Parkinson's puzzle

Feeling under the weather, with very painful stiff joints, and arms that are weak and have no strength, as if someone has sapped all the power from my body, I found myself for the first time, with little to do. I couldn't even manage much writing, as the pain throbbed in my arms. Cooking which I love (despite being desperately slow now and have a tendency to drop things onto the floor which to no end delights the dog!) even this was too much for me to handle yesterday. My husband who always comes up with bright ideas, got out an old jigsaw puzzle of 1000 pieces which I haven’t done for a long time, so this kept me occupied most of the day and took little physical strength. I used to love puzzles, and although managed to complete 3/4 of it by myself, I found I was suddenly stuck and appeared to be missing some pieces with straight sides for the edges. I left it unfinished on the dining table and took an afternoon rest. Upon getting up, I found the puzzle had been completed by my daughter (after all, who can resist a puzzle just crying out to be finished?). What was truly puzzling though (pun not intended) was that I had put pieces in the wrong places, so no wonder I had had a problem finishing it. I was horrified to see that I had such difficulty in doing a jigsaw puzzle, and one that I have done on countless previous occasions. Parkinson's is a particularly puzzling disease, taking away slowly but surely, all sorts of abilities some of which may sound inconsequential and unimportant, but actually indicate clearly how the disease slowly advances and takes hold.

The bright side of life

My husband and I (this sounds like the beginning of the Queen's speech) always try to look on the bright side of life. I think one of the things that attracted me to my husband all those years ago, is his sense of humour, and ability to make me laugh. I was laughing so hard yesterday my sides were aching. If I were to repeat what made me laugh so much it probably wouldn't sound funny today, but being able to joke and be silly in each other's company keeps us young at heart. Have you ever met someone who is your age, and yet seems so much older, or the other way around? I think it's all about attitude, and if you remain young spirited, this helps get you through tough times. It doesn't matter how old you are in years, but how young your spirit is.

I talked of the importance knowing first aid in my blog on 19th July, and yesterday I came across a marvellous "flash mob" dance by a group of firefighters, demonstrating saving lives with CPR (cardiopulmonary resuscitation). What caught my attention in particular was that they were using the famous Bee Gees song "Stayin Alive" to instruct people how fast one has to perform compressions to the chest by staying in beat with this particular song. When I took a first aid course some years ago, during one of the sessions we were taught this method using the very same, rather appropriate song. I'm sure the Bee Gees had no idea when writing what has become an iconic song from the disco era, it would end up being used to save lives. Take a look at this marvellous clip of firefighters who put their lives on the line every day for their community.

Poor balance & walking

I've seen on YouTube various clips and read articles on the Internet about Nordic Walking Poles. Many Parkinson's patients are finding these a great benefit in helping improve their posture, gait and overall movement. I was kindly given a set of these poles, and much to the amusement of my family, I ungainly attempted to walk the length of the corridor in our house. With little co-ordination I was unable to copy what I had seen others doing, that appeared so simple. It’s all very well giving my family a good laugh, and I'm sure I must have looked quite a sight, but I failed miserably, looking like a disjointed robot, stiff and unsure of each step. 

However, the other day my sister-in-law came to the rescue, and helped me first of all adjust the poles to the right height, so my arms are at right angles to my body, and then suggested I try concentrating on one side at a time, before using both poles together. I tried her idea, and dragged one pole along the floor, whilst I concentrated on my right side, saying "right" out loud, as I took each step and moved the pole forward in my left hand as I moved my right foot. When I got to the end of the corridor, I swapped sides, so now focused on saying "left" I moved the pole on my right side as I walked. Once I have mastered each side by itself, I will hopefully be able to put both together and use the poles as they should be. I could already see that my posture straightened up as I walked with the poles, so will persevere and hopefully see some improvement.

