I simply wonder here.
The ease at which we criticise our fellow travellers in life, is usually incremental to their perceived ability to accept criticism.

And when that fellow traveller in life is afflicted with perpetual torment of a neurological disease, which has spanned nearly their entire life, then criticisms must be exceedingly mild. And I hope mine is.

I look down the long list of contributions to OLO over many years, and can only watch on with admiration.

Much do I see of complaints pertaining to his physical body and it’s effects on his personal journey in life, but none do I see on the calamity his situation has on his spiritual life. Does such a man have one, there appears to be no evidence before us here, and a view from his deeper meaning of life would be incredibly interesting actually?

Dan

I have a 1 in 250,000 disease that most of the population has never heard about. I don't bother them with it.

Peter, I can and do empathise! What you have has to be indescribably awful and it's a wonder that unmitigated despair hasn't resulted in your suicide?
That you are still here and banging away is a testament to a very rare strength of character!

Me? When I'm at the bottom I lay on the bed and listen to the most inspirational and most beautiful music. Music that never fails to raise goosebumps and my mood! And some of it from a blind Italian man singing his heart out!

That said, lord only knows why you bother? When those ([self-serving] Sunday morning Christians) with the power to help, won't!

Keep banging away mate, some of us are listening and wishing you all the help that is there, including inspirational divine help! And from the one who always listens!

Given your condition is genetic! Then Genetic modification might reverse it? Who knows what medical science will come up with?

Hang in there, Peter. When you're on the bottom the only way left is up!

Remember always, what the mind of man can conceive and believe, the mind of man can achieve!
Alan B.

Peter
I am a specialist medical doctor. I am so moved by your story. Thank you for telling it so eloquently. You have shone a light where there is darkness. As a generalisation I agree that no one likes a whinge, but in your case I am so grateful that you have written about your struggle with this bastard degenerative disease.
Thank you
(Tim)