Parkin­son’s won’t stop me liv­ing my best life rais­ing aware­ness

Ev­ery hour, two peo­ple in the UK will learn they have Parkin­son’s dis­ease – an incurable pro­gres­sive neu­ro­log­i­cal ill­ness

Woman & Home - - Contents -

Leanne L Owen, 49, was w an op­er­a­tional fire fi fighter be­fore be­ing b di­ag­nosed with Parkin­son’s P dis­ease. Leanne L lives with her hus­band, h 53-year-old Pe­ter, Pe­ter in west York­shire. Yor She says:

My life couldn’t have been more per­fect. At 40, I was the high­est ranked fe­male in the West York­shire Fire & Res­cue Ser­vice, and hap­pily mar­ried with two young sons, Alex and Danny.

I loved keep­ing fit and only had slight health nig­gles. I’d no­ticed that the fin­ger I used on the com­puter mouse was stiff. And I was suf­fer­ing pain in my right shoul­der, which was di­ag­nosed as a trapped nerve. I took ibupro­fen and car­ried on.

Af­ter com­plet­ing a char­ity cy­cle ride, the pain didn’t ease. I tried acupunc­ture and phys­io­ther­apy, with no joy. Then in 2010, on hol­i­day in Mex­ico, I felt some­thing wrong with my foot. I thought it was my flip-flops. They weren’t mak­ing the right sound – the noise was flip-drag. It was my right foot drag­ging. In fact, my whole right leg wasn’t func­tion­ing prop­erly.

Back home, I told my acupunc­tur­ist that what­ever had hap­pened to my arm seemed to be spread­ing to my leg. She said that as it was all hap­pen­ing on the same side, it was likely to be a neu­ro­log­i­cal prob­lem, and sug­gested I get my GP to re­fer me to a con­sul­tant.

I had an MRI scan that De­cem­ber, but it came back clear. Then in Fe­bru­ary I had a DAT brain scan, which is oc­ca­sion­ally used to iden­tify Parkin­son’s, par­tic­u­larly in younger pa­tients. I looked on the

Parkin­son’s UK char­ity web­site, and recog­nised symp­toms like a loss of sense of smell and that my voice was some­times croaky. Parkin­son’s can also af­fect hand­writ­ing, and mine had de­te­ri­o­rated.

I was dev­as­tated. I felt my world had tipped on its head. I had to tell the kids – it was so hard but they took it re­ally well. That night, I cried and said to Pe­ter,

“My bub­ble has burst.” But he just said,

“Don’t worry, we’ll blow an­other bub­ble.” It was the sweet­est thing he ever said to me. And he was right be­cause al­though we’ve had to change some of our plans, it has al­lowed us to make new ones.

I re­tired from the fire ser­vice, which was a wrench, but I be­gan plan­ning a char­ity chal­lenge, and have done one ev­ery year

since s my di­ag­no­sis, in­clud­ing l di g a coast coast-toto coast c walk and tan­dem sky­div­ing. This June, J I in­tend to cy­cle 977 miles around the t UK, rais­ing aware­ness and funds.

Not that this can stop the dis­ease pro­gress­ing. I feel some­times that ev­ery d day some­thing is taken from me but I try t to fo­cus on what I can do – not what I can’t.

Every­one with Parkin­son’s has d dif­fer­ent symp­toms. At the mo­ment, my right side is af­fected. I was warned I would likely start show­ing ob­vi­ous signs on my left side within five years but it’s been seven years and I’m not too bad.

My sleep is af­fected; I’m usu­ally awake by 5am. And I feel stiff and slow to start. Show­er­ing is a prob­lem, as is lift­ing my hair to wash it or brush­ing my teeth. I’ve had to learn to use my left hand a lot.

In­stead of writ­ing, I use voice-ac­ti­vated soft­ware with a com­puter, but I don’t think it al­ways recog­nises a York­shire ac­cent!

My cog­ni­tive func­tion has been im­paired too – I’m eas­ily dis­tracted – and my spa­tial aware­ness isn’t what it was.

And then there is the stiff­ness in my limbs and in­vol­un­tary spasms called dysk­i­ne­sia, which is em­bar­rass­ing and ex­haust­ing. No two days are the same.

There’s no cure for Parkin­son’s and I’m on drugs to help with the symp­toms, in­clud­ing lev­odopa, which turns into dopamine in the body, and Re­quip XL, which mim­ics the ef­fect of dopamine. But all the med­i­ca­tion grad­u­ally be­comes less ef­fec­tive. It’s mad­den­ing that there are no new treat­ments in the pipe­line.

But I was pos­i­tive be­fore di­ag­no­sis. So ev­ery day I re­mind my­self you can ei­ther put your Eey­ore head on or put a Tig­ger head on and be lively and pos­i­tive. For more about Leanne’s fundrais­ing, go to k977.co.uk or Face­book K977 Cy­cle Chal­lenge. Find out more about Parkin­son’s at parkin­sons.org.uk

Char­ity fundraiser Leanne train­ing for her cy­cle chal­lenge. Above: with her hus­band Pe­ter

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