Love....Those three words....

Throughout all of time we, the human race, have uttered, on a regular basis, three words. Those words regardless of the language spoken have meant so much to so many people that I think the world would come to a grinding halt if we were to stop saying them.
We survive and live according to these words. In a world where so many people have disabilities it becomes very important, especially among the elderly, to not only to be able to say these words that mean so much but to know that they are reciprocated .
In a society where we act on the knowledge that all people have a need to to be loved these words are basic to the way that we live. Without love there cannot be a common ground for the development of family life. There would be no communication, no ability to be able to interact with family members and we as a race would stagnate.
Love is to be found in all peoples, all ages, male and female. It has been been with us since time immemorial. Volumes have been written on this subject. You can find it carved into stone tablets in Ancient times, many films have been made and where ever you go you will find it.
It is with you for most of your life and can be found in the most inhospitable places on Earth. Not only do we as humans live for love we also die and kill for love. Love need also not be relegated to us alone. You will find that most animals have some sort of love, a bond that will keep them together. But peculiar to mankind only there is the love for inanimate objects. We love to give names to things like a boat, a plane or maybe a car. We are capable of loving so many things that the list is endless.

What are these three words that I speak of....in Dutch..Ik houd van u. / in French...Je t'aime. / in German...Ich liebe dich. / in Portuguse...Eu te amo. / in Spanish...Te quiero............ They are of course.. I love you......

What has any of the above got to do with the fact that you/I have Motor Neurone Disease...everything. When being diagnosed with MND you think of all the people in your life who you have said these words to, your partner/spouse, children, family members and friends. I need to hear those words to reassure me that there are people out there who care, who will say ,'I love you' and for myself to know that they mean what they say.

I have that reassurance and would like to say back...I LOVE YOU ALL and thank you....

What do you make of life...

What do we as humans think of life... Do we take it for granted that we will, despite all the hardship, war, hunger and disease that goes hand in hand with us that we will survive and live to a ripe old age. Do we learn as we grow up that out of all that plagues humanity there is an eagerness, a desire to fight back, among some of us, and that this desire, this striving for a good life, a life free of all the above is to be had at some cost.
The cost comes not in wealth but the lost of will-power, health, dignity and the ability to have what is rightfully yours/ours.......LIFE.
We all love life in many ways and with me it is now the right to be looked at as a person who still has all his faculties, still able to hold a conversation and not looked on as someone, who being in a wheelchair is a wee bit gar-gar. Not so.....Just because I / you, use a wheelchair does not condemn us to a lower standard of living, as a person to avoid in the street or someone to poke fun at.
We are all human and we all have the same basic fundamental right to be individuals, regardless of our sex and age. Who is to say that because I have Motor Neurone Disease I no longer have that right. I DO and so do you. Claim what ever you can out of society and take anything that will make your daily living easier. Enjoy what you can, go out and travel, see the world ( as someone I know of with MND is doing) and know that regardless of the severity of your disease that there is a time and place for all of us in this race that we call Man. Even the simple act of going for a 'walk' in your chair, maybe with your spouse / children or even the family dog can bring to you peace of mind and a breath of fresh air.
It is the fact that you can get out and into this flow of humanity and know, that without any doubt, on your part, that you belong. I BELONG and it is that feeling that will keep me going, knowing as I do that my body is slowly deteriorating, that I will become at some stage house-bound and maybe bed-bound .
But I also know that I am not alone. I have many friends in a like situation and that together we will win, maybe not the fight for life, but the right to be one of the human race and face whatever comes our way with determination and dignity and to be proud of who we are ..

If we have the love of family and friends and their support what more can we ask for in life...

My Wheelchair......

Imagine if you can a world where every man, woman and child was confined to a wheelchair. Where every building, all means of transport and all occupations were adapted for ease of living. What would the average lifespan be of a human in that sort of environment. Where a person who was able to walk on two good legs was considered to have a serious medical condition and the ability to walk was unnatural.


