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.

Gaucher Patients Unite

Finding another Gaucher patient is always exciting, seeing there are only approximately 10,000 of us worldwide. So imagine my surprise and delight in connecting with a lady who not only was born with Gaucher, but shares much in common with me. Despite living in different countries, the Internet has brought us together, and a bond, a collaboration of sorts has been founded. Emma Rooney has her own Web site if you'd like to take a look at what this incredible lady has been up to. Over the last few years since I began campaigning, I have come across some amazing people. If one could somehow put us all in one room, and harness the determination, strength of character, inspirational unstoppable work that we are all doing in one form or another; the potential is mind blowing.

Parkinson's disease being fairly common, already reaching several million, unfortunately the number of patients diagnosed continue to grow. In various countries around the world, there are support groups and foundations tirelessly doing fantastic work to raise money towards finding a cure and offering good sound advice and support to sufferers and their caregivers. In other words, one could say that the global Parkinson's community is well organised and has got its act together.

Take a rare disease, such as Gaucher, and quite a different picture is portrayed, due to the small number of diagnosed patients scattered around the world, it is hard to simply find one another, let alone get organised. We appear to all be doing what we can to create awareness, and bring attention not just to Gaucher but all rare diseases, which by mere definition, share similar problems. Receiving good care, from a doctor who understands and knows about a rare disease is not easy to find. It is a constant battle making those we come into contact with, understand what Gaucher (or other rare disorder) is, whether you suddenly find yourself admitted to the ER of your local hospital, seeing a new nurse at your health clinic, a social worker and even your local pharmacy. Everyone who you come into contact with for the first time, regarding your health, requires educating, and after many years of doing this, I manage to give a concise summary of the most important facts, relevant to the situation.

I invite you to take a look at my article this week in  The Huffington Post. I wish you all a very good weekend, and to a friend who knows why there's a dent in an old filing cabinet; I'm so glad you're feeling a bit better.

Billy Connolly's Attitude To Parkinson's

We could all learn a lot from Billy Connolly's attitude to life. He has the right idea using his wonderful sense of humour and love of life to laugh at Parkinson's right in the face.  Despite the shock of being diagnosed with Parkinson's and cancer for good measure (like myself, Billy never does anything by halves!) his formidable character has given him the ability to look at his prognosis with a healthy mental attitude and no doubt he'll use this situation as a source of endless comic material. I have always enjoyed his work as a stand-up comedian and talented actor. Billy tells it as it is, what I call "straight talk" - for he never minces words. Some may find his colourful vocabulary a little hard on the ear, but I love his enthusiasm, that cheeky smile and a twinkle in his eyes, as if a mischievous school boy is up to no good. I hope that Billy continues to entertain us for many years to come.

Having the right attitude, a sense of humour and remaining positive is what it's all about when you are diagnosed with Parkinson's. You want to stay far away from anxiety or any stressful conditions as much as possible. The detrimental effects can bring you crashing down at an alarming speed, for this is what Parkinson's feeds upon. Of course it isn't always easy to remove oneself from a worrying situation, or from people who are negative and unsupportive, especially when they happen to be relatives. This is a difficult one to handle, so it can end up being a bit of a balancing act.

Everyone makes mistakes, for none of us are impervious; an error in haste, a thoughtless word - sometimes actions that cannot be taken back or undone. If you've been following my blog, you will know I write in an honest way, sharing information and baring all, for it is from our mistakes in life, that we often learn important lessons. If I can prevent someone out there resulting in my situation, it will have been worth me revealing possibly the biggest mistake I ever made which could happen to anyone. I therefore urge you to read my article in this week's Huffington Post.  

Aggressive Sales Techniques

I was in a large pharmacy the other day, walking slowly, doing "the Parkinson's shuffle". It's not hard to be caught by an over zealous female sales assistant, who works on commission. I find it sometimes difficult to escape their aggressive hard sale techniques without buying something I really didn't need. All I wanted was a simple face cream for daytime. The lady began talking with great enthusiasm, telling me she was good at her job and knew exactly what I needed. Barely pausing for breath she prattled on trying to sell me an expensive product, claiming it would remove lines and wrinkles, rejuvenate and hydrate a mature woman's face, protect the skin from harmful UV rays, fading sun spots and blemishes and take years off making me look younger with a special anti-aging ingredient.

I politely let her finish the well rehearsed sales pitch, but with little patience left and standing there in pain, I told her I wasn't particularly bothered about looking younger. I was more interested in getting through each day, and asked if the face cream that appeared to do everything, also cured Parkinson's, because if it did, I would take two please. Now be rest assured, a line like that will bring any conversation abruptly to an end!

