This last year......

Well, here it is almost Christmas and for me (my first of extended life) will be a time for family and friends to get together. It has been a strange year, not one that I would have chosen for myself but in that I had no choice. And that is the way things go.You may plan for certain events to take place but the reality of the exercise is that you take what ever is thrown your way.
I have had my ups and downs, like you all, and have conceded that my life, as I know it is no longer in my court, so to speak. Family have been shocked at what has happened as likewise friends. And like so many people out there some were not sure what MND was. It is a disease that so often is confused with MS but as we know the two illnesses have separate paths.
It has been a time to get used to the fact that my legs, in all probability, will be the first to go and to that end over the last month have noticed that they are getting weaker all the time. I have had six falls, the last two only in the last week ( and on the same day ) and they could have been somewhat nasty as my left foot tried to roll forward and at the same time the knee gave way and down I went, backwards. Like my friend Moira-Anne we do these falls in such a manner that we do not hurt ourselves, and by all rights we should . My wife saw one of them happen and she said it was so graceful and almost in slow motion.
Also have had some problems with the fingers on the right hand cramping up, more so when I am on the computer. Jan and I have had several trips up the North Island to New Plymouth to see our son John and his partner Tania ( not long now to their wedding ) and her three children. We also did a family reunion down in the South Island and that really bought it home to me just how this disease affects me. The emotional roller-coaster ride that I went on the four days we had at the reunion was amazing...the tears were almost continuous. But having said that it was most likely the best time I have had since being diagnosed. And having a wonderful wife along side me sure helped.
All in all it has been a time of reflection, decision making and coming to grips with what I have. And the time for Jan has in all probability been harder for her. What with trying to run a shop almost single handed, staff problems and trying to make sure that yours truly behaves himself when she's not at home ( doing the vacuum cleaning yesterday almost killed me) is not the easiest thing to do.
So, walking, cramping and crying aside, how am I. I am at this moment in time quiet happy, calm and looking forward to a new power-chair which by the sounds of it I will have by Christmas , a wedding to go to and Tania, my daughter-in-law to be has told me I am having a dance with her on the day, that should be interesting he says with much laughter.
I still have my afternoon tea one day a week with Moira-Anne, a wonderful woman also fighting this disease.

And above all else I remain positive and look to the time ahead of me, not as something to dread but as a time to help those like myself enjoy what ever time they have with family and friends, get out into the world, if only by the Internet and to raise, somehow, peoples awareness of Motor Neurone Disease.
ENJOY YOUR CHRISTMAS AND HAVE A HAPPY NEW YEAR.....

Christmas Cheer.......

Its that time of year.....

Jan and I would like to take this time to anyone reading my blog to 'Wish you and yours" a very 'Merry Christmas and a Happy New Year'.
The local branch of our MND Association had a Xmas morning tea. A very nice time had by all who attended.

I intend to make the forthcoming year a time to remember, to take photo's and compile family histories for those who I will be leaving behind. It will be a year NOT to be sad but to think of all the good times had by me and my family & friends, old and new. A time to reflect on what could have been and a time to enjoy what I have.
To continue 'talking' to people on the Internet and make more friends. To do my best in trying, somehow, to raise awareness of our condition here in New Zealand, but above all else keep my positive attitude strong.
So, I will also take this time to thank everyone who have left a message in my guestbook. Some of your messages have been truly touching. I am just a guy telling people how it is and I think for anyone to do what I am doing, with honest feelings and thoughts is really an indication of the true spirit of a human being. I am but one person in a world where MND/ALS is prevalent and if by writing a blog like this helps someone, then so be it.....

Tears.........

Tears are like early morning dew drops...

They are the window to how we feel at any given moment in time and an indicator of the bodies well being or weakness. They have been described as the 'Jewels of Life' and you will see them where ever you go in this world of ours.
Tears can be found in all of humanity and it is with tears that we, as humans, show our anger, sadness, despair , joy, happiness, laughter etc... Where does it all come from.
One of the conditions of our illness is that ones emotional levels can be a lot lower than usual and with me personally has been quiet obvious. Its just another facet of my everyday life that I have had to accept and I can live with that. I have had my fare share of tears, openly and in public.
And it is a fact to of life that in some parts of the world grown men do not like to be seen crying in the presence of other men or women. But, we are growing out of that attitude and public awareness in most parts of our society will now accept public showings of emotion in men. I am not ashamed to show my emotions......
As a note of interest...no matter what the colour of your skin, be it white, black, yellow or brown, tears are made up of the same clear liquid.
Tears, like laughter, can be contagious and if we, as a race, are unable to release our emotions in the form of crying then what other way can we do it.
So, do not bottle in your tears, cry openly, with family and friends and you will find ( I do anyway ) life is so much easier, even if you do have MND/ALS. It is a great way to find relieve.

Soon you can shop for synthetic tears Shirish Joshi

AS every one knows, tears play a vital function in helping to lubricate the eyeball and keeping it clear of irritants. They also help us to keep our eyes healthy.
Dr John Tiffany, from Oxford University, UK, and his colleagues have discovered the unique combination of ingredients that make up human tears and have patented the combination of proteins and fats that are present in them.
Tears are drops of clear saline fluid that are diffused between the eye and eyelid by the lachrymal or lacrimal gland. They moisten the membrane that covers the eye and facilitate the movement of the eyeball and eyelids.
Tears are also secreted as a reflex response to various stimuli, including irritants to the cornea, like the chemicals given out by onions when they are cut and peeled, bright lights, and hot or peppery substances like chillies in the mouth.
Tears secrete anti-bacterial agents that break down harmful bacteria before they can cause infection. They also provide oxygen and nutrients to the cornea, or surface of the eyeball, which has no blood supply.

Dr William Frey working at the St Paul-Ramsay Medical Centre in Minnesota, USA, has carried out some in-depth research into the chemistry of tears.
Recently, Frey’s team discovered several hormones in both tears and lachrymal glands that are known to be released by the body in response to emotions and stress.
The discovery of the particular combination of molecules that make up natural tears could result in the production of eye drops that are better able to perform all functions of natural tears.
Dr Tiffany hopes to use his formula to develop new medicines that will eventually help people who suffer from an inadequate supply of tears.
Dry eye disorders are painful and annoying, and eye specialists have no complete cure for them. The currently available eye drops only soothe and lubricate the eye in various ways.
However, Dr Tiffany feels that much more research and clinical trials have to be carried out before the product can be made available to the public. Extensive safety tests will also need to be carried out.
Synthetic tears would not be suitable for people who suffer from milk allergies, because they are based on proteins found in cow’s milk. Anyone who is not allergic to milk can use synthetic tears. But the tricky part is that not many people know that they are allergic to milk.
The product will also have a practical shelf life as proteins can easily break down.