Huge ramifications

When I had to stop working some years ago, I accepted this huge change quite easily and surprisingly filled the days, keeping myself occupied, and as far as my health was concerned, it was definitely the right decision. However, having to give up driving recently is completely different and far harder to come to terms with. The feeling of isolation and no longer being independent is immense. The ramifications of not being able to drive go far deeper and are more upsetting than I would ever have imagined. I joke at having our daughter as my own private chauffeur, and put on a brave face, but underneath my smile I am truly devastated. I have to think carefully about what groceries we need, and write a detailed list in advance, and buying presents for people is now a difficult task. Should I happen to forget something, I can’t simply pop out and get it. I would love to go and leisurely window shop and simply look around a shopping mall, to refresh my eyes. But hardly anyone has the time or the patience to take me. I'm sure that this is a common problem that disabled people have to deal with, but to tell you the truth; I'm having a hard time with this one. 

A special place

Now the warmer weather is approaching, the days are sunny and warm, having a garden; I find I am spending much time out there. Being housebound, now unable to drive I don’t get out that much, so the garden is becoming an invaluable escape from the confines of the house. Sitting outside in the fresh air, the sun warming my bones, admiring the flowers as they come into bloom, and enjoying the occasional wild life that frequents our tiny wild but inviting garden, makes me feel relaxed and calm. Having a place to go, whether it is a special room in your house, the garden, a balcony or somewhere else, everyone needs a tiny space they can call their own. Make sure you have a place where tranquillity reigns, so that you can relax and just be in the moment. 

Voice Therapy

At a local hospital, speech therapy courses are held especially designed for Parkinson’s patients. Someone commented on how my voice has improved over the last number of months in volume and strength, speaking sometimes slowly but clearly. I have found that public speaking has unwittingly been helping, and with the amount of talking I do, wherever I go, it’s as if I am doing my own speech therapy every day. Standing in front of an audience, no matter the size, I immediately straighten up, trying to hold my shoulders back, allowing my lungs to fill completely to project my voice, forcing myself to speak and annunciate clearly. I am resolute in getting my message across and I want to make sure I’m heard and understood. I have always been a bit of a “chatter box” (my mother used to say it is inherited!) so I apologise to those who know me and have to endure my non-stop chatter. 

How do you know when to help?

Family and friends are often in a quandary when to offer me help. No one wants to make me feel helpless and yet they also don’t want to leave me struggling and frustrated when I do need assistance. It’s a fine line to tread, knowing when to step in or when to hold back, and I appreciate the predicament. Being at family for dinner, I was eyeing the roast potatoes which looked crispy and delicious, but I refrained from taking any, as I could see they were going to prove very difficult to cut and would possibly end up ricocheting off the walls, awkwardly landing in someone’s lap! Finally my husband who is finely tuned in to my needs and feelings, without a word or any fuss, took a potato and cut it up on my plate. As my family and friends become more aware of Parkinson’s they are able to understand the limitations, the symptoms and how and when to offer help. Everyone has heard of Parkinson’s – a common disease affecting millions across the world, but many don’t know or understand the complex symptoms, sides effects of medications and what it is like to live 24/7 with a degenerative disease that accompanies one like a shadow. This is why I have taken on public speaking engagements, despite my poor condition; I feel strongly that if I can bring greater awareness, my suffering will not have been in vain. For no one can speak better about this subject, than a person who is battling daily with Parkinson’s.

Bad posture

Many people have bad posture and don’t stand up straight and tall, but this is a particularly common problem when one has Parkinson’s. Muscles are weak and sore and often very noticeably at the dining table, I begin the meal sitting up straight, but slowly sink reverting into the classic hunched over “Parkinson’s pose” which not only is unhealthy, literally squashing my lungs and upper torso but quite frankly it looks far from attractive. My family constantly prod me during mealtimes to sit up straight, but try as I might, after a few minutes I inevitably revert to a poor imitation of a relative from the hunch back of Nostradamus!  I saw something remarkable that I've yet to try; called The ShouldersBack Posture Support. It is a lightweight vest-like brace which gently corrects poor posture. Designed for comfort and support, the adjustable Velcro straps (and I love Velcro!) allows you to alter the tension and control the corrective force for your specific needs. It says that wearing the ShouldersBack for just an hour a day is supposed to help retrain the shoulder muscles to support the head more effectively, allowing you to stand tall and straight and reduces back pain. I'm pretty sure one would need an assistant putting this support on, but it looks like a good idea. If anyone out there has bought one of these, please let me know if it really helps and does the job. 