Finally I had rendered her speechless, and for a few awkward seconds, silence reigned between us. She looked me in the eyes, then glancing at the fancy packaged glass jar in her hands, she quickly put it back on the shelf. Taking hold of my arm she gently led me to the next aisle where all the less expensive familiar named products filled the shelves. With a distinct change of tone in her voice, showing genuine concern, making commission clearly no longer an issue, a caring and empathetic woman emerged before me. Handing me a simple tube of face cream, she told me the ingredients were more or less the same and the cream would do nicely, costing a fraction of the price. She wished me well and told me I was too young to have Parkinson's. "Your 50 years old, right?" she said eyeing me closely hazarding a guess. Astonished she had guessed correctly I replied "How did you know that?" Smiling warmly and with great confidence she said "I told you I'm good at my job!".

Being aware and knowing about issues that concern you is one thing, but sometimes without realising, as educated as we'd like to believe we are, natural biases and assumptions regarding areas we are not familiar with come into play. Finding oneself in a strange situation, life has a way of making some pretty cruel jokes at our expense. I found myself in an odd position recently which led me to write this week's article in The Huffington Post. I wish you all a very good weekend and if you happen to go to a pharmacy, beware any eager sales ladies!

Running For Rare Diseases

On April 21st, participants who took part in this year's Boston Marathon, not only paid respect to those who tragically lost their lives or were injured on April 15th 2013 in the Boston Marathon bombing, but together showed  the world that Boston remains strong.

The Boston Marathon is a very challenging course with many participants which can slow a runner down considerably. I heard about a group calling themselves the "Running For Rare Diseases Team" and appropriately the theme for this year's marathon was "we run together", where members of the team are paired with patients representing a variety of over 20  rare diseases. One runner, Andrew Scholte, completed the marathon in an amazing time of 4:01:28. Andrew, a scientist at Genzyme (which is one of the companies making the Enzyme Replacement Therapy for Gaucher patients), was paired with Emma Rooney who is a fellow Gaucher patient.

As Emma is not in Boston at present, she ran simultaneously in the town where she currently resides, proudly wearing green shoe laces which were a creative and novel concept used to symbolize Gaucher disease Awareness Month last year. 

Most of my family and friends enthusiastically joined in by wearing green shoe laces to show support for Gaucher Awareness Month last year. Perhaps this could become a yearly way of marking the month. You'd be surprised how many people noticed the bright green laces and asked about them, creating a great opportunity to speak about Gaucher and spread the word.

I heard from Emma once she had completed the marathon in just over 5 hours - and wished her congratulations on a great achievement. This was part of her message:

"It was a neat experience connecting with the Boston Marathon in my own small way. After just over 5 hours I had completed the marathon distance I set out to do and headed home to track Andrew's final kilometres to the official finish line. It was pretty emotional knowing that he was running for me and that last year he didn't get to finish his run because of the bombings."  

Emma's remarkable story was the inspiration for my article this week in The Huffington Post which is about setting achievable goals.

The Davis Phinney Foundation for Parkinson's

I have been writing once a week for The Huffington Post since November 2012, sticking to my topic - living with chronic disease. My article last week was dedicated to Parkinson's Awareness Month. Around the world people are making a stand, doing whatever they can during April to raise funds towards research and development, in the hope of finding a cure, and bringing the plight of those living with Parkinson's to the world stage. This week I have written about "support" which we all need in one way or another, whether you are a sufferer or a caregiver. Take a moment to read my latest article on The Huffington Post "Internet Support Groups".

Joining on-line support groups is an additional tool that in the last few years has increased in popularity. Particularly for those who live in out of the way places, having little or no interaction with others in similar circumstances, this is where the Internet comes into its own. Bringing people together from around the world with a common thread, I have found it very helpful and of great support sharing information, keeping well informed and in social contact with others in similar circumstances. Even if you feel you are coping well and managing alone, the sense of camaraderie being in touch with fellow sufferers and their families is without doubt of great benefit.

I came across a public charity called "The Davis Phinney Foundation for Parkinson's which dedicates itself to helping patients, their families and caregivers with information and tools to live the best life possible. The Foundation was founded in 2004 by Olympic medal winner cyclist Davis Phinney, who was diagnosed with Parkinson's disease at the age of 40. Today he is a role model and an inspiration to us all. I spent some time reading thoroughly every page on their amazing site and congratulate the Foundation on the marvellous work they do. I have not come across another site quite like this before and urge you to take look at The Davis Phinney Foundation for Parkinson's.