Knowing something's wrong

When we hear our inner voice telling us something's wrong, often we don't listen. Finding yourself in new circumstances, possibly in an awkward position, unsure of correct protocol, or being pressurized by an agitated person who has no empathy or time, sometimes mistakes are made. When your inner voice is telling you; "don't do this", "don't agree to these terms or conditions", "this is wrong and something doesn't feel right" - walk away. No matter how you are persuaded and coerced into doing something that you know full well is not going to end well - don't fold. Pull yourself together and just walk away. Going to a doctor or hospital, if I have to take papers with me, or a disk containing CT scans or MRI images, I always make copies before hand, so that I still have the original safely at home. Often with busy doctor's offices and most certainly in large hospitals, it does happen on occasion that a file or letter goes missing. Although much material and data today is stored on computers, we still rely on paper work and hard copies to some degree. Always be prepared with copies of important paper work. You may still want to carry with you the original in case this has to be seen, but once verified, a copy should be suffice to leave in its place, the original safely staying in your possession. Often the copies are so good today, it's difficult at a glance to recognise the original, so I sometimes write in red pencil on the back of the original clearly distinguishing it from any copies. This may sound simple advice, but we've all been guilty at one time or another of not listening to that little voice inside saying "this doesn't feel right".

Gardening considered therapeutic

I enjoy nature and being outside. In particular, I love flowers, and like pottering around in our garden. Although I don't profess to know that much, I somehow muddle through and the garden is blooming and flourishing. Having raised flower beds enables me to reach the plants without bending down, and everything that has been planted is hardy and requires little maintenance. Once outside, I can easily lose track of time, it's no wonder that at long last I have a little colour on me and I don't appear like a pale faced extra from a vampire movie! Not only does gardening bring me immense pleasure, but somehow it relaxes and calms me in a therapeutic way. An article was brought to my attention, that appeared in the "The Huffington Post" newspaper, reporting findings of how gardening can ward off depression and improve one's mood. According to a survey in Gardeners' World Magazine, 90% of gardeners think it improves their mood and are less likely to suffer from depression. So now you know where you can find me …. I'll be in the garden!

If you'd like to read something further, my latest article is now up on-line at The Huffington Post entitled "Living in the Slow Lane" which was inspired by a friend and fellow Parkinson's sufferer.

Frustration

Anyone with Parkinson's, chronic illness or other disability; feeling frustrated when one can no longer do things one used to, is perfectly understandable. Sometimes simply getting dressed is an accomplishment for me, particularly if just out of the shower. Having Parkinson's, it's no mean feat putting clothes on when I'm still damp. Needing to buy things or getting a task done at home, if unable to complete by myself, the enormous frustration is exasperating. I needed a roll of wide cello tape, and as silly and minimal as this may sound, it had been on my "to do list" for a few weeks. I hate asking for help, and was not about to bother anyone with such a small request, yet I had little opportunity to get anywhere to purchase it myself. Thankfully the other day, I was out with someone and able to drop into a store - so now I have cello tape! To an able bodied person this probably sounds pathetic, and maybe you cannot understand, but anyone who is house bound, and needs to get something done, or purchase an item, no matter how small, I'm sure is able to relate to what I'm saying. When my husband and daughter arrive home, they are sometimes bombarded (unintentionally on my part), with a flurry of requests from me, that may appear of no importance to them. The fact that I have to ask for help at all is horrendous, for I was once so capable, but now there are many things I cannot do by myself. My requests often end up sounding urgent, for unknown to my family, I may have been struggling to complete something for days, and the exasperation and feelings of inadequacy have quietly been building up. However this is no excuse to take out my frustrations on those I love the most. I have an incredible understanding husband, who would give me the sun and the moon if he could, and has the patience of a saint, but on occasion, I'm sure I must drive him up the wall. Good communication is therefore vital in understanding each other, and our sense of humour, that thankfully we both seem to have plenty of, keeps us going.

Predictable

A friend and fellow Parkinson's sufferer, who is a smart woman often says things that are so pertinent; both of us unfortunately understanding the other only too well as this lousy disease runs riot. I was thinking I would never have had the pleasure of knowing her, were it not for Parkinson's. As I've said so many times before, there's a silver lining to everything - you've just got to know how to find it. Living with any illness, having contact with fellow sufferers is invaluable, and I hope my friend doesn't mind, if I share with you something she said the other day which struck me immediately, as it encapsulated Parkinson's perfectly. She succinctly put PD in a nutshell by saying:  "The only predictable thing about this disease is it's unpredictability." I don't think you can put it better than that!

