Emotions....

How do you express your emotions in a way and manner that other people will understand. Emotions that flow like waves in an ocean full of obstacles that stand in the way of how we, humanity, deal with misconceptions of medical prognosis .
Anger is generally the first feeling that one has, followed by bewilderment and the thought that here we are, being diagnosed with a terminal illness when you know without a doubt that there is nothing wrong with you and that a simple course of medicine will return to you the full use of your bodily functions.
Medical practitioners have a hard road to follow that is made harder when you wonder what is going through our minds, when we have had time to consider the consequences of our prognosis and know that there is no mistake and that the person who has just changed your life has gone down this path many times before.
Misconception only comes into the equation if the diagnosis is wrong. And with ALS/MND that does happen on occasion . It is sometimes many years before a correct diagnosis is made and it is the intervening time between those visits to your Doctor/s that the damage is done.
I was lucky in that I had a Doctor who had dealt with many people with MND and he knew the minute he saw me what the likely problem was. Also the fact that I was spotted early on in the piece.
Emotions…there are so many that we have and we all without fail act differently to our given situation depending on our age and degree of ailment. There are so many factors that come into how you react . Family situations are ( I think ) the main source and right at this moment in time my/our situation is becoming difficult in that my walking has deteriorated to the point where I no longer feel secure with just my stick. I do use all the time in the house a 'Gutter-walker' or walking frame. The only 'safe' way for me to get around the house without falling over....
What happens when, and the time is not that far off, that I find going outside on my own is longer possible. Chair bound and or bed bound. I know its coming but I would rather just not yet.
We, Jan and I, are still trying to sell our shop, that also is not going well and only compounds the issue. Same with our living conditions. Try living in a small three bedroom house, no room for the power chair so that has to go into the garage. This means my walking outside to get the chair, hmmm. Bathing is also getting to the point where safety first will also become an issue.
But we are managing, just.
UPDATE ON CONDITION.......

Since all of the above I have had a visit by a nurse from our ‘Specialist Rehabilitation Services’ to the effect that my ‘lack’ of walking is now of paramount importance and that I will be monitored ( among other things ) from now on. Also had a ring from Te Omanga Hospice to say that I will be getting a full review of my condition and that I will go from ‘share-care’ to ‘full-care’ by the Hospice which will mean that I can go in for respite care whenever I feel the time is right and it also means that Jan can have a break from worrying about me constantly when she is at work.
Another thing of concern is the access to and from both outside doors in this house. Rehab are thinking that one out as it is difficult.
You know, I am not a religious man but when ‘He’ up above made us in his image he forgot one very important thing before pushing the ‘finish button’. He forgot to do a ’proof read’ of the final design and didn’t remove all the little ‘flags’ marked ‘Terminal illness’s” . Life would be so much easier if he had.

Emotions…..I think I have had them all over the last eighteen months but if I can still laugh ( and in company ) and cry over the silliest thing, feel good within myself and generally continue to be VERY POSITIVE then life won’t be so bad. ALL THINGS CONSIDERED……

Quote... I think that wherever your journey takes you, there are new gods waiting there, with divine patience - and laughter.
Susan M Watkins ( B. 1945 )