Jun 27, 2012

I Hate This Disease

Today was the day for our regular evaluation that we have every three months.
It is to see if we can continue with the palliative care.  I worry a lot each time.
Palliative care is similar to hospice care, so we are not thinking long-term.  But, in Hajime's case, the doctors and Mary are doing their best to make sure his treatment does not become painful. 
Fortunately, there were no problems.  I hope that this palliative care team will continue to come.

Hajime's new stomach medication is almost too effective.  His stool has been watery, so they decided to decrease his dosage.
He was having stomach problems because he couldn't do No. 2, so he had to use suppositories and enemas which he hates. But then he had watery stools because the medication was too strong, so he was just feeling terrible.  I really felt sorry for him.
All this must have been like torture to Hajime because the only thing he can do is shed tears.
This is ALS progressing, so there really is no escape.  It truly is a frightening disease.

Two years have already passed since Hajime developed symptoms of ALS.  The progression has been very fast and now he can only move his eyes.  I feel a deep bitterness towards this disease that suddenly took away the youth of this 19-year-old young man.
Yesterday, I talked with Hajime about the past two years after he got sick.
"We used to talk a lot on the balcony, didn't we?" Now, one year later, we can no longer have a conversation.  Hajime was crying about that.  If only the progression of the disease had been a little slower, we could have done a lot more things...but, of course, there is no use in looking back.
I must look forward!  Recently I am getting more and more depressed.  I don't have any friends that I can confide my sadness to...
But  I've got to cheer up!

(translated by MS)


  1. i have thesame type - multiple sclerosis. GOd bless you my dear !!! regina, brazil

  2. hi my dear . I have a disease like yours - multiplesclerosis. I know how much we suffer. Have faith [in God, you delivered to him. I pray for you. God help us. hug. Regina from Brazil

  3. Thank you for your message Regina and Judy!