I was at the bank last week, and having to sign papers, I noticed the tiny box on each page where one is supposed to sign. The clerk handed me a pen and apologised for the space being so small. I smiled to myself as I could immediately see the silver lining here, in a bank of all places, signing papers! Thanks to one of the many peculiar symptoms of Parkinson's, micrographia  (abnormally small handwriting that is difficult to read) meant I was able to fit my signature with no problem into the small box allocated. The clerk doesn't know how lucky she was that I was very tired that day, otherwise she would have been subjected to a quick lecture, my usual performance of educating a total stranger about Parkinson's.

Positive word power

We are all aware that as soon as a word has been uttered, it cannot be taken back or erased. Words have great power and can do inordinate good or cause immense damage. Choosing words carefully, to ensure not offending or causing senseless harm to anyone and treating others how you would want to be treated, to my mind is foremost. Inappropriate behaviour or thoughtless inexcusable actions bear detrimental ramifications, causing hurt that often cannot be rectified. There are always consequences to flagrant abuse whether in words or actions, whilst painfully being received by others can in fact besmirch the character of the perpetrator. Thinking of others, putting a positive spin on what you say can make an enormous difference. Using positive words powerfully changes a situation, boosting morale for yourself and all those around you. The power of positive words can literally enhance life, making you a buoyant, vivacious person who all clamber to be around, simply because you make others feel good. I don't suggest for one moment that you put on an a false act or try to be a "people pleaser", for this would merely be a façade, that ultimately benefits no one, least of all you. However being genuinely cheerful and having positive things to say, to my mind makes all the difference to living the best life you can, especially when grappling with the on-going difficulties of living with any chronic disease.

Going into an optician's shop the other day, as we walked in, a throng of agitated customers clambered around the counter, urgency in their speech and causing the staff to become flustered, whilst others waited somberly on chairs. There wasn't a smile in sight, just an atmosphere filled with tension and anxiety. My husband and I waltzed in jovially laughing and greeted the sales lady who was under extreme pressure from her frantic clients. We calmly seated ourselves and waited patiently for the hubbub of people to dissipate. The saleslady eventually was free to serve us, and after much silliness and hilarity on our part, the atmosphere changed  drastically and we left the shop, the saleslady now smiling and far calmer than when we had first entered. This may sound like a small and inconsequential example, but sometimes it’s the simplest and smallest of things that really make a difference. 

Pursue your dreams

Life is short, and sometimes through no fault of our own, circumstances beyond our control, there isn't enough time to fulfill what we had planned and dreamt of. Each day is precious and not a moment should be wasted. The saying "don't put off tomorrow what you can do today" comes to mind, and I pretty much live my life in this vein. If you have a dream, don't put it on hold, waiting till the children are grown or you retire. Seize the moment and pursue your dreams. I have lost two brothers, one due to a tragic accident, another to ill health (Gaucher and Parkinson's disease) and although it has been some years now, the grief of losing siblings at far too young an age, stays with me like a sore gash that will not heal. My heart aches as if a very part of my soul has been wounded and not a day goes by that my brothers don’t enter my thoughts. Losing someone close has made me painfully aware of what is important and the things that matter most. Unconsciously my husband and I have made the decision to enjoy everything whilst we can, and not wait till later in life, for who knows if there will be a "later". We embrace life now, live in the moment and don't worry about what we don’t have, but enjoy the things we have been blessed with. If you have a dream that you can realistically pursue, don't delay, for "time and tide wait for no man". 

I'm a shaker!

It's funny some of the things people will come up and say to me. "You're a shaker" a woman abruptly told me, with a serious look on her face. I've heard fellow sufferers refer to themselves as being a "Parkie", but "a shaker" was a new one to me. Never having met this woman before, a little disconcerted at her comment, I replied "I do have Parkinson's, but the medications pretty much control the shaking." The woman shook her head in frustration and explained that she was referring to how I am passionate in speaking out, being unashamedly honest, and writing about every aspect of chronic disease. She congratulated me on my writing and told me I wasn't sitting still, quietly doing nothing, and to quote her - I was "shaking things up." I hadn't thought of it that way before - so I guess I am a shaker. Maybe that's why I gave my book the title of "Parkinson's, shaken, not stirred". Many have told me it reminds them of a well known line from the James Bond movies, as our handsome hero orders a martini, shaken not stirred. It's a little early in the day for a cocktail, but maybe later, as the sun goes down, my husband and I will sit on the patio together and have a drink.