Man’s best friend

Why do they refer to dogs as man’s best friend? This sounds like a sexist comment to me, for a dog can be a woman’s best friend too. But then again I’m sure you’re familiar with the saying “diamonds are a girl’s best friend”! Did we as the fairer sex get the better “best friend”? I'm not so sure. As lovely as diamonds are, there is nothing quite like the companionship and loyalty of a dog. Yesterday my faithful dog despite feeling unwell herself, still maintained her vigil making sure I was OK, following me around, sensing I was having a bad day. We sat together in the garden, warming our bones in the sun, and companionably spent a couple of relaxing hours out there. Having a dog is highly therapeutic, and although she is not a “show dog”, she would certainly win first prize for her devotion, sensitivity to the frail and sick, her sharp instincts that I trust implicitly and her amazing ability to sense when I'm in danger or distress. This trusting wonderful dog takes care of me when no one else is at home, although I've yet to teach her how to make a cup of tea!  

Harvey the Rabbit

Do you remember a charming old film called “Harvey” starring James Stewart? He befriends a Pookah which appears in the form of a six foot tall invisible rabbit called Harvey, and in case you ever wondered what happened to Harvey; he’s living with us! Well at least we like to think so. Before you think I've lost my marbles let me explain, for I’m sure you too have an invisible visitor in your household who you blame for all sorts of faux pas, but you probably call him by another name. Whenever the last cookie in the barrel magically disappears and everyone says “I didn't take it”, or suddenly the ice-cream tub in the freezer appears to mysteriously be empty, when a slice of pie you were saving for later vanishes and no one knows where it went, a light was left on all night by mistake, suddenly there’s a pungent nasty smell that no one will own up to, a trail of sand or mud as if out of nowhere appears on the floor and everyone in your family says “it wasn't me!”, who do you blame? We blame these things on Harvey. It’s become a standing joke in our family, so if you ever come to visit us, and you have a mishap, just blame it on our six foot tall rabbit. Harvey’s a big fellow, trust me, he can take it!

The best ammunition

Having experienced how stress and worry can speed up exacerbating Parkinson’s disease at an alarming speed, the best ammunition against this terror is to keep busy, remain as calm and cheerful as possible and having a sense of humour and fun is of the utmost importance. I absolutely refuse to let Parkinson’s get the better of me. I have strong conviction, a fighting spirit, and much to do; I deny Parkinson’s to get the upper hand.  Seeing that I don't work and am quite ill, you wouldn't believe how busy I am. There don’t appear to be enough hours in the day, and I'm perpetually exhausted, but all this is keeping me going. Cyril Northcote Parkinson  wrote “Parkinson’s Law” and I quote: “Work expands so as to fill the time available for its completion.” Rather appropriately my days are filled with this ever expanding project of mine to bring greater awareness through my book, writing this blog, speaking engagements and all that has spiralled off making this mission a full time endeavour.

Daunting occasions

Going to a function, be it a wedding or other occasion can be daunting for anyone with Parkinson’s. Most halls today fortunately take into consideration disabled persons; parking spots allocated near to the entrance and slopes or ramps for wheelchairs are provided. However, the difficulties encountered are often not these obvious ones, but simple things people may not understand or appreciate. Walking with a crutch in one hand, a tiny evening bag in my other hand, leaves me unable to hold a glass or a small plate of food with a fork and be expected to eat whilst standing up. The logistics are simply impossible. I'm afraid of dropping the whole lot on the floor, or down the front of my dress, and so I politely refuse any drink or food that is offered to me, for I simply cannot manage. Sometimes at these types of receptions there are few chairs, and only very high bar stool type seating is available – again a big problem for anyone disabled. Watching everyone else tucking into the tasty hors D’oeuvres and sipping champagne from elegant long stemmed glasses, leaves me feeling upset and frustrated that I am afraid to join in such a simple activity. Those who know me personally understand, but it wouldn't occur to a stranger, who doesn't realise my situation, why I am refraining from drinking or eating anything. Parkinson’s affects every aspect of one’s life, and leaves nothing unchanged. 

Clinical Trials

I have always been greatly in favour of taking part in clinical trials. After all there is only so far any research or scientist can go with a mouse or rat! At some point, a human subject is required testing new drugs or treatments to be properly assessed and deemed safe and effective. I have taken part in a few clinical trials over the years, and although I’m always a willing party, I first check thoroughly with the various doctors who take care of me, to ensure that I’m not entering into something dangerous that may have irreversible ramifications. It’s bad enough suffering chronic disease, but I find a small consolation by taking part in clinical trials, where possibly helping solve the missing part of the puzzle in finding a cure. Hopefully participation in trials may end up helping millions of PD sufferers around the world. Not only is that very exciting, but I think it’s pretty cool.

