The Effects of ALS

The doctor came to our house yesterday.

He examined Hajime and said, "This is not a head cold".  If it were a nasal infection and continued for several days as it has for Hajime, the area under his eyes next to his nose would be swollen.  But Hajime is not swollen.

Last Friday, we submitted a sample of his runny nose to the lab.  The results are not out yet, but they said that his blood, mucus, and urine tests were all normal.  That means he does not have an infection.

The doctor then explained why Hajime was having these symptoms.  ALS is progressive, so with his physical functions being destroyed, he comes down with a fever and his nose is constantly runny.  I've never spoken to Dr. Hirai about this so I am a little skeptical, but it will be very difficult if Hajime develops a runny nose in addition to his saliva problem.

I can understand this if there are other ALS patients who have gone through something like this, but I haven't read any blogs that go into enough detail about this.  If there is anyone who knows, please let me know.

We finished filling out the pink CPR form yesterday.

I learned that when the heart stops and resuscitative steps are taken,  there is still only a 5% success rate.  The chances are small even if you've called the ambulance to have them do CPR and they're trying to revive him on the way to the hospital, so they can't bring him back home.  We were told that if he does want to be at home for the end, then maybe it's better not to fill out this pink form.  But Hajime's wish is that they take resuscitative measures no matter what happens, so we were instructed to fill out the form and put it near his bed.

This is one thing we really do not want to have to go through and every time they talk about it,  I feel like my heart is freezing up.  While I think that everything will be OK,  realistically I know there is a chance that his heart will stop, so we need to get various things in order.

For me as a parent and as a fellow human being,  this is a very painful time.


(translated by MS)

I Was Energized

Today was a beautiful day.  For the first time, we opened the window in Hajime's room with just the screen.  We opened the back door too and let the breeze in.  The breeze felt wonderful, and Hajime's face looked like he was saying,  "Ahhh, that really feels good!"

We had not opened his window before because a lot of ants would come in every time we opened it.  Also,  it was often hot, so we kept the curtains closed and just controlled the room temperature with the air conditioner.  But today the air from outside was actually cooler...so that was our first time!  It was perfect.

Hajime was able to feel like he was outdoors while still lying in bed, so I'd like to open the window again for him on days when there is a good breeze.

On such a beautiful day, something even more wonderful awaited us!
Our friends, husband and wife, Taka and Mai, came to visit.

They are dear friends who truly want to support Hajime.  They want everyone to know about Hajime, and so they've told all the people they know about him.  They want Hajime to regain his spirits, and I have been uplifted and encouraged too.

They told him, "Hajime, you are really hanging in there.  Hajime, you're doing great!"  and Hajime looked very happy.
These words can start to lift his spirits.
We received a gift more precious than anything else.

I, too, had been depressed lately, but thanks to our friends,  I felt energized and encouraged.  I was able to feel a great calmness and healing with them and a warm feeling filled our house.

There will be many things in the future, but I hope that we can continue to be friends.  It makes me happy to think that there are people who really understand what we are going through.  They told us that their parents are also cheering Hajime on from Japan.  What a love-filled family!  I am thankful that we were able to meet them.

Thank you very much for coming today, Taka and Mai!


(translated by MS)