First Aid

Statistics show that the majority of accidents happen in the home, and I can say with hand on heart, in our family, we appear to prove the numbers to be true. Over the years we have had to deal with an assortment of accidents requiring quick correct action, whether it be burns, scalds, cuts, bruises, sun stroke, sun burn, and many others for the list is long. Several years ago, my husband and I attended a first aid course, where amongst other things, we learnt CPR (cardiopulmonary resuscitation). I had wanted to take this course for years, as I believe everyone should have some first aid knowledge. You never know when or where you may need to apply first aid to yourself, family or friends, and complete strangers which has happened to me on several occasions. In many cases simple common sense will get you a long way, but learning first aid gives one the knowledge and confidence to deal with most accidents.

I remember one particular unpleasant incident which seems to stick in my memory as if it happened yesterday. I was attending to a young woman who was in shock after being beaten violently by her husband. Whilst seeing to the woman, I told my mother to call the police immediately, who soon arrived on the scene. The police woman took over from me and I was relieved from duty, as she was passed into professional hands and taken to hospital.

One hopes to never use what is taught in first aid courses, but it's reassuring to know what to do in the event of something happening.

I spend much of my time writing these days, and find that the publishing world has changed very much. My article this week on The Huffington Post addresses this issue.

Through a child's eyes

Today I'd like to tell you about another person who clearly has a great attitude, and certainly caught my attention. Andy McDowell who was diagnosed with Parkinson's, as a father he wrote an amazing poem entitled "Smaller" for his two beautiful little girls, describing the disease using simple language that young children can understand. It's not easy explaining to one's children about Parkinson's or any chronic condition. However, children are far smarter than we give them credit for, and if we take the time and trouble to explain in a language that speaks to them, they will comprehend quickly and the natural adjustments made in the family as the disease progresses, will be that much easier for all concerned. Again, it's all about education and informing everyone around you. It's not only the person diagnosed who suffers from Parkinson's ongoing effects, but the entire family. Take a look at this link and listen to a poem that touches your very heart.

Let me introduce you

I would like to introduce you this week to a few people who have inspired others with their determination, fighting spirit and tremendous courage. What do all these people have in common? I think you know the answer to that. They all live with Parkinson's disease. I say "live with Parkinson's" for this is what they appear to be doing; living their lives, making the best out of what they have been dealt, and giving the world role models - imparting an important message of hope. The human spirit can be powerfully strong despite one's physical weakness. Today I would like you to meet Brian Grant, a former NBA Rookie All Star who was diagnosed with Parkinson's at the age of 36. Not only is 36 very young, but just imagine for one moment an athlete who relies on his healthy strong body, how devastating and life changing diagnosis must have been. Yet here he is climbing a mountain with other Parkinson's sufferers. With determination and true grit they "power forward" and made it to the top. Brian, you are an inspiration to us all. Click on this link to see Brian's story for yourself. 

Home Treatment

Yesterday morning, the nurse from the company who make the medication I am receiving, arrived bright and early to administer my i.v. treatment for Gaucher disease. It takes approximately one and a half hours for the medicine to complete dripping at a slow rate, during which time I usually can't do much, whilst attached to my i.v. stand. I have known the nurse for quite a number of years and apart from her being a lovely woman, I admire her dedication and work ethics, not to mention the genuine concern she has for the Gaucher patients in her care. What I didn't realise until recently, was that she is responsible for Gaucher patients being able to receive "home care". Not only does this relieve hospitals of costly hours spent administering the enzyme replacement therapy in outpatients wards, but it is a huge improvement which increases quality of life greatly for patients. Instead of spending the best part of a day every two weeks in hospital hooked up to an infusion receiving the enzyme that Gaucher patients are missing, possibly missing precious time at school or work; to be able to receive treatment in the comfort of one's own home at a convenient hour, is of huge benefit to all. So should this modest wonderful nurse happen to be reading my blog this morning - I'm sure the many patients who have gained significantly like myself, would like to join me in saying a huge THANK YOU for not only thinking of "home treatment" but making it a reality.

