Caregivers
Caregivers—whether family members or professionals—play a key role in supporting patients with ataxia and other rare diseases that can be neurodegenerative.
Caregivers and their care
Love is a medicine that’s always available.
Caregivers – whether family members or professionals – play a fundamental role in the treatment of patients with ataxia. This neurodegenerative condition affects motor coordination and balance, which can compromise several daily activities.
Some significant neuropsychiatric symptoms, such as anxiety, depression, and other mood disorders, may also occur.
The presence of well-trained and committed caregivers is crucial to providing comprehensive support that encompasses physical, emotional, and social aspects . This support can significantly improve the patient's quality of life.
Portuguese video with English subtitles.
Examples of Care
Let’s look at some examples of support that can be provided by caregivers.
Assistance with Daily Tasks
People with ataxia may experience difficulties with basic activities such as dressing, eating, and maintaining personal hygiene. The caregiver can help the person with ataxia perform these tasks more safely and with greater ease.
Adaptations
By understanding the specific needs of the patient, the caregiver can adapt the home environment to facilitate mobility and reduce the risk of falls (for example, rearranging furniture, installing grab bars in bathrooms, removing rugs or other objects that could cause tripping or falls, and placing daily-use items—like kitchen tools—within easier reach, which is especially important for wheelchair users).
Health Monitoring
Many caregivers live with or spend daily time with the person they care for, allowing them to observe new symptoms or worsening of existing ones. These observations can be reported to the doctor during appointments, supporting the patient’s own report and enabling treatment adjustments. See the next item!
Facilitating Communication with the Medical Team
The caregiver acts as a bridge between the patient and healthcare professionals, ensuring that relevant information about the disease's progression is shared and that necessary therapeutic adjustments are made. In cases where speech is affected (ataxic dysarthria), caregivers often help the patient communicate better with family, friends, and health professionals.
Emotional and Psychological Support
Living with a progressive condition can bring feelings of frustration, anxiety, and depression. The caregiver can offer emotional support, helping the patient cope with these challenges and stay motivated.
Promoting Self-Esteem
By offering ongoing support and encouragement, the caregiver contributes to maintaining a positive outlook and continued engagement in treatment.
Medication Management
The caregiver can help the patient organize and follow medication prescriptions (including timing and proper dosage).
Accompaniment to Therapy Sessions
The caregiver can assist the patient in getting to physical therapy, speech therapy, rehabilitation centers, hydrotherapy, Pilates, hospitals, doctor’s offices, labs, etc. This may include driving, calling a taxi or Uber, helping the patient board safely, folding mobility aids such as a walker or wheelchair for transport, reassembling them upon arrival, helping with transfers, and assisting with public transportation like subways, buses, ferries, BRT, or light rail. This support is crucial, as many patients have mobility difficulties and these protocols (such as physiotherapy sessions) are essential for improving quality of life and slowing symptom progression.
Home Exercise Support
The caregiver may also assist the patient with exercises performed at home by following online videos led by specialized instructors, offering safety during tasks to prevent falls.
Encouraging Socialization
In addition to physical and emotional support, caregivers can encourage participation in social activities and accompany the person in their care to events, outings, and trips—helping them stay connected with the community and avoid isolation.
Family Education and Environmental Adaptation
Rare diseases like ataxias are not widely known, and lack of knowledge may lead to prejudice or inappropriate attitudes from others, including family members. The caregiver can educate family and friends about the patient’s condition, fostering a more inclusive and safe environment.
If you need to share information about ataxias with other family members and friends, send them the link to the portal: ataxia.info.
The Caregiver's Journey
First we start...
FEAR
A day you will never forget is the Day of diagnosis with the confirmation that a person you love has a rare, degenerative, disabling and still incurable disease.
Uncertainty (lack of control, lack of knowledge about what will come) brings anxiety and fear to the patient and also to their closest caregiver.
MANY DOUBTS AT THE BEGINNING.
Could this pain that appeared yesterday be related to ataxia?
She has insomnia... should we report it to the neurologist?
There are stairs here... will we need to move to another location?
Can ataxia alter blood pressure?
I have to take care of her, and I don't know how to do it!
WHAT IF this happens? WHAT IF that happens?
Witnessing the pain of someone you love and not having answers is difficult.
CALM DOWN.
There are many questions, but some answers will only come with time...
Deal with what comes up, one day at a time.
Then we'll get better...
Information
If uncertainty and ignorance cause anxiety and fear, information can reduce these negative feelings.
Seek information (from reliable sources) about the condition you're dealing with, and apply what you learn, transforming this knowledge into support . Knowledge should have a purpose.
