fine people are searching for the silver bullet that will cure
ALS, but Compassionate Care ALS and Ron Hoffman put considerable
effort where I need it most - helping me deal with the myriad
of real world issues and needs that are crucial to my quality
of life. I'm so grateful for their acts of kindness and the
friendship Ron brings when he visits my family and me."
- Rick Guttenberg, ALS
patient and Compassionate Care ALS Client
The direct services
offered through our main program, the ALS Patient, Family, and
Caregiver Support Program, include making home visits, answering
basic requests for information and referral, guiding families through
intimate dialogue about disease progression, dying and death, coping
with a spouse’s death,
and other issues related to ALS, and the subsidy of respite services
and durable goods that are not covered by insurance. We refer ALS
patients to specialists in integrative therapy, such as craniosacral
therapists or massage therapists, as well as counselors, attorneys,
home cleaning services, and even contractors, depending on whether
or not a family’s home requires construction for wheelchair
When providing services to ALS families, we work with each family
one-on-one. We get to know them and let them identify their own needs
and their own level of desired assistance. Often our time is spent
simply being present with families, and listening.
We are active listeners and are sensitive to
the many stages of grief involved with facing terminal illness.
This sensitivity is the essence of how we serve others. We know
that each family member can be at a different stage, which is why
we serve the entire network of care for each ALS patient.
A diagnosis of ALS brings with it life-altering decisions and unforeseen
challenges. Many of the physical needs that ease the difficulty of
living with ALS are not covered by health insurance. This is where
CCALS steps in to help with things like:
- Three-Position Reclining Chairs
- Bath and Shower Chairs
- House Cleaning Services
- COQ10 Assistance
Click here for a virtual tour of some of the equipment CCALS offers
Our network of counselors has specific expertise with ALS. We draw
on these experts and others in planning workshops, retreats, and
respite weekends tailored to individual needs. Patients and caregivers
find added support when we match them to others like them to share
the similarities of their experiences.
One significant challenge when living with ALS is finding adequate transportation.
CCALS owns and loans a wheelchair accessible van to our clients for both
everyday needs and special excursions. Families use the van for everything
from weekends away with the family to grocery shopping and trips to the movies,
common experiences often taken for granted until the ability to have them
As one woman described her friend’s predicament with ALS, "My
friend had been confined to her home '24/7' for two years, except
for the very occasional (and prohibitively expensive) outing. When
she found out she could borrow your van, she was a changed person.
She was able to: visit her sister in New Hampshire, visit her parents'
grave, visit a friend by the seashore, eat out, go to the movies
and go shopping --- all things she had not been able to do, and which
most of us take for granted."