Finding My Way

I’m now in my sixth week of taking medication for Parkinson’s Disease (PD).  At first, the realisation that my day would be divided into five hour segments; the time between doses, came as a massive shock. Apart from when I am at work, I hate to be aware of time, let alone governed by it.  It seemed as though God or the Universe was somehow either testing me or just setting out to annoy me!  Nonetheless, I was determined to adapt and do whatever was required to look after my health.

Some Facts for those who Understand PD Medication:

I’m taking the most renowned medication for PD; Levodopa.  This medication reaches my brain (yes, I have one – before anyone jokes!) and enables my brain to create Dopamine; the substance that my brain has ceased making enough of  and which is needed to enable me to move and function well.

For my fellow ‘Parkies’ (as Actor, Author, Activist and fellow PD sufferer Michael J. Fox calls us) who are also taking medication, I’ll add that my medication is Madopar Levodopa and Benserazide 100mg/25mg and a slow release version that I take overnight to help prevent cramping.

After four weeks of taking this medication, I found myself struggling with the transition from feeling the benefit of the medication for the first three hours after taking it, known as being ‘on’, to my symptoms coming back and hitting me hard after three hours and until my next dose at the fifth hour.  This ‘dip’ in wellness is known as being ‘off’.  Each time I experienced the strength of the ‘off’, it was incredibly hard going.

I had a chat with my GP and my Parkinson’s Nurse Specialist, Lizzie, and it was agreed that I would take my medication every four hours; meaning one extra dose per day.  I am incredibly grateful for the lovely and supportive medical team, located both at my GP’s practice and at Ipswich Hospital, here in the beautiful county of Suffolk.  The new dose is helping and I’ve been very lucky not to experience more than an occasional nausea following each dose.

Life with Parkinson’s:

I’ve lived with difficult symptoms for around twenty years; worsening over that time and impacting on my life so significantly.  Until I started this Levodopa medication, which has given me some respite in the form of the ‘on’ times, I had no idea just how massive the impact of the disease had been, for my constant pain and struggling had become my ‘normal’. It was a constant ‘off’ time.  It is now, in the moments of respite, that I feel the full insight and weight of the enormity of what I have been living with for so long.

Adapting to My New Reality:

I am one for wanting to learn about whatever is causing me difficulty.  That way, I feel better equipped and empowered to learn about how to best live my life, adapt and prepare.  I do not look too far ahead, but I do consider the future and aim to prevent unnecessary difficulty.  So, I’ve been reading, watching You Tube videos and just taking in information from any and every source that I can find.  I just bought a book that I would recommend to anyone new to their PD diagnosis, ‘Parkinson’s Disease for Dummies’:

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I find this collection of ‘… for Dummies’ books are wonderfully accessible to anyone new to a particular subject.  I Thought I would make this brief Blog post to make the recommendation for this book. The only thing that could be better would be for the book to have been adapted to describe the UK health system, rather than the American health system.  That said, that one aspect is minimal and does not prevent the reader from making sense of their own path through the NHS and wider UK health services.

If you have any thoughts on this book, or on your own or a loved one’s PD, do feel free to leave a comment below.

 

 

 

 

 

 

 

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