Name: Snehal Amembal

Age and year of diagnosis: 36 (2021)

Occupation: Writer and Poet

How did you find the portrait experience?

It was really a very good experience. It was good to connect with another person who has Parkinson’s and just having a chat – a very informal kind of experience. I wanted to show my tulip tattoo, which is the symbol of Parkinson’s. That’s important to me.

Tell me more about yourself

I am a writer and poet and I have published about three books – my fourth one is coming out in December. I’m originally from India, but UK is home. I was a human resources manager for about nine years before I switched to writing full time.”

How does writing fit with your Parkinson’s?

Writing helps me cope with the condition. It gives me perspective on life. I write a lot of poetry surrounding everyday moments and experiences. I write when I need to and when I can. I actually wrote an acrostic about Parkinson’s:-

Perpetually fighting this
Amorphous condition 
Rarely without courage and conviction 
Knowing fully well that the 
Idiosyncrasies of your body are 
Not in your control 
So you do your best to survive the 
Oncoming waves of uncertainty 
Never giving up 
Solid, stubborn, strength

Can you tell me about your experience of diagnosis?

It took me around three years to be diagnosed formally. My first symptoms started when my older child was just about a year old. At first, the GP thought it could be carpal tunnel syndrome, and I saw four specialists. I even had surgery. But it obviously didn’t help my symptoms. I then went through three years of uncertainty which was getting a bit too much to deal with. At the diagnosis, in a way I was happy because I knew what was wrong at least. I think nobody wanted to really accept the fact that Parkinson’s can happen to a young person of South Asian origin and to a woman, which is why my symptoms were looked at in silos. Nobody bothered to look at it from a holistic point of view.”

What practical advice for people who struggle to get a diagnosis?

We need to have trust in the doctors and the professionals. Unfortunately, there’s a lack of education around Parkinson’s, especially at the GP level. People aren’t able to say ‘I’m out of my depth, let me find some senior help.’

Tell me about Parkinson’s in your day-to-day life.

I need to plan everything around meds and I am very meticulous about medication. I always take the medication on time. I exercise a lot, so I think it’s a huge part of my routine, using the exercise bike that I have at home and doing a daily dance class on zoom. I managed to reverse two of my symptoms, and I think it was probably the exercise that was able to do that. I write a lot as well. 

I do overthink, but I turn to music a lot too. I have a playlist for really bad days and music really helps me calm down. I also read research on and off, and on bad days I always look at research to give me hope. I work very closely with Parkinson’s UK. I felt the need to contribute because in the South Asian community there is much less awareness. For example, I help with the BAME support group. My duties include setting the agenda and getting in people to talk – we’ve had nutritionist, a physio and so on.

How has Parkinson’s affected your family life and parenting?

I have two young kids, who have grown up with me having Parkinson’s. They are very versatile boys and very empathetic and they have adapted so well. They know my symptoms and can tell when I’m off and on. They can understand that sometimes I need a rest, but that once I’m taking medication, I’m completely okay again. My husband has been my greatest support and he pre-empts a lot of things. For example, when he’s booking holidays, he looks at my medication timings.”

What final advice would you give to others with YOPD?

You just have to keep moving and keep going. Try not to go into that zone of self-pity and work with what you have. Take your medication on time and do your exercises and manage your diet. You need to seek out your own happiness, create your own life. Nobody has the exact same experience as you, so take control of your own life.”

More from Snehal

PapaMa’s Portrait by Snehal Amembal

Snehal Amembal Linktree

Sneha; Amembal Substack