All Wired Up

It's been an interesting week, as if I'm not having enough "fun", my heart decided to take my body for an unexpected "joy ride", resulting in me requiring a "Holter Test". For those of you unfamiliar with this medical test, it monitors the heart's activity, generally over a 24 hour period. Small patches were stuck onto my chest which connected to electrodes. The wires are attached to a small battery operated recording monitor (the size of a pack of playing cards) and was hooked onto my waistband. It's helpful to the doctor if one writes down any strange palpitations or symptoms along with the time of day they occurred and what activity one was doing, as this can then be compared with the read-out from the monitor's recording. Wearing the Holter was no big deal, but when my husband asked if I'd like to go out for coffee (knowing I hadn't been out all week) I reluctantly declined. The wires kept on hanging down below my shirt, and no matter how I tried to tuck them inside my clothing they were very conspicuous making my not so slim figure even more bumpy and oddly shaped than normal. I felt like some sort of science project gone wrong, apart from that, YES I would loved to have gone out.

How infuriating is it when your car makes a funny sound; you take it to the garage, yet once there, miraculously the noise disappears. You leave the garage puzzled, only to be driven mad by the returning mysterious noise on your way home. I'm normally a very positive thinker, but on this occasion, I was convinced during the 24 hours wearing the Holter, my heart would beat regularly, no palpitations or chest pains would occur, which had prompted the doctors to perform this test in the first place.

Mid afternoon, laying in bed resting, all of a sudden the whole episode I'd been complaining about, began. I've never before been so pleased to be in pain!  Unlike my car with the odd knocking noise that was never discovered at the garage, my heart kindly obliged and the palpitations began along with a sharp pain down my arm. "Great" I thought, finally captured on a monitor! As if this wasn't proof enough, I was also awoken at 01:00 with yet another episode, and although would normally find it highly disturbing, I was relieved there would be a second incident recorded.

When suffering from a serious disease, it's very easy to attribute any new symptoms to that illness, overlooking the fact there may be something new and unconnected going on. Never dismiss or make light of new symptoms. Make sure you write them down and report to your doctor as soon as possible. One normally associates heart attacks with the male gender, but the number of women who suffer heart attacks is far higher than you would imagine. Thankfully I did not have a heart attack, but will have to wait for the results to find out what is happening. Trust your instincts, you know your body better than anyone. If you feel something is wrong, don't let it slide.

I have had great difficulty in writing recently, for my condition became worse over the last few days, making it physically difficult to type, and I hope you'll not judge my article this week too harshly for it was written in extremely hard circumstances. Anyone suffering Parkinson's or who has had experience with this disease, I am sure will understand the great effort it took to write, what to others may appear a simple article. "Parkinson's waits for no man" is the title of my latest article in The Huffington Post if you'd like to take a look. Enjoy your weekend and I'll be here come rain or shine once again next Friday.

There's No Time Like The Present

Making the most of each day and enjoying every moment to the fullest is how I try to live my life. I hadn't realised however till recently how my campaign to offer support to fellow sufferers and create further awareness was starting to have a detrimental effect upon my health. For anyone with Pakinson's to sit for hours hunched over a keyboard writing non-stop, although gave my days purpose and making contact with others around the world in similar circumstances was rewarding from both sides, it was beginning to sap my strength. Having Parkinson's, sitting in a bad stooped over position for so long each day, is not conducive to one's wellbeing, and I found I was literally crushing my lungs and heart, leaving me breathless.

You know when you've made a good decision, when you feel a sense of calm and peace in your heart, your inner voice telling you it's the right move. No one could have told me to slow down and cut back the hours I have been dedicating to my campaign, for some things have to come at their own time, and from within. Those who know me personally, including my doctors, are relieved I finally came to this decision for they could see the deterioration over the last year, and knew I was taking on too much. Whether I have caused the recent deterioration by my over zealous nature, or if my decline in health is simply a natural progression of the disease, I guess we'll never know. Now I have to focus on "me", a most unfamiliar scenario, for my attention has always been first and foremost to my husband and daughter.

