Merry Christmas

A belated Merry Christmas to everyone! And a happy new year to come! We had a very relaxing and comfortable Christmas. Mineko, Christopher and I spent the weekend together resting and enjoying each other's company. All of my friends and caregivers and family were so generous to us this year! Thank you thank you thank you to all of you. You're all so special to us and make each day wonderful. Thank you. I can't say that enough...

"Dolphin's Dance"is coming in 2011

Hello friends and family! I'm very happy to announce that my first attempt at a fiction novel "Dolphin's Dance" has been accepted by PublishAmerica. below is part of the query letter I wrote to several publishing houses and literary agents. It gives a good summary of why I wrote the book at what it's about!

My name is Richard Raker and I am 54 years old. I have lived in Honolulu Hawaii with my wife and son for 25 years. I have ALS, a terminal illness diagnosed in 2006. Prior to 2006 I worked as an educator teaching ESL and as a computer trainer for a healthcare organization. Very soon after my diagnosis and a quick disease progression I was totally bedridden relying on a ventilator to breathe. I spent most of my time reading, watching TV and movies, when one day I discovered the therapeutic joy of writing. First I struggled through a memoir about the first 25 years of my life. This I hope to publish sometime in the future. After that I realized that I had a few other stories that I needed to write. "Dolphin's Dance" is the first and I have already begun my third manuscript titled "Sealand 1001" which is a more complex science fiction semi-sequel. I love writing and it is clearly a therapeutic endeavor for me. I happily write at least two or three hours each day, often until my dictating voice and frozen body become overly fatigued. I would love to be able to publish my writing so that it can be shared with a broad audience. It would also be wonderful if my work could somehow help pay for my rising medical costs and son's college tuition. Published or not, I will continue my writing therapy, it gives me something constructive to do each day and eventually I will be able to share my stories with my family and friends.

(By the way, I'm not looking for sympathy here. I want my manuscripts to be judged based on their merit not on my personal history. I described my current circumstances in detail because I want you, my prospective literary partner to be fully aware of my situation.)

"Dolphin's Dance" begins with an ordinary Honolulu man who has lived with ALS for 12 years and determines that it is time to gracefully leave this world. He gathers his family and friends for a final farewell. Per his wish, his ashes are spread in the ocean off of Makapuu Point. After passing his spirit is reborn as a Pacific Bottlenose dolphin off the coast of California. In an anthropomorphic style we follow the life of this dolphin as he grows up and is enigmatically drawn to the Hawaiian Islands. The story carefully blends known scientific fact about dolphin behavior and other marine mammals with fantasy. Issues that affect their existence are explored with a definite conservationist message that is achieved by looking at the world through the dolphin's eyes.

The dolphin rescues a young USC-San Diego college student after a surfing accident and begins a quest to understand and communicate with humans. The college student's life is irrevocably altered by the experience and the subsequent relationship they develop. She joins a dolphin rescue and relocation team led by her Professor at the university. One of the dolphins the team rescues from a failing marine park in Mexico was originally from the Hawaiian Islands and was captured off the coast of Asia when she was just a few years old. She is brought back to health at Sea World and released into the wild. The female dolphin is introduced to the main character at the time of her release. They form a bond and together they travel back to the Hawaiian Islands.
Readers who love the ocean and are fascinated by the mammals of the sea will enjoy this short novel. The author hopes that by sharing this story more people will become aware of the fascinating and beautiful animals of the ocean and will be moved to protect and preserve our world.

stay tuned for more information about the publication date and possible excerpts posted on my website!