Just learning is not enough, you have to apply.
Just wishing is not enough, you have to act.
(Johann Wolfgang von Goethe)
Learn more about ataxia (regardless of the type) as this helps identify and manage symptoms. Information allows us to adopt behaviors that can help and avoid behaviors that can make things worse.
If necessary (based on symptoms), technology can help. Communication devices, artificial intelligence for reading and narrating texts, and describing images—there are many useful apps and tools. But you don't need to learn everything at once. Each step in its own time.
In many situations, you'll be unsure whether or not to help or interfere with an activity the person you're caring for is trying to perform if they're having difficulty. When in doubt, ask , "Do you need help?" Don't assume they can't do it or that they need your intervention (that's ableism). Try to find the balance between concern and undue interference in the other person's autonomy.
Community
Support groups offer a safe space where people can gather information and share feelings, fears, and experiences without judgment, helping to reduce feelings of isolation. There are support groups for ataxia sufferers , as well as groups for caregivers (see below).
Participants share practical tips on treatments, daily care, medication side effects, and strategies to improve quality of life. This exchange of experiences often complements medical advice and helps with informed decision-making. Furthermore, knowing that you are not alone on this difficult journey can bring comfort and motivation to face obstacles.
By the way, know who you can count on in difficult times, because not everyone will be able to help you when you need it. Caring for someone who is sick is a sublime form of relationship, but it's not for everyone. For some, it may lack affection or compassion. For others, it may lack courage.
Planning and routine
Caring for someone with a rare and serious condition brings a new perspective on what is and isn't important.
Your priorities will change . The "big problems and worries" you had yesterday won't seem so big anymore.
With each new day, you need to choose where to invest more energy . This applies to both the patient and the caregiver. Try to help the person you care for become better organized:
Whenever possible, the caregiver should be present at appointments, pay close attention to the doctor's instructions, ask questions to clarify doubts, and participate in important decisions, working in harmony with the person being cared for. This takes time and may impact work routines and personal schedules, but this is part of caring .
The caregiver can work with the person being cared for to establish schedules for eating, taking medication, exercising, resting, etc. It doesn't have to be anything too rigid or bureaucratic, but having a routine can help both the patient (chaos creates more anxiety) and the caregiver, who can then be better organized.
The caregiver can help the person being cared for maintain organized documentation (medical reports, test results). This will help in seeking rights (e.g., INSS benefits) and can also help with participation in clinical trials and research that require a patient history.
It's a good idea to keep your emergency contact information organized. Ataxia patients are generally treated by a neurologist and a multidisciplinary and specialized team, which may include ophthalmologists, physical therapists, speech therapists, nutritionists, psychologists, psychiatrists, and so on. It's a good idea to keep all these contact details up to date.
Adaptation is important . Many types of ataxia are progressive, meaning new symptoms may appear throughout the course. Ataxia still has no cure, but symptoms can be treated. As ataxia progresses, it's necessary to make adjustments and seek new solutions. Diplopia? Prism glasses can help. Depression? A psychiatrist can prescribe an antidepressant. Neuropathic pain? A doctor can prescribe medications that can help and/or recommend physical therapy. When the person being cared for reports new symptoms or difficulties, it's important to consult a doctor to determine whether the new symptom is related to ataxia and, regardless , to seek guidance on the best approach to manage the situation.
Financial planning ($) is important!
Ataxia can be a costly condition to manage. Not everything is available for free through the SUS (Brazilian Unified Health System), some procedures are not covered by health insurance, it may be necessary to purchase medications and dietary supplements recommended by a doctor, there are travel costs to rehabilitation centers, home adaptations may be necessary for greater mobility and safety, and in some cases, it may be necessary to hire a home care service, or arrange hospitalizations or palliative care.
Courage
and hope
Hard times breed strong souls (Eastern Proverb)
A phrase that circulates a lot in ataxia support groups is this: "You never know how strong you really are until it's the only option you have."
This also applies to caregivers.
Planning helps, but you also need to have courage .
Life demands courage not only from those with the disease, but also from their caregivers. Courage is not the absence of fear. Courage is moving forward even when you're afraid . Some days will be better than others. Some days, life will push you, others, it will loosen, but don't lose hope . For those who are religious, faith in God. For everyone, faith in science.
The flow of life wraps everything up; life is like this:
it warms and it cools,
it tightens and then it loosens,
it calms and then it stirs again.
What it asks of us is courage.
(João Guimarães Rosa)
Even in moments when everything feels very difficult, keep hope alive.