Family medical history

Looking at statistics about various diseases, it makes me wonder whether our generation is more prone to disease due to our fast paced lifestyle than previous generations, or is it simply that today we freely talk about illness that was once frowned upon and accurate diagnosis methods have come a long way. A huge factor that also comes into play is today’s technology, making the world a much smaller place. Computers, e-mail, Internet all at our disposal, are connecting hospitals, R&D, doctors, patients and caregivers from all around the globe, thereby sharing information and statistics. I was looking at our family tree that was made some years ago; using many sheets of A4 paper cello taped together resembling a paper patchwork quilt. Whilst looking at this faded dishevelled map of our family, I suspect many of my ancestors had Gaucher, but were never diagnosed back in those days when little was known about this rare disease. Keeping records of family medical history is important and can possibly help future generations. Thankfully today, most information is kept on computers making it easy to keep and retrieve when necessary.

No Oscar Nomination

Sitting at the dining table, I was suddenly hit by a wave of nausea, dizziness and then the strangest thing happened to my eyesight. The best way I can describe what I was seeing, is if you can imagine looking at an old 8mm cine film that has reached the end, getting stuck on the same frame, the picture in front of your eyes keeps flickering up and down. This disconcerting eye movement shaking my equilibrium thankfully lasts only approximately 20 seconds at a time, (for now). Having a routine check-up with my wonderful Neurologist, I was told this interesting although disturbing phenomena is called:  Opsillopsia, which is normally associated with neurological disorders. How delighted am I (this is said with great sarcasm) that I now have yet another symptom to add to my ever growing array that makes my life far from boring! I love watching films, so I guess Opsillopsia (if one can even pronounce it) is quite fitting, making me feel that I'm constantly at the cinema. Someone recently hearing about my life said to me, “your story would make a great film”, which left me a little uncertain, not entirely sure this was a compliment. However, I seriously doubt that anyone has ever been nominated or won an Oscar for having Gaucher, Parkinson’s and Opsillopsia.

Medications & Mealtimes

Through trial and error I have recently come to the conclusion that leaving a larger gap between taking medications and eating allows the pills to work far more efficiently, hence giving me a better quality of life. I received a great information sheet regarding medications and mealtimes, written by Jackie Barzely, a fellow Parkinson’s patient which is being used to assist patients attending hospital PD clinics. If you would like to receive this information sheet, please e-mail Jackie at jackiebarz@gmail.com and she will send it to you as an attachment. Have a good weekend everyone.

Reducing Stress

Whatever you can do to reduce stress to a minimum is highly advisable. Everyone is different and therefore what works for one person doesn't necessarily work for someone else. Meditation is excellent and Yoga if you can manage it. Listening to music, gardening or any activity where your mind can focus on something else relieves harmful stress that is so damaging. For me, writing works best, by pouring my thoughts down on paper really helps. I can’t say it totally removes whatever I am stressing or worrying about, but it can lessen the intensity by putting it in perspective. I can’t stress enough (forgive the pun) how detrimental stress, worries and tension can exacerbate your health. So please, take a big deep breath, and find what works best to relax and calm you. 

My Cover Story

Many have asked what the picture is on the front cover of my book “Parkinson’s, shaken, not stirred”. Family and friends know, but after recent events I thought I should maybe share it with you all. The photo is of a lemon blossom from my lemon tree in our garden. This tree was bought for me several years ago by one of my brothers. He suffered from Gaucher disease and later on in life was diagnosed with Parkinson’s. Sadly having PD for just several years, he passed away too young at the age of 63. He was very successful in his work, but his job was extremely stressful. After experiencing personally last week what emotional stress can do, exacerbating Parkinson’s at a frightening speed, I am beginning to understand how and why he deteriorated fast going downhill so quickly, that even surprised doctors. Now you know why I put a photograph of lemon blossom on the front cover, representing a personal and silent dedication to my brother. I hope he is in a better place now, pain free, and without the restraints and suffering of disease. He is very much missed.

Stress Alert!

I have always heard and read about how stress and worry can exacerbate Parkinson’s, but it wasn't till recently when I was under some pretty heavy emotional stress (self-imposed I have to admit) that I fully understood how detrimental it is. In the space of just one week, my condition severely deteriorated at an alarming speed. I began to wonder if I had pushed the disease into an advanced stage and wouldn't return to where I was a week earlier. Thankfully once I realised what was happening, and  the stressful episode came to an end, I began to feel a little better, and after a few days I have returned more or less to how I was last week. I now realise how dangerous emotional stress can be for a Parkinson’s patient. Although stress can’t always be avoided in life, it is important to comprehend the extensive damage it can cause.

