clinical trials

A Parkinson's diagnosis does not mean your life is over

Parkinson's is a chronic and progressive disease, but its progression varies greatly from person to person. Some people continue working for years, others need to adapt their routines sooner, and many live long stages with good autonomy if they have medical follow-up, adjusted treatment, exercise, rehabilitation, and support. The NINDS, the NIH's neurological institute, points out that the course of the disease cannot be predicted exactly for each person and that many people with Parkinson's continue to work full-time or part-time, although they may need adjustments.

It is also important to separate the diagnosis from the myths. Parkinson's does not necessarily mean intense tremors, a wheelchair, dementia, or immediate disability. Symptoms can start subtly, affect one side of the body more, and combine motor problems with invisible symptoms, such as constipation, altered sleep, anxiety, depression, pain, fatigue, or blood pressure changes.

To start calmly, you can consult the Parkinson's Foundation Guide for the Newly Diagnosed, which proposes five first steps: define goals, find someone to talk to, create healthy habits, stay active, and find a Parkinson's expert. You can download it [here]

What the diagnosis really means

A Parkinson's diagnosis is usually clinical. This means it is mainly based on medical history, symptoms, and neurological examination. There is no single blood test, MRI, or imaging scan that can confirm all cases of Parkinson's disease on its own. The Parkinson's Foundation explains that tests can be used to support the diagnosis or rule out other diseases, but that clinical history and physical examination remain essential.

In addition to the neurological examination, it is common for the specialist to use rating scales. Their function is to help measure the situation of each patient in a more orderly way, making it possible to better assess how the disease is evolving, whether a treatment is working, which symptoms have improved or worsened, and which aspects should be addressed in the next visit.

• GuíaSalud on Parkinson's disease: an official resource especially useful for patients and families, where in addition to talking about symptoms and the disease, its progression, and habits to prevent complications, it also explains the support organizations and entities in Spain. You can download it [here].
• Know Parkinson's: Well-explained guide on scales in Parkinson's
• Spanish Parkinson's Federation: Coping and communication sheet for the disease
• Parkinson's Foundation: Understanding medication timing and coping with the diagnosis (podcast episode)

The medical team and support network: you shouldn't have to manage this alone

Parkinson's usually requires a team approach. The person diagnosed is at the center, but neurology, primary care, specialized nursing, physiotherapy, occupational therapy, speech therapy, nutrition, psychology or psychiatry, social work, and pharmacy may participate around them. The Parkinson's Foundation describes treatment as a team approach in which the person with Parkinson's, their care partner (family member, caregiver...), and professionals work together.

NICE recommends that people with Parkinson's have a comprehensive care plan agreed upon with the individual, family members, or caregivers where appropriate, as well as access to specialized services. It also recommends offering an accessible point of contact for specialized services, which may be a Parkinson's-specialist nurse when available.

A very practical question for the next consultation is: Who will be my point of contact if a problem arises with medication, a fall, hallucinations, swallowing difficulties, or rapid worsening? Being clear about who to call avoids improvised decisions.

• APDA has a list of questions to take to your first medical appointments. These questions can serve as a starting point to guide the first conversation, although APDA provides general answers. (Resource in English)
• Know Parkinson's has a Parkinson's medical dictionary, which can be very useful for familiarizing yourself with the terminology in consultations.
• Parkinson Madrid also has a Parkinson's medical dictionary.
• The Spanish Parkinson's Federation offers a booklet to prepare for the neurology consultation (for patients, family members, and caregivers) and a more schematic flyer (more for patients).

Treatment: what you can expect and what you should ask

There is no single treatment for everyone. Treatment depends on symptoms, age, work, lifestyle, other illnesses, tolerance to drugs, and the person's goals. NICE recommends talking about individual clinical circumstances, risks, lifestyle, preferences, and goals of each patient before starting treatment.

Levodopa, usually combined with carbidopa, is one of the main treatments for motor symptoms. The NINDS describes it as the cornerstone of drug treatment: it can improve movement-related symptoms, but it does not replace lost neurons or stop the progression of the disease. It is important that no medication is stopped suddenly without medical advice. NICE warns that abruptly withdrawing them or having them fail suddenly due to poor absorption can have serious consequences, such as acute akinesia or neuroleptic malignant syndrome.

It is also advisable to talk about possible side effects from the beginning. Some dopaminergic treatments can be associated with drowsiness, sudden sleep, hallucinations, delusions, or impulse control disorders. NICE recommends informing the person and their family verbally and in writing about risks such as compulsive gambling, hypersexuality, compulsive shopping, or binge eating, especially with dopamine agonists.

• Parkinson Madrid: Explanation of the different treatments for Parkinson's

Physical exercise: a part of treatment, not an extra

Exercise is one of the most important tools from the moment of diagnosis. It does not replace medication when it is necessary, but it can help maintain mobility, strength, balance, flexibility, mood, and quality of life. The Parkinson's Foundation indicates that people who begin exercise in early stages and perform at least 2.5 hours a week experience a slower decline in quality of life compared to those who start later.