Fear is contagious.
Hope is too.
Hope brings hope.
Everything is possible, science advances, and good things also happen.
Tolerance and forgiveness
Love me when I least deserve it, because that's when I need it most.
(author unknown)
If you're caring for someone with a rare disease, learn to forgive yourself, because even with the best intentions, you will make mistakes. When you do, try something that may be difficult but is important — ask for forgiveness. Just be honest: “I’m sorry. I was wrong. I’m still learning. I got nervous. I lost my patience. I said something I shouldn’t have.”
Likewise, learn to forgive the person you're caring for, because they will have good days and not-so-good days, and emotional regulation can be very difficult in certain situations. The person you're caring for may be feeling stressed, in pain, frustrated, angry, or irritable.
Many types of ataxia, in addition to physical symptoms, can also lead to cognitive issues, mood disorders, irritability, anxiety, and depression. At times, some “social filters” may not work as they should, and harsh words may be spoken.
Try to be patient.
Be tolerant.
And if things go too far, learn to forgive.
Likewise, don’t hesitate to ask for forgiveness when needed.
Finally, try not to fall into the “blame game.” The person you're caring for is not to blame for being sick. And you, the caregiver, are not to blame either.
This is not about blame.
A rare disease is not a punishment, and it’s no one’s fault — it's part of our biology.
Love
The caregiver's journey shared here began with fear, but will end with love.
And it's not just any love – it's a rare love.
There are many ways to love, and one of them is caring for someone.
While it may be difficult, caring for unique people brings unique opportunities. Witnessing their strength and courage up close daily is also an opportunity to become a better person.
In your journey as a caregiver, there will be good days and not-so-good ones. Sometimes, saying " you're not alone , I'm here for you " may be the only comfort you can offer.
Celebrate small achievements.
On difficult days, just being present and saying a few kind words can make a big difference.
A hug can also say a lot, even without words.
Every good day is a day that should be recognized and enjoyed.
Be grateful for these moments.
Be grateful for a rare love.
Testimonials
Who takes care of the caregiver?
The caregiver needs to pay attention to self-care (physical and emotional), as they may face some difficult challenges and may also become ill.
Physical and emotional overload ( burnout ): Caring for someone with a progressive illness can be exhausting. Caregivers often face fatigue, stress, and feelings of helplessness.
Social isolation: Dedication to the patient can lead to withdrawal from social activities, hobbies, and even other family relationships, resulting in loneliness and emotional exhaustion.
Lack of technical preparation: Many family caregivers lack formal training to deal with the complexities of the disease, which can lead to frustration and insecurity.
Financial impact: Caregiving takes time and may require reduced work hours, impacting family income. Additionally, there are costs for medications, equipment, and therapies.
Mental exhaustion: Constant concern for the patient's well-being and uncertainty about the future can lead to anxiety, depression, and burnout in caregivers.
Taking care of yourself is not selfish, but a necessity in order to be able to support others.
Support groups and other resources for caregivers
Caregivers are essential in the treatment of patients with ataxia, but they also need attention and support to avoid physical and emotional exhaustion and ensure they can continue to perform their role in a healthy and sustainable way. Some strategies include:
Support network: IT'S NOT ALWAYS EASY, but try to share responsibilities with other family members or, if you can, hire professional caregivers to help in shifts, if necessary.
Psychological support: Seek therapy if you can, and join support groups for caregivers, where you can vent among peers, ask questions, and receive guidance from those with more experience (see below).
Self-care: Set aside time for rest, enjoyable activities, and taking care of your physical and mental health. Try to maintain your hobbies , exercise, eat well, and rest when needed. Organize your day so you have some free time just for you. After all, if you get sick too, it won't help anyone.
Information and training : Participate in educational programs about the disease and care techniques to feel more prepared and confident. Read information from ataxia.info and other sources that are applicable to your situation.
Institutional support: When appropriate, seek help from non-governmental organizations, patient associations, or social services that offer resources and support. In the case of ataxias, it is important that the patient be registered with Abahe (Brazilian Association of Hereditary and Acquired Ataxias).
Just as there are support groups for ataxia patients, there are also some groups for emotional support and information exchange for caregivers. Below are some references.
NAF (National Ataxia Foundation) Facebook group
Name: Spouses and Partners of Loved Ones with Ataxia Support Group
Language: English .
Private group for caregivers of people with ataxia.
About: This group is for spouses and partners without Ataxia who have a spouse or partner with Ataxia. This is our spot to learn from one another, vent, have fun, and discuss topics important to us!