The implications and ramifications of such a world are in the realms of SiFi and would be in the extreme to say the least. When you consider how hard it is in today's world to even negotiate a simple footpath and to cross a road, to get into a public toilet or restaurant or to be able to drive a car. When the reality is that to have a wheelchair you are considered to be self reliant and to be able to look after yourself.
That sort of thinking is OK if you have the self confidence and the ability to be able to do just that, look after yourself. Because if you don't, who will. How many city councils around the world get repeated requests from wheelchair bound persons to do road and footpath modifications, make buildings easier to access or to even have a house suitable for wet areas.


How many people in our situation have to dive into what little savings they have to be able to have the quality of life they require, to have the support of local councils to make wheelchair living a reality and to know that any requests for modifications will be heard and acted on. To use a chair, manual or power on a public footpath would be the biggest headache that faces most people. How do you go from path to road and back again with out damaging not only the chair but yourself in the process and at the same time not be a menace to road traffic and other people using the footpaths...I think you learn, like me, that it is a case of self preservation. And maybe a little humility.
Where I live there are large numbers of people with Power chairs and Mobility scouters and many different makes and models. If you are lucky enough you have a team of people who will help set the chair up for you. Once that is done you are on your own.....


I now have a 'Power Chair"...a Pronto M71 Sure Step and love it. It was alright having a manual wheelchair but when you upgrade to having a motor under your legs, wow, what a feeling. This has now given me, like anybody else in my situation, a whole new outlook on life. I am fully independent ( as long as the battery lasts) and now able to participate in anything I choose to do. I just have to make sure that I am prepared for when I do go out that I have a means for calling for help, protection from the weather and that I don't act like the footpath is all mind. ( I mean to say that I could but where would it get me ).
Alto I have had the chair for only a few days I can see already that it will be the means to an end. To live in a society where you are accepted as a person in your own rights and to be treated as such is really great.
I intend to enjoy my new freedom from restriction of movement ......WHEELCHAIR POWER...YEAH

Footnote.... Earliest found image of a wheelchair was found incised in stone on a Chinese Sarcophagus in the 16th Century.

The Wedding

30th December 2006


Photo on the stairs is Isaiah, my son Phil, John, his best man Andy and myself.

It was a great day. There was a very early start for Tania and the two girls as they needed to have their hair and make-up done. John had stayed the night with a friend and arrived back at the house with Isaiah about 9am. Got all his outfit ready and waited for the best man to turn up who was going to follow us to the Wedding Venue. Jan's sister Mary was also picked up by John .

We arrived at the venue just on 10.15am. I was taken by car with my wheelchair down to the garden where the wedding was going to take place. Everybody else made their way by foot and then it was a matter of waiting for the bride to turn up. Shianne was also bought down by car. The weather just before Tania turned up was overcast, cold and looking like rain any minute. A black cat walked down the gravel path just before Tania, went over to where John was waiting on the lawn and the Cellebrant said "What a good omen".......

Tania came into view looking radiant in her beuatiful gown, stepped onto the lawn and the weather changed into brillant sunshine and stayed like that for the rest of the time we were at the venue. Both Tania and John were very happy and the children were also good as it was a long day for them.
Jan and I would like to take this moment to wish Tania and John, long life, Happiness and to be not only man and wife but best friends. We are very happy for them....
MAY YOU GROW OLD TOGETHER AND YOUR LOVE NEVER FALTER...MAY YOUR CHILDREN HONOUR YOU AND KEEP YOUR FEELINGS FOR EACH OTHER STRONG AND PURE. LOVE LIFE.........

19th December Xmas Dinner

On the 19th December 2006 I along with Moira-Anne were picked up by the New Zealand Police and transported to the 'Skyline Restaurant" at Number 1 Upland Road Kelburn, Wellington from the 'Te Omanga Hospice' in Lower Hutt. Patients of the Hospice were being shouted Xmas Dinner by Peter and staff of the 'Skyline' and what a wonderful day it was. The weather was perfect and so was the meal.
On behalf of myself, Moira-Anne and patients of the Hospice many many thanks for making this a day to remember.