*The translation of this article in French and Portuguese has been made through machine translation and has not been edited yet. we apologise for any inaccuracies.
Neurological conditions such as dementia, multiple sclerosis (MS), and attention deficit hyperactivity disorder (ADHD) affect the brain, spine, and nervous system and can therefore affect the way you think, feel, and interact with the world.
Over the past 30 years, the number of deaths due to neurological disorders has increased by almost 40%, and this number continues to increase with advances in diagnosis. It is estimated that one in three people is affected by a neurological disease at some point in their life,* which means that in every home, and in every company, there are people either living with a neurological condition or who will develop one later in life.
Every year, a global campaign called Brain Awareness Week is held to raise awareness about neurological conditions with the aim of bringing attention to the importance of brain research. In an effort to take part in Brain Awareness Week, we asked some of our M3 Global Research employees to share their own experiences with neurological conditions.
In his adult life, Carles discovered that he had ADHD, and shares his experience with diagnosis and following treatment protocols. Hedy shares the life-changing event of becoming her mum’s full-time caregiver, after she had a brain aneurysm and was diagnosed with vascular dementia.
Getting Diagnosed with ADHD at Thirty-Three
ADHD is one of the most common neurodevelopment disorders seen in childhood, which affects people’s behaviour. It tends to be noticed at an early stage, however, there are now more adults being tested for and diagnosed with ADHD.
Carles Roig-Salvador, Associate Director of Qualitative Research, shares his story.
How did you discover that you had ADHD?
I used to find it difficult to concentrate and work on many things at the same time. I felt that something was off, and I wasn’t sure what it was. It led me to depressive phases throughout my life. I was once researching ADHD for market research purposes, and I found an online test that highlighted common symptoms and I found that I had many of them. In my nearest hospital, there was a clinical trial in which I took part regarding drugs for ADHD in undiagnosed adults. The first phase of the study was to diagnose me and that is when I finally got diagnosed.
How old were you when you were diagnosed with ADHD?
I started the process when I was thirty-one and that is when the journey started with the GP and psychologist. I received the proper diagnosis when I was thirty-three. For the first four years, I was constantly on medication which I found extremely useful, and it changed my life, but I realised I didn’t want to depend on it. As a result, I decided to look at alternative options and slowly started lowering my dosage over the years. I am now forty-three and haven’t been on any medication in the last four and a half years.
How is ADHD diagnosed in adults?
ADHD is very difficult to diagnose in adults as it is considered a childhood mental health condition. It is genetic and there is a degree of inheriting it from ancestors. In order to be diagnosed, there needs to be confirmation of your behaviour as a child. It took me about two to three years for me to be diagnosed. At first, they talked about the possibility of depression and referred me to a psychologist for CBT (cognitive behavioural therapy).
How did the diagnosis change your life?
I knew what was happening and I was therefore able to start building tools to learn and help to control it. I started learning about myself and the condition, and the medication really helped me as well, as it was a process of self-learning.
How does having ADHD affect your day-to-day life?
Before, in phases, I was unable to listen actively which is something I’m happy I can now do. I wasn’t able to cope well at work under pressure or deal with certain people and situations. From a physical point of view, it was very difficult to spend many hours sitting still and I found it difficult to structure my day. However, now I feel that I am more organised, and I am coping better under pressure.
How do you test for ADHD?
It is difficult to find a doctor who wants to test you because it’s still a bit controversial for a neurologist on whether ADHD exists among adults or not. Paying for the test through private healthcare is one option or going to associations who can indicate the next best steps.
How did meditation help you to manage your ADHD?
I decided to give up medication and took up meditation, which was extremely useful. I went to a silent retirement for 10 days and that is when I started decreasing my dosage of the treatment. One of the beautiful things about applying meditation to many mental health issues is that it helps you to objectivise what is happening. There are certain ideas and thoughts that may make you anxious, but meditation allows you to observe the ideas and decide whether to engage with them or not.
What are some ADHD coping skills?
I’ve found that taking notes on everything helps me to organise my thoughts. Sharing with people how to help with certain tasks, meditation, and highlighting that it gets easier to manage with age. Employers have also been super positive with respect to the condition, and I would therefore advise you to explain your weaknesses and strengths in any work situation. It is important to understand that it’s okay.
What advice would you give to parents of children with ADHD
The main thing is to be diagnosed as soon as possible. ADHD is a condition that can be hard to label, so being diagnosed is crucial. I would also advise parents to understand that it may seem like a problem, but with the correct education and approach it can be a strength. It changed my outlook and perception of things.
