THE BLOG

So You Think I'm Lucky?

25/09/2015 11:12 | Updated 24 September 2016

Knowing how important physical exercise is to keep Parkinson's at bay, I have taken to swimming on a regular basis, in the hope this will help retain my mobility for as long as possible. The other morning as I entered the Sports Center, I was practically accosted by a woman who appeared out of nowhere.

"Lucky you - swimming whilst your husband is at work!" the woman said with a unnerving expression. I couldn't quite make up my mind if she was being facetious or just plain ignorant. I did not share her enthusiasm, nor relish the strain a pool subscription put on our already stretched budget. Health funds generally do not work on the premise of preventative treatment, and although probably understand the great benefits and importance of regular exercise, they don't assist chronic patients with extra ongoing expenses incurred by suffering a long term illness.

Hydrotherapy is recognised by health officials, the facilities of which along with their staff are excellent. However, as a patient I'm entitled to a mere 12 sessions per year, covering 3 weeks, so what happens for the remaining 49 weeks of the year? Exercise as we all know has to be a constant part of one's routine to prove beneficial and not just in short spurts now and then.

For me, there is no other sport or exercise regime that works better than swimming. Held buoyant in the water, there is no weight or strain on my painful bones and joints, which is a huge advantage over other forms of exercise. Lucky me (I say with great sarcasm) having a double whammy of being born with Gaucher disease, and at the age of 44 further endowed with Young On-set Parkinson's, there are not too many safe options left open to me. Even the physiotherapists have been reluctant to give me exercises to do at home. No one wants to take responsibility for such a complicated case - not that I blame them! I wouldn't want to take me on either!

Getting into my swimming costume, I must look like a contortionist in training! It's one thing struggling to get my costume on, but quite another trying to remove it once wet. When so much time and effort is involved, it takes a huge amount of dedication and discipline to exercise on a regular basis. I have made a conscious decision to include swimming as an integral part of my wellness regime, and see it equally as important as the cocktail of pills I take each day. I cannot sit back and idly wait for a cure or new medications. Time is precious, I have to act now and endeavour to take back my life. No one can do this for me. But one look at my darling husband's face and this gives me the strength and impetus to carry on, for my daily battles and efforts are ultimately for him.

You know what's really wicked about Parkinson's? It's the way everyone makes light of it. When you have to struggle to get through each day, the nights are long and miserable, pain is your constant companion, with no cure on the horizon for Gaucher or Parkinson's, patients are often sentenced to suffer in silence whilst expected to keep up a good show.

The lady still stood before me, waiting for an answer as all these thoughts went racing through my mind. Pathetically all I could come up with was "Yes, Lucky me!" None the wiser she smugly smiled back and scurried off, totally unaware that normally I'd grasp such an opportunity to educate with a quick impromptu lecture right then and there in the street. Lucky for her, my Parkinson's medications hadn't kicked in yet and I was "off"! Perhaps I'll bump into her again, and next time she may not be so lucky!
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