28 Years..........

I would like to thank a person who has been an integral part of my life for the last 28 years...To Jan, my wife. She has been and still is the light in my life, my lifeline and so much a part of me that I can not imagine life with out her.
She is a woman of whom I am intensely proud of in what she has done for our family, our two sons, their respective wives and children. She has not only been a mother, grandmother and wife to me but she is also a person who has earned our collective respect and admiration for trying to run a business and look after me at the same time.
We all have our ups and downs, some more so than others but it is the way that we handle a difficult situation that differentiates or sets us apart. Jan has had many decisions to make in our 28 years of married life, some of them hard but she has coped well. Like any family our children ( now married) have turned to Mum and Dad for help on the odd occasion and being the people we are we will ( and have ) bent over backwards to put their welfare ahead of our own and that is what being parents is all about.
And that is one of the reasons I am so proud of her. She is a mother first and foremost then a wife to me. I would like to think that we, Jan and I, will have many more years together but I have to be realistic and take what ever time we have and enjoy that time, with each other and with family and friends.
So, I take this moment to declare to the world that I LOVE and respect Jan for everything she has done for me and for others and that the future, though it looks black with MND hanging over us will not stop or diminish my love for her. I know that as time goes on she will have the support and love of our family and friends for when I am no longer here. That she will carry with her always the feelings, the hopes and the desires that we have for our respective sons and their families.
I have no animosity towards nature for giving me MND. I believe our paths are laid out for us at the moment of birth and this is my path and I will and have accepted it. Jan has and is learning to live with it but like many people she must have moments when the question 'why Robert' hunts her. All I can say is stay strong, carry my love with you and wear it like a cloak. Be proud but most off all show the world that you are who you are.
Thank you my love for sharing your life with me. I treasure the ground that you walk on. Thank you for giving me two sons and thank you for being the person who stole my heart......married 28 years on 17/02/2007.
I LOVE YOU.......

ALS/MND Consortium

There are many organisations in the world today devoted to ALS/MND . Most of them you can find on the Internet. But, there seems to be no cohesion in the different organisations. no unity. Each acts independently of the other. You can spend hours looking for a world wide body committed to dealing with ALS/MND and there is none, well, none that I have found.
What I would like to see is a world wide unilateral Consortium made up of members from every country in the world. There would be a Governing body with a board of directors and a CEO.
I have just been looking at the pile of notes that I have compiled for this entry and realize that on this subject I am getting in way out of my depth. So, to make things as simple as possible I will outline, very roughly, my ideas.........
The members would consist of specialists in every field of the medical profession who deal with ALS/MND...( this would include National Health Boards from each country) . There would ideally be at least two to three Representatives from each field. I would also like to see an International Bank account set up funded by large Company's and or individuals, again from every country. The reason behind this is that we, the person who has ALS/MND face a problem worldwide. Speaking for myself my wife and I are in the difficult position of not having enough funding to buy a house that is suitable for wheelchair access with wet areas etc.
We would in that case apply to the Consortium through a National Office in our own country to get the funds needed to acquire a suitable house. This again would also apply for the acquisition of any mobility device to help one get around. I know that it is difficult in some countries to get anything for helping with the general day to day task of living and that a lot of people have to wait many months for what they need, ie a power chair for instance.
In the area of research each country would provide details of any findings to the Consortium and that information would be accessible to all members. This will give uniformity world wide in that area. As with other sites on the Internet there would be an international 'Chat Room' maned 24/7 by volunteers.
Another thing that I would like to see ( and the logistics of setting it up would be a nightmare) is to have a data base set up so that every body who has been and who will be diagnosed with ALS/MND goes into this. This data base would again apply to all countries registered with the Consortium and would be accessible to all Medical facilities. Information in the data base would be correlated to provide up to the minute statistics (world wide) on all types of ALS/MND, the Sod1 gene ect. could be invaluable to research being done and would be open to all Organisations in the Consortium. The demographics alone on say just the age of people would again be invaluable. And all individual / personal web sites would be asked to join the Consortium. There are at the moment a lot of people on the Internet, like myself, who have a web site and I have no worry about who reads it, the more who do then the better for me.
I would also like to see Parliamentarians from all countries represented on the Board. so, in a nutshell, all sites on the net at the moment dealing with ALS/MND would be in the Consortium.
I personally believe that this would bring uniformity and cohesion to the Internet sites. Instead of being scattered all over the place everybody would be under one umbrella. But, am I dreaming of the impossible. I have seen a lot of names of people, on the net, who would be ideal in running something like this and one in particular jumps out at me. Many of you will know him from several different web sites. His name is Dr. Paul Wicks from England. ( Sorry for dragging you into this Paul)............

ALS/MND comments in my Guestbook...

Over the last few months I have had numerous people signing my Guestbook and saying, ' what a remarkable attitude to life that I have'. I would like to say in return that I have read many blogs and web sites written by people, like myself, with ALS/MND and that I have come away feeling very humble and proud to know you.
You have blogs written by sufferers and care-givers and in most cases beautifully done but regardless of who have written them they are the representation of ones life, their battle over conflict, pain and ever-lasting disability and their fight to be heard by ones Nation/Country.
We, you and I, have enough to do just staying alive with out becoming embroiled in lengthy discussions on what should or should not be done for us. Most countries in the world have some sort of scheme going whereby money is raised for ALS/MND Associations and or individuals.
New Zealand in my opinion ( and it is only my opinion) is sadly lacking in this department and if it were possible I would get National Sports teams interested and have charity concerts, runs and walks for MND and generally get the New Zealand populace involved in raising awareness of what is happening to us.
We, all those who suffer from ALS/MND belong to an elete association and there are more joining every day. So, in my opinion having a blog/web site can only be good for us. It gives us, as individuals, a lifeline ( excuse the pun ) and a means of keeping in touch with fellow sufferers You can share your emotions, show compassion and discuss at length what we would do if in power towards helping all those with ALS/MND, or any disability and to generally make life just a little bit easier for us.
Thank you again to all those who have signed my Guestbook and keep checking in for new updates.............

Footnote...In Wellington, New Zealand we have an organisation called 'Skylight'. Skylight supports children and young people who have been affected by change, loss and grief. Please have a look at their website www.skylight.org.nz