Don't Judge Too Quickly

Looks can be deceiving and first impressions often stick firmly in our mind. I heard a story recently that epitomized how many people unfamiliar with serious illness, have a hard time recognizing and accepting the agony a person may be going through. I'm a good example of how deceiving looks can be, for when I have makeup on, my hair done and I'm dressed well with a smile on my face, you wouldn't in a million years be able to imagine that I'm in severe pain and what I go through on a daily basis.

The story I heard recently was about someone visiting a person who was dying. Upon arriving at the house, when they saw how well the person appeared, they commented on the fact he didn't look that bad and couldn't by dying, so would come back in a few weeks time when he looked much worse!!!! My mouth dropped open as I listened, and as awful as it this story sounds, unfortunately it's not uncommon.

Preconceived ideas of what a chronic patient should look like, or someone who hasn't got long to live are often very wrong. There are no set rules, everyone is individual, each disease has its own peculiarities, and one certainly can't wear a neon sign above one's head saying "I might look good to you, but trust me I'm suffering".  What you see with your own eyes may be an individual who is bravely putting on a smile and hiding the appalling pain to lessen your distress, wanting to be remembered as a cheerful person, not a wretched creature convulsed in pain.

Most of my family and friends have  not seen me when I'm having a really bad day. I wouldn't want them to see and remember me this way, to witness the anguish and suffering first hand. So should you happen to visit someone who is very ill, or got little time left, don't be too quick to judge, for they may be suffering in silence for your benefit. 

Connecting with fellow sufferers, quite a number have experienced some pretty weird side effects from medications. One particular side effect doesn't sound so bad; shopping! Yes that's right I said "shopping", but the problem is that one can become a shopaholic, which can ultimately put great strain on the family's finances. To read more about this issue, which may sound amusing, but should be taken seriously, take a look at my article in The Huffington Post. 

Shedding A Little Light

Well I've written in some pretty strange places before, and out of sheer necessity, used unusual things to write on when my trusty writing pad is not at hand, such as paper serviettes in a restaurant. I'm a writer at heart, always have a story to tell, and when inspiration hits me, I am compelled to write straight away, or my words and thoughts of the moment are lost. So here I am at 04:00 in the bathroom of a B&B we are staying at overnight attending a family wedding. You are probably thinking I'm writing on a roll of toilet paper - for what else could I find in a bathroom? But you would be wrong. Toilet paper far too thin and fragile to write on, one has to be resourceful. Under the two glasses by the washbasin, I found round paper doilies and somehow managed to separate the thin layers ending up with four circles of paper to write upon. Looking on the bright side, luckily one of Parkinson's peculiar many symptoms: "micrographia", helped me in this situation, to fit what I wanted to write on such small pieces of paper.   

Staying in unfamiliar surroundings, I became acutely aware not to fall and remember where I'd put my things should I need something in the middle of the night. Not wanting to wake my sleeping husband who suffers enough disturbed nights thanks to me, I ensured my pills were easily accessible with a glass of water next to them. Thinking I was well prepared, I hadn't taken into account, when the lights were turned out, the absolute darkness that enveloped the room. I couldn't even see my hand in front of me it was so dark. It was at this point I came up with the bright  idea (albeit it rather late, but shall bear it in mind for next time) that a night light would have been most helpful instead of cautiously feeling my way and trying to remember the layout of a an unfamiliar room in complete darkness.

I couldn't see the time on my watch, and didn't know how long I had before my first pill of the day, so maybe a travel clock with  illuminated numbers would have been the ideal item to take with, some of which have a fairly bright light shedding enough to allow me to see what I was doing.

I'd like to shed some light in sharing with you the story of a remarkable young woman who has a website dedicated to Gaucher disease. On 20th June she ran a night ultra-marathon, not only for herself and to raise awareness of the rare disease we both suffer from, but she also ran in my name. I was so touched and honoured, I have written about her courageous run in this week's article of The Huffington Post. (Photograph courtesy of Bettina Janchen.) 
 

The Dental Domino Effect

As with any serious on-going illness, there is a domino effect as symptoms of the disease itself and side effects of medications alter the fine delicate balance of nature and our bodies begin to suffer further complications. One such effect, is dental health, and it appears there is now data to substantiate evidence of impact both from Parkinson's and Gaucher disease. Is it any wonder I've had so much dental work done over the years? I don't seem to do anything by halves!

Saliva is nature's way of protecting the teeth and gums, containing antibodies that fight infection. Many Parkinon's medications cause one to have a dry mouth, subsequently lack of saliva, can increase the chance of tooth decay and gum disease, also often causing bad breath. There are products available to help alleviate a dry mouth. A change in diet may also help. Consult with your dentist to ensure you have no problems brewing that if left undetected could escalate into major dental work. Pay attention to any changes and look after your teeth.