periodic post

Hello friends and caregivers
I have not posted to my blog for a long time. Believe it or not I've been quite busy each day and just not finding the energy or the need to post. No news is good news, but I do have some news that I thought it would share.
My health is still stable and I seem to be doing okay. I have less anxiety on most days.I expect to have a checkup soon with Dr. Seitz and get my flu shot.
My son Christopher is no longer working at Starbucks, he now has a new job at the Best Buy as a sales rep. He starts sometime next week.
my wife Mineko continues to take care of me and work very hard at her full-time job.
caregivers and friends continue to make my life worth living and bring enjoyed the each day. On Mondays I watch football with Michael and Michelle. On Wednesdays Bob comes in and takes me out in my wheelchair. I still have Tuesday and Saturday visitors, you know you who you are and I am very grateful to all of you.
I have started writing as an activity each day two or three hours about six months ago. I have finished a memoir of my first 25 years, it's about 120 pages. I'm now halfway through a fictional story about a dolphin. I enjoy writing it it gives me purposeful activity each day. If I ever finish and feel that they are readable I may share with you folks.
Enjoy the upcoming holidays. Thanksgiving is one of my favorites.

My View Keeps Changing

The construction at 15 Craigside is progressing at a fast pace.  I put together a slideshow over the last year...  It's kind of fun to see how the building and construction has progressed.  It's also sad to see how the beautiful views of the mountains and valley have disappeared.

The Crane Is Gone!

The construction at 15 Craigside has been going on for over a year now, and yesterday they reached a milestone.  They removed the huge yellow Crane...  Now I can see the building in its complete footprint.  Fortunately I can still see the top of the mountains from my window and some sky.  Check out my website for more pictures of the construction from beginning to end.

How Are You Doing?

A friend of mine sent me an e-mail and asked me "how are you doing?" - this was my reply.

Hello friend, so you ask how am I doing?  I'm doing fairly well these days.  My health seems to be rather stable.  September 11 was the four-year anniversary since my diagnosis and the life expectancy I was told is 3 to 5 years.  So, I figure things will go really downhill over the next year or two and I will gracefully exit this world, or I will remain stable and live forever being a burden on my wife and family.  On a daily basis I usually feel pretty good.  I remained in my bed most of the time, but I have television and my computer here to help me with diversions.  Writing my memoirs has been very therapeutic and enjoyable.  It keeps me busy a couple hours a day and distracts me from the boredom of be in bed all the time.  Would you be willing to read what I wrote and give me a frank opinion about it?  I don't want to send it off to any publishers or unlessI feel or get some feedback that it is worthwhile to read.  I have no grand illusions of becoming a famous writer or anything like that.  But I would publish it if I thought it was of some value.  Some days I'm very positive and then others I get quite depressed.  It usually seems to coincide with my constant battle with constipation.  If I had a good --- that day, then I'm in a good mood, feel energetic and in general good health.  If no elimination occurs for sometimes three or four days, then I began to feel crappy (pardon the pun) ...  Then it can sometimes get a little depressing.  please don't offer advice about fiber, prune juice and stuff.  I've tried it all..

I do get into my wheelchair two or three times a week, and outside into the neighborhood sometimes.  That's enjoyable.  Mineko and Christopher of course are the center of my universe these days.  I love them both so dearly and treasure the time I have with them.  Christopher makes me proud, he works hard at Starbucks still and continues to plug away at college.  I worry that one day soon, he will want to move out on his own.  That's inevitable, I guess I'll deal with it then in my own way.  Mineko is my hero.  She works full-time and takes care of me full-time, doing things for me that no woman should naturally have to do for her husband.  But most of the time she does these things gladly and out of love.  I'm lucky to have her.  I have many friends like you who I keep in touch with both electronically and sometimes visiting physically.  That's important to me as well and keeps me active and interested in the activities in the world.  Unfortunately my parents are not doing well with their health.  I'm afraid that my father has had some difficulty with blood clots and my mother is just exhausted from all the stress.  They both have had very full and wonderful lives, it's just sad to see them having such a difficult time.  I get frustrated that I cannot go to Arizona and help them. If you have time send your positive thoughts or prayers our way.  Keep in touch.

