It's been a while.....

Hi all, it's been a while since my last blog, and it's been an eventful few weeks especially around my medication.
Those of you who follow me on facebook (Tony Kernow) will know I have had some horrendous reactions/side effects to the increasing doseage of ropinerole.  In short these were intense and sudden nausea, sweats and intense tiredness. That in itself was bad enough, but when one is a full time carer for my young adult daughter it is even more concerning to just go into a deep sleep for a couple of hours and not be aware of what may be happening around me.

However following a meeting with the Parkinson nurse specialist, I felt that what was happening to me was truly understood and my fears and concerns were being valued and understood. She contacted my GP who has been very good, but to be honest I think he is learning on this journey as well and may not have the Parkinsons expertise and understanding as the nurse specialist. This led to me changing my medication routine away from the 3 x daily fast acting pills, to the slow release 1 x daily form of Ropinerole. Having been on this for nearly a week, even though the dose has increased to 8mg, there has been no repitition of the adverse side effects, so I would encourage anyone newly diagnosed to discuss the slow release tablet with their GP and nurse specialist.

While being affected with this neurological condition is the last thing I would wish on myself, it has made me appreciate how well organised Parkinson support is in Cornwall, we have 2 support workers funded by Parkinson UK and 2 nurse specialists and alongside this, there are support groups which meet regularly to support and inform people with parkinsons (PWP). Not everybody will feel ready or need this support network and I don`t feel very comfortable at this stage going to support groups  on a regular basis, but we are all different in our needs and aspirations, and it is comforting to know that one can speak to nurse specialists easily to discuss any medication issues, and indeed any aspect relating to this condition and how it changes and affects our day to day living.

Coming to terms with a long term medical condition is in some ways a very personal journey, but family and friends can play a huge part in this acceptance. What I greatly appreciate are my very close friends who allow me to lead a 'normal' as possible life. There is nothing better for me than simple things like barbeques with special friends and neighbours where we can just enjoy the weather and pass a couple of hours just chatting and not worrying about the future, just enjoying the now and trying not to overcook the sausages!! We have had a couple of those this past couple of weeks and it has been so much appreciated.

Well, it is now 7am and young Gem is up so back to my reality and time to prepare the breakfast porridge!

Take good care of each other

Tony in Cornwall.