Parkinson Education

I've often heard the phrase "location, location, location" when referring to homes or businesses! Well I don't know about "location", but after last week I can see that "education, education, education" is far more important. I received many comments and messages about my last article in The Huffington Post and wanted to reassure you all that I am not at death's door, and am feeling slightly better than last week which thanks to the care of my doctors there's been an improvement.

I purposely wrote a rather strong article, as a few things have happened recently bringing my attention to comments, that left me thinking how serious does the general public take Parkinson's. Despite a great deal of publicity this disease has received, I now wonder how much people really understand the suffering involved, and I wanted to bring home my message loud and clear, that this rotten disease is not to be taken lightly or dismissed.

I have spoken of the problem many times, how some people make assumptions and jump to conclusions merely from a visual picture. Just because someone is wheelchair bound, does not necessarily mean they are suffering. They may simply be disabled and unable to walk, but other than not having the use of their legs, they are in good health. If I were to stand next to someone like this, at a glance, who would you presume is the individual suffering more? Most just see a wheelchair and preconceived stereotypes make them come to the wrong conclusion. This is why I passionately continue to write, and be an advocate in the hope of educating those who badly need to wake up and pay attention. Parkinson's is not a walk in the park! It's a nasty, degenerative, life shortening, serious debilitating neurological disease, that for now, has no cure.

New Book Site

Inundated with e-mails from fellow sufferers and caregivers, I realised my book "Parkinson's, Shaken, Not Stirred" written from personal experience, could make a difference. Through my writing I am imparting an important message of support and hope to others around the world, letting them know they're not alone in their daily struggles. I have worked long and hard campaigning as an advocate for Gaucher disease and Parkinson's over the last few years, so I forged ahead alone, not wanting to waste any precious time in chasing illusive book agents and publishers. Recently I came across a delightful gentleman; a retired journalist and author with many years experience, who has created a writer's guild called indiePENdents.org - a global cyberspace organisation, especially for authors having difficulty getting their foot in the door of the traditional publishing world. Every book is carefully vetted; only those deemed worthy are accepted, and added to an on-line catalogue. The e-book market is flooded with unknown authors, so this is an excellent way of separating the wheat from the chaff. I would like to say a big THANK YOU to Jasha and Julia who have put a lot of effort, work and time into creating this amazing site. Apart from being delighted that my book appears under "Member Books" hopefully enabling me to further spread my message, there are many other good books of different genre; something to suite every taste, each one verified, upholding a high standard of writing. Please take a look and see for yourself the indiePENdents site.

Life's barometer

Never knowing when I'm going to have a good or bad day, family and good friends who understand Parkinson's' sudden unpredictable changes, like the fluctuating weather, are getting used to the ups and downs I experience. I should have my own personal "life barometer" hanging on the wall, showing what the conditions today are going to be. As a child I had a small weather vane housed in a miniature wooden Swiss chalet , where in good weather a small figure of a lady would appear in a sun hat, and if the weather was decidedly cold, a little figure of a man holding an umbrella would swing out taking the sunny day lady's place. How accurate this contraption was, I'm not too sure, for Britain is renowned for it's cloudy grey skies and plenty of rain no matter what month of the year. It's no wonder the fields and countryside are so green. Needless to say as a child I rarely got to see the little wooden smiling lady in her hat. I don't know if these charming weather vanes are still made today, but maybe I need to find a Parkinson's barometer. Does one exist? I doubt it, but if there was such a thing, my husband and family would find it awfully useful.  

It was brought to my attention the other day that despite great strides having been made in public awareness towards Parkinson's disease, there are still many people who are ignorant about the symptoms and how a person with chronic disease struggles each day. This prompted me to write "Defining Symptons" as my article this week on The Huffington Post.

What's normal?

Today is a new day - so I'll turn over a page from yesterday's sorrows and begin a new chapter. I unequivocally refuse to let anything or anyone bring my spirits down, my fighting life-force has kicked in this morning, and I'm back in full strength. So beware - don't mess with this Parkinson's patient!