I read a great Quote today...  It goes like this: "do your best and then relax. let things go on in a natural way, rather than force them."  This was from a great Hindu teacher over 100 years ago... http://en.wikipedia.org/wiki/Paramahansa_Yogananda

Well, you asked me how I was doing??  There you go.  How are you?

Four Years Later

This week will mark four years since my diagnosis of ALS.  I have mixed feelings when I think about this...  Four years ago I was still walking, playing golf, working, feeding myself and enjoying my life with a lovely family and satisfying job.  I'm angry and depressed at times that most of this has been taken away from me over the last four years, but I am still alive and I still have a lovely family, wonderful friends and fantastic caregivers.  I do still try to enjoy as much of my life as I can with the limited physical abilities I still have.  I can still talk and communicate with people, use the computer and change the channel on the television. I have a lot to be thankful for, so thank you, and especially thank you all of my friends and caregivers who give me a reason to be happy each day.

Family Friends

Some friends from Japan came by to see us last week.  When I lived in Japan one of my best friends had two children, a girl "Mami" nine years old and a boy "Daisuke" five years old.  They are now all grown up and came to visit us.  Mami now has two children, a girl and a boy, exactly the same age as when I first met them many years ago.  It was a strange coincidence, but also a wonderful time to remember and a very good visit.  The children were so animated and fun!  Daisuke and his wife are moving to Hawaii, they have received green cards through the lottery system.  I hope they will be able to settle safely and comfortably here in Hawaii.  It will be like having some of my Japanese family living close by.

a lovely feline Visitor

Last Saturday Guy and Tommy brought their kitty cat "Khloe" over for a visit.  She was a little bit shy, but so soft, calm and beautiful.  I just love having visitors, with two legs and four legs!  It was great to see Tommy also, last time I saw him she was probably six or seven years old.  Growing into a fine young man!

Digitizing old photographs

I have been taking all of my old slides from years and years ago, some from when I was in my early 20s, to Costco to be digitized.  It's a little bit expensive at $.26 per slide, but well worth it for me to be able to see all those photographs that brings back lots of memories.  I wanted to share with you one of my favorite pictures that I came across.  This is a picture of me when I was probably 17 years old and grandma Raker in Hawaii at the Polynesian cultural Center.  Circa 1974?  Yes, that's me on the right!

My Big Day out

On Wednesday my great friend Bob took me out to Aloha Tower marketplace. We took the handy van from my apartment at about 3:30 PM.  It was a nice easy ride, we were the only passengers and it just a few minutes to get there.  We wandered around checking out the stores and the harbor.  We sat looking out at the harbor as one of the Matson freighters came into the harbor, made a U-turn right in front of us, and then back into the loading dock area.  Amazing that such a big ship can maneuver like that.

 We watched the Star of Honolulu load up its Japanese passengers, with hula dancers greeting them.  A couple of the dancers looked really bored.

 Then we had appetizers and beer at Hooters! I had a great day getting out from the apartment was wonderful for me.  Thanks to much to Bob, Mineko at the Handy Van for giving me the courage and opportunity  to venture out.

53 years and still going

On Sunday I had my 53rd birthday! I had a really great day thanks to my wonderful family and friends.  I got lots of cards and well wishes.  Some great Amazon.com gift certificates (thank you Bev, Bob, Peter and mom and dad).  Christopher was especially loving, as he is always.  Mineko was especially patient, as she is always!  I had a wonderful birthday and it gave me the courage and will to continue for many more.  Thank you everyone!!

Monday visitors!

A couple weeks ago on a Monday I had the pleasure of visitors and took some pictures.  Michael visits me every Monday and brings me delicious lunches.  He's a great guy and spend the entire afternoon with me.  Michael has been visiting me for over a year now, fantastic!  Michael was introduced to me by Jennifer who use to work for the MDA.  Now she works for "Mothers against Drunk Driving".  Thank you to both of them for visiting me!  And thank you to all my visitors who make my life enjoyable and help me keep my connection to the world.

