advice for Myself

Today things are very busy and people in my life are anxious and nervous.  When other people around me become anxious and nervous, I then become anxious and nervous.  I think before ALS I had more control of the situation around me and then when people became unbalanced for whatever reason, I could control the situation by physical action, verbal communication or just leaving the area.  I can't do that very well anymore.  So, the feelings and energy of people around me tend to affect me more. I become frustrated because of my lack of control.  Those of you who know me probably understand that I like to have control of the situation.

No one ever said life would be easy.  The Buddha says that challenges and suffering are a part of our life journey.  The key is to stay in the present. Stop, be quiet for a moment and listen.  Then go forward with positive energy, calm and focused.  This is the way to success.

random thoughts

It's Monday, my most confusing day of the week.  I so enjoy the weekends when I have Mineko here most of the time and also sometimes have a Saturday afternoon visitor.  I get lots of attention over the weekend, I feel very well cared for and also get into the wheelchair to look out my living room windows.  So I Mondays, I often feel a little lonely and a little blue.

My parents come to visit this week.  They will be here Thursday and stay for one week.  I'm looking forward to them visiting.  The last time with them was December 2009.  They are both 80 years old and still doing pretty good.  I do worry about them making the long trip.  I'm close to my family, we are small family.  I'm sure it must be difficult for them to have to come see their son in this condition.  I will be positive and happy for them and for me.

Our angelfish died a few days ago.  We had this lovely angelfish about four or 5 inches big in our aquarium for almost a year and a half.  He had very good eyesight and would follow whoever came by the fish tank from one side to the other asking for food.  It was sad that he died, but I guess that is part of life.  The other fish in the tank seem a little bit lost without him.  I think he was the leader.  I'll see if I can find photo of him.

A Scare and a fly

The other day, I think it was Wednesday, we had a good rainstorm and the wind was blowing strong here in the Valley.  I was working on the computer and there was a sudden power surge.  My BiPAP stopped working for about 30 seconds.  Usually the $800 Duracell backup battery kicks in automatically, but for some reason this time it did not work.  I was left without any air and a vacuum like feeling in my hose and mask on my nose.  I couldn't breathe or talk.  I was pretty scared and felt like perhaps the end was near.  Luckily Christopher was home and he realized the power had gone off so he came to check on me immediately.  He helped me take off the mask and sit up,so I could breathe minimally.  Power came back on at my BiPAP began to work once again.  It felt like liquid oxygen going to my lungs, wonderful and exhilarating all at once.  Chris was extremely upset.  He was very strong and I'm very proud of his reaction.  But I can tell it was a little bit shaky for both of us. When Mineko came home from work I told her what happened and she had tears.  It was very upsetting for her as well.  I definitely do not want to die from lack of air in this way.  Someday perhaps I will determine that it is time to unhook myself from these machines, but till then I want to keep on living.  I guess I feel most terrible for the ones I love.  I want them at all my friends to know that when the time does come that no one should feel guilty or sad.  You have all given me so much love and tender care, the reason that I wish to continue as long as possible.

There's a fly flying around our apartment today.  He's passed me two or three times now.  How fantastic it must be to be free like that to buzz around at what must be 1000 miles an hour in his time and speed.  Later today I think I'll put the window and hope that he can get out into the wider world.

it's the small things

It's the small things that are sometimes frustrating for me.  I'm very lucky that I can still eat and drink and enjoy food.  A great pleasure for me on most days.  I'm very thankful that my family, my Tuesday and Saturday visitors and my caregivers are willing to bring me food and feed me these days.  The frustrating thing is when I look at a delicious plate of food in front of me and I see a fantastic looking piece of chicken, fork full of noodles or soft piece of bread, and my saliva juices start flowing and they are not satisfied quickly enough.  In the past when it was that could feed myself I would quickly wolf down anything that looked good and satisfy the cravings of my taste buds and the rumblings of my tummy on my own terms.  Quickly and fully. These Days I need to wait till the person who is assisting me is ready to bring the food to my mouth.  This is okay and I'm usually quite patient with this aspect of the feeding experience.  What frustrates me is when I see a particular piece of food that I really want and the person assisting me unknowingly avoids it and gives me a different food. The Experience has been totally unsatisfactory.  I'm stuck with some piece of food in my mouth that my anticipatory tastebuds and hard-working saliva were not looking forward to.  And worse, my eyes still see the delicious food that I was craving on the plate.

Oh, this is really silly and I must have more important things to complain about.  Maybe next time.

another day

Another day another post for me.  I'm very happy to see that I have a "follower"...  This is totally cool, Thank You Charmed One!  I know you are and I hope all is well.  Come by and visit me one day.

I just finished writing my movie review "Twilight"...  That was fun, I hope I don't offend anyone.  Just my opinion.  I am enjoying writing more and more these days giving me some purpose and something to do a little bit each day other than watch TV and surf from my computer.  Actually writing is more like talking for me because I use this dictation software.  It really works great and allows me to communicate without having to type it all, which I can no longer do anyway.  I also use this USB touchpad that Brian gave me.  With those twospace instruments my computer is my kingdom and I can do anything I like, well almost.  Clicking and dragging is still a problem.  It's fantastic and I'm so happy that I can still do some things.  I'm feeling very grateful today, just to be alive, to have family who love me and care for me, a wonderful son, great caregivers and fantastic friends.  Even though I don't move more than two or 3 feet from my bed each day, I feel I I have the whole world to live in.  It's my world and that is what's important and that is what I have to remember.  That's my world and it's what I make of it.

A Typical Monday

It's almost 1 o'clock and I'm expecting Joylynn comes soon to give me my weekly bath.  This is always such a wonderful time for me as Joylynn is so patient and professional, and I get to get my hair washed and I feel comfortable and clean afterwards.  Joylynn is a nurse's aide from Kaiser home health.  I'm very lucky that home health still watches over me.  The nurse visits me every couple of weeks and I can call them if something is needed.  Christopher is home with me today and will take care of me until he goes to work this afternoon.  He still works at Starbucks.  It has been over two years now.  Today I'm feeling a little on the depressed side.  It happened last night after watching a 60 minutes episode on a scam involving stem cell treatments for ALS patients in Mexico and California.  He was a very powerful program, but left me with the feeling that there really is no cure or treatment for this disease that I can hope to see in my lifetime.  I guess always in the back of my head I hope that someday there would be a stem cell or other kind of treatment breakthrough, but I think it's pretty clear that that is far in the future still.  I have to get over this depression and just be happy that I can spend time each day with my son, my wife, my friends and family and caregivers.  I must find the joy in each of these encounters each day.  I don't have 30 or 40 years to live, so I must live 30 or 40 years worth during each moment.

Saturday morning

It is a Saturday morning and my second post to this blog.  Mineko has to work today so she just left a few minutes ago.  My friend Marion is coming over to visit me today so I won't be alone.  She will be good to see her we can catch up and always enjoy each other's company.  I'm feeling pretty good today.  Christopher is sleeping late and soon will be off to do whatever 19-year-old boys do on their days off.  Not much of importance to write today, just want to start get into the habit of posting.

starting over

I've decided to start over with this blog.  I had started this about a year ago and decided that a daily blog was just too much, so decided to create my Rick's posse website.  The website has just about run its course and now I've decided to start doing this daily blog.  I'm not sure how this will work, but you will give me something to do each day or every other day.  Just sharing my thoughts and keeping my mind active.  If any of you decide to read some of this now or in the future I hope that there is something of value here.