THE BLOG

There's No Place Like Home

21/01/2015 11:17 GMT | Updated 23/03/2015 09:59 GMT

In this household, there's never a dull moment. Several weeks ago, I was having some unusual symptoms and began to feel distinctly unwell. So what's new? I am always unwell. After conferring with my neurologist, he suggested we call immediately for an ambulance and go to the Emergency Room. By this time it was 11 pm, with little traffic on the roads, the ambulance arrived quickly. Our dog who is 9 years old, has been with me 24/7 since she was 8 weeks old, and was not a happy camper seeing two strange men, cart me away on a stretcher. My husband had to restrain her whilst they made their hasty departure out of our house. This is the first time in our new home, that we've had need to call for an ambulance, and put into practice all our planning to make the house disabled friendly. The medics had plenty of room to maneuver the stretcher with ease in the wide corridors and doorways, not to mention the garden path that has a slight incline, but no steps.

Strapped securely down on the stretcher, we sped away at speed with flashing lights, my concerned husband followed closely behind in his car. I was so exhausted by this time, I momentarily dozed off. The ambulance medic got extremely worried as he began calling my name and shaking my shoulder gently. I opened my eyes to see his agitated expression, which quickly relaxed seeing I was alive. (Note to self; don't scare ambulance medics by falling asleep!)

Before long we arrived at the emergency room of our local hospital. Not only was I surprised but highly impressed that the attending doctor in the ER had heard about and was familiar with Gaucher disease. Awareness has definitely improved by leaps and bounds. What a difference from when I was a child, when no one had ever heard of Gaucher disease. Even just 23 years ago nobody knew about Gaucher disease when I was admitted to this same hospital due to a bone crisis. I can't tell you what an incredible change has taken place over the years, through education and relentless campaigning about Gaucher, a rare genetic condition.

I was kept overnight for observation and once settled in the ward, clad in ill-fitting pajamas and to finish off the ensemble, a plastic wristband with a sticker of a red lightning bolt was placed on my wrist. I thought I'd been made an honourary witch, albeit that my parents were both Muggles, clearly the internal ward felt I was destined for great things! Alas it turned out the lightning bolt was nothing to do with the wonderful world of Harry Potter, and much to my disappointment, it simply indicated that "I'm a hazard" and prone to fall. What a letdown!

Not allowed out of bed due to my mysterious symptoms and prone to falling, I began to feel concerned that during my stay, as short as it was, lack of movement would not be good for my muscles. I know how a small setback like this can take weeks of dedicated exercise and movement just to return to some form of mobility.

Sticking strictly to one's schedule of Parkinson's medications is imperative, and in my "hospital bag" which is always packed and ready for any emergency, there are extra pills to ensure I'm never left without. It was just as well I had paid attention to other people's experiences and good advice, making sure I never go anywhere without extra pills in unforeseen circumstances. Despite a doctor taking meticulous notes of what pills I take; the dosage and times, when it turned 06:00 the next morning and time for my first pill of the day, there was no sign of a nurse with the medication's trolley. Thank goodness I was able to stick to my timetable, by using my emergency supply, for the nurse and medications trolley didn't turn up till 08:00.

The odd symptoms had thankfully disappeared; I felt fine, all the tests showed nothing unusual, and after giving the doctors a short "talk" about living with Gaucher and Parkinson's (never miss an opportunity to spread awareness!) during their morning rounds, they decided this cheerful talkative lady should be sent home. Very happy to be released, clutching my "discharge from hospital letter" in hand (not to be confused with Monopoly's "Get Out of Jail Free" card) my husband took me home. It was so good to be home, even though I was only one night in hospital - it's one night too many. As they say "there's no place like home!"

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