Midnight Muffins

The other night we had the most wonderful evening with good friends who had invited a charming couple we'd met once before. The husband and I share much in common; yes you've guessed correctly - we both live with Parkinson's. We naturally compared symptoms and medications, which must have bored the pants off the other guests, but when a Parkinson's patient meets another, these questions are almost mandatory, feeling akin and understanding one another is of great comfort. Like many of us, I found that this gentleman suffers from insomnia. Most who endure this irritating, not to mention debilitating symptom, find something of interest to do with these hours in the middle of the night, when we'd rather be tucked up snugly in our beds blissfully asleep in the land of sweet dreams.

I write in the middle of the night, and sometimes my best writing is done in the wee hours of the morning. I discovered that this gentleman bakes in the middle of the night, and after tasting his ginger biscuits that were divine, (one biscuit was simply not enough!) he has become quite the baker. His wife often wakes in the morning to the delightful smell of freshly made home baked goods, maybe some midnight muffins; how great is that? Although his wife protests at the calorie filled goodies one could do without, it's hard to refuse tempting treats that have been whisked up in the night. In my eyes, she was a vision of beauty and need not worry of an extra pound or two. The warmth and love they exude clearly demonstrate how a husband and wife can battle Parkinson's together and prevail the difficulties they incur along the way.

Sitting on my other side was a gentleman from Australia, and after he heard a little of what I have been doing for the last few years, he asked if he said something of interest, would he end up finding himself in my blog? Well - the answer is "Yes". He asked me a very pertinent question, "Do I receive payment for articles I've written for The Huffington Post or other newspapers or magazines?" The answer is "No". I don't get paid for any articles and my public speaking is done voluntarily, although if far away, or abroad then travelling expenses are covered. He then went on to ask if I make any money from my website and blogging, to which I again said "No". I've had companies in the past asking if they could pay to advertise their various products on my website, and although they have mostly been related to ill health or disability in some way, I have keep a strict policy of not accepting any, for I don't want my website smothered in adverts. The only recompense I receive is if someone buys my books, but after Amazon handling fees and taxes have been deducted, this small amount is enough to buy a cup of coffee! Of course I would be thrilled to sell more books, and the modest income would no doubt be of great help, but I'm not running a business or an advertising campaign. My main objective is to offer support and reach out to fellow sufferers, caregivers and doctors in the field, along with bringing greater awareness as an advocate of Gaucher and Parkinson's.

Parkinson's isn't sexy!

Parkinson's is about as sexy as a pair of warm flannel striped pyjamas or long thermal underwear. The other night as I was getting ready for bed, catching an unfortunate glimpse of myself in the mirror; to say I was shocked would be the understatement of the year. Who was that hunched old lady staring back at me through the mirror with a glazed expressionless face, and aching arms that hung limply at her side? Of course I knew it was 'me', but the transformation that has occurred over the last few years is a hard pill to swallow.

When I last had a haircut, finding it difficult to describe what I actually wanted, I took with an old photo of myself to show the hairdresser the cut I had in mind. The young man looked at the photo and asked "Who is this?" It was at that point, I realised my idea that had appeared so good at the time, now seemed ridiculous, as if I was asking him to miraculously turn back the clock and work magic with his scissors restoring me to my former self. I sheepishly answered "It's me". He looked amazed and did a double take, staring long and hard at the picture and then back at me, not quite sure what to say next. But the very obvious question quickly followed, "How old were you in this picture?" Now I felt like I wanted the floor to open up and swallow me. Why on earth had I brought along this picture, when my hair, now turning grey and wiry with a mind of its own, probably couldn't be sculptured into the style I once had and that suited me so well. "I was 28" I muttered under my breath, as I caught an incredulous glance on my hairdresser's face, clearly dubious he could recreate what I had asked for, and probably thinking "Wow is this lady in denial, or what?"

The hairdresser did the best he could, and the cut was very nice, but that night as I went to bed, the same old lady stared back at me through the mirror. I have come to the conclusion it doesn't matter what hairstyle I have, nor if my nightwear is lacy and risqué, I still look as thrilling and appealing as a cold shower on a chilly night! Parkinson's is definitely not sexy!

The 7 Year Itch

When I look back over my life, which has been far from easy, it's hard to imagine that I've made it this far. Everyone has heard the phrase "The seven year itch", which is often used as a psychological term suggesting unhappiness in a relationship. A fitting term for I've lived with Parkinson's for seven years now and a bigger "itch" I have not come across. If only it were that easy to scratch long and hard enough to separate myself from Parkinson's. I've reached the point of being annoyed at living with Parkinson's, its debilitating symptoms that constantly get worse over time, the cocktail of medications I find myself taking each day and the loss of quality of life.

However, there is always the other side of the coin, and since being diagnosed seven years ago, Parkinson's has changed my life almost beyond recognition. I've experience and done things I would never have imagined or thought possible. Although I would love to say goodbye once and for all to Parkinson's, strangely living with this progressive disease, it has given me opportunities and allowed me the freedom I did not dare grant myself before. Its almost as if Parkinson's gives me the authority to let my hair down and not worry about what others may think. I don't have to put on the graces, I can simply be "me".

