I was honored to meet Karen Stiles earlier this year and she made a significant impression on me. She reminded me just how important our care services can be for someone newly diagnosed. Karen said, “When I was first diagnosed, my mind kind of went blank. You’re just lost when you first find out.”
We came to see Karen at her home within the first week of her diagnosis to offer support and guidance. She said, “I do feel like I have the tools within myself and when I don’t have them, there are the people around me. You can still live a good life with the support of ALS Northwest and your family.“ I was thankful that Karen had been able to use resources we offer and it’s important to remember those services are made possible through donations made by our community.
Karen and her husband owned a bike shop in downtown Portland for many years. They are family-focused adventurers who love to ski, travel and hike. Karen told me, “Having something to look forward to is super motivating. You’re not thinking about the disease you’re thinking about living and about having a goal, how to get there and how to make it happen. I approach this as not a disease but another adventure, another phase in life.”
Through ALS Northwest a person living with ALS has a suite of support systems available to them so that they can live their lives to the fullest. Some of the resources Karen was able to utilize include support groups, ALS clinic, medical equipment, communication technology and training, financial assistance, caregiver training and volunteer support.
“None of us will ever have time in a lifetime to do all that there is to do. So why not quit worrying about what I can’t do and start thinking about what I can do.”
New hobbies and interests emerged for Karen and Jeff like gardening, poetry, bird-watching – things they could indulge in while at home.
Plus, for newly diagnosed people like Karen there is new hope in treatments too. This year two new treatments have become available. Remarkably, one is the first-ever ALS gene-therapy produced. ALS Northwest is committed to funding ongoing ALS research and we look forward to many more victories – we are making progress.
Family, friends and people living with ALS make up our multi-faceted community of support that all play an important role in propelling our mission forward.
Thank you for your commitment to this community.