When I was diagnosed with young-onset Parkinson’s at age 39 my doctor told me not to tell anyone, especially my employer. The doctor’s main interest was to manage my symptoms to the extent that no one would notice, and that by doing so, he would prevent me from experiencing the social stigma of having a degenerative neurological condition. However, this created an enormous stigma within me and put a huge mental burden on me as I kept the diagnosis hidden for ten years. And I had to carry that burden alongside the challenges of managing the condition itself.

Access to treatment is a lifesaver to me and allows me to be a lot more active than I otherwise would. However, when I go to the doctor their main focus is on the motor symptoms. I tell them which motor symptoms have deteriorated and they adjust my medication. But there is never a conversation about what it is like managing a condition that by its nature gets increasingly difficult to manage. For example, an environment that is easy and safe to navigate when my motor symptoms are controlled, becomes very stressful and dangerous when they are not controlled.

This makes the episodic nature of Parkinson’s extremely stressful. The motor symptoms are only controlled for as long as the medications are working and there are a lot of factors, including stress, that have an impact on how long and how well those medications work. This results in an ever increasing ‘shrinking world’ as I start to avoid or am unable to be in certain environments and situations. It also has a huge impact on my employment. I already lost one job as I was struggling and my employer was not prepared to accommodate me.

It is also extremely important to increase and improve research into brain health, into young-onset Parkinson’s and especially into women and brain health. I quickly noticed a significant change in my symptoms and the effectiveness of my medications that coincided with my menstrual cycle. However, when I told my male doctor this, he dismissed it, because there wasn’t any research and there still isn’t a lot of research into this.

Disability assessments are rigid and unable to accommodate the episodic nature of neurological conditions. I was only granted 33% disability status based on my current symptoms. If I were a wheelchair user I would get a lot more. I am fine a third of the day, but not the other two thirds of the day. Yet, I am only assessed based on the good one third and receive no support for the other two-thirds of the time where I am really struggling. The episodic nature of many degenerative neurological conditions simultaneously creates huge barriers to employment while also reducing how severe your disability is considered to be, reducing the amount of support that is available to you.

Parkinson’s isn’t just about the patient, it impacts everyone around you.