If I wasn't this unwell, I probably wouldn't have done any of the things that I have done since I was eighteen. If I was well enough to have gone to drama school in New York when I wanted to, I would have. Instead, I have had to constantly find new paths to follow that are right for me at any given time. And they have changed so many times.
Generally people don't want to hang around anyone chronically ill, and I can't say I blame them. I do understand, for someone in a poor state of health has limitations when it comes to socializing, which admittedly causes difficulty in maintaining friendships. Once diagnosed with a degenerative disease, life is never quite the same again.
Most of us living with Parkinson's disease are on a cocktail of pills we ritually take each day. We can try to help maintain the dopamine levels to some degree by eating the right foods. A well balanced diet alone cannot of course replace Parkinson's medications, but ensures they work at an optimal level.
It is known that acceptance of long-term chronic illness is seen as a substantial problem in patients with chronic illnesses. Absence of acceptance can lead to clinical improvements being delayed considerably. It can also lead to poorer adherence to the current and ongoing medical treatment. They may be branded and judged by others as being in denial.
The on-line Parkinson's community is a great way of connecting through the Internet with others in the same boat. I was truly touched by a new contact I made with a fellow Parkinson's sufferer. My article this week is about an ordinary Joe, just like you and me, except his name is Kendall Lay and he is far from ordinary.
I am typing this article in bed, on my laptop which has been precariously propped up, barely able to see the keys, I am determined to finish this piece. You may be wondering what on earth I've been up to. Sorry to disappoint you, but it doesn't take much to injure myself, and I wish I had an exciting fascinating tale to relate, but the truth of the matter is sadly quite pathetic.
I'm now on a plant based, gluten free, sugar free, high nutrient, anti-inflammatory, juice infused, smoothie obsessed, rotation diet. I very rarely eat anything out of a packet (even if it fulfils my diet criteria), and I spend most of my daily energy on preparing my food. I have slip ups (it's normal when you make such dramatic changes), but I know that what I'm doing is right for my body.
The government should take this opportunity to think very carefully about whether the WCA is the right assessment to continue with. At the very least they shouldn't bind the next government to lengthy contracts for delivering WCAs if that will hinder the opportunity to give the WCA the massive overhaul, even total replacement, that it very much needs.
So, today, on Rare Disease Day, I'd like to take the opportunity to share some quick things that millennials (ugh) living through their teens and twenties with chronic illnesses will know. I hope that this will serve to help people be more understanding and aware of what they can do to support their friends and loved ones who fight every day for their health.
My dog has a face only a mother could love, she incessantly drools, snores loudly and smells (so I've been told). Due to Parkinson's I have no sense of smell, so it doesn't bother me! We have become inseparable and together 24/7 for over eight years; family and friends now know and accept, "Love me, love my dog"!
Three chronic illnesses that left me bed bound, feeling more ill than I had ever done in my life, and more and more depressed (which certainly didn't help the situation). I spent hours trawling the internet and asking people online how they were able to live 'normal' lives. That's all I wanted. I had had to give up jobs that I loved...
My worst nightmare is becoming a burden to my family, which I'm sure is in the back of many people's minds. No one wants to put loved ones through such difficulties and heartbreak. Why is it the people we love the most seem to be the ones who end up suffering? I am painfully aware my family, despite their smiles and good humour, encounter strains and difficulties due to my ill health.
When people ask me "How are you?" I have to think twice, not because I don't know, but often am not sure what they want to hear. Some ask out of common courtesy, simply being polite, but would rather I answer "I'm fine thank you" than hear a long account; perish the thought of hearing the truth and understanding the full picture of living with chronic disease.