I can still see the top of the mountains

15 Craigside construction is still going on.  The last I heard it's supposed to be completed in February.  It looks like they have finished all of the floors and I'm very happy to say they still left a little of the mountains and the Valley for me to see.  I was so bummed out that they would take away my complete view from my bedroom window.  But this is great!  My glasses still half full.  I can still see the tops of the mountain's and the clouds going by.

hello on Monday

Hello folks, I hope everyone is doing well.  I had a slight fever and cold again this weekend, that's two weeks in a row that I got somewhat sick.  I hope it's not a trend.  I think it may be due to the weather and not taking my vitamins as usual.  I hope everyone is having a good Monday, I know these days can be tough.  Enjoy as much as you can!

I started a new blog today.  I had been reviewing DVDs on my website, decided that it would be easier for me an easier for others to read if it just reviewed them on the blog.  If you're interested in my DVD reviews or you know any others who are interested, invite them to check it out: http://ricksdvdreviews.blogspot.com/2010/07/nine.html

25 years!

Mineko and I have been married 25 years today.  I feel so blessed to have found a partner to have spent all these years together, and to be with the rest of my life.  It is a calm and restful feeling that I have today knowing I am loved and that I have someone to share my love with.  Also the fact that 25 years ago we moved here to Hawaii is interesting.  We arrived in Hawaii on July 15, 1985.  25 years makes me a local, I reckon.  Aloha.

Christopher celebrates 20 years

For his 20th birthday Christopher went skydiving. I have to give him credit for his courage and risk-taking spirit. His mom of course, was not that thrilled. He had a wonderful time and I think it must be a memory he will never forget. We all have to remember to make these memories in our lives while we are young and able.

a quick update

I haven't added to this blog in a while. I was sick with the flu/fever and body aches last week and it took me several days to recover. After that I kind of just lost interest in writing, so taken some time off. Most days I'm doing pretty good. Health and progression seem to be stable. My mental state is changing though, seems that at times especially when I'm tired I get a little depressed. I'm finding it and realizing that mostly it's my own state of my mind. I'm the only one that can be positive and make the most of each day.

just for fun

This is something I wrote over two years ago. I thought perhaps "charmed one" would like it.

Eulogy for Emeron
I remember when I first met Emeron. It was just about 3 years ago at the Kahala Petland. Emeron was just a no-name goldfish at the time, swimming in a tank with hundreds of her bothers and sisters. My mom and I were looking for some goldfish to populate our new 10 gallon aquarium. Three goldfish impressed us that day and were taken home. As soon as the three fish were released in our new tank, they began to explore the plants, rocks and tree stump in the tank. Within a few hours my mother had named the fish, the larger of the three was pure orange and given the name Natalia, the medium sized fish was orange and black and called Botchi, and the smallest was orange and white named Emeron.
We were looking for something special in a goldfish, we found it in Emeron. Of the three, Emeron, was clearly the leader, showing the others where to find algae and scraps of leftover flake food. Even though she was the smallest, she always got the most food at feeding time and could swim faster than her tank mates. Emeron was a peaceful and graceful swimmer. I could watch her swim back and forth the tank for hours at a time. Even at rest, her fins gently swayed in the currents. When I put my face against the glass the others would get scared and hide, not Emeron, she would swim right up to the glass and wag her tail at me, as if saying, “yes, let’s play!” Her eyes were wide and bright, and I really think she could see me through the glass. Perhaps she even recognized me. She was always ready to say hello. If Emeron were a person, she’d be one of my best friends, I thought.
I remember the day Emeron got sick and died. I had not cleaned the water in the tank for quite a while and the filter wasn’t working correctly. The water quality had gone bad and Emeron must have caught some disease. She started to swim sluggishly and her once bright eyes began to cloud. In a day she was gone, and I watched her go down the drain of the toilet. It was a sad day. Mom cried a bit and I know Botchi and Natalia were confused without their leader and friend. I was just stunned. I had lost my best goldfish friend.
I miss Emeron and often think of her when I clean the fish tank. I learned a few things from her that I could not learn from anyone else. I learned that you can be happy even in a 10 gallon tank and that flake food tastes pretty good. That you should always greet others cheerfully, bright eyed and with a smile. I learned that you should swim through life with grace, strength and speed. Good-Bye Emeron, swim free in the fish tank of Heaven.

