My ALS Clinic team is getting a new doctor. Dr. Goslin called me and said they were putting together a newsletter to welcome him, and asked if I would write something about my experiences with the clinic. “Hopefully positive,” she said, and she needn’t have worried. I told her I’d be delighted. This is what I wrote.
It is not hyperbolic to state that ALS is one of the worst things that can happen to someone. Second perhaps only to Alzheimer’s disease in the completely undignified and terrifying way it kills, a diagnosis of ALS is absolutely devastating. It is also not hyperbolic to state that one of the best weapons against the ravages of this disease is the multidisciplinary ALS clinic. I personally cannot imagine going through this disease without my care team. A dedicated team of experts coming together to get the big picture and provide not only treatment, but expectations and support, is a luxury very few people are ever gifted with.
The ALS clinic makes the journey not only better, but perhaps even possible at all. Scheduling so many appointments with so many separate providers would become a job in itself; a Herculean task when one is already exhausted from just continuing to be alive. One day every three months for a four hour whirlwind tour of health is a tremendous relief of burden, even without considering the travel times. In addition to the vast benefit of freed time and effort, the end-of-day consultation when the whole team comes together to talk about me as a whole and complete person, instead of a series of interesting little snippets, provides for a much better plan of attack. A completely holistic and complete picture of me as a person with ALS, instead of a case file of how ALS is affecting Patient X with regards to diet/respiratory/insert-your-favorite-discipline-here. It is so much better for the patient when doctors talk to each other – who knew?
ALS affects each person differently, and we collectively know so little about it that research on one’s own is almost pointless. It’s only through the collective care and knowledge of the team at Providence that I’ve been able to get a grasp on my disease at all. Every question I ask is answered, every minor complaint met with compassion and understanding, and above it all, the concern I’m given is genuine. I’ve never had such a beautiful working relationship with medical professionals before. The care and compassion of this clinic’s providers are one of the greatest tools a person with ALS could ever hope to have; a wonderful consolation prize.
If ALS is a Pandora’s box of symptoms and troubles, then the ALS clinic is the remaining hope. I’m wholly grateful for this resource. I literally could not do this without it.