March, 2021 When word first got out that I was going under hospice care, the friends and family game of telephone went off like a social media amplification algorithm. St Laurel was soon reading of thoughts and prayers from well-meaning friends, leaving her with a WTF look until she put the pieces together. This promptedContinue reading “The Hospice Swarm”
Tag Archives: ALS
Advances Against ALS
February, 2021 I recently watched a fascinating seminar on recent advances on the fight against this wretched disease. The seminar, which can be found at this link https://youtu.be/p9e9wV6Pw-Q contains highlights of the 11th Annual California ALS Research Summit. I personally love to nerd out on something that is going to kill me, but that’s justContinue reading “Advances Against ALS”
Hospice
February, 2021 I am entering hospice care and you need to calm down. I’m not dead yet and don’t plan to be for some time thank you very much. So there. Most people associate hospice with end of life care for those in the last stages of cancer. Hospice for us pALS, however, is aContinue reading “Hospice”
How to Speak When You Can’t Part 2
February, 2021 In my last blog on this topic, I described conversing using an eye tracking speech assistance device. I explained some of the techniques I use to engage in conversations. I closed with a promise to discuss responding to gun jumpers, communicating without any assistive device, and the dreaded “or” question. A gun jumperContinue reading “How to Speak When You Can’t Part 2”
How to Speak When You Can’t
January, 2021 One of the tricks you learn when living with ALS is communicating when you can’t talk or move. Although there are tools now available that are both lifesavers and lifelines, there’s no way you can have the intellectual discourse over the socio-economics of wood fired pizza that you had when you could speak.Continue reading “How to Speak When You Can’t”
Trashing the Crib Part 2
November, 2020 I blogged earlier about the various accessibility accouterments installed throughout the house. There are enough bars and ramps to keep a fully sugared five year old with a big wheel busy for hours. Let’s substitute that fully sugared five year old with a pALS learning to ride a LazyBoy on Wheels. Let’s justContinue reading “Trashing the Crib Part 2”
Extreme Craic Part Last
January, 2021 I promise this is the last time I’ll talk about our 2019 trip to Ireland. Consider yourself lucky. In times past I would have stuffed you with great food and fine wine then subjected you to an interminably long slide show while challenging you to stay awake. Now, if you are bored byContinue reading “Extreme Craic Part Last”
I’m a Dog
January, 2021 I’m not really feeling it right now so I asked one of our holiday house guests, and member of our COVID pod, to take over writing this post and she agreed. So enjoy. Hello. I’m happy because I weigh more than 70 lbs but I’m not even a year old. My name isContinue reading “I’m a Dog”
Extreme Craic Part Two
December, 2020 Not sure how much I want to subject you to my 2019 Summer vacation, but I do want to provide some impressions of the trip. So indulge me as we leave ALS Land and I give a newbie’s view of the Emereld Isle and its people. Craic The first research assistant in theContinue reading “Extreme Craic Part Two”
Extreme Craic
December, 2020 When you get nailed with ALS, one of the many things you think of is: what can I do in the time I have left. I have always loved travel and a fellow pALS advised I travel then while I could. Oh God, I can hear you saying, not another what I didContinue reading “Extreme Craic”
Embrace The Suck 