Grandchildren

Photo of the three boys busy with cardboard boxes..who needs expensive toys.......

To a person in my position a child can evoke a whole range of emotions. When that child is a grandchild and you are able to see him or her on a daily basis then life becomes enjoyable. We, Jan and I are lucky enough to have not one but three grandsons ranging in age from almost five, two years and the youngest of eleven months. Their names are Kaleb, Luke and John Mark.
We have the pleasure of their company five afternoons a week when Jan picks them up from day care. When they come in the door to where I am there are mixed reactions. The eldest, Kaleb, heads for the toys. Luke has only one objective in mind, food, and heads for the fridge and the baby of the three is quite happy to bumble around on the floor. He is almost walking and it is delightful to see him holding onto his Nana’s hand and taking those first tentative steps forward .
It is only a short while later and the lounge floor has become a disaster area with boys, toys and empty cardboard boxes. Books are found in quick succession for Nana to read to the two oldest boys while baby has decided to investigate the drawer handles of the china cabinet.
John Mark see’s Nana with a bottle and makes a bee line for her moving as fast as he can on all fours. He can now hold the bottle himself while resting on Nana.
It is a constant joy watching the boys interacting with each other. A large cardboard box has been played with for over a week, being used as a slide, a tunnel and something to play in.
Kaleb and Luke are now on the floor and John Mark joins in the rough and tumble. Their parents arrive and a short while later after hugs and kisses calm settles into our lounge as the children head home with Mum and Dad.
Where would we be without children to love. Be it one child or one of many a child can bring peace, love, joy and a calmness of mind.

Children the world over can in many instances regardless of where they live bring stability to a family. To watch a child's face at such times like Christmas and at birthdays is a landmark of family life. They also have the remarkable ability to accept at face value the fact that someone is sick.
Children can teach us adults so many things about life…..

Bonus

When we approach the cross road of life some of us are in the position of knowing, all be it approximately, of when that time will be. The two and a half years that I was given will be the middle of next month and I fully intend to exceed that period of time.
I have met, via the internet, some remarkable people and count myself privileged to have made contact with them. And I refer not only to people with ALS/MND but to those of you who are our hands, eyes and ears. Without your help, your dedication and caring, be it personal or professional, people like me would be in dia straits. And it is also to our partners/spouses who in many instances put their own medical needs behind them that we must thank.
A person with a disability needing support and help should be able to access that help twenty four hours a day, regardless of their location in this world. But we all know that this is not the case.
To anyone diagnosed with ALS/MND you ask why !. And the answer is simply, we don’t know why. Some of you may question ‘higher powers’ but to most of us, like myself, there is no way that I can change what mother nature has done to me ,so, I accept the condition ( knowing the ultimate outcome ) and get on with the job of living.
Alright, I can’t walk anymore, eating is a problem, I have moments when my breathing is compromised by shortness of breath, hands are becoming more difficult to use, ie, need help dressing and undressing, bathing etc..
Using the computer is also harder to do. As of this moment I am a one finger person. And I am coping. Another problem now is that the weather has got so much colder and keeping warm has become a priority.
I have every reason to feel sorry for myself, but my disability, condition, call it what you will, is minor. There are other people out there on this planet who are far worse of than what I am and my heart goes out to them.
I will give an example … two men here in NZ in the last eighteen months have had their lives ripped apart by loosing limbs in recycling machines. What these men have had to go through since is mind blowing so you see, I have nothing to complain about.
I continue to take every day as it comes as a bonus …..

Bipap... pro's and con's

The last couple of months has been interesting in the extreme what with having a cold and generally feeling somewhat ‘flat’ and then having to undergo chest x-ray, lung function tests and blood been taken to check for oxygen levels etc. Lung tests I couldn't’t do simply because I didn’t have enough puff to blow into all the different tubes. And my medical team want me to spend a night at the sleep clinic to see if I need a ‘Bi-pap’ machine to help me sleep at night.
At time of writing this my sleeping pattern is OK…I don’t have any trouble with breathing while asleep so what the heck…
The question I would like to ask those of you who have such a machine is how do you cope with it and more to the point how do your spouses or partners cope. What is considered a good night when using a Bi-pap and and are there side affects.
The next question I want to ask is do I go ahead with it. I (we) need to make a decision sometime soon…. In other words what are the pro’s and con’s of using a Bi-pap.
I know that one affect is to help give a quality of life to an individual with breathing problems.
UPDATE ON MY CONDITION..
I have talked about the Bipap… I haven’t eaten solid food for I don’t know how long now. My main diet is Fortisip and I try to average four a day, I should really try for six.
I am still able to stand upright and walk with ever increasing difficulty so not bed bound yet. Dressing I need help with. And my speech is becoming harder to hear so now have a speech amplifier which I can wear at home and when going out.
I spend most of my day now on my electric lazy-boy chair watching TV or resting. I have had the odd person email asking if I am Ok due to the long gaps in my blog so am trying to remedy that now.
Recognition of our disease and all of the conditions that go with it is still not understood by the majority of New Zealanders and that I am sorry to say includes the medical fraternity.
Preconception of our condition leaves a lot to be desired . So often do people associate MND/ALS with MS and they are two very different ailments.
TO BE CONTINUED…