False Alarm

 We are not going to the lake as reported in the previous blog entry. Our aide up north has a hospice patient for 3 weeks. We will try oversight of our projects from afar.

You will find us at Fox Run through Thanksgiving.

Comments

  1. JustineNovember 4, 2025 at 6:02 PM

    Neil and Ingrid, keeping positive thoughts and prayers coming your way.

    ReplyDelete

Post a Comment

Popular posts from this blog

Another ALS Clinic

 Yesterday was another clinic. Straight to the results. My breathing is holding steady. I’ve lost 40 lbs. another 20 would be the most the Dr wants. My muscle strength is also holding steady. I need to get back to my physical exercises. My use of the cough assist is important to keep my lungs engagaed. The social worker spent the most time with me responding to my question “what’s next”. She explained my voice will continue to detonate as well as my arm and hand muscles. Should I continue to live, I would suffocate. She then went on to explain how hospice would intervene in the dying process to make it peaceful and not painful. But, yes I will die from ALS. Both the Dr and the Pulmonologist agreed I’m not ready for hospice….yet. They will help me know when to engage them. So there it is. A reasonable report of my current condition and future. The challenge remains to make the most of every day and keep fighting. Obviously the greatest challenge is to avoid depression. I fill out se...
Read more

Remember Me by What I Loved

As I have had time since the onset of my slow progression ALS, I became concerned with how people would remember me. My voice is slow and harsh. I am limited to a wheelchair unable to stand or walk.I was particularly worried about our grandchildren’s memories since the ALS has been of significant duration and severity. I mentioned this to our children and at once started receiving positive feedback from the grandchildren about memories from pre-ALS times. That really means a lot to me. In my reading, I came across a piece on Positive Actions primarily targeted at organizations and their leaders. I have modified the concept to reflect how to think of friends and others. Another iteration brought me to my starting point of requesting how I want to be remembered. I do not want to be remembered by my many flaws and shortcomings but by other’s view of what I love. Not what I achieved but rather what I enjoy. I believe this is different than one’s legacy as what one loves may not result in c...
Read more

If at First…..

,  So we are trying again with another surgery to get a functioning feeding tube with another surgery. A comedy of errors that came out successfully. My surgery was schedules for December 23, with a one night stay planned. A pre-surgery video/remote meeting was scheduled. Not ideal timing wìth Christmas but, at least  getting done. Then, good news, the surgery was pulled up a week to the 17th with at least a one night admission. Then the pre-surgery appointment was canceled. I called and was told the nurse would be calling with details the day before surgery and would be able to answer any questions. The nurse called às stated and had her script of points to cover. I asked about when I should stop taking my blood thinner? She responded not to the blood thinner that night or the morning. Our daughter Sara flew in from Austin to help and support us for a few days. We all got up early to arrive at UM Hospital by 6:30am. We were finally taken to pre-op at 10:00. The attending s...
Read more