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!