a four-legged visitor

My friend Kula came to visit me last Friday.  As soon as he got in the apartment and was let out of his carry cage, he quickly investigated every nook and cranny.  He had a drink of water and then jumped up on my bed.  He Pretty much stayed with me on the bed for the rest of his visit.  He was such a friendly and well mannered visitor.  Kula did not talk my ear off or expect me to carry on a conversation.  He was content just to be there with me. Every so often he would crawl closer to me so I could reach him and give him a scratch, or some love.  He was willing to share kisses with me, even through the mask on my face.  Part of the time I think he was so relaxed that he dozed off. Thank You Kula for making my day special!

a family photo

I thought I would try to post a photograph.  This is a recent photograph when my parents were here to visit in the spring.  They stayed in an apartment in Waikiki for one week.  It was a lovely visit with them.  They are so supportive and loving.  I'm very lucky to have a strong family bond. Perhaps it is because we have a very small family, basically just my mother, father and myself.  I was the only child as many of you know.  Yes, I was spoiled. I do have a half-sister from my mother's first marriage living in Atlanta.  We are close now, but didn't like each other too much when we were growing up. Funny thing is my father and my mother were both single child families as well.  And now, Mineko and I just have one.  Perhaps it's part of the genetic makeup.  Enjoy the photo I hope it comes across correctly.

Father's Day

Father's day is coming soon.  I was watching NBC dateline last night and they were interviewing Chris rock, Adam Shandler and a few other comedians that are in the new movie "Grown-Ups".  The interviewer asked what it's like to be a father, or a good father.  Chris rock answered that he believes 80% of being a good father is just be there.  I tend to agree with him.  I think that one of the most important things a father can do is just spend time with his children.  Whether it's quality time, or quantity...  Just be with your children.  It doesn't have to be time playing a piano, teaching or correcting.  Just be there.  I also believe there is no manual for parenting.  It just happens and you have to do your best.  I hope that my son, Christopher, realizes that I love him and that I've tried to be the best father that I can be.  If I follow Chris rock's 80% rule, I think I've done pretty good so far.

a rough few days

I haven't been posting that often, just can't think of anything clever to say or have any need to be verbal.  I also haven't been feeling well lately, without going into too much detail it's my usual constipation issues.  When that part of the body is not working well it just takes me down physically and mentally.  I'm feeling much better today and think that things will get back to normal soon.  I'm looking forward to watching basketball today.  The finals are always amazing and athletic ability of the basketball players is just so fantastic to watch.

Television

I watch a lot of television these days and the regular television season has just ended with lots of finales.  I'm very grateful for television, it is definitely one of my main escapes.  It's probably not that good for my brain, but what the heck it's entertainment.  My favorite comedies are "The Office", "30 Rock" and "Modern Family." I enjoy some crime shows like "CSI", "Castle" and "The Mentalist." Dramas that I have enjoyed are "Lost" and "Medium." I do like some reality shows like "Survivor", "Dancing with the Stars" and "The Apprentice." I also watch reruns of "Seinfeld", "Frasier" and "Everybody Loves Raymond."  Of course I also like to watch any kind of sports programs and the news.  So with all of that, as well as PBS specials, the Discovery Channel, National Geographic Channel and BBC America, there's plenty to keep me entertained.  There's a lot of junk on TV, but if you look hard there is a lot of good stuff too.

