“My name is Brett and I am living with ALS. My wife, Jeannine also lives with ALS, as my caregiver. I was diagnosed in October of 2018. As all patients and caregivers know, we were quickly forced to jump on the ALS rollercoaster, while it was moving.
There was: research about the disease, discovering what services/support that we might need and where to find providers, the bewildering and bureaucratic application process to get on Medicare and Disability, and a thousand other things.
We accepted these challenges and with the help of the AMAZING folks at the ALSA Western PA Chapter (ALSAWPA), over the past 2 years, we have become better informed/educated about what it takes to live our best lives through our ALS journey.
This past summer, we were contacted by Marie, Director of Care Services, to gauge our interest for participation in support groups of patients and caregivers. My initial feeling is that neither myself nor Jeannine needed a support group as we have a pretty good handle on living with this disease. But as I thought about it more, Marie and the rest of the team have never steered us wrong, so I decided to give it a shot. I was pleasantly surprised.
The support group is conducted by Meghan in a very relaxed, caring, and interactive format. We have had both men and women participate. Some folks just come online and listen. Some folks tell the story of their diagnosis and we even have some participants who are nonverbal, but add their comments by typing in the “chat” feature. We discuss challenges we face with our own personal journey and often we compare our strategies for dealing with them. Topics range from: comparing medications/treatments, the use of supplements/medical marijuana, what assistive devices work/don’t work for an individual, and many others.
From my own perspective, I have a need to help people and the group fulfills that need. Even though I am no longer able to physically provide assistance, I can share my knowledge with those who have just joined the rollercoaster. And occasionally a PAL (person with ALS) just needs to talk with someone who lives the shared challenges. An added bonus to group participation is that it is a chance to interact with a group. Covid-19 has isolated us all and this is one tool to share your thoughts and feelings with PEOPLE.
The group only meets one hour per month and there is absolutely NO stress involved. I would highly recommend joining us, if only to test the waters. Hopefully you will be as pleasantly surprised as I have been.
Every Day is a Good Day.”
-Brett
The Living with ALS group is a monthly meeting for those currently diagnosed with ALS. It’s an opportunity to meet, encourage and learn from each other. For more information, contact Marie Folino, MSW, LSW at 412.821.3254 or marie@cure4als.org.
The ALS Association - Western Pennsylvania Blog 