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living with ALS

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Christmas Eve – Sarajevo

Author MegImageCategories ALS, living with ALS, music that strikes a chordPosted on December 5, 2016December 5, 20163 Comments

Lots of love and connection with scary symptoms 

Author MegImageCategories #letsmakeALShistory, #whatwouldyougive, ALS, familial ALSPosted on August 15, 2016March 6, 20172 Comments

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  • July 11, 2016 Living with Familial ALS
  • July 18, 2016 Diagnosis Day
  • July 25, 2016 What’s Most Important
  • August 1, 2016 #whatwouldyougive
  • August 8, 2016 Ales for ALS
  • August 15, 2016 Lots of love and connection with scary symptoms
  • August 22, 2016 Assistive Technology for Loss of Speech
  • August 29, 2016 Eating without tasting
  • September 5, 2016 Thinking about Life and Death
  • September 12, 2016 I’m terrific….other than a touch of ALS
  • September 19, 2016 A friend’s shared spiritual Journey
  • September 26, 2016 Ch-ch-ch-ch-Changes
  • October 3, 2016 Hospital to Hawaii
  • October 10, 2016 Hawaiian tiny bubbles
  • October 17, 2016 Mik-key button – now I can swim
  • October 24, 2016 Purple Rain
  • October 31, 2016 Love, Connection, and Hope in Boston
  • November 7, 2016 Cubs win the World Series and then it’s time for a change
  • November 14, 2016 Saying goodbye to a job I love
  • November 21, 2016 Central Nevada Weekend with Friends, and Meeting a Friend of over 16 year for the First Time
  • November 28, 2016 Thanksgiving love and connection
  • December 5, 2016 Christmas Eve – Sarajevo
  • December 12, 2016 Tough Love – Spousal Caregiving
  • December 19, 2016 Clinic visit and so much more in San Francisco
  • December 26, 2016 Family love and connection across Nevada
  • December 30, 2016 A little more Vegas, then an epic trip to South America begins
  • January 9, 2017 Galapagos to celebrate our 25th anniversary Part 1
  • January 16, 2017 Galapagos to celebrat our 25th anniversay Part 2
  • January 22, 2017 Galapagos to celebrate our 25th anniversary Part 3
  • January 30, 2017 What happens after an epic trip?
  • February 6, 2017 Meditations on Hope and life goes on
  • February 13, 2017 Balance, So Hard to Find
  • February 20, 2017 Galentines and Valentines all Tied up With a Bow
  • February 27, 2017 Range of Motion and the Range of Light
  • March 6, 2017 Clutter and Taxes and Time, oh my!
  • March 13, 2017 Music and Botox
  • March 20, 2017 March Madness
  • March 27, 2017 Mindfulness Based Stress Reduction 
  • April 3, 2017 Surf’s up, our “grandson” is wonderful, Hawaii’s the life for me
  • April 10, 2017 Meet the ALS Family 
  • April 17, 2017 Alphabet Soup (the last two weeks)
  • April 21, 2017 Over the mountains again and again
  • May 1, 2017 The Path of Life 
  • May 8, 2017 Birthday Bash for Stan
  • May 15, 2017 Cinco de Mayo and Icky Camping and the Week that got Ickier
  • May 22, 2017 Hope, Love, and Connection and lots of good stuff
  • May 25, 2017 Cultivating Peace Within
  • June 4, 2017 Publishing delay this week
  • June 12, 2017 Beautiful Camping then the Best Laid Plans….
  • June 19, 2017 The Hard Part of Being Friends with PALS (People with ALS)
  • June 26, 2017 Traveling to some of my Happy Places 
  • July 3, 2017 Milestones and Miles End
  • July 10, 2017 Central Nevada Fun and Not So Fun Fires
  • July 17, 2017 Thoughts during a non traveling week with no one in the hospital 
  • July 24, 2017 The World I Know
  • July 31, 2017 A Week of Love, Connection, Connections, and Hope
  • August 14, 2017 ob la di, ob la da, life goes on
  • August 7, 2017 The Waiting Game
    • August 18, 2017 Party, Progess and Plans
  • September 4, 2017 I’ve been out walking….I don’t do much talking these days
  • September 11, 2017 Family; and Frustration
  • August 28, 2017 Eclipse exceeded expectations in every way
  • September 16, 2017 Bobcat, Beach, Birthday, and Gram’s Grave
  • September 25, 2017 Trying to Reason with Allergy Season
  • October 2, 2017 My Aim is to Represent 
  • October 9, 2017 What sort of beast is man?
  • October 16, 2017 Every picture tells a story, don’t it?
  • October 23, 2017 A Step Back in Time, then a Giant Leap Forward
  • October 30, 2017 Fun at Corey’s Crusade and Radicava Round 1, Days 1 through 10
  • November 6, 2017 Halloween and the end of first round of Radicava 
  • November 13, 2107 Distraction vs Reality
  • November 20, 2017 Radicava Round Two,  November and December travel
  • November 27, 2017 Thanksgiving in the U.S. – what I am thankful for
  • December 3, 2107 Publishing delay
  • December 4, 2017 Folsom Prison Blues
  • December 18, 2017 The Best Laid Plans (again)
  • January 1, 2018 Holidays, family and friends: love and connection
  • January 8, 2018 Island life and ALS
  • January 15, 2018 Background on my genetic mutation causing ALS – C9ORF72 
  • January 22, 2018 the end of our Hawaii trip and back home to child proof
  • January 29, 2018 Exciting New Research
  • Febrary 5, 2018 Publishing Delay
  • February 7, 2018 January blues, February hopes
  • February 14, 2018 Loved ones visit from Hawaii and positive changes ensue
  • February 19,2018 Get On Board or Get Out of My Way