The practical recommendation is to start safely. Walking, strength exercises, balance, mobility, dancing, stationary cycling, swimming, Nordic walking, or specific programs for Parkinson's can be useful, but the ideal is to adapt the plan to physical condition and symptoms. If there are falls, dizziness, pain, freezing of gait, or significant balance problems, it is advisable to consult with physiotherapy or rehabilitation first.

• Physiotherapy protocol for Parkinson's disease (Spanish Parkinson's Federation)
• Weekly physiotherapy program for people with Parkinson's (Parkinson Madrid Association). This resource was created so that people could do their routine at home during the lockdown. Each day focuses on a different goal: Monday is mobility training; Tuesday is coordination, mobility, and balance; Wednesday is strength; Thursday is balance and mobility...
• Train your health: Parkinson's disease program (Alcobendas City Council). This resource is interesting because it has direct links to YouTube videos explaining the routines. The PDF explains which of these routines is suitable for each person, according to their needs.
• This NHS brochure contains tips and exercises for people with Parkinson's. (Resource in English)

Rehabilitation: physiotherapy, occupational therapy, and speech therapy

Rehabilitation should not be reserved only for when a fall or injury occurs. The Parkinson's Foundation points out that physical therapy, occupational therapy, and speech and language therapy can help you move with more confidence, handle daily tasks with greater ease, communicate better, and maintain your quality of life. It also indicates that it is recommended to start rehabilitation from the time of diagnosis and review it periodically.

Physiotherapy can work on gait, posture, balance, strength, mobility, freezing, fall prevention, and strategies for getting up, turning, or walking more safely.

Occupational therapy helps preserve autonomy in daily activities such as dressing, washing, cooking, writing, organizing routines, or adapting the home. GuíaSalud explains that occupational therapy seeks for the person to be as independent and autonomous as possible, and can include adaptations such as velcro instead of buttons, thickening brushes or combs, removing rugs, using non-slip tablecloths, bars in the bathtub, or toilet raisers.

Speech therapy is not just "to speak better." It can help with low voice, articulation, communication, saliva, and swallowing. NICE recommends speech therapy for people with communication, swallowing, or saliva problems, including strategies to improve safety when swallowing and communication.

• If you live in Madrid, Parkinson Madrid invites you to join the Parkinson sports team, which offers spots in various sports such as athletics, tennis, padel, hiking, or petanque, with physical therapists leading the activities.

Diet, constipation, and supplements

There is no diet that cures Parkinson's, but nutrition can influence specific symptoms (constipation, weight, energy, hydration, or interaction with some medications). The Parkinson’s Foundation includes resources on protein and levodopa, hydration, fiber for constipation, and weight loss within its management and lifestyle materials.

If you take levodopa and notice motor fluctuations, it is advisable to ask your neurologist or dietitian if it makes sense to review your protein distribution throughout the day. NICE recommends discussing a protein redistribution diet for people with Parkinson's who take levodopa and have motor fluctuations, but it also advises against reducing total daily protein without supervision.

One must be cautious with supplements. NICE recommends not taking dietary supplements without first consulting a pharmacist or other healthcare professional. It also advises against using vitamin E, coenzyme Q10, dopamine agonists, or MAO-B inhibitors as neuroprotective therapies outside of clinical trials.

• Parkinson's Foundation: Nutrition and Parkinson's (Podcast episode)

Mental health and sleep: don't put it off

After the diagnosis, emotional health matters just as much for the diagnosed person as it does for their support system. The Parkinson’s Foundation notes that maintaining emotional health is essential to living well with Parkinson's and that the diagnosis, along with changing symptoms, can trigger a flood of emotions in the person and their loved ones. Seeking psychological help can mean taking care of a part of the disease that also needs attention.

Sleep should also be addressed during consultations. Insomnia, daytime sleepiness, nightmares, movements during sleep, REM sleep behavior disorder, restless legs, or sudden sleep can have a real impact on safety and quality of life. NICE recommends identifying and managing restless legs syndrome and REM sleep behavior disorder in people with Parkinson's and sleep disturbances.

• The Spanish Parkinson's Federation (Federación Española de Parkinson) offers a flyer with tips for rest
• Emotional disturbances in Parkinson's disease (flyer from the Spanish Parkinson's Federation)

Work, driving, and daily life

Many people can continue working after a diagnosis, although they may need adjustments to schedules, tasks, breaks, or the work environment. NINDS notes that many people with Parkinson's continue working full-time or part-time, although they may need to adapt their schedule or workplace.

Driving should be assessed on a case-by-case basis. The DGT (Spanish Traffic Authority) explains that Parkinson's, due to its symptoms in advanced stages and the medication, can prevent safe driving, but it also notes that the mere presence of Parkinson's does not automatically make a person unfit to drive. The risk increases with progression, especially if there are motor problems, coordination issues, balance issues, cognitive or visual disturbances, sleepiness, or medication effects.

