The New Year

The New Year

The Parkinson’s Family does not go on holidays!!

I have been told on a number of occasions over Christmas to take a break away from Parkinson’s and enjoy the holidays. Well I have to say that I really enjoyed the break and apart from a bit of planning for 2013 and catching up on email, I have taken time out.

Unfortunately the management of Parkinson’s does not know that it is Christmas and does not take a break, so when well meaning people tell me to not be so strict on myself over Christmas, I have to remember that it is our job to raise awareness about Parkinson’s and understanding so that those who do not have Parkinson’s can understand that we cannot afford to take a day off. If I spent the last week or so eating the wrong foods, doing no exercise or getting stressed out, I know that my medication would not work and for me that means I would have severe difficulty walking.


One of my most amazing experiences this year was attending and speaking at the Cure Parkinson’s Trust meeting in October in the Royal College of Medicine in London, which also afforded me time to catch up with Tom Isaacs and his wife Lindsey, who today are two of my wonderful friends. People with Parkinson’s can support and encourage each other and give great hope and positivity and when supported by their families and many others they can become extraordinary people with so much to give. I had one of those “ah ha” moments that day in the Royal College of Medicine after listening to the phenomenal work that Tom and everyone are doing in relation to research. I have always said Parkinson’s is a designer disease and it is unique to us all but it’s also like a cross breed of a dog!

1. We have to manage it like Diabetes. We have to take our medication on time, watch what we eat and watch what we drink to name but a few things. We have to manage it on a daily basis, so much so that I often call it the micro managing syndrome.
2. We have to cope with it like any brain injury and keep exercising and finding ways to change and support the brain, so that we can keep ahead of the progression of the condition.


3. We have to acknowledge the emotional effects of the condition and manage our mental health on a daily basis. For some the challenge of the side effects of the medication has caused impulsive and obsessive behavioural problems, which are incredibly debilitating and challenging for the person and their families.


4. We have to be aware our eating habits and like a person with food intolerances, we need to understand our bodies and to quote Hippocrates “Let food be thy medicine and medicine be thy food” In other words, understanding what you are feeding your body in my own experience has a huge part to play in the management of my condition.

5. We have to manage our stress levels as this can affect our mobility, mood and our own attitude towards having Parkinson’s.

So, when I read back over the above five points, it’s easy for me to accept that many people do not realise the complexity of the condition and how we have to manage each and every symptom collectively known as “Parkinson’s”.
The outcome from that day in London as I see it has got to be empowerment by education but keep it simple so we don’t feel overwhelmed. Awareness rising from what our needs are, is how we can expect the health care profession to understand and support us. Support for the carers in the community who do a fantastic job and they themselves need to be acknowledged and supported and self management education available for all so that we can understand the choices available.
One of the tools we developed this year was our Five Elements Brochure and details of the Five Elements can be viewed at http://www.move4parkinsons.blogspot.ie/p/five-elements.html
So we are looking forward with hope and positivity to 2013. We would suggest and encourage anyone, that if it is within your means, to consider making the journey to attend the World Parkinson’s Congress in Montreal in October 2013. Please see http://www.worldpdcongress.org/ for more details.

So to everyone, may I wish you all a very Happy New Year from all of us at Move4Parkinson’s and may we look forward to an exciting 2013 together! It has been a privilege to have met so many amazing people on this extraordinary journey so far, destination unknown with a one way ticket and no stops!!
Mags

ps: If you have already made New Years resolutions or plans to better manage your Parkinson’s please always seek the advice of your neurologist / Parkinson’s nurse first.

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