Caring for Someone with Vascular Dementia
Caring for someone with a neurological condition, whether a child, spouse, or parent, can be challenging. Unlike ADHD, which is commonly seen among children, dementia tends to affect the elderly. Dementia is the loss of cognitive function to such an extent that it affects a person’s daily life and activities. Alzheimer’s disease is the most common form of dementia and vascular dementia is the third most common, found in about 20% of dementia cases. Vascular dementia is caused by reduced blood flow to the brain, and it tends to get worse over time, though it’s possible to sometimes slow the progression.
Hedy, Project Coordination Manager, shares her story as a caregiver for her mum.
Do you want to start by giving us a quick introduction about yourself and your story?
My name is Hedy, and eight years ago, my mom suffered a brain bleed out of the blue. She was a very healthy individual, who didn’t smoke or drink. My mum complained one day that she had a bad headache and went to the hospital. The doctors informed us that she had a brain aneurysm. She then suffered from vasospasms, which are seizures that you can’t see in the brain. She was put on epilepsy medication and after losing a lot of blood in her brain, she had a stroke. She was in an induced coma and came out a completely different person, as she was affected in her frontal lobe and her whole personality changed. We then went through therapy to help her walk and use her right arm, but the mobility never came back completely.
Are brain aneurysms hereditary?
We learned only at the hospital that brain aneurysms are hereditary. My grandfather and my aunt had also suffered from a brain aneurysm. My siblings and I went for a brain MRI where they went into the femoral artery to look at the brain.
How has it impacted you being the main caregiver for your mum?
It was a life-changing event for me as I was living in a different state and had to leave the city to become my mum’s main caregiver for eight years and never returned. I moved in with her, but we eventually had to place her in a personal care facility where she is living now. I had power of attorney and sorted her bills and bedside commode. It threw me into being a nurse as I did everything for her. I made it work and started working part-time for M3 Global Research, but my mum’s personality started to change. She started getting irritated and agitated easily and became more aggressive. It was then that we found out that she was developing vascular dementia.
Is it common for people who have experienced cognitive damage to develop vascular dementia?
Doctors informed us that it is common for people who have gone through that much cognitive damage to develop vascular dementia. Her memory is all intact, but dementia has affected her behaviour and her personality, not her rational decisions.
What are some of the symptoms most likely to be seen in vascular dementia?
One of the main symptoms is apathy, which includes a lack of interest and enthusiasm. Some of the symptoms are similar to depression, and sometimes anxiety and depression medication is prescribed, but it won’t treat that part of the brain that has died. A lot of people lose their speech. It is different from other types of dementia as it hasn’t affected my mum’s memory.
What is caregiver burnout?
Caregiver burnout is real, and it affected me for years. No one takes it seriously and there is not a lot of support and help with health insurance. It is an unpaid job as you are putting all your time and effort into taking care of that person. It has been really challenging, but luckily, I had a good support system.
Do you have any advice for loved ones who may be dealing with neurological conditions?
If you’re going to take on caregiving for someone, ask for help and make a schedule. Give yourself breaks and have someone else stay with them whilst you look after yourself. You will burn out and you can’t do it all by yourself. Be patient with yourself and the person you are taking care of as it’s such a huge change. Advocate for that person. Whatever it is – learn about the condition and learn as much as you can so you can talk to doctors and nurses and advocate.
Editor’s note: Thank you Carles and Hedy for sharing your meaningful stories which may inspire others in similar situations to trust themselves and ask for support whenever needed. To investigate, seek out medical advice, keep yourself informed, and make sure to take time to recover is absolutely crucial. Your stories teach us that although it can be extremely challenging to live, or care for someone, with a neurological condition, it is possible to thrive.
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2 comments
Thank you for addressing care giver burnout and advice for loved ones dealing with neurologic conditions. I’m in the process of dealing with my spouse who was diagnosed with Parkinson’s about 18 months ago. She has been taking medications but the condition has progressed. Can someone recommend an educational source around caring for someone with Parkinson’s?
We understand family caregivers have an important role in the treatment journey of their loved ones and it can be difficult to find support for caregiver concerns.
Recently we have partnered with a resourceful affiliate on this topic. Our affiliate, Elizabeth Miller of Happy Healthy Caregiver offers support and resources for caregivers that you may find helpful, we recommend you check out her website here:
https://happyhealthycaregiver.com/resources-for-family-caregivers/