In Spain, the Spanish Society of Neurology and the DGT have the Neurology and Driving Manual, which analyzes neurological diseases, drugs, and the capacity to obtain or renew a driver's license. It can be a useful resource for discussing the topic with your neurologist and medical examination centers.

At home, it is advisable to check for safety before the first scare occurs. Rugs, poor lighting, slippery floors, bathtubs without support, cords, unstable footwear, or poorly placed furniture can increase the risk of falls. Home adaptation does not have to be done all at once: it can start with the bathroom, bedroom, hallways, and areas where the person gets up at night. You can read more about how to adapt your environment in our article Home safety for people with Parkinson's.

For the family of someone diagnosed with Parkinson's

Parkinson's does not only affect the diagnosed person. It also changes family routines, conversations, plans, fears, and responsibilities. The WHO recognizes that informal caregiving, often performed with the best intentions by family or friends, can create physical, emotional, and economic strain, and that families need support from health and social systems.

NICE recommends that family members and informal caregivers learn about their right to an assessment of their needs, support, and respite, and also to be included in the care plan when appropriate.

For the family, a useful rule is to provide support without turning every symptom into an emergency. For the person diagnosed, another useful rule is not to carry it all in silence. Parkinson's is easier to manage when discussed honestly, without dramatizing and without denial.

• Conoce el Parkinson offers a caregiver's guide.

Parkinson's UK has a specific forum for caregivers, friends, and family of people with Parkinson's. If language is not a barrier, it can be a good resource as it is a quite active community. Some interesting threads:

• Thread on how to deal with the anger and frustration of my partner with Parkinson's
• Thread "when home care becomes too difficult"
  

Associations and communities: you don't have to learn everything alone

Parkinson's associations can be a very valuable source of information, therapies, support groups, workshops, exercise, speech therapy, physical therapy, social guidance, and contact with other people who have already gone through the beginning of the diagnosis.

In Spain, the Spanish Parkinson's Federation (Federación Española de Párkinson) has a directory of associations. Its map includes 74 associations and serves as a support network for diagnosed individuals and their loved ones.

You can also explore their Parkinson's Community (Comunidad Párkinson), an initiative by the Spanish Parkinson's Federation designed for people with symptoms, family members, and caregivers, offering training, information, and the exchange of experiences.

• You can stay up to date on all events and activities offered by the Spanish Parkinson's Federation in their news section or by subscribing to their newsletter.

Forums for communities of people with Parkinson's

Forums can be very helpful for feeling supported, but they should be used with judgment: they are for sharing experiences, not for deciding on treatments without consulting your healthcare team. Some useful communities in Spanish are Conectando Pacientes, with a forum in Spanish about symptoms, diagnosis, specialists, and questions; and Carenity, with a community for sharing experiences about family, social, and professional life with Parkinson's.

• Thread on how to face day-to-day life with Parkinson's (Carenity)
• Thread on good days with Parkinson's (Carenity)
• Thread of people sharing what exercise helps them manage the disease better (Carenity)
• Thread on the progression of Parkinson's disease (Conectando Pacientes)
• Thread of a question about whether symptoms could be a possible Parkinson's (Conectando Pacientes)
• Thread with Parkinson's associations in Spain (Conectando Pacientes)

Other alternatives in English can be PD Conversations, from the Parkinson’s Foundation, with groups on diagnosis, symptoms, treatment, daily life, caregiving, young-onset Parkinson's, and support in Spanish; and the Parkinson’s UK Forum, with categories on health, symptoms, daily life, and ways to take control.

Current research and clinical trials on Parkinson's

Parkinson's research is advancing, but it is important to distinguish between available treatments, promising studies, and premature headlines. NINDS explains that there is currently no cure, although medications or surgery can improve many motor symptoms, and that research is ongoing to better understand the disease, develop treatments, and improve diagnosis.

There are also advances in biomarkers, such as the alpha-synuclein seed amplification assay, but NINDS indicates that it is not yet widely available.

If you want to participate in research, the most reliable resource for locating studies is ClinicalTrials.gov, linked by NINDS as a clinical trial search engine. Clinical trials allow for more learning about the disease and can connect patients with research options, but they should always be evaluated with your medical team.

What to remember when leaving this guide

A Parkinson's diagnosis changes things, but it does not completely define the person. Reliable information, medical follow-up, exercise, rehabilitation, emotional health, smart adjustments, and family support can make a big difference.

You don't have to solve everything in the first week. Start with three steps: confirm that you have follow-up with a suitable professional, log your main symptoms, and build a support network. To delve deeper, you can rely on trusted resources like the Parkinson’s Foundation for the newly diagnosed, GuíaSalud in Spain, the Spanish Parkinson's Federation, and nearby associations.

And one last thought: living with Parkinson's doesn't have to mean living while waiting for the next symptom. You must learn to take care of yourself, adjust what is necessary, and continue making decisions about your life with as much autonomy as possible.