The day my husband, Bob, was diagnosed with ALS he thanked my son and I for keeping it together for him. We did just that until the end. Now, we are able to look back on our ALS journey and have no regrets. During our three year battle, The ALS Association Western Pennsylvania Chapter gave us guidance and provided the tools we needed to live our lives and make lasting memories. That is why I am and will continue to be an ALS Ally.
Our journey with The ALS Association Western Pennsylvania Chapter began when we attended our first symposium. When we arrived, we were scared and still in shock. After receiving information from a few speakers regarding many aspects of ALS, Marie Folino (Director of Care Services) came over and assured us that we would never be alone in this journey. Marie was so very instrumental in guiding us through the first steps we needed to take. She asked if Bob was a veteran and advised us to contact the VA for more resources. After that we would see Marie at the ALS clinic and she continued to be a wealth of information.
Then I met Meghan, another social worker at the Chapter that helped with the support groups. Meghan was compassionate, caring, and she ran an awesome meeting. The caregivers support group was a game changer for me. That group is the reason why I have no guilt and no regrets. It was the best thing I ever did. I took away so much from these meetings by sharing my story, listening to others, learning from others, and grieving with others. The ALS Association gave us a community of people who understood.
No question was too small or too big, and Meghan always let everyone weigh in on the conversation. ALS is such a personal journey. Sharing with others is difficult, but this group was my lifeline. I made some wonderful friends. These friends helped me realize just how important self-care was at the Chapter’s Caregiver Appreciation Weekend. This was a time where I could leave ALS at home and not feel guilty about it. I was able to relax and recharge to ultimately be a better caregiver.
In addition to supporting me as a caregiver, The ALS Association greatly supported my husband. They gave him the tools and courage to fight, and he did every day. Our lives were filled with fun, love, and laughter before ALS, and we didn’t let ALS take that away. In September of 2020, Bob started to decline, and we were told he probably only had six months to live, if that. We embraced every minute. We started a weekly family dinner so our kids and grandkids could spend as much time with Bob as they could. We had many “last moments” that brought such love and joy to the very end. Bob fought hard for his family.
With the equipment and resources, The Association took the emphasis off the outcome of the disease and focused on what we could do in the present. They kept our family motivated with the Pittsburgh Walk to Defeat ALS®, fundraisers, and inspiring events.
Fundraising has given all our family and friends a chance to be a part of this fight to stop ALS. Everyone got involved and felt they were apart of Bob’s battle. We are the Go Getters for Bob Letters!
Even though Bob’s battle is over, our family will forever be a part of the ALS community and help others in any way we can. It is my hope that no one will have to experience this brutal journey in the future. This is why I will always be an ALS Ally.
By giving monthly I can ensure other caregivers are receiving the same tools that our family received to enjoy their lives together. Whether your loved one needs a wheelchair to go on a family vacation or you need assistance with in-home care, or you need a support group to vent or cry with, The ALS Association can help. The ALS Association looks at the care for the whole family, not just the person living with ALS.
Please join me today, as an ALS Ally, to continue providing support to other families in need. My family and I are very fortunate to have had the time we had with Bob. Help us give tools and time back to other families.
Give $25 or more/month and receive the same mug I am holding above.