Having ups and downs when suffering any chronic illness is perfectly normal. Living with Parkinson's, one's sense of normality keeps constantly changing. Every day is slightly different, there is no standard behaviour regarding this malicious disease, which like a mischievous child hyped up on sugar, one has no way of knowing what awaits a patient from day to day. When I come across someone unfamiliar with Parkinson's, they find it quite "normal" that one would shake and have tremors. Often I've been asked "Why don't you shake? Isn't it normal for people with Parkinson's to shake?" Well yes indeed for most patients it is, however there are some that don't shake but instead suffer from many of the other debilitating nasty symptoms that this disease has to offer. When I explain that my medications control the shaking most of the time, they then think, "Oh so you're OK then?" How far from the truth could that response be? How does one even begin to explain what is going on. I often want to throw my hands up in desperation, as I describe how dopamine normally helps control the shaking, but not always. There are no normal set of rules with this particular disease. The definition of "normal" according to the Oxford Dictionary is: "conforming to a standard; usual, typical or expected". Therefore the word "normal" is incongruous with Parkinson's. How can anyone judge what is "normal"? Does "normal" even exist, for we are all individuals, everyone is different, and wouldn't life be awfully boring if we were all the same? I think sometimes it’s a person's eccentricities and imperfections that make them the remarkable person they are. When someone or something is not "normal" - the fundamental "difference" is usually what makes life far more interesting. I'd opt for "different" any day over "normal". 

In denial

For the past few weeks I have had a pretty rough time, and it is starting to prove a little wearying to say the least. Fed up of feeling unwell and living constantly with pain, I have decided just for today not to think about my health. I am going to all intents and purposes act as if I'm in denial. I think after six years of keeping a stiff upper lip (as the British would say) and a smile on my face, I'm allowed to be in denial for one day. Today is just one of those days I don't want to hear anyone asking "how are you?", or "Do you need anything?" It is painfully clear to anyone who knows me, how I am feeling, or at least it should be. As for needing something - yes yes, I need a new body that is in working order, and if you can't manage that, then I'll settle for the winning numbers of this week's lottery. 

Suffering two chronic diseases I have to put up with an awful lot - more than you can possibly imagine, and sometimes, on occasion, something brings me down and life gets to be a little too much to bear. I have too many symptoms, some overlapping, leaving me unsure of what is attributed to each disease. I don't know which doctor to approach, unsure what is happening - is it Gaucher related or is it Parkinson's? Who knows? I should probably be in hospital, but don’t want to go. So I have decided that just for today I'm in denial, and will indulge myself by refusing to think about my condition. 

In pain, I spent precious energy and great effort yesterday preparing food, and making my mother's recipe for lemon meringue pie. I had no supper last night, as we waited for our guests to arrive, but after waiting two hours, realised they were not coming. By then it was too late for me to eat, as I had to be on a fast for a blood test this morning. Our next door neighbours ended up being the recipients of the lemon meringue pie, since this desert does not keep well. Writing this blog I sit here waiting for the nurse to arrive at 06:00 to take my blood, and then I'll be able to have breakfast. Upset, frustrated, in pain and feeling low, I shall concentrate my thoughts on ice cream sitting in the freezer beckoning me, and the garden that entices me to sit outside with my faithful dog by my side and admire my meager gardening efforts. Tomorrow is another day, and I'll no doubt be back to my old self and tackle it like I usually do, with cheerful optimism and hope.

I've got a screw loose

When my husband asked me if I'd like something to do, I was glad at the suggestion, for having been in terrible pain for nearly three weeks now, keeping occupied is becoming difficult, and I badly needed something to take my mind off the relentless pain. Not realising what he had in mind, I sat eagerly awaiting my new found project. As my husband walked towards me with a cunning grin on his face, lovingly clutching a large box containing many little compartments for nails, screws, nuts and bolts; I realised what I'd let myself in for. My husband who is quite adept at do-it-yourself skills, in particular carpentry, he must have every size and type of nail and screw imaginable. As you can now well have guessed, my task was to sort out the messed up compartments putting all the same type and size together. Although far from an exciting or stimulating activity, it did keep me occupied and my mind off the pain, and was a great exercise for dexterity in my fingers on the one arm I can still use. After an hour, I had finished my assignment, only to find he had more boxes like this. Every time I would finish with one, yet another would appear, as if they were breeding in the dark recesses of his tool cupboard. My husband now has the tidiest and most orderly tool cupboard, but next time he asks me if I need something to do, I shall first ask what he has in mind before merrily agreeing, otherwise he'll think I've got a screw loose! 

