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!!!