Keeping a happy medium between fighting a disease, being pro-active and doing as much as one can to help others and yourself, whilst not endangering your own health is a very fine line to walk, or in my case "shuffle"! I have been walking that line for a few years now, but somewhere along this path I must have strayed a little too far. So now back on track, my aim is to ensure I am as well as I possibly can be. My neurologist has tweaked my PD medications and hopefully this will make a difference.  As anyone with Parkinson's will tell you, it’s a constant trial and error with changes in pills, dosages, and even times of the day when medications should be taken. A lot of patience is required until the optimum regime is reached.

My latest article on The Huffington Post can be read on-line: "Parkinson's Keeps On Taking". Friday is my favourite day of the week for it indicates the beginning of the weekend, so I will leave you here and wish you well. As they used to say on the BBC, "Tune in same time, same station, next week!" and I'll be here.

Mind Over Matter

It's Friday once again, and here I am sitting back at the computer. I hope you've had a good week, and that you are in good spirits.

My husband and I celebrated our silver wedding anniversary last week and I was determined to make it the most wonderful memorable day. Having realised my limitations due to Parkinson's we couldn't have the big party we had talked about and planned years ago. Instead we had to settle and be content with having just the immediate family over. An evening party was out of the question, for come 7 pm., or 8pm. if I'm lucky, I'm already running out of steam. Suffering extreme fatigue is a real dampener on any kind of social life; as soon as the sun goes down I'm finished for the day, leaving my husband frustratingly limited. This must be a common problem that many couples have, where the sufferer is already winding down from the day and has no energy left, but the caregiver, finished with work and chores is ready for some social interaction and relief from Parkinson duties. Taking my present situation into consideration, we decided to make a brunch, as the morning hours are when  I'm at my best.

I awoke that morning with great resolve, using every ounce of energy, I told Parkinson's to take a hike for the day so I could enjoy our anniversary I had looked forward to for such a long time. I had gone to great lengths with a lot of thought to come up with some original and special ideas to surprise my husband. A big thank you to various friends  who acted as my accomplice.

I think in certain circumstances, its mind over matter - and nothing was going to stand in my way of having a good time that particular day. I got dressed, and came out of the bedroom with my head held high, consciously standing up straight for a change, instead of my usual stance, hunched over with bad posture. I don't know what I was running on; adrenaline, excitement or sheer strength of determination not to allow Parkinson's to spoil our special day. My husband was astonished and got to see the "old Elaine" again, who he married 25 years ago, even if only for a few hours while with great willpower I defiantly kept Parkinson's under wraps. I managed to keep going for a number of hours, but eventually around 3 pm. I could continue the battle no longer and started to wilt.

Once all the guests had left, much like the Energizer bunny whose batteries are suddenly removed, and is unable to function, I collapsed into bed as fatigue resumed and Parkinson's returned with full vengeance. I had let my guard down for a mere moment and Parkinson's jumped back in and hit with force, leaving me powerless. I was so exhausted by the afternoon, it took a few days to get back to myself. However all the effort was worthwhile, as I still came out a winner for I had spent a whole morning celebrating with my husband and close family members, resulting in precious memories I can hold onto that Parkinson's can never steal from me. Even the photographs taken that day verify there is evidence to support "mind over matter", even though only for a short period of time.

I have written a light hearted article for The Huffington Post this week, so take a few moments to read "How Are You". Have an enjoyable weekend, and I'll catch up with you next Friday.

Dedicated partners

The week has flown by and a most eventful and busy one; a great way to start a new year. I knew I had been over doing things, pushing myself to the limits, but until I made the decision to stop blogging on a daily basis, and write just once a week on a Friday, I hadn't realised how much this computer had begun to rule my life. My typing has become very slow due to lack of dexterity in my fingers and was taking precious time away from me, when I should have been doing various exercises to keep me mobile and in the best shape possible, (Parkinson allowing!) and spending more time with my loved ones. Sometimes it takes a "wake up call" to make us stop, take a step back and reassess the situation. I am feeling much better, less stressed, and have managed to get into some sort of routine regarding Yoga breathing exercises, voice therapy, physical therapy and walking with Nordic poles. All this activity takes time and requires a conscious effort to include it as part of one's daily routine.