Get organised

I have always been very tidy and organised, which comes quite naturally to me, although some may scoff saying its the sign of a sick mind! In our house there is now a place for everything and everything is in its place. In our laundry room, like in most households, an array of odd items are stored out of sight yet are regularly used and need to be easily assessable. We found opaque plastic boxes with lids and have labeled each box, clearly identifying its contents. Anyone who requires the first aid box, or anything else, has to merely look on the shelves and will easily find the relevant box. This is of great help especially when having guests to stay or an extra pair of hands to help around the house. The same applies in our walk in wardrobe. Again shoes and other items are in boxes, making the most of every inch of space and being orderly it's easy for anyone to help as everything is labeled.

Clearing out and getting rid of any item that is broken, no longer used or wanted makes room for the things you do need. Over the years we are all guilty of accumulating unnecessary clutter, and if not dealt with, it can literally take over a household. You may well ask why am I talking about clutter, and what has this got to do with being disabled. It's a matter of safety. In our previous house we were overflowing with belongings and had little storage, cables dangerously on the floor everywhere and due to my lack of balance, I fell many times. I am fortunate not to have done any serious damage. Since moving house, now with the ability to keep things tidy there are no items left on the floor; instead wide clear spaces to walk without tripping over things. I haven't fallen once in our new home (maybe I shouldn't tempt fate and speak too soon!). So not only does our home now look pleasing to the eye with no clutter, easier to maintain and keep clean, but is far safer for me.

Home care

At some point, home care may become necessary when suffering a degenerative disease. Whether it's having someone come to your house for several hours a day, or live-in full time help, this is a huge step and a difficult one to accept emotionally for patient, caregiver and other family members living in the house. Also the financial ramifications can weigh heavily on a family if the decision to bring professional 24 hour  help in is made.

Day time help if only for a few hours each day, is less intrusive to one's family routine, but if a full-time care giver is required to live in the family home, a comfortable and suitable bedroom preferably with it’s own bathroom facilities should be taken into account and made available.

Having a stranger in one's space, helping with the most personal basic daily procedures, can at first feel like an infringement upon one's privacy. It doesn't bother me being undressed or showered by another person, but more the fact that I require this help at all, is physiologically hard to deal with. Swallowing one's pride, and allowing someone to help shower and getting dressed is a hard pill to swallow.

Someone asked me the other day why I don’t have a lady to help me. I tried as best I could to explain I haven't reached that stage yet. I fully realise that a day will come when I will have no choice, but until then, I will manage as best I can with the help of my husband and daughter. I'm stubborn and determined to live as normal a life as possible. It's hard for those to understand, who are thankfully not in my position, and although it's only logical and sensible to employ someone to help, it takes time to accept these unwelcome changes along with the emotional disturbance and upset this decision would cause. It's very easy for others to tell you what to do, but they are not in your shoes, and giving out advice, however sound it may be, and with good intentions; if at the wrong time, is not welcomed or appreciated. 

Nordic Walking Poles

I was given a pair of Nordic Walking Poles recently, and having heard about this, and that some Parkinson's patients were finding a remarked improvement with their walking, I decided to give it a go. It's much harder than it looks, and getting the movement right takes quite a bit of practice. My co-ordination is not what it used to be, and I found it quite difficult to tackle. I would be interested to hear from anyone with Parkinson's who is using Nordic Poles and if they've felt any improvement with their walking. 

I am sorry I cannot write more this morning, but my present condition is not good and a very painful shoulder and arm are making it extremely difficult to write. So you'll have to forgive me this morning for my short blog. If you haven't already read my article this week and would like to read a little more, take a look at my piece  on The Huffington Post regarding independence.

Independence Day

It is clear what the 4th of July signifies to anyone in the United States; Independence Day, celebrated with families coming together to share in a special meal, parties and fireworks, a nation remembers its past and looks forward to a bright future. Independence day can mean a number of things to different people. Recovering from surgery, the day one is able to go to the bathroom by oneself may sound insignificant, but is a huge step forward in recovery and giving one back the feeling of independence. Having a car modified for a disabled driver, the vehicle literally becomes the legs of a person enabling not only independence but a sense of great freedom. For someone highly disabled and wheelchair bound, the difference between a regular wheelchair where someone is required to push, and receiving an electric wheelchair in its place, again the independence gained is huge and increases the quality of life considerably.

