Resources.
We have compiled a list of resources that we found helpful as we tried to navigate the constant challenges of an ALS diagnosis. Many of these will only be accessible to people in Southeast Michigan, but some will benefit you regardless of your location. We hope that some of these resources can help you find information and assistance as quickly and as easily possible.
What is ALS?
ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s Disease, is a progressive, degenerative disease that affects the nervous system. Motor neurons die off and muscle tissue wastes away. ALS is fatal. The life expectancy of any ALS patient is two to five years. There is currently no known treatment or cure.
Equipment Information.
Quality Home Medical
This is the company that helped us find the right fit for Paul’s wheelchair, the right shower chair, a portable ramp and a portable lift. There are other good places but we had great results with Quality Home Medical so wanted to include them here.
https://www.healthcare6.com/supplier/westland-mi/quality-home-medical-equipment-inc-33537.html
Mobility Works
Mobility Works offers wheelchair accessible vehicles for people to rent or buy. These vans have automatic ramps (both side ramps and rear) which make them accessible for patients in a wheelchair. Again, there are other dealerships, but we had good service here and were able to take our van there for maintenance.
Therapy Organizations.
Recovery Project
Paul went to the Recovery Project for physical therapy weekly after his diagnosis. Physical therapy can help by assessing range of motion, strength and mobility and provide guidance for managing physical tasks.
We had an amazing therapist, Meghan Malley, who spent a lot of time figuring out the best therapies/exercises for Paul while also making adjustments as his ALS progressed.
Formal Care Help.
Home Helpers
Home Helpers is a caregiver service. Finding reliable, good care is extremely important. You and your family will quickly realize that family members caring for the person with ALS will need help so that they don’t get completely overwhelmed. We were thankful to have Home Helpers assist Paul in his ALDs (Activities of Daily Living) which include bathing, eating, dressing, toileting, and transferring/movement.
There are many organizations that provide this service and you will find a list on your local ALS of Michigan website.
https://www.homehelpershomecare.com/
Angela’s Hospice
We hired Angela’s Hospice in August 2019 about four months before Paul’s passing. Paul decided that he wanted to enroll in hospice in order to stay out of the hospital. It was becoming more difficult for him to breathe. There are many options that your doctor can discuss with you and everyone has different end of life goals so this is a very personal decision. Paul knew that he wanted to remain at home and hospice allowed him to do that. Our nurse would visit weekly, often accompanied by a social worker. They were available 24/7 to answer questions or send someone out to us at any time. They were especially helpful in the last week of Paul’s life. They helped us prepare and told us what to expect. If you choose to use hospice, we’re sure that there are so many wonderful organizations. We’re including the link to Angela’s because it was the one we used and we will always be grateful for their care and compassion.
Other Organizations We Support.
ALS TDI
ALS TDI (ALS Therapy Development Institute) is an organization that we got involved with early on and we have supported their research for many years. They are the largest non-profit ALS research facility in the country and their one and only goal is to end this disease. We have been inspired by the people who work there, in the office and in the lab. Their motto is “ALS is not an incurable disease, it’s an underfunded one.” We will continue to support ALS TDI personally and through our foundation in the hope that a cure is on the horizon if we can just support the research. Again, there are many other organizations that do wonderful work but here is the link to ALS TDI in case you want to learn more.
ALS of Michigan
ALS of Michigan is a wonderful resource for people in the state of Michigan who have been diagnosed with ALS. There is a lot of helpful information on their website - linked below!