Thank you

I feel compelled to write about the incredible staff at the Retirement Home where my mother lived for the past few years. Working there is not simply a job; it is a vocation, which they do professionally and with great dedication. Every person in the 24 hour care unit is someone’s mother or father, and the way in which they are treated with dignity and compassion is heart-warming. To know that my mother has been in such caring hands has enabled me to sleep soundly at night, feeling confident that she was in the best possible place. Each member of the staff perform different duties, working together to create a highly proficient team.  They receive little thanks or response from those they tirelessly take care of, day in and day out, and the work is highly physical and emotionally demanding. I paid close attention every time I visited and was nothing but impressed by their unending patience and consideration.  I do not have enough words to express my feelings of deep gratitude. I will never forget their kindness and thank them all from the bottom of my heart in making my mother’s last year’s so happy and safe.

Appreciation

I would like to thank my dear family and friends who have shown me great support and comfort during these past few days. On the passing of my mother, being surrounded by loved ones and feeling the warmth and care clearly demonstrated has given me the strength to get through this sad but inevitable time. No one likes going to funerals, but making the effort to attend on a cold windy day or paying a condolence call, shows respect not only to the person who has passed on, but to the grieving family. I appreciate everyone who came and rallied around me, lifting me up at this difficult time. I know it’s hard knowing what to say in these circumstances, but merely showing up speaks volumes, a hug or a few simple words are all that it takes to make a difference. I am touched and honoured to have so many wonderful people in my life.

Sad Loss

I write this entry with a sad and heavy heart, for I lost my dear mother on Friday night. She was 92 and lived in a Retirement Home, where she received the very best of care. Although frail and weak, she fortunately drifted off peacefully in her sleep, after having lived a long and full life. My mother was a remarkable woman, with great spirit, and a strong heart. She was very sociable, and hospitable, an amazing cook, generous to a fault, and loved her family dearly. She had a passion for life which is probably where I received my resilient nature from and she never missed an opportunity or wasted a moment. She would always say "Never let the grass grow under your feet", and I think we all live by this. I will miss her very much but have many wonderful memories to hold on to, as I'm sure anyone who knew her will agree, for she was a special lady, a mother, grandmother and great grandmother. You will therefore have to excuse me for not writing further in my blog for a few days.

Making things easy

Getting dressed is such a performance these days; I am always on the lookout for clothing or accessories that are “Parkinson’s friendly”. I found a wonderful scarf which is like a long tube, and can be wrapped in different ways resulting in quite an elegant look, but the clever thing is, once this scarf is on, it doesn't flop down or fall off – it stays put, which is great! It comes in various colours and a wonderful addition to one’s wardrobe. Being disabled, and not terribly mobile, I feel the cold more than others who are physically active. I don’t want to be wrapped in a blanket resembling an old lady, so this stylish scarf does just the trick in keeping my shoulders and neck warm. As for footwear, the man who invented Velcro in 1948, George deMestral (a Swiss engineer) – God bless him, for he must have had Parkinson’s in mind. Doing shoes up that have Velcro straps makes life so much easier than the frustrations of fiddling with tying laces or doing up buckles. 

A new walker

One of my favourite things was walking our dog. Having Parkinson’s sadly this is yet one more thing I can no longer do and have had to come to terms with. I miss the leisurely long walks in the forest, rambling through the fields, strolling along the beach, and taking her with me where ever I would go. Walking is the by far the best exercise (or so they say) but having Parkinson’s and keeping as fit as possible is extremely difficult when mobility is limited. Our poor dog misses the walks and outings too, and after having her weighed at the vet recently, she indeed needs more exercise, as I was shocked by her weight. Mind you, in her defence, I do drop a lot of food whilst cooking, which she diligently devours – our vacuum cleaner on four fury legs!  So if I am to continue dropping food, our dog needs more exercise. I guess the upside of this is that she will keep the other members of the family in shape! Exercise is very important and I saw on the Internet the  Dashaway which is a new rehabilitative device designed by a Parkinson’s sufferer. At first glance it looks very much like a walker that you see in Retirement Homes, but from the pictures I can see  there are some differences. Keeping active can help slow the progression of the disease to some degree, and this ‘walker’ is being used as a rehabilitation device and for exercise, giving either full or partial support. See what you think, and have a look for yourself www.dashaway.net