Make the most of it

“Thank you” to all who inquired, realising that something must be wrong, as I haven’t written my weekly article for The Huffington Post recently. Thankfully I'm feeling a little better and was able to write and submit a short piece entitled “Night Time Antics”. 

I’ve been suffering terrible fatigue along with worsening symptoms of Parkinson’s making it difficult to accomplish anything these days. I’ve always said the most predictable thing about Parkinson’s is its unpredictability!

I think most fellow sufferers would concur that having a bad day, for no apparent reason, makes one feel like the situation has definitely made a turn for the worse. Yet suddenly having a good day, much to one’s relief, can renew hope and give one the strength to carry on. So today is one of those much awaited GOOD DAYS! And I’m going to enjoy this feeling whilst it lasts.

Forgive me for not writing more now, but something one learns quickly when living with on-going ill health, is to make the most out of every moment. So instead of sitting here writing, I am going out with my darling husband, even if only for a couple of hours, I don’t want to waste this opportunity.

I wish you a good weekend wherever you are and whatever you are doing. I hope you too are having a good day and urge you to live in the moment and grab life with both hands. 

Becoming Forgetful

I think it’s safe to say that most of us are petrified of becoming forgetful, losing our marbles and being a burden on family. A friend told me of a lovely saying her close friend’s mother used when leaving somewhere. To ensure she had not forgotten anything, her glasses, a cardigan or some other personal item, getting up from a chair, she would turn to the chair she’d been sitting on and say “Goodbye chair”. By doing this, as silly as it may sound, it makes you take one last look, to ensure you have all your possessions with you and nothing has been forgotten.

Having spent much time in hospitals over the years, I have on occasion lost various items of clothing, including a rather worn but much loved cardigan and on another instance a fabulous jacket. It always seems to be a favourite piece of clothing that goes missing, and never an unimportant item. Why is that?

I was at the pool the other day, and as I was getting up out of the chair, I found myself saying “Goodbye chair”. I have to tell you, it works!

Gaucher Awareness

I wrote a collection of poems about growing up with Gaucher disease to hopefully help spread awareness by sharing a personal story from the patient’s perspective. Putting a face, name and a unique story to any rare disease brings attention and  sheds some light on not only what the patient goes through, but also how a family is affected and the ramifications involved suffering a rare disorder.

Please take a look at my Amazon Author’s Page and share with anyone you think may be interested.

Comfort Food

We’ve all been there, done that……when you can’t decide what to eat, instead of eating a good square meal, one resorts to impulsive grazing in the kitchen. In this manner, without noticing or meaning to, we can consume large amounts, not to mention those nasty calories that relentlessly hug our hips and other areas where least desired. The saying “what passes the lips ends up on the hips” may sound cliché, but true it is!

Ever find yourself standing with the fridge door open, just staring inside? You know full well what’s in there, but somehow you hope that inspiration will hit you, or some forgotten delicious goody will magically appear and jump right off the shelf and smack you on the nose. Eating for comfort is common place, but when your mobility is compromised, one can ill afford to carry extra weight, which puts unnecessary strain on joints and limbs.

Burning off extra calories isn’t always possible when chronically ill, but to deny oneself favourite foods or the occasional special treat seems harsh. Life is hard enough without being punished by making small pleasures, such as certain foods exempt. Exercise of some sort should be a regular part of our daily routine, but like myself you may have neglected this important activity. Only recently I began swimming on a regular basis and regret not having started this a long time ago. Better late than never I guess.

October 2015 Gaucher Awareness

Wearing two hats, one for a rare genetic disease and the other hat for a common degenerative neurological disease, you would think I have my hands full, or at least enough hats! After all, how many hats can a person wear? But October is Gaucher Awareness Month, and so today I am wearing my “Gaucher hat” in the hope of raising public awareness of this rare disorder.

A great initiative this year was ‘The Spotlight on Gaucher Film Contest’ which is an online video competition. It provided a platform for Gaucher patients, and their families to share their unique stories. The winning video entries were announced for International Gaucher Day - October 1, and can be viewed.

If you were to ask my husband what is the definition of ‘rare’?, like most men, I’m sure the first thing that would spring to mind is steak! Medium or rare, perish the thought of well done, add a side dish of French fries and a cold beer to wash it down, I wish this were the only context I associate with ‘rare’. For me, the word ‘rare’ conjures up a very different picture, as I was born with a rare genetic disease. Looking up the word ‘rare’ I found it said: of an event, situation, or condition, not occurring very often, ‘a rare genetic disorder’ synonyms: infrequent, scarce, sparse, few and far between, like gold dust. Well I don’t know about ‘gold dust’, but the remainder pretty much says it all.

Take a look at my article in The Huffington Post and please ‘share it’ to help raise public awareness.