Gaucher disease also poses some strange anomalies that often a dentist may be unfamiliar with. If you have Gaucher disease, make sure to inform your dentist so that he can read up and become informed about the effects Gaucher disease has on dental health.

The same can be said for many medical problems, that are compounded by the effects of medications for an on-going long term disease.  You have to be your own advocate and as I recently said to someone; the best advice I can give is: listen to your body and that inner voice which often intuitively tells us when something is wrong. Pay attention, for your instincts will guide you well.

"If only we could make time stand still" a friend said in an e-mail recently, who also suffers from Parkinson's (and often my muse), prompted this week's new article for The Huffington Post. 

Spontaneity

Due to the many medications a Parkinson's patient finds themselves taking, not to mention a rigorous regime of exercise, therapy and doctor's appointments which dictate much of one's day, there is little time to have fun! It's surprising how much of the day is filled with various activities all centring around Parkinson's whilst we try to live the best possible quality of life. All this leaves little room for spontaneity - an important and uplifting addition to everyone's well-being.

Doing something fun, on the spur of the moment - anything spontaneous lifts one out of a monotonous routine, and for a short while, Parkinson's retreats and is relegated to the background.

Having recently discovered the virtues of walking barefoot in the house, and seeing the vast improvement, I was curious to try walking on the beach, where the sand right at the water's edge is damp, flat and hard. So with curiosity and spontaneity, my husband and I grabbed the moment, made some sandwiches, dusted off a bottle of red wine from the rack and made our way to the beach. There are thankfully quite a number of disabled parking places right next to the beach, so very little walking was involved from the car, although initially the sand was quite difficult and painful for me to wade through, but once on flat damp sand by the water's edge, I could walk barefoot far easier. I can't tell you the pleasure and thrill of merely paddling my feet (albeit in 2 cm of water!). I don't remember the last time I was at the beach - obviously far too long!

We spent the most wonderful couple of hours watching the sunset, listening to the waves crashing on the shore, children playing in the sand, people jogging, walking their dogs; all this lifted our spirits. So whatever you can find to do together, breaks up a regular routine, brings closeness and puts back some spark into your lives. Sometimes you just have to grab life, and do something spontaneous.     

Sharing good advice, I have learnt many useful tips and information from fellow Parkinson's patients, which was my inspiration for this week's article in The Huffington Post

What do I do?

At a social function recently, meeting up with friends and introduced to new people, at some point the inevitable question "and what do you do?", was asked by a pleasant woman I'd not met before. I had listened with interest about her profession, and I could quickly see she was an intelligent dynamic career woman who enjoyed her work. The question "and what do you do?", rattled around in my head for several moments, before I took a deep breath and tried to summarise what it is that keeps me so busy every day. I'm never quite sure how a complete stranger is going to react when I launch into the fact I have Gaucher disease and Parkinson's and what it is that fills my days with purpose. It would be so much easier if I could say "I'm an accountant" or "a lawyer", but what keeps me busy each day is far from a regular job. I don’t get paid, nor have any worker's rights or paid holiday, and as for "sick leave" - well let's just not go there! This was certainly not my chosen career, but dealt with rotten DNA, bad luck or maybe just fate, it's almost as if my path in life has been laid out for me, and I am simply following.

As I began to explain what I've been doing since being diagnosed with Parkinson's, the lady fell silent; always an unsettling response, for I'm left not knowing whether to continue, or cut my explanation short. Yet I detected a sense of interest, so let my enthusiasm pour forth, as I told her of battling two diseases and the campaign that snowballed four years ago from writing a few lines of poetry one night.

Did you ever stop and wonder how you got to where you are today? When young, the world is your oyster, and anything seems possible. Some know without doubt what they want to do with their lives, and purposefully follow dreams, turning them into reality. Other youngsters flounder a little until they find their niche  and eventually life falls into place. Then there are people like myself who have made plans, but ill health has stepped in the way and dreams thrown out like dirty dishwater, goals pushed aside, as if turning the page of a book, a new chapter of unchartered waters lay before me.

Gaucher and Parkinson's have taken me on quite a journey of self discovery and I find myself on a completely different path than the one I had envisaged when young and carefree. Maybe you have also made detours along the way. Having the courage to pick up the pieces of a broken future and move forward, making new goals and almost starting life afresh, is the best I can do in my circumstances. Memories of who I once was and what I wanted out of life are a distant recollection, but ultimately have moulded me into the person I am today.

