Thank you to Rita Snyder for sharing her personal story to inspire others impacted by ALS. If you’d like to share your story, please email Tony@alsmidatlantic.org.
I was diagnosed with bulbar ALS on April 10, 2023, by a neurologist at Lehigh Valley Health Network, after clinical exams and an EMG. Then, I sought a second opinion at Penn State Hershey. On May 18, 2023, after a clinical exam and EMG, Dr. Zachary Simmons agreed with the LVHN neurologist. ALS United Mid-Atlantic nurse Annette Miller, RN, met with me and my husband, Pete, as Dr. Simmons provided the results of his assessment. She presented me with her contact information and provided the pertinent information and literature from ALS United Mid-Atlantic.
I decided to continue with the ALS Treatment Center at Hershey. I have attended the Penn State Hershey clinic twice now. Annette has been great at responding to numerous emails with questions and requests that I have sent her way. She and the entire team at the clinic are great at assessing and meeting my needs.
Fortunately, my needs are not great. My speech and chewing and swallowing are affected. I recently began blending my meals which allows me to comfortably eat as much as I like. My husband had bought us a new blender months ago, but I put off using it because I felt I’d be giving in to the symptoms I was experiencing. But hindsight is 20-20, and I would have been wiser (and would recommend to others in the same situation) to start blending sooner rather than later. It has made my life easier, and starting earlier would have likely avoided some weight loss.
I am an active person. In 2017, after I retired from being a city letter carrier with the US Postal Service, where I walked 8 miles per day, I started taking kayaking lessons and bought my first kayak. What started out as a way to “get away from it all” and relax on the water in nature, turned rapidly into a sport I wanted to excel at.
I joined my local kayak club, the Lehigh Valley Kayak and Canoe Club, an extremely supportive and fun group of paddlers who generously mentor newbies. I began to take classes and trips with them on local lakes and the Lehigh River, in addition to the classes I was already taking with LL Bean on Lake Nockamixon in Bucks County.
I soon found that my passion is in coastal/sea kayaking in the open waters of lakes, bays, and the ocean. I joined the Jersey Shore Sea Kayak Association, and on a trip on Great Bay, NJ, with them in November 2020, I met Pete, who also loves sea kayaking.
In 2021, I expanded my interest to teaching, and got the first two levels (L-1 and L-2) out of a possible five levels, of teacher certifications with the American Canoe Association, and began assisting with classes for LL Bean and both clubs.
After the diagnosis was made in April 2023, I continued to go on kayaking trips, and assisted with classes. Pete and I are practice buddies and are continuously developing our skills, and I was feeling like I wanted to challenge myself with achieving the next level in the ACA. One of my mentors, Cie Stroud, was going to be testing for her recertification as an L-3 instructor, and we discussed the possibility of me testing for the same. I opted to go for an L-3 Skills Assessment instead because my voice was not carrying loudly enough to teach. None the less, I had to demonstrate the same skill level on the water as an instructor would.
So, on September 22 and 24, 2023, five months after the diagnosis, I did an ACA L-3 Skills Assessment with an L-4 ACA instructor on the Chesapeake Bay near Annapolis, Maryland. As luck would have it, Tropical Storm Ophelia showed up that weekend in Annapolis, providing the high end of the wind and water conditions required for testing at level L-3. During 5 hours on the water in 15-18 mph sustained winds and up to 5’ swells on Friday, and another 3 hours on Sunday in slightly milder conditions, I demonstrated proficiency in 20 different strokes and maneuvers, 8 types of rescues, towing an incapacitated paddler in their boat, and rolling my kayak, and passed the assessment. (BTW, my friend, Cie, passed her L-3 instructor recertification!). I’d like to add that women comprise 25% or fewer of the paddlers who achieve this level.
I also enjoy hiking, especially on the Appalachian Trail, which runs on the mountaintop very near to where I grew up in Lehigh County, and not far from where I now live. My brother, Gary, is a hiking fanatic, and I joined him and the Allentown Hiking Club on two hikes recently. On October 27, 2023, we hiked to Pulpit Rock and the Pinnacle, a 10-mile roundtripper to two high-point lookouts on the trail in Berks County, PA. On New Year’s Eve day, we did an 8-mile roundtrip hike on the AT in Lehigh County west from Route 309.
I go to the gym at least two times a week to stay in shape for these activities. When I think that things in my body aren’t working as well as they used to, I change my mind and notice how healthy I feel, straighten my posture, and I feel filled with well-being. No matter what condition our bodies are in, we can feel well-being because the greater part of us is more than our bodies.
I am so grateful to Pete for his undying faith in me and for the loving care and inspiration he gives me. I am also fortunate to have dear friends and family members with whom I share inspirational thoughts and a positive attitude.