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Social Menu

  • July 11, 2016 Living with Familial ALS
  • July 18, 2016 Diagnosis Day
  • July 25, 2016 What’s Most Important
  • August 1, 2016 #whatwouldyougive
  • August 8, 2016 Ales for ALS
  • August 15, 2016 Lots of love and connection with scary symptoms
  • August 22, 2016 Assistive Technology for Loss of Speech
  • August 29, 2016 Eating without tasting
  • September 5, 2016 Thinking about Life and Death
  • September 12, 2016 I’m terrific….other than a touch of ALS
  • September 19, 2016 A friend’s shared spiritual Journey
  • September 26, 2016 Ch-ch-ch-ch-Changes
  • October 3, 2016 Hospital to Hawaii
  • October 10, 2016 Hawaiian tiny bubbles
  • October 17, 2016 Mik-key button – now I can swim
  • October 24, 2016 Purple Rain
  • October 31, 2016 Love, Connection, and Hope in Boston
  • November 7, 2016 Cubs win the World Series and then it’s time for a change
  • November 14, 2016 Saying goodbye to a job I love
  • November 21, 2016 Central Nevada Weekend with Friends, and Meeting a Friend of over 16 year for the First Time
  • November 28, 2016 Thanksgiving love and connection
  • December 5, 2016 Christmas Eve – Sarajevo
  • December 12, 2016 Tough Love – Spousal Caregiving
  • December 19, 2016 Clinic visit and so much more in San Francisco
  • December 26, 2016 Family love and connection across Nevada
  • December 30, 2016 A little more Vegas, then an epic trip to South America begins
  • January 9, 2017 Galapagos to celebrate our 25th anniversary Part 1
  • January 16, 2017 Galapagos to celebrat our 25th anniversay Part 2
  • January 22, 2017 Galapagos to celebrate our 25th anniversary Part 3
  • January 30, 2017 What happens after an epic trip?
  • February 6, 2017 Meditations on Hope and life goes on
  • February 13, 2017 Balance, So Hard to Find
  • February 20, 2017 Galentines and Valentines all Tied up With a Bow
  • February 27, 2017 Range of Motion and the Range of Light
  • March 6, 2017 Clutter and Taxes and Time, oh my!
  • March 13, 2017 Music and Botox
  • March 20, 2017 March Madness
  • March 27, 2017 Mindfulness Based Stress Reduction 
  • April 3, 2017 Surf’s up, our “grandson” is wonderful, Hawaii’s the life for me
  • April 10, 2017 Meet the ALS Family 
  • April 17, 2017 Alphabet Soup (the last two weeks)
  • April 21, 2017 Over the mountains again and again
  • May 1, 2017 The Path of Life 
  • May 8, 2017 Birthday Bash for Stan
  • May 15, 2017 Cinco de Mayo and Icky Camping and the Week that got Ickier
  • May 22, 2017 Hope, Love, and Connection and lots of good stuff
  • May 25, 2017 Cultivating Peace Within
  • June 4, 2017 Publishing delay this week
  • June 12, 2017 Beautiful Camping then the Best Laid Plans….
  • June 19, 2017 The Hard Part of Being Friends with PALS (People with ALS)
  • June 26, 2017 Traveling to some of my Happy Places 
  • July 3, 2017 Milestones and Miles End
  • July 10, 2017 Central Nevada Fun and Not So Fun Fires
  • July 17, 2017 Thoughts during a non traveling week with no one in the hospital 
  • July 24, 2017 The World I Know
  • July 31, 2017 A Week of Love, Connection, Connections, and Hope
  • August 14, 2017 ob la di, ob la da, life goes on
  • August 7, 2017 The Waiting Game
  • September 4, 2017 I’ve been out walking….I don’t do much talking these days
  • September 11, 2017 Family; and Frustration
  • August 28, 2017 Eclipse exceeded expectations in every way
  • September 16, 2017 Bobcat, Beach, Birthday, and Gram’s Grave
  • September 25, 2017 Trying to Reason with Allergy Season
  • October 2, 2017 My Aim is to Represent 
  • October 9, 2017 What sort of beast is man?
  • October 16, 2017 Every picture tells a story, don’t it?
  • October 23, 2017 A Step Back in Time, then a Giant Leap Forward
  • October 30, 2017 Fun at Corey’s Crusade and Radicava Round 1, Days 1 through 10
  • November 6, 2017 Halloween and the end of first round of Radicava 
  • November 13, 2107 Distraction vs Reality
  • November 20, 2017 Radicava Round Two,  November and December travel
  • November 27, 2017 Thanksgiving in the U.S. – what I am thankful for
  • December 3, 2107 Publishing delay
  • December 4, 2017 Folsom Prison Blues
  • December 18, 2017 The Best Laid Plans (again)
  • January 1, 2018 Holidays, family and friends: love and connection
  • January 8, 2018 Island life and ALS
  • January 15, 2018 Background on my genetic mutation causing ALS – C9ORF72 
  • January 22, 2018 the end of our Hawaii trip and back home to child proof
  • January 29, 2018 Exciting New Research
  • Febrary 5, 2018 Publishing Delay
  • February 7, 2018 January blues, February hopes
  • February 14, 2018 Loved ones visit from Hawaii and positive changes ensue
  • February 19,2018 Get On Board or Get Out of My Way
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