Goal of this document

• Encourage you to connect and stay connected with Chuck/Chuckie, Nicole, Charlie, Alana and Jenna.
• Share some thoughts and guidance to help you be supportive. There is absolutely no expectation for you to spend any money or do anything specific. Deep gratitude for your support/community.

Context of this document

• Michelle modified this document that was initially created by her friend Jake for his wife/her friend Taylor. This document also has input from Chuck and Nicole. One way I support is by sharing the communication burden.                                                          
• If something isn’t on here – it doesn’t mean it isn’t welcome. You are in Chuck’s community and can bring your individuality and creativity. These are just ideas.

• Support flows towards Chuck. Guiding Q’s: What puts more agency back into Chuck’s hands, given how much is outside his control? How can we relieve the burden of him directing our support? See Ring theory: bring comfort in and dump out

                                                                                                                                  *HIGHLY RECOMMEND - QUICK READ*       

Communication preferences

• Try to interact as normally as possible. Don’t always make interactions about “checking in” on symptoms and treatment. Hold space if Chuck or Nicole bring up his health, but it can help to focus on other things.
• Easy, spontaneous gestures are valuable - We encourage you to collaborate with each other.
• Keep reaching out. This will be a long road and the news cycle is short. We are getting a lot of really kind messages and pledges of solidarity right now.

• We’d love to hear about great tv shows/movies, cute videos of kids/pets, funny/embarrassing day to day stories. Laughing is the best medicine.

• Want to share this document/updates with others? You’re welcome to share this document with anyone who wants to help. To ensure that everyone has clarity about how to be most supportive, remember support flows towards Chuck, so consider coordinating with whom you share the doc.
• Not sure what to say or what Chuck and Nicole specifically need at a given moment? Please feel free to reach out to Michelle Benjamin (781-439-8426) or Veronica Hecht (508-615-6405) for guidance or suggestions.

Mile markers of the journey

• Chuck started having noticeable symptoms early September 2023 (e.g. weight loss, muscle fasciculations, muscle weakness in legs/arms, mostly on right side)
• Chuck had weeks of comprehensive work-up and testing at Beth Israel in Boston including EMG/NCV, MRI of brain/spine, CT of chest/pelvis/abdomen, lumbar puncture testing cerebrospinal fluid, extensive blood tests, genetic tests, and 2nd opinion at MGH
• Chuck has been officially diagnosed with sporadic ALS on 2/14/24.

• The current treatment plan is starting the 3 R’s: Riluzole, Radicava, Relyvrio
• Taking over the counter oral supplements and B12 muscle injections
• Strongly considering a clinical trial (TBC)
• Biweekly PT/OT, monthly visits at the multidisciplinary ALS clinic at MGH  

Avoid pitfalls in support that are NOT welcome

• Implications that all Chuck needs to do is “just think positive” or that Chuck’s wellness hinges on his effort, continued “fighting,” or “bravery.”
• Compelling Chuck to support you through your feelings of fear, confusion, or loss related to Chuck’s health. Please see the ring theory article for rationale.
• Medical or treatment advice. Please do not ask him about prognosis or time estimations.  Please do not offer medical advice unless you have connections to neuromuscular experts and/or ALS certified centers of excellence.  

Food and meals

Consider signing up for the meal train that will happen 2 times per week to start.

Questions on the meal train?

Reach out to

• Michelle (781) 439-8426
• Nancy (781) 439-2685

Allergies or Restrictions:

• GLUTEN FREE - Chuck
• DAIRY FREE - Nicole

Address: 365 Johnson Street, North Andover MA 01845

Please drop off at the front door 4 - 5pm. OK to drop off the night before. Thank you!

Homemade Meals Gluten Free please 🙂 some ideas:

1. Chicken/veal parm
2. Ground turkey chili Recipe 
3. Pork chops / steak tips / roast beef
4. Pork roast Recipe
5. Roasted chicken
6. Tacos
7. Pasta and meatballs

      Sides: Rice, potatoes, asparagus, broccoli, brussel sprouts, corn

      FYI: Gluten Free pasta and breadcrumbs are available at Stop & Shop

Prepared meals Gluten Free places:

1. Spinellis in Lynnfield - gluten free chicken ziti broccoli
2. The kids like pouches from White Leaf & Roots pouches from Serenity Kids

Gift cards (recipient email = chucole631@gmail.com):

1. Doordash (available directly in Meal Train)
2. Shef
3. Burton's Grill
4. Pizza Factory - North Andover

Shared Caregiving

We will be using the following mobile app: ianacare (iana stands for “I am not alone”)

Please text Michelle (781-439-8426) and she will send you a link and help get you set up

• Help with kid coverage Wed from 5:30-8PM or weekends 4-8PM
• Help with laundry / errands / chores / declutter house

Note: The Johnson family has an au pair from Colombia who arrived in April to help with child caregiving and basic chores related to kids