Gratitude is a positive emotion. It's about focusing on what is good in our lives and being thankful for the things we have. Gratitude is pausing to notice and appreciate the things that we often take for granted. The diagnosis of ALS was the ultimate “Pause” in life as I knew it. I was always a doer. I was always a helper. I was not always good at accepting help. I used to tell outpatients upon discharge home, “Most of us are good helpers but not very good at receiving help. That sets up a scenario with a lot of frustrated helpers. Please accept their help because it will help you recover faster and help them fulfill their helper role and feel good about themselves.” Now I had to practice what I preached! Call it a work in progress :)

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I have been blessed with many people who helped me along this journey with ALS. The following is in no way intended to be an all-inclusive list but is an initial attempt to recognize some of the individuals who played a role in my journey. 

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My family:  As difficult as the diagnosis is for the patient, it is equally devastating for the family. I am blessed with a loving family whose unwavering support has given me strength. My wife of 48 years, four daughters, three son-in-laws, and five beautiful grandchildren. I love you all.

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My yoga professionals: I have always enjoyed spending time with people who practiced yoga. I think it was their “chill” energy and their presence. I was fortunate to have access to Lancaster’s vibrant yoga community when I needed it most. I have had four principal yoga instructors: Sarah, Tina, Lana and Sara. Each brought something to my practice. I am forever indebted to you.​​

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My medical caregivers: They say doctors make the worst patients and I am a case in point. I have had many visits to the ER, related loosely to my ALS, as a result of falls. I have also undergone four stints of hospitalization:

• In 2018, I underwent a six hour craniotomy for an Acoustic Neuroma resection.

• In 2023, I underwent a 19 day hospitalization for Aspiration Pneumonitis whose steroid therapy led to a ruptured mitral Chordae, flash pulmonary edema, necessitating two MitraClips.

• A week after being discharged from the hospital, I was readmitted for a GI bleed. It was deemed to be the result of a recent PEG tube placement, did not require a transfusion, and was discharged after 2 days.

• Three weeks after the initial discharge, I suffered a massive GI hemorrhage necessitating multiple transfusions and an emergency endoscopy. They discovered the source of the bleed to be a duodenal AVM, cauterized it, and kept me for two days to stabilize my vital signs and hemoglobin. 

To all who have cared for me, I apologize for being a difficult patient, for being selective in the recommendations I follow, and in general for being stubborn and hard-headed. I think I know my disease and I fiercely act to defend and protect it.

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The ALS Association:  ALS remains a frustratingly, poorly understood disease. It is not for lack of trying by the ALS Association. They are the largest philanthropic of ALS research in the world, having committed over $154M over the last ten years. They are at the forefront of public policy, working to improve the lives of people living with ALS and their caregivers. Diane and I enjoy the benefits of this advocacy. Finally, they support a nationwide network of Certified Centers and Clinics.

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The ALS Clinic: The ALS Clinic is the mainstay of care for patients diagnosed with ALS. The multidisciplinary care model brings together a team of specially-trained health care professionals who can address the many needs of people living with ALS, allowing them to receive care from each discipline during a single visit. The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional and an ALS Association liaison. The ALS Clinic staff is, for many patients and their families, the unsung heroes in this never ending fight against ALS.

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Our Friends: We have been blessed by a community of like-minded friends. You have made living more enjoyable and have supported Diane and I on our journey with my disease. Thank you all !!

12-04-2024