The truth about Parkinson’s progression

I have Parkinson’s and I know that it’s a progressive condition which means that it will get worse over time. But knowing something and experiencing it are two very different things…

My Parkinson’s has been relatively stable for the last few years. For that I am very grateful. But my Parkinson’s has now progressed – not dramatically, but enough that it has really affected my quality of life over the last few months, and living with Parkinson’s has become more of a struggle for me on a daily basis.

Here are some of the things that I’ve been struggling with:

I’m tired, not just tired … exhausted – pretty much all the time – regardless of whether I have slept well or badly, or have been overdoing it or resting. My Parkinson’s Nurse explained that the tiredness could be caused by Parkinson’s, being over-medicated or being under-medicated.

I’ve also been feeling weary. Weary from constantly struggling with everyday tasks and weary from feeling like I am constantly having to ask for help. Although I have to say I am very grateful for people in my life who are always there for me and help me in so many ways. Big thanks to those very special people.

I’ve shared in previous blogs how my medication cycle works with peaks and troughs throughout each day. Up until early this year a ‘trough’ would mean I would struggle a bit when carrying out everyday tasks (such as making tea, typing, washing my hair, cutting up my dinner – the list goes on) but would only be really bad occasionally. For me, ‘really bad’ is when I can barely move my right hand and arm – so at these times I struggle a lot with any everyday tasks. Rather than just occasionally, I’ve been experiencing these ‘really bad’ times – which last well over an hour – three or four times a day, every day. Which is why I was constantly really struggling with simple everyday tasks and constantly asking for help.

Consequently, it started to affect my mental health too in various ways… I’ve been feeling completely overwhelmed by things that I would usually cope better with. For example, a particular project at work has been more challenging than usual this year. On several occasions, I found myself being unable to focus, feeling unable to cope and physically struggling with simple tasks. Thank you very much to my all friends and colleagues at work who helped me through this project #teamwork

I’ve been adjusting my medications with expert help, advice and support from my brilliant Parkinson’s Nurse Specialist. I honestly don’t know how I would be able to manage my condition without her. Huge thank you to my Parkinson’s Nurse. On that note, I am so very grateful to have access to a Nurse Specialist. From personal experience, I think everyone with Parkinson’s should have access to a Parkinson’s Nurse.

Adjusting Parkinson’s medication is a gradual process of trying different options. It can also be a frustrating process sometimes making symptoms and side effects worse before you find the best combination of medication that works for you.

I’ve now added a fourth type of Parkinson’s medication to my regime. While I still need to gradually increase the dosage of this medication, I am glad to say that it does seem to be helping. I am hopeful that within a month or so, I will be on a combination of medications which allows me to carry out everyday tasks more easily throughout the day – therefore giving me a better quality of life.

I’m very grateful that over the last week since starting this medication, I have started to feel like myself again. It’s such a relief because quite honestly, I was feeling pretty low. While I am still tired all the time and struggling with some symptoms, I feel like I have turned a corner mentally and I can see light at the end of the tunnel.

I hope my Parkinson’s will now stay stable for a while, but the truth is, for me and the millions of others with Parkinson’s worldwide, our condition is progressive. And there is currently no cure for Parkinson’s, nor are there any treatments which stop the progression of this disease.

However, there are many organisations and people worldwide working to find better treatments for Parkinson’s and hopefully one day, a cure. Parkinson’s UK is one of these organisations. Next month, my friends and I are taking part in a walk for Parkinson’s to support the work of Parkinson’s UK. If you would like to sponsor us, please click here for our fundraising page.

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