Whatever independence day you are celebrating, whether it be a National Holiday or a more personal achievement, enjoy your freedom and treasure your health - a precious gift which is often taken for granted.  

You'll have to forgive me this morning for my short blog. If you'd like to read a little more, take a look at my article on The Huffington Post regarding independence and what it means to different people.

Parkinson's Exercise

The old saying "no pain - no gain" is a definite "no no" when it comes to anyone suffering from ill health. As my physiotherapist told me a long time ago upon one of my first sessions, "if a certain exercise or movement hurts - stop doing it!" Good advice indeed and particularly for me where my issue isn't just merely Parkinson's but is compounded by having Gaucher disease, leaving me with painful joints and delicate bones. Exercise is however very important for anyone with Parkinson's, for we all know how rigid and  painful muscles and joints can become, especially after a night's sleep, a journey in the car, or simply sitting at a dining table for an entire evening. If you have the ability to join a group especially for those suffering Parkinson's, then this is ideal, as you also benefit from the social aspect. But if like me, you are isolated, and don't have the ability or facilities, there are many simple safe exercises you can do in the comfort and privacy of your own home. Take a look at this clip on YouTube which may be of help to you. Thank you Sherryl for taking the time and trouble. Your advice, experience and input are much appreciated by the Parkinson's community.

How to stay cheerful

I am asked time and again, "How do you stay so positive and cheerful?" This is a question I will try to answer as best I can. Living with two chronic diseases, it most certainly isn't easy, and I have to admit there are occasions when it all gets just a bit too much, even for me. No one can remain smiling and happy every moment of each day, it's not possible and quite frankly it would be a farce. Luckily most of the time I manage to keep a sunny disposition and have a smile on my face. I have been this way since I was a child, so it is deeply inherent. I think some people are simply born with a positive outlook, (or as I refer to it, having the "happy gene") but I believe one can make a conscious decision to put on a brave face, smile and look at the glass half full. There are many things in life we have no control over, and most certainly ill health is one of them. By changing your mindset, and vanquishing any negative feelings, not allowing yourself to indulge or wallow in self-pity; find your inner strength and focus on good thoughts and things you have been blessed with. No one wants to be around a grumpy sour faced moaner, so if this is you, change your attitude before you find yourself quite alone. You have the power and ability to wake up this morning and decide, enough moaning and complaining; make a change in your approach and you'll find life will be much easier. Don't get me wrong, you'll still have Parkinson's and your symptoms and medications will be exactly the same, but you'll find your positive vibes will start to have an effect on all those around you which will ultimately bounce right back at you. Your doctor will have more empathy for you, and family and friends will genuinely want to spend time with you.

Parkinson's becomes popular

A friend of mine who has Parkinson's is going through a rough patch at the moment and I think anyone suffering PD can relate to the emotional and physical turmoil we endure when our present state is compromised. My friend is a wonderful woman with great strength of character, sparkling eyes that reveal her marvellous sense of humour and like me, she has a fighting spirit. I'm sure you would all join me in wishing her well, and hope she'll soon be able to put this difficult period behind her. I write today's blog in her honour and hope it brings a smile to her face.

It is only natural as children, most of us wanted to fit in at school, and hankered to be part of the cool group, the popular kids. As a child I was very short, (still am if the truth be told) and was very pale, often missing school due to ill health, I was definitely not "popular". In fact, I'm quite sure if any of my former class mates were asked today, none would remember me at all. Speaking with my friend who has Parkinson's, she made me laugh so hard my sides were aching, as she said "We have a popular disease" when in fact she meant to say: 'a common disease'. Upon reflection, she may have been right, as due to all the hype that Michael J. Fox and his Foundation have brought to our plight, in turn it has spurred on Support groups and individuals around the world in making as much noise as possible. Therefore Parkinson's has become in a way a "popular" topic. I find that more people are talking openly now; much exciting new R&D is going on around the world, often stories being told in the news, hopefully resulting in the general public being much more aware than before. So I may not have been popular in school, but I now have a popular disease!!!