Nothing Better

You know, I love my life!

Listening to great blues at the Waterfront Blues Festival, beer in hand. Hanging with friends. What more could I want out of  life?

Rasjad 

 

Work Party

Eleven family members show up this weekend to help us get our house ready to sell. They came from far and wide; from Santa Fe NM, Winthrop WA, Seattle and Portland proper. Lionel and his girlfriend Alina. my brother Craig, his two sons Shia & Kiva, his ex-wife Olivia, cousin Will, my niece Alicia, her fiance Andrew and their three kids Ava, Alexi, and Daniel. Wow! Amazing what eleven people can accomplish in a few days.

Enjoy the pictures!

   
Craig on electrical duty. 

  Alina and Lexi washing windows.

  Will and Shia getting the sprinklers working.

  Andrew, Alicia and Daniel cleaned out the attic.
 
Olivia, Ava and Susannah fixing lunch.

  Lionel and Kiva on a dump run.
  Me and Lionel in a selfie.
  Me getting the dump run together!

My Selfish, Grateful World – Part 4; Why Selfish? Why Grateful?

I’ve struggled on how to end this sequence of four essays. Where I thought I’d end up isn’t where I ended up (I think that’s a metaphor for my life right now).   I’ve had no life altering epiphany.

So I think I’ll end with a series of random thoughts, in no particular order.

• It seems unfair to me that I have so much and others have so little.
• I often feel despair and grief, as well as moments of pure joy.
• And I often feel thankful, grateful and blessed.
• Having ALS is physically and mentally the hardest thing I’ve ever faced. It’s unremitting and constantly changing (for the worse). Ever day I lose a little bit.
• As I read on another blog by a PALS “dying is expensive”. Fortunately for us this is less of an issue than for most. Although my IRA is taking a huge hit right now.
• We’ve asked for help and had an amazing response from our community – it stuns me!
  • As an example we have 80 people signed up on Lotsa Helping Hands.
  • Another example is Brenda and Robin who own Happy Puppy Park have offered to watch our dogs every Saturday at no charge so we can get things done. Wow!
• I will be selfish and accept the help.
• Although I worry people won’t come through over the long haul.
• I’m no Mother Theresa that’s for sure. In the past when I’d seen someone who is homeless/disabled/etc. I’ve a) not given a helping hand, b) pretended they don’t exist, c) had the politically incorrect thought wondering what they had done to deserve it, and d) justified my reaction by saying to myself “I can’t make any difference anyway”.
• I am now one of those people.

Google’s Self Driving Car

Alright guys I’ve been talking about this and wanting one ever since the concept was out there.  In the past this was just “cool” but for me in the future it may mean the difference between total dependence and a measure of independence.  I only hope I’ll be around long enough to get one that accommodates an electric wheelchair!  Check it out.  Total unadulterated cool factor!

Look Ma No Hands!

Reflections

My body failing, I contemplate.

Only one body; only one soul.

One of many.

Rejoice in the new day!

ALS Clinic in March…. (Part 1)

First – an apology.  I noticed that I wasn’t getting many comments on my blog, while on Facebook I’ve had lots.  I finally realized that I had not disable the CAPTCHAwhich makes you enter a ridiculous set of weird looking characters before you can post a comment.  I hate this.  So I disabled it.  It should be much easier to post comments now (although it won’t post right away as I’ll review them before posting – it cuts down spam).

Now about the ALS Clinic at Kaiser Permanente. 

In early March about 10 days after I got my diagnosis of ALS I attended the ALS Clinic at Kaiser.  Needless to say I was still in a bit of shock, not really knowing anything about ALS.  So I went to the clinic in a bit of a daze.  Wow.  What an amazing experience – in one three hour appointment I met with the Neurologist, Speech Therapist, Occupational Therapist, Physical Therapist, Respiratory Therapist and the Social Worker from the ALS Association.  Talk about efficiency!  That I could meet all of these folks in one place, in one afternoon sure made my life easier.

In fact, in April I made a film about it, which is on YouTube.  I’d like to set some context about the film – at the time of my diagnosis I was working with the Kaiser Permanente marketing department as the physician liaison with the employer groups that have Kaiser insurance (see About me).  This meant that I often worked with a number of Healthcare Insurance Brokers who advise the companies on their healthcare options.  I was scheduled to go to a broker conference in May – which clearly I was not going to attend.  So I made this video for two reasons; 1) to let people who I know well why I all of a sudden disappeared, and 2) I was truly amazed at the ALS clinic and the value it brought to Kaiser members like me. 

So please realize that the audience for my video was the brokers who potentially sell our health insurance.

Here’s the video: Broker Conference Video (word of warning, the video is about 5 minutes long).

In my next post I’ll outline what I learned at the ALS Clinic last March. 

Then after these two posts, I’ll post information about my 2nd visit, which was earlier this week.