Feeling comfortable with who I am, confident and willing to take on any new challenges that present themselves, opens up a whole new world. No one knows what tomorrow will bring or what lays in wait for us, and therefore living in the moment and making the most out of each day is my mantra. 

Waning Appetite

I am not entirely sure if my waning appetite is due to the many medications I take, or Parkinson's disease itself. Maybe it's a combination of both. What I do know, is that I'm not alone in this predicament, and although I fully realise and understand the importance of eating a healthy well balanced diet, there are not too many foods that tempt me to eat. I almost have to force myself to eat, knowing how easy it would be to skip meals, a dangerous road to travel down, for once the stomach gets used to receiving less food, it's a dangerous slippery slope to losing weight rapidly (and not in a good way).

We all want to look our best, feel good and fit comfortably into our clothes, for there's nothing less appealing than someone who spills out of their garments. Getting rid of those extra pounds that irritatingly wont budge from certain areas, we might have gained whilst on holiday, or simply too many visits to the fridge for a little snack when you think no one is watching, is not the kind of weight loss I am talking about.

I am addressing the issue of having no appetite for foods that would once have appeared tempting, but no longer arouse or motivate one to eat. I often have difficulty in swallowing just my own saliva, so the thought of struggling with a mouth full of food does not enthuse me in any shape or form. Foods that are easy to swallow such as yoghurt, ice cream, a latte coffee, cheesecake, hot chocolate soufflé or a bowl of hearty chicken soup with noodles seem to fit the bill. However if I were to live on this delicious yet limited menu, I don't think it is the "well balanced healthy eating plan" my doctor was talking about.

If you are in the same situation as myself, I hope you'll endeavour to eat well. Just like you put gas in the car to keep it running, good healthy food is the fuel that keeps our bodies going. The sun has now arisen, and I will go and put some coffee on, so I will leave you here for today.

Parkinson's Stains

With shaking hands, unsteadily holding cutlery, hoping and praying that I don't drop food down the front of my clothes leaving stains, eating in public is sometimes a nightmare. Going to a restaurant used to be such a treat and enjoyable experience. I'd look at the menu and peruse all the appetising dishes, choosing something that I would not attempt to make at home. Today is a very different matter, for when looking at a menu, my first thought is how easy will this dish be to eat? Anything that involves spaghetti, linguine, couscous, peas, or a steak on a bone that requires great dexterity to dissect, I immediately eliminate, as they will be difficult for me to eat.

I always carry wet wipes in my handbag, have done for years, but originally began due to owning a dog who has the nasty habit of drooling and using the nearest person as a towel. I can't begin to tell you how many times I have apologised to complete strangers for our dog smearing her slimy goo on their attire. I began to notice when family came to visit, how they would dress down, knowing full well our darling canine, without doubt would leave her mark on their clothing. Wet wipes thankfully remove the unfortunate and embarrassing daubing.

I don't know what is in wet wipes, but the chemical or secret ingredient they contain is magic indeed. Now I carry these in my handbag (individually wrapped ones) for if I spill anything on my clothes when out, these wonderful wipes usually remove most stains immediately. If you have Parkinson's, a small piece of advice, is to always carry wet wipes with you when going out!

Life is not a rehearsal

Life is awfully short, and rarely turns out as we'd planned. As we grow older, time appears to speed up somehow and the years fly past. Life is not a rehearsal, so don't waste a moment standing in the wings waiting for the perfect moment to act. Grab your script and if you lose your lines, improvise, adapt to your changing circumstances and live in the moment. Parkinson's may grab the audience's full attention and remain centre stage, but if you don't let it get the better of you, you'll receive a standing ovation from those who love you. Make the most out of each day, stop what you are doing to give your children the full attention they deserve, if you can manage to steal an extra kiss from your spouse then sneak one in. Make each moment count and stay positive. Instead of thinking about the things you don’t want, such as Parkinson's, (and I can't think of anything I want less than this!) concentrate on the things you do want, and be grateful for the blessings we often take for granted. Having no regrets is the finale we all wish for, and if fortunate to be given an encore, grab it with both hands. Don't let any chance of happiness pass you by just because you suffer from ill health. Make the decision to be happy, optimistic and hopeful. If you are still rehearsing; stop and get your act together for life is not a rehearsal, the show must go on.

My weekly article for The Huffington Post entitled "Weathering Parkinson's" is up on-line if you'd like to take a look. Wishing you all a lovely weekend and good health!

A Moment Of Silence

It is not yet light outside and the hour is early; not even a bird can be heard or seen. I awoke with one person on my mind and it is with great sadness I sit here writing this morning. Unfortunately yesterday, someone I knew personally, who bravely battled Parkinson's for some years, passed away. It doesn't matter what age a person is, it's always too soon to lose a loved one and our thoughts and prayers are with his dear wife, who lovingly cared for him, and his family and friends. My husband and I send our deepest condolences to the family and hope that they are given grace and strength during this difficult and sad time.

If you are reading my blog, you may suffer from Parkinson's, are a caregiver, or live with another chronic illness. Please join me in a moment of silence, for although you may not know this man, you no doubt understand the journey he and his family have endured. He was someone's husband, father, brother, friend, and will be sorely missed by those who loved him. May he now rest in peace, and be fondly remembered.