Thank you for your time reading this post.

In 2023 at the age of 52 I was diagnosed with Parkinson’s disease, my diagnosis was somewhat delayed as symptoms were coinciding with the hip replacement that I had in 2022, so a lot of my symptoms were mistaken for side effects of my hip problem. These symptoms were stiffness, dragging foot, slow body movements, weakness and fatigue.

Fortunately a vigilant physician noticed that these symptoms were not related to the hip issue and started the process of my diagnosis.  I had an MRI which showed white spots (lesions) on my brain and when I tried the Parkinson’s drug, I had a remarkable improvement in my motor functions and mental well being.

Parkinson’s disease is hard to diagnose as there is no simple test that can be done and sometimes it can take years, with symptoms being labelled as something else.  For instance a friend I met through Parkinson’s boxing was misdiagnosed for seven years as having a mental disorder/hypochondria where in fact it was Parkinson’s disease causing her anxiety and tremors and once she received the Parkinson’s medication her anxiety and tremors were greatly reduced.

What is known about Parkinson’s disease is that the dopamine producing brain cells start dying (showing as lesions in the brain) and you can not reproduce these cells.  Dopamine is that feel good chemical produced in the brain, without it a person experiences a range of symptoms, tremor is the most well known (I do not experience this symptom unless I really over do it), constipation, body pain, stiffness, apathy, fatigue, anxiety and a multitude of other symptoms.

There is not one definite reason why the dopamine producing cells die, but one of the things that is suggested is toxin exposure.  This could possibly be the reason why I have Parkinson’s as I grew up living next to crop fields where the chemical ‘Paraquat’ was sprayed as a herbicide which has been linked to Parkinson’s disease.  I can trace my earliest Parkinson’s symptoms of constipation back to when I was a child.   Paraquat is now banned in 60 countries but as of 2026 is still widely used on food crops in the USA, Australia with some restrictions, South Africa and some developing countries.

One of the debilitating conditions of Parkinson’s for me is apathy and fatigue which does not allow me to do long days anymore of needlework designing, stitching, writing instructions, making kits, teaching and doing website orders, which I really enjoyed doing.  Now a working day is a 1/3rd or less of what I used to be able to do and it’s hard to multitask.

It has been recorded that within 5 years of the diagnosis of Parkinson’s disease most people will have to give up work or reduce work significantly as it is not physically and mentally possible to continue as one did before.  Unfortunately I am one of the statistics.  I really want to do all that I used to, but I can’t, my body won’t let me, if I try my body gets very painful and fatigued.  It is an unfair disease as a person with Parkinson’s disease works less hours but pays more in medical bills and assistance, which makes it a huge struggle for some people to cover life’s essentials.

The Parkinson’s drug Levodopa Carbidopa is a commonly used drug that artificially replaces the lost dopamine in the brain.  It has its side effects, if I take too much I get dyskinesia (involuntarily body movements).  There are times between doses called ‘off times’ when it is hard to function.  It has taken me several years to find a good balance and it will always be an ongoing experiment with the amount and timing of the drug as the disease is progressive.  I am now also on a dopamine agonist which helps level out my Levodopa medication and makes it last longer and it has taken away some of my apathy, which I am very happy about as now I am really excited about designing and stitching again and doing more scent training with my dogs.

In March I rediscovered peyote beading and have been on a designing and stitching flurry ever since.  The technique pushes my imagination and is fun to do and completing a piece is very rewarding.  I recommend the technique for everyone for keeping one’s fine motor skills and mind sharp.

I have designed an absolute beginners kit/pattern in beading which will give people a taste of the beading technique and will raise some money for Parkinson’s research. The kit will make a great gift for anyone who likes to try crafts and is suitable for people aged 16+  The finished beading will make a lovely personalized gift to give to someone who has Parkinson’s disease to let them know you are thinking about them.

‘Tiny Tulip’ Kit or Pattern

Parkinson’s disease is one of the fastest growing neurological diseases and although I am not optimistic for a cure, I am hopeful that Parkinson’s research will uncover the reasons why people are getting Parkinson’s disease and announce globally the reasons and how we can prevent it, to help future generations.

Please share this post with all your family and friends and social media. I hope to raise awareness of this disease and the symptoms and get as much exposure as possible for the fundraising kit and pattern, it is hard to spread the word on my own, it takes a community to raise awareness.

Personally at this point in my journey of Parkinson’s disease, I am happy and doing things that I love.  I keep fit with boxing and walking the dogs.  I know there is the option for the levodopa pump and deep brain stimulation when my symptoms get worse and I keep myself updated for the latest treatments through some excellent Podcasts: The Michael J Fox Parkinson’s Foundation, Movers and Shakers, Two Peas in a Pod, No Silver Bullet.

Thank you for being a part of my life’s journey by reading this post.

Tanja Berlin

Quincy and Leif – the fluffies