For the last ten years the structure of my day has been dictated by my busy bowels. I've always had a speedy metabolism, but these days my innards conduct themselves like an Olympic bobsleigh team. My daily schedule is controlled by my petulant paunch, and it's become necessary to assess every journey/task and appoint a risk factor.
As Parkinson's (or any serious illness) progresses, it's easy to lose one's self confidence. When I was first diagnosed I immediately came across several people who had been living with Parkinson's for some years and therefore had already experienced many of the stages and symptoms that occur as the disease advances.
One Sunday one of our merry band was having his regular bedside Mass with his priest and his Mum, when the priest asked us all to join with them. When we all refused the way the priest replied to us has stuck with me throughout my life. "Well if you don't believe then you deserve to be sick. God is punishing you all for your lack of faith".
Patients who suffer any chronic, degenerative condition, should be seen on a regular basis by the same doctor, thus ensuring an on-going picture whereby the best care can be given. I think it must be incredibly difficult to continually show compassion towards a patient, whilst for self preservation keep a certain distance not allowing emotions to engulf and cloud the issue.
Sadly many spouses or partners faced suddenly with the realisation that their loved one has been diagnosed with Parkinson's, bolt for the door. Unfortunately statistics show that women are more likely to stick around due to our maternal nurturing instincts. Sorry guys, no disrespect meant to the male population, this is simply fact.
"EDS is considered a rare disease...and it is incredibly discouraging when no one has ever heard of it, when you have to spell it for your doctor and watch him Google it to find out how to treat you, when no one you know has it, and you are forever the weird one. It makes for a very challenging, lonely journey."
So although like most people, I have a "bucket list" I decided being optimistic at heart, I would need to call my wish list something else that was more appropriate, and so I have a "Pink List". Why a "Pink List" you may well ask? Well if you are sitting comfortably then I'll tell you why pink became significant to me.
There are many simple ideas and tips that I have picked up along the way from fellow sufferers, or have discovered by trial and error at home, and I'd like to share some of these with you. Anything that can improve your quality of life and maintain your independence to some degree has to be a good thing.
A person suffering from a chronic disease or some form of disability, needs intimacy with their spouse or partner as much as anyone else. Being intimate brings a closeness to a couple and is a necessary part of a healthy relationship. Many patients, too embarrassed to talk about these matters, can end up suffering from a lack of affection and tenderness which is essential to us all.
Only disabled and chronically ill persons along with their families, know and understand first hand, how difficult life can be. Financial burden is an issue not often mentioned, since no one wants to admit openly the hardship that frequently goes hand in hand when a person is unable to work due to health reasons.
Knowing when to offer help, lending a hand, and realising when to step back and allow a disabled person the dignity of managing by themselves is a fine line and not easy to judge. It is also difficult for the sufferer, as I'm a classic case of someone who hates asking for help, but in my present condition, many times I cannot perform a task, which is frustrating beyond belief.