Facing ALS

Friends,

We are writing to you with some news about our dear friends Rob and Laini.   They find themselves facing a very challenging time and have had to step back as they face some changes in their future.   It is with a heavy heart that we share the news that Rob has been diagnosed with ALS.   ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.  It was  made famous by Lou Gehrig and Stephen Hawking and has no known cure.

In mid-2024, he was experiencing some strange and seemingly unassociated symptoms such as rapid random muscle twitching, hoarse vocal cords, and slight limb weakness. Although there is no definitive test, at least 2 neurologists have diagnosed his symptoms as ALS.

In the short and long term, he could develop any combination of the following: loss of voluntary muscle control, cognitive decline, inability to talk, eat, swallow, or breathe without assistance. We don’t know how fast it will progress or how much time he has left to live.

That has motivated Rob to share this news with you so he can, in the short term, enjoy the function that he does have and connect with his community of friends and loved ones.

As you can imagine, this is very overwhelming for Laini and Rob. Their immediate focus right now is on:

1. Continue specific testing in order to better treat his particular form of ALS

2. Move to an ADA-friendly house ASAP

3. Tie up any loose affairs; legal, financial, employment, business, etc.

4. Make sure that Laini and Rob have the support they need

5. Spend time with family and friends

6. Live life to the fullest while he still can

7. Focus on Rob's healing from the inside and the out

This is a lot to take on, and a Care Circle of dear friends has already jumped in to help them manage these tasks. We know many of you will want to connect with them and to be of service and support.  Please do not reach out to them directly in the short term.   Laini and Rob are focused on getting their affairs in order and taking this opportunity to enjoy and connect with each other and would like to be supported, not overwhelmed, by your love and kindness.  If you have any questions on how to best support them, please reach out to Ron (renikel@ronnikel.com) or Arlyn (arlynjohns@gmail.com).

If you would like to schedule a get-together with them either virtually or in person, you can reach out to Arlyn (arlynjohns@gmail.com).   Please be aware they will be following cautious health protocols during this time since Rob’s immune system and body will not be healing as easily (see FAQ for more information).   

If you are inspired to offer your skills and resources, or have ALS-specific support you can offer, including information about ALS treatments, then please reach out to Ron Nikel (renikel@ronnikel.com). The Care Circle will work with you to help you direct your kindness and knowledge to the person most able to help you connect and support Laini and Rob.