Life is unpredictable, a journey along which we hope to grow wiser and gain from experiences. Falling in love is not in our control, maybe fate brings us together, and this was our destiny all along. Having been married for 25 years now, not a day goes by that I don’t appreciate how lucky I am to have found my soul mate. He is indeed my silver lining! Almost joined at the hip, we are a perfect match, each bringing our own strengths and weaknesses to a marriage; together we make a good team. When we married, little did we know that Parkinson's would be joining us further down the road (who thinks of these things when young and in love?). Two is company, but add Parkinson's and three becomes a crowd! However we have learnt to manage and our sense of humour gets us through the rough days, and we laugh and make the most of the days that are good.

Fortunately we both have positive outlooks on life and are young in spirit, and remain hopeful, which is a huge bonus. I would not have made it this far and achieved all I have done in being an advocate for Gaucher and Parkinson's had it not been for my dear husband by my side. His devotion, love, support and patience have been endless. No words could express sufficiently the deep love and gratitude I feel for everything he does in taking care of me.

One of my favourite songs by the British singer, Katie Melua, says it all. I wish I had a pretty voice like Katie's for I would love to sing this song, but I'll spare my husband's hearing, and let him listen to the original. This is for you my darling who brings a smile to my face, warms my heart and holds my undying love forever; "If You Were A Sail Boat".

Writing weekly for the Life Style Section U.K. on The Huffington Post, my article this week is entitled "Mirror Mirror On The Wall". I wish you all a very good weekend.

A new year brings new hope

Having consistently blogged every day for two and a half years, it feels awfully strange, not being tied to this computer night and day. Making the decision to blog once a week on a Friday has given me more time to concentrate on taking care of myself. Any sort of exercise or physical activity, as any Parkinson's patient can attest, is vital in maintaining one's range of movement and mobility and slows down the progression of the disease. Along with spending more time with my family which is priceless, I have made drastic changes to my priority list.

It's Friday and I'm here, just where I said I would be, touching base with you. I hope you enjoyed your New Year's celebrations wherever you may be. We were invited to a party which I know was a huge success, a lot of fun and great food, but regrettably had to decline the invitation, realising it would all be just too much for me and I'd never make it till midnight. These dear friends who always put such thought and preparation into their marvellous parties, understood after I explained why we wouldn’t be going. Instead we stayed home, and I barely made it to 10:00 p.m. - how pathetic is that? Even Cinderella made it to midnight, dancing in the arms of Prince Charming, but she had a little magic help and a pair of glass slippers (which sound most uncomfortable, I'll happily stick to my orthopaedic shoes thank you very much). Instead of going out, I made a delicious dinner, and we opened a bottle of Merlot, and to some soft music I clung to my darling husband in a very very slow dance. I closed my eyes in our embrace as I imagined for one moment that I was young and healthy, dancing the night away at some grand ball.

For two weeks I have been doing Yoga breathing exercises, and as little as this may sound, I can feel a slight improvement. I do these exercises when I first get up in the morning as its peaceful and quiet, and also last thing at night which is calming before  preparing to sleep. If I get a chance during the day, where ever I may be, I make use of the time and do these exercises. I've got nothing to lose and everything to gain. I was given some very useful tips, and although I knew these things, seeing them written down and explained in a simple manner by a professional Yoga teacher, their importance was enhanced. We've all heard a million times, "bend or hinge at the hips, not the waist" but do we really practice what we know? "Keep a wide stance when standing for steadiness" - again plainly obvious, but now I pay close attention to how I stand. I can certainly see the benefits of learning Yoga, but I would highly recommend that if you are a complete novice like myself, ensure you find a qualified teacher who knows about Parkinson's.

This week's article in The Huffington Post is entitled "Life Is Not Black &White" which I was inspired to write and dedicate to a woman who has had a great affect on my life, and is always there for me.