My Sacred Loss

By Jackie Barzely January 2, 2010

I’m no longer allowed those precious moments Of awakening to each new day And for that splinter of time Greeting the morning “Parkinson’s free” Before my body alerts my brain And the daily battle starts again That little window Of hope and sanity now inaccessible to me Once again testing my faith and strength For now leaving me in the lurch And searching for another Fragile branch On the “tree of life” To cling onto.

Chronic disease and grief

Svend Andersen has Parkinson’s disease. Based on his personal experiences and his professional background as a Psychologist he shares his thoughts on the grief that follows having a chronic debilitating disease.

________________________________________ When someone contracts a chronic disease, it is necessary to work with grief. The sense of being healthy and having a well-functioning body is lost, along with a loss of parts of one’s identity – at least for a period – maybe a loss of work role, a loss of possibilities regarding certain activities, and partly a loss of the former role in the family.

The difficulty of acceptance, denial, anger Such losses are not easy to digest and one reacts in different ways, sometimes to the astonishment of others. In the beginning, there can be periods denying being ill. You feel sad, you cry, you want to be hugged and let go of the sorrow. You feel anger. Why me? It is unfair. Some feel anger towards the disease, some against the doctor, who does not provide the help expected. You have feelings of guilt and ask yourself questions like “Was it my own fault that I fell ill?” and “Could I have done something differently?” You are fearful of the future [...] continue the story

My Parkinson’s journey and art

By Anne Atkin March 16, 2010

In 2005, I was diagnosed with Parkinson’s and straight away there was this persistent voice in my head that was saying the same thing over and over, “You’ve got Parkinson’s. You’ve got Parkinson’s”.

So I sat in the neurologist’s room trying to cope with what was happening, still thinking that the diagnosis was wrong. I couldn’t have Parkinson’s. That was something elderly people got, elderly people who shook a lot and I didn’t shake. The diagnosis must be wrong. My frozen shoulder was just that, a frozen shoulder. Admittedly I had had it for years but maybe mine was stubborn. As for the other symptoms – the weakness on my left side, the drooling, the pins and needles, the fatigue, the aches and pains – there was a perfectly logical explanation. “it’s menopause, it’s because I’m middle-aged, it’s anything but Parkinson’s.” I was scared and as far I was concerned, this was the end of my life as I knew it. All my plans had just flown out of the window.

But the voice in my head knew what it was talking about. I did have Parkinson’s. The twenty eight 11 year olds in my [...] continue the story

Budapest buffet

For the next six days, I shall take the stage – with my Parkinson’s – at Hotel Ibis in Budapest. My performance is played out in the grand dining hall during the daily breakfast buffet, immediately after the tourist buses have picked up the larger groups at around eight o’clock – leaving me with a handy audience, the smaller the better.

Breakfast buffet is a complicated ritual also in Hungary. What it takes – apart from steady hands – is a sense of order, even a sense of colour and form; an ability to match portions with hunger; prepared to improvise; with a minimum of technical understanding. Personally, all I want from breakfast is to get through it quickly and quietly, like a man of the world would do. Turning it into a performance wasn’t my idea, but Parkinson’s.

“Room 905!” Its premiere day and I report at the entrance to a young lady wearing a yellow T-shirt. The dining room, still well-filled, is neither remarkable for its decoration nor for its coziness. There are at least a hundred tables, the smallest seating four people. The breakfast buffet – sufficient to keep you going for the rest of the day – has [...] continue the story

My window of opportunity

By Laura Lewis November 7, 2011

One Saturday in the summer, my husband and I visited a museum in London where there was a range of impressive coats of armour. While we were admiring the condition of these medieval battle-dresses, it occurred to me how wearing a coat of armour must be hard work and similar to my daily experiences when I am “off”. I explained that walking while being “off” (or parky) felt like stumbling through tar on the deck of a cross-channel ferry in a force nine gale wearing a coat of armour. He found that staggering.

“Wearing off” is not entirely predictable, but usually occurs between three and four hours after taking medication. I have a 20-minute warning then gradually the symptoms of Parkinson’s disease (PD) creep over me like a vice slowly gripping my shoulders and then working their way down my back. For me, the most exasperating aspect of “wearing off” is being unable to manipulate things; I cannot write, operate my laptop keyboard or manage the simplest tasks like buttoning blouses or cleaning my teeth. It also affects my voice which becomes quieter and my speech less articulate. However, “wearing off” is not inevitable and I [...] continue the story