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.
Parkinson's can affect anyone - it's not fussy, and doesn't discriminate, no matter whether you're old or young. I was diagnosed with Parkinson's at age 44, which at the time, I thought was very young. However since then I have met many other sufferers, some of whom have been diagnosed shockingly at a much younger age.
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.
Let's be brutally honest; becoming a caregiver is without doubt a job nobody in their right mind asks for, wants or expects. Suddenly a person can find themselves in the position of having to take care of an ageing parent or spouse. The hours are long; constant tiresome challenges, no vacation, it is a 24/7 job.
The growing number of young people being diagnosed every day with Young Onset Parkinson's is astonishing. I was diagnosed at age 44 and at the time I thought this was very young, but since then I've been in contact with many fellow sufferers, some of whom were diagnosed in their twenties! Suddenly 44 doesn't sound so young!