Below is a letter from Jenna and Lauren detailing their experience with ALS and ALS United CT.
Thanks to you and the entire ALS Community, our local services, research & Clinic support, and advocacy is possible. To read more about our organization, view our Annual Report.
To make a donation to support our mission, click here. Thank you!
Dear friends of the ALS community,
It feels surreal to write this letter. Never in a million years did we think our family would be affected by ALS. Especially not our dad, Mike, who was known as the man who couldn’t sit still. He was always doing something – whether he was mowing the lawn, washing cars, or fixing things around the house, nothing seemed to stop him.
But in March of 2023, he told us he was noticing muscle weakness and atrophy in his right leg, and he was having difficulty walking. We assumed these issues were related to the back problems he’d had over the years, but after several visits to the orthopedist and multiple MRIs, we were all surprised to find out that wasn’t the case. After months of back and forth with his PCP, he finally got in to see a neurologist. We will never forget the moment the neurologist told us, “It’s possible this is ALS.” Our lives changed forever, in a way none of us thought could ever be possible.
Following our dad’s formal ALS diagnosis in Oct. 2023, we were advised to reach out to ALS United CT for additional resources. We did a zoom call with a care manager, Michelle, who was extremely thoughtful, respectful, and knowledgeable. Little did we know how much we would rely on Michelle and ALS United CT’s resources over the next year.
Our dad’s ALS progressed quickly. He first lost movement in his right leg and arm, then in his left side. We felt like we could never catch a break, always solving one problem just to move on to another. Despite how challenging it was to try to manage the progression, we never felt alone. We always knew Michelle was an email or phone call away. And if she didn’t have an answer or suggestion for us, she would make every effort to find one.
We can tell you from personal experience that the money donated to ALS United CT is given directly back to people living with ALS and their families in multiple ways. Through their equipment exchange program, our dad received stair glides, ramps, hoyer lifts, and so much more. Whenever we needed something, Michelle got it for us. Everything was delivered as quickly as possible, which was essential to managing our dad’s quick progression.
Their transportation services were also essential to us. When our dad could no longer transfer into/out of a car, Michelle set up transportation for his appointments in a handicap accessible van. Michelle even rented a personal handicap accessible van for Jenna’s wedding in May 2024. That van allowed our dad the freedom to come and go to all the wedding events at our leisure while keeping him safe and comfortable. Our family is so grateful to have those memories, which would have been impossible without the support of ALS United CT.
We’ve also benefited from their support groups. Our dad participated in ALS United CT’s newly diagnosed support group shortly after his diagnosis. Run by a care manager, the weekly meetings provided information about disease progression, equipment, etc. in a way that was respectful yet informative.
The meetings also gave our dad the chance to talk to and connect with other people in CT battling ALS, which helped us all see that we were not alone.
Unfortunately, our dad lost his battle with ALS in Nov. 2024. But ALS United CT continues to be here for our family. Our mom participates in their monthly grief support group, which has allowed her to connect with other people who have lost a loved one to ALS.
We couldn’t have navigated this horrible disease without the resources and support from ALS United CT. Our family is forever grateful for all they have done for us. Saying thank you doesn’t seem like nearly enough.
We will continue to support ALS United CT and hope that you do too. Please consider donating to this amazing organization that goes above and beyond for people living with ALS and their families.
Sincerely,
Grateful daughters, Jenna & Lauren Pocius
