We have been on this journey for over 15 years now and I have written before on the topic of creating our team of providers. It is a concept that I have never understood but have finally made peace with. I do think it would be wonderful if all of the professionals working with my husband communicated with each other or perhaps had team meetings where they would discuss his challenges. I know that this is a totally unrealistic expectation and congratulate anyone out there who may have found some semblance of this on their journey, we certainly haven’t.

What we have found are professionals who are able to provide different pieces of his treatment. He has had multiple physical therapists over the years, they keep moving on. He has had a couple of different occupational therapists but they never really clicked with us. The only constant people on his “team” are his Primary care physician and his Neurologist but even those people are the second versions when his first folks retired. The connection between these two is that they both work for the same health organization but I’m pretty sure they’ve never discussed my husband’s care in any way.

What I have finally concluded is that his “team” is simply a list of phone numbers for medical practitioners, or at least their offices, I can call when things go haywire. We keep records of all his contacts with each of them and can share as needed with other professionals he sees. He is the connecting factor on this team and the rest of them are simply extras brought in to play when it is their turn. Asking for more than that is simply an exercise in frustration and futility.