THE BLOG

Gaucher & Parkinson, Take A Hike!

04/09/2014 16:29 BST | Updated 03/11/2014 10:59 GMT

Growing up with Gaucher disease, I wasn't allowed to participate in sports at school and often felt left out, but knew my bones were weak and fragile. I frequently had bouts of unexplained chronic bone pain, so didn't need much convincing to steer clear of the sports hall and the highly spirited netball team.

There is an exercise path of 3 kilometres long nearby where the municipality has created a safe place for residents of all ages to run or walk, some accompanied by their dogs and a lane especially for bicycles. Early in the morning before the heat of the day has hit the streets, this marvellous walkway is alive with a community of people enjoying exercising and keeping in shape before going off to work. As late afternoon arrives, and it has cooled down to a comfortable temperature, a sudden hive of activity begins to appear again on this path. Whenever we pass by in the car, I look in envy at those enjoying outside activities. How I would love to run, or even walk along this inviting looking pathway, but I'd first have to tell Gaucher and Parkinson's to take a hike!

Exercise is Parkinson's enemy, for as long as you keep mobile and have a programme of exercises you stick to daily, this routine will help those joints and muscles from seizing up. Exercise is also very important for Gaucher disease, so for someone who never did sports at school, I sure have my work cut out for me now. What a shame that some kind soul couldn't do exercises for me by proxy, but I guess I shall have to persevere alone.

Something as simple as good posture can make a huge difference and is essential for both Gaucher and Parkinson's patients. When we pay attention and stand up straight, not only does good posture make one look better, but more importantly it also helps improve our organs function, by maximizing lung capacity. It's very common when suffering Parkinson's to slouch and have rounded shoulders which can cause lung restriction. Therefore if posture is improved, breathing should become better. If breathing is improved and lungs are working to full capacity, more oxygen spreads throughout the body. When there is an increase in oxygen, the body is more energetic and less fatigued. This is why every time my dear family see me slouching or hunched over, someone gets great enjoyment in poking a finger in my back reminding me to stand up straight. Of course this "poke" is done with good intentions and my best interest at heart (so I am told), but I can't help thinking it is enjoyed a little too much by the enthusiastic person poking me!

Apart from not participating in sports when I was at school, believe it or not, I never had a bicycle, and wouldn't have a clue how to ride one. In my present condition, I don't think it would be too wise to take up cycling at this point in my life, so this is an area probably best left to others, who are healthy and experienced riders.

I would like to say a big thank you to Madeleine Abramson who will be cycling on 7th September in a well organised sponsored bike ride from London to Cambridge. The ride should take approximately 4.5 hours, and there will be three pit stops along the way, the last of which will be offering delicious cakes, all home made by supporters in Cambridge. This is Madeleine's third year cycling for charity and proceeds will go to support the Gaucher Association. On behalf of all Gaucher patients, thank you Madeleine for supporting us in your sponsored ride this year and helping bring awareness to this rare condition. Wishing you the best of luck Madeleine and hope the British weather holds out on the day. If anyone would like to donate or sponsor, please go to the official site "mydonate".

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http://www.elainebenton.net/