Ilana Schatz

Kathy,

Through your ALS clinic or your primary care physician, ask to be referred to their palliative care team. They have social workers and chaplains available for emotional and spiritual support. Palliative care is available to anyone with a serious illness, and not just in hospice or at end of life

hi Kathy –

What I’m learning three years in is that people are afraid of saying the wrong thing so they don’t say anything at all, or they don’t want to be intrusive. I started writing a monthly update and send it to people I wanted to stay in touch with; I also invited people to ask questions – people have been more responsive.

One thing I do is send an update 5 das before clinic (send it to whomever coordinates with the staff. The clinic visits are very productive and the ALS team comes prepared. I divide it into categories (eg speech, PT, neurologist, etc) with 3-5 bullet points (e.g. can’t eat lettuce anymore, having trouble doing transfers, etc). The clinic staff…[Read more]

One thing I do is send an update 5 das before clinic (send it to whomever coordinates with the staff. The clinic visits are very productive and the ALS team comes prepared. I divide it into categories (eg speech, PT, neurologist, etc) with 3-5 bullet points (e.g. can’t eat lettuce anymore, having trouble doing transfers, etc). The clinic staff…[Read more]

Hi –
Are you working with an ALS clInic? tHE RESPIRATORY THERAPISTS ARE THE MOST KNOWLEDGABLE. WHEN MY PULMONOLOGIST SAW MY FVC SCORE, HE TOLD ME TO GET A TRACH IMMEDIATELY; i HAD THE RESPIRATORY THERAPIST EDUCATE HIM ABOUT ALS AND RESPIRATORY FUNCTION

Hi everyone,

I’m scheduled to get my PEG tube surgery on 7/14 through Interventional Radiology with a one night hospital stay. Wondering what recovery looks like and how long?

Medicare coverage does not cover home infusions; some Medcare advantage programs do. We’re covered under Humana Medicare Advantage. We;ve asked ALSA to work on this issue.
Good luck

A friend recommended “Navigating Life with ALS” by Mark Bromberg, MD and Diane Banks Bromberg.  It’s a good synthesis of a medical perspective (he’s a neurologist) and helpful everyday life tips (she was the caregiver for her mother who had ALS).  I found it very helpful and wished I’d known about it closer to my diagnosis.

hi Robert,

I’ve been doing home infusions for over 2 years and it’s been perfect for me, especially during covid.  You need someone else to do it for you.  My partner and I use that time for spiritual reading and non-distracting time together.

At this point, Medicare does not cover home infusions.  We’ve spoken with ALSA and they’re working on…[Read more]

Hi Debra –

Happy to share some of my Odes with you; they brought back wonderful memories I hadn’t thought about in a long time:

• Jump roping
• Tending my garden
• Getting into and out of hot springs
• Tide pooling
• Dancing
• Camping and sleeping on the ground
• Hiking up Mt. Sinai

Blessings,

Ilana

Marianne –

I was initially feeling like I was drowning in sadness; I’m really learning and appreciating how powerful a gratitude practice is even as I live with this disease.  What I hadn’t expected were the wonderful memories over my life that washed over me!  I hadn’t thought about how much I loved roller skating when I was y…[Read more]

hi Mary,

Glad you found it helpful; it’s definitely a journey.

Best,

Ilana