Although I have written about the role of caregiver before, there is a significant difference between caring for someone with a common disease and someone with a rare disease. My dedicated husband undeservedly has experience and perspective from both sides, so I have written this week for The Huffington Post  specifically about the challenges of "Caregivers of Rare Diseases".

Move over - Parkinson's here!

Housebound most of the time, any outing, however simple, is a treat. Fortunately there are a number of places to go relatively near by, but I have to rely on  others to drive me. I hate the loss of independence in this respect, but have unwillingly come to terms and accept it.

I have been struggling to use my mobile phone for some time, which is a dinosaur according to my husband. The buttons small and too sensitive for Parkinson's fingers, I reluctantly agreed to upgrade. Someone had recommended a particular mobile flip phone, with large buttons, making it far easier to use which was designed for older people, but works equally well for anyone with dexterity problems. I wear it on a cord around my neck so it's with me all the time, but the best feature of all is the red emergency S.O.S. button on the back of the phone. This has been set to automatically phone my husband and daughter in a crisis situation. It cannot be accidentally pushed in my handbag, but needs to be pressed and held for several seconds, which then lets out a loud siren noise, not dissimilar to an ambulance or police car, indicating a message calling for "help" has been sent. This is a marvellous feature - but I hope I won't need to use it!

Having a little outing to a local café, my husband ordered an espresso coffee, which arrived in a tiny cup, reminiscence of the dolly's tea cups I played with as a child. Barely one sip and the strong coffee was gone. What interested me far more than the miniature china wear, was the bottle of soda water that accompanied the espresso, (just as they serve it in Italy to clear the bitter after-taste). I have never seen such a tiny plastic bottle before, and immediately saw a great use for it. I now keep it in my handbag filled with water, so that when out, and need to take one of my many Parkinson's pills that are carefully spread out throughout the day, I always have a sip of water with me to take the pills, no matter where I am.

Changing the subject completely and unable to segue from water bottles to cars, I'll just jump straight in….

I have received many e-mails over the last year from people around the world, about a particular article I wrote for The Huffington Post during January 2013, and since decided to write a follow up piece seeing the amount of interest shown, so take a look at an issue that effects many but little seems to have been done to rectify this problem for the advertisers and PR of car manufacturers plainly think "Disability Isn't Sexy"!

Rosy Tinted Glasses

I was invited to give a talk earlier this week, to doctors who came from around the world to attend a Conference aimed at those who have patients with Gaucher disease. A connection between Gaucher and Parkinson's was made some time ago, and explained just before I began my talk. Upon waking that morning, Parkinson's, that has a will of its own, despite my fighting spirit and determination, decided to push me to the limits. I had to muster every ounce of energy to talk for 45 minutes, telling my story and explaining what its like to live with two diseases, one rare (Gaucher) and one common (Parkinson's). Like the British weather, with Parkinson's you can never be certain, knowing in advance if it's going to be a good day or bad day. I managed to get my message across, for even though I've been doing voice therapy, my voice was rather monotone and not as loud as it usually is. It was a pleasure to meet such a lovely group of doctors who made the effort to attend the conference, and who understand Gaucher disease.

I explained why there is a lemon blossom flower on the front cover of my book "Parkinson's, shaken, not stirred"; how my brother before he passed away from Gaucher and Parkinson's at the age of 63, had bought me a lemon tree which is planted in our garden. The picture of the blossom is a dedication to his memory. One of the doctors asked "why a lemon tree?" to which I replied, "when you're given lemons, make lemonade." In other words, when born with bad DNA and have serious health issues, make the best of a poor situation.

Since childhood, I've always had the ability to look at the world through imaginary rosy tinted glasses, looking at the bright side of life, seeing the glass half full, being grateful, counting my blessings and paying attention to detail, noticing things people often take for granted or miss entirely. 

I am featured in this week's blog of the indiePENdents Web site and invite you to take a look.

Life has a strange way of leading us down paths that we might never have imagined taking. People have the odd notion they are in control, when in fact, I often think, call it destiny or fate play a far larger part. I have never been more focused or determined in my life before, as I know being a health activist, an advocate for both diseases, I'm doing exactly what I am supposed to be doing with my life. Don't get me wrong; if I could magically be cured of Gaucher and Parkinson's disease tomorrow, without hesitation I would gladly wave these two unwanted guests "goodbye". I always believe everything happens for a reason - and that principle is what I cling to in rough times. Having purpose, a reason to get up each day, is something everyone needs.

Talking of getting up each day and mobility, my article this week for The Huffington Post is about the beneficial effects of music for Parkinson's patients.