Children

Do you have any children?  I have one, a son soon to be 20 years old.  It's amazing how the years have passed so quickly and how much he has defined and changed my life.  I don't think I will be remembered for so many things in my life when I finally decide to pull the plug, but one thing I hope I am remembered for is the love that I have for my family.  I thought of this today because my son found out his grades for this semester at the University.  He did quite well and it made me think that as a parent we are so tightly bound to our children, their failures and their successes can probably be more to us than it is to them.  I just felt so proud of him and the young man he has become.  I also feel so excited about the life he has ahead of him.  I really hope that I have done all that I can for him, to teach him about life and love, goodness and caring about others.  I think that perhaps this journey of mine with ALS will have some positive impact on his life.  I'm not sure what that would be?  But I hope it's there.

BiPAP mask bothering me

These days my BiPAP mask bothers me sometimes.  It's extremely difficult to adjust the mask so that is comfortable, only mineko really has the knowledge and patience to adjust the mask correctly for me.  And even then, just wearing this silly mask 24/7 gets annoying, frustrating and difficult.  The place it hurts the most is on the bridge of my nose, which becomes red and sore.  The rest of my face becomes dry and itchy.  And my eyes become dry and dirty from the air escaping from the mask.  It's my choice.  By doctors recommended to have a tracheotomy done, which is supposed to be more comfortable and allow me to breathe more easily and you don't have to wear a mask.  But I decided to stay with the BiPAP for as long as I can in order to avoid surgery and also to avoid the changes in our lifestyle that would be required if I had tracheotomy.  So I must learn to live with my choices!  Much more difficult than it sounds.  I must be positive and grateful that I can still breathe and that this technology does exist.

it's Friday!

I remember when I was working, like most of you out there, Friday was always the best day of the week!  After a long hard week of work I was always looking forward to the weekend.  The weekend was always a special time to do things with friends and family, take a rest, enjoy the beautiful Hawaiian beaches and just enjoy life.  The weekends are still special for me even though every day is basically the same routine.  On the weekends I get my wife and my son all to myself!  During the week I am often alone, or with friends and wonderful caregivers...  But being with my wife and son for the weekends is always so comfortable and special.  They really know what I need and what I want to be happy, comfortable and relaxed. Don't Get Me Wrong, I'm very grateful for every day Mondays through Fridays, no weekends are still very SPECIAL.  Enjoy them!

random thoughts on Tuesday

It's Tuesday, I don't have a lot to write about today for some reason.  I have been feeling a little bit anxious lately, so today I took one of the anxiety pills my doctor prescribes.  The medication calms me down a little bit and makes me somewhat groggy.  Feels good actually.  I guess in my condition I'm allowed to utilize drugs for comfort - at least that is how I feel at this time.  The issue is I think the medication makes me a bit lazy and I don't really want to think too hard about what to write or what to do.  I have the new DVD "Avatar" so I think I'll watch that today.  That will occupy me for several hours.  I've been enjoying writing my movie reviews on my website...  That's fun and allows me to write creatively.  I'm trying to figure out a rating system, to make the reviews for user-friendly.  If any of you read the reviews please let me know what you think.  I'm grateful to be here today, feeling better and enjoying the slight change in the weather.  I can feel summer.

another perspective

My parents were here this week and just left this morning.  It was great to see them and I really appreciate that they make the effort at their age, 82, and health to travel all the way here to visit with us.  I know it's a difficult trip for them.  Say goodbye today was a little difficult.  It made me realize that the impact of my disease affects others and not just me.  It must be really hard for my family, friends and loved ones to see me in this condition and feel like they cannot help me.  I just want everybody to know that I am extremely grateful just to be alive and to be able to do all that I can with my limited capacity.  Every breath, every word, every touch, every sound, vibration, scratch an itch, all of it brings joy to my life.  And you are the ones that make it happen.  Without all of you there'd be no need for me to keep breathing.  Thank you!

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.