The other night we had the most wonderful evening with
good friends who had invited a charming couple we'd met once before. The husband
and I share much in common; yes you've guessed correctly - we both live with
Parkinson's. We naturally compared symptoms and medications, which must have
bored the pants off the other guests, but when a Parkinson's patient meets
another, these questions are almost mandatory, feeling akin and understanding
one another is of great comfort. Like many of us, I found that this gentleman
suffers from insomnia. Most who endure this irritating, not to mention
debilitating symptom, find something of interest to do with these hours in the
middle of the night, when we'd rather be tucked up snugly in our beds blissfully
asleep in the land of sweet dreams.
I write in the middle of the night, and sometimes my
best writing is done in the wee hours of the morning. I discovered that this
gentleman bakes in the middle of the night, and after tasting his ginger
biscuits that were divine, (one biscuit was simply not enough!) he has become
quite the baker. His wife often wakes in the morning to the delightful smell of
freshly made home baked goods, maybe some midnight muffins; how great is that? Although
his wife protests at the calorie filled goodies one could do without, it's hard
to refuse tempting treats that have been whisked up in the night. In my eyes, she
was a vision of beauty and need not worry of an extra pound or two. The warmth
and love they exude clearly demonstrate how a husband and wife can battle
Parkinson's together and prevail the difficulties they incur along the way.
Sitting on my other side was a gentleman from
Australia, and after he heard a little of what I have been doing for the last
few years, he asked if he said something of interest, would he end up finding himself in my blog?
Well - the answer is "Yes". He asked me a very pertinent question,
"Do I receive payment for articles I've written for The Huffington Post or
other newspapers or magazines?" The answer is "No". I don't get
paid for any articles and my public speaking is done voluntarily, although if
far away, or abroad then travelling expenses are covered. He then went on to
ask if I make any money from my website and blogging, to which I again said
"No". I've had companies in the past asking if they could pay to
advertise their various products on my website, and although they have mostly
been related to ill health or disability in some way, I have keep a strict
policy of not accepting any, for I don't want my website smothered in adverts.
The only recompense I receive is if someone buys my books, but after Amazon
handling fees and taxes have been deducted, this small amount is enough to buy
a cup of coffee! Of course I would be thrilled to sell more books, and the modest
income would no doubt be of great help, but I'm not running a business or an
advertising campaign. My main objective is to offer support and reach out to
fellow sufferers, caregivers and doctors in the field, along with bringing
greater awareness as an advocate of Gaucher and Parkinson's.
Elaine. It was a pleasure to meet you last Thursday. I received the link to you blog via M and I just read your discourse. It wasHi so nice that you referred to me as a "gentleman"! I enjoyed our conversation the other evening even though you may at the time have been a little preoccupied with thoughts of imagined baking aromas. I hope that my comments about the commerciality of your blog were not perceived by you as too crass. However it is not for the "money" as such but only what that resource can do for your cause. Thanks to you I now know much more about Parkinson's. You may recall our conversation wandered to one of my sons who has suffered with type 1 Diabetes for 18 years, Diabetes like Parkinson's is not necessarily a death sentence, but certainly a life sentence! Kol